Category: #alzheimers

You think you can. You said you will. But, do you have the knowledge and expertise to do it safely?

Most of the time we don’t think about all the consequences before we jump in and do what we do. Maybe it isn’t really consequences, but more the techniques and training you will need for certain tasks.  Unfortunately, some caregiving tasks are not on-the-job training. They can be dangerous to your loved one and to you if not done properly.

July 6, 2022

Find your strengths and your “not-so-good-ats” (weaknesses). Find your helpers. Have them figure out their strengths and “not-so-good-ats” too. You will have to honestly assess your abilities, your capabilities, and your training needs.

You know that there are some things that you can do, things that you can take care of and things that others will need to handle. Knowing is always better. It helps you to make a plan, make a schedule and prepare for the future.

Sure, you can fly by the seat of your pants and find yourself in a constant state of managing by crises. Talk about exhausting, frustrating and maddening, this will do it. Planning for what you can plan for makes everyone feel more safe, secure and settled. When the unexpected arises, you can handle it easier and with less stress.

Some tasks that caregivers do, provide and handle.

  • Buy groceries, cook, clean house, do laundry, provide transportation
  • Help the care receiver get dressed, take a shower, take medicine
  • Transfer someone out of bed/chair, help with physical therapy, perform medical interventions—injections, feeding tubes, wound treatment, breathing treatments
  • Arrange medical appointments, drive to the doctor, sit in during appointments, monitor medications
  • Talk with doctors, nurses, care managers, and others to understand what needs to be done
  • Spend time handling crises and arranging for assistance—especially for someone who cannot be left alone
  • Handle finances and other legal matters
  • Be a companion
  • Be a (usually) unpaid aide, on call 24/7
  • Be some emotional support
  • Be backup care and extra care when needed
  • Take care of lawn maintenance, outside house maintenance
  • Help with wheelchair usage
  • Help with oxygen usage
  • Help with CPAP machine usage
  • Help them walk with a belt to decrease fall risks
  • Help turn them and move them in bed
  • Help with hearing aid insertion and removal
  • Help with false teeth
  • Bathe them (maintaining modesty and dignity)
  • Change sheets with them in the bed
  • Pay bills
  • Housekeeping
  • Laundry
  • Help/Monitoring physical therapy exercises at home
  • Checking blood sugar (how and when)
  • Checking blood pressure
  • Checking weight
  • Handle a crisis or an emergency
  • And much more

As you can see, some of these things you can do and handle. Others may take some training. I know that there are online training courses and probably some in-person training places in some areas. You will need to search in your area for what is available.

Tennessee Department of Health

NFSP

Meet Caregivers Caregiver Training

Caregiver Training online course

A Place for Mom trainings and videos

APFM videos and courses

These will get you started.

Do you have the physical strength to transfer the care receiver? Do you have the physical strength to help someone get into and out of the shower or bath that is mostly dead weight? Toileting and bathing are intimate experiences and are very tough to handle. Not everyone can or will learn do it. It can be very unnerving and very uncomfortable. Your loved one will feel the same way. Be patient and respectful. It is going to take more time than you think for bathing.

Personal hygiene is probably the hardest to do. No one likes it, but it is necessary. You will have to make the decision to do it, all of the love you feel for them will not make it any easier.  You will have to use discipline to get it done. Get yourself trained. The training will help you to feel more comfortable with doing it safely. The training will help you increase your confidence. The training will help your loved one feel more safe and secure.

You are more apt to be able to help with personal hygiene if you have been properly trained. As many family members as possible need this type of training. It is a learnable skill. Focus on the positive aspects of them being clean. Think about how you feel after a bath or shower. You do feel better. You do rest better. Teeth brushed, hair combed, lotion on body with clean clothes makes everyone feel better.

Full bathing two or three times a week is good enough. Do spot cleaning on the other days. You want to keep the skin from breaking down. You want to prevent infections from happening. A daily bath for dementia patients is better because they like routine. Lotion up after the bath. You can find your routine and rhythm.

What if you have a bad back and you need to help your loved one out of a chair or from the floor. How can you do that without hurting them or yourself? Learn the techniques. How much dead weight can you lift safely? Get yourself trained.

When you can no longer do personal hygiene or lift and transfer safely, it is time to bring in home care help or begin the transitioning to assisted living/nursing home.

Pat

One of the tolls of caregiving … Negative Emotions

You may try stuffing negative emotions down, or you may just ignore them … it will work, for a while. Then watch out! They will come out and it rarely will be in a productive way. Recognize them. Acknowledge them. The emotions you are feeling are valid.

June 29, 2022

Of course, you love them and want to help them. You think that because you love them and you want to help them, everything will be okay. It won’t. Dueling emotions and feelings will arise. It usually becomes overwhelming in a few short months.

Be healthier. Be more on top of things. Be accepting of what and how you feel. It is okay to feel resentful sometimes. It is okay to feel lonesome. It is okay to feel angry at your loved one’s frustrating behavior. You will have some thoughts and feelings that you will feel guilty over. Sadness will creep in. You will probably start grieving for them a little while after the diagnosis.

It takes a lot of energy and effort to hold in your feelings. Stifling your feelings and emotions can cause high stress, sudden angry outbursts, unhealthy life choices, problems sleeping, increased risk of depression and hopelessness.

Will you give yourself permission to say what and how you are feeling? You need a trusted person that will listen to you and not judge. You do need to vent. You may also need to tell the person that you are talking with that you just need to vent. You are not looking for solutions or suggestions. This is where support groups can help, too.

Don’t feel guilty about your feelings.

That is always easier said than done. Do you have unrealistic expectations? Do you beat yourself up over negative emotions? It is okay to get mad. For example, your loved one has made a huge mess with the meal. It is at the end of the day and you are tired because it  has been a very tough day. Now, you have to clean up the mess. You have to get your loved one cleaned up and changed.

The problem is not that you have unpleasant feelings, the problems arise when you haven’t taken care of them and you hurt yourself physically or emotionally or you hurt your care receiver physically or emotionally. You don’t bottle them up and you don’t let loose in front of your loved one. What will be your safe outlet? Take care of the mess and your loved one, then find your ways to decompress.

Suggestions:

  • Call or text with a supportive friend, family member or another caregiver
  • Go to a support group meeting
  • Cry
  • Go for a run or walk
  • Journal – let it free flow and write whatever comes up
  • Find a punching bag (a real one or a pillow) to punch, throw or scream into
  • Cleaning
  • Take a break, call in reinforcements
  • Take a hot shower or soak in a bath
  • Watch a TV show or a movie
  • Whatever is healthy and works for you

Caregiver guilt – the self-imposed “oughts’,” “shoulds,””shouldn’ts,”  and “musts.” Doing or saying what you believe is the wrong thing.

When the guilt comes, how about asking yourself what is triggering this? Perhaps an unrealistic belief about your abilities, the unrealistic “oughts,” or faults that are imagined or even unavoidable? You will feel guilty sometimes, don’t try to get rid of it, just accept it. Get comfortable with being uncomfortable. It is hard to accept reality sometimes.

Resentment – few people admit to being or feeling resentment, but it happens quite a lot. It is part of the duality. You love them and want the best for them, but you do feel resentment. Your life got hijacked by this new responsibility. You may be feeling resentment because of feeling slighted by others. Maybe your brothers and sisters do not help? Resentment really shows up when your own life is way out of balance. Yet, another reason to take care of yourself.

Anger – being mad for reasons that are both direct (unfair criticism, a loved one that is not cooperating, too many problems that day) and indirect (you are tired from working full-time, helping your loved one, and the lack of sleep, frustration over the lack of control, disappointment,) Chronic anger and hostility has been linked to high blood pressure, heart attacks, heart disease, stomach problems, headaches and low back pain.

Learn to express your anger in healthy ways. When you blow up or explode, what do you leave in your wake? Who do you hurt? Learn to self-soothe, take a time out, find a constructive way to express your anger. It will take work and practice, but it can be done and you will feel much better and so will your anger targets. Count to five. Take 10 deep breaths. Let your more rational mind catch up to your reactive reptilian mind.

Worry – Worry seems to be good intentions run amok. Our brains need something to focus on or to be engaged with. How many of you are good at ruminating? I know that I can be very good at ruminating. It does nothing but keep me stuck. It is a time waster. It is an energy deplete. It does not change anything. You can “what-if” yourself to death.

Set a timer for 5 minutes and allow worry. When the timer goes off, you then look at the possible solutions to what you have been worrying about. What will be productive? What can make a difference? Who do I need to call?

Loneliness – Caregivers are lonely. Friends step back. Co-workers step back. Some family members step back. You need your peeps. You need them to be present in your life. Go out for lunch or dinner every week or two. Have an afternoon tea and dessert. Take a couple of hours to catch up, laugh, watch a movie, exercise. If you find that your loved ones or friends have stepped back, it may be because they do not want to add to your burdens or they don’t know what to do or how to help you. Be direct and upfront with them. Tell them that you want them to ask you to do things. Tell them that you do want to go out. Tell them to text you or call you and if you can’t talk then that you will contact them later.

Grief – When someone deals with a long-term illness, the grieving process can start soon after diagnosis. Definitely, when the loved one begins to decline. Anticipatory grief is what it is called. I didn’t know it at the time, but that is what happened with  me. You are grieving that your loved one is losing their abilities to be the independent person they once were. You are grieving the loss of their abilities that will come.

Defensiveness – It is okay to bristle at some things that people say. Try not to have a knee-jerk reaction to everything that has been said. If you are having a strong reaction to what the other person is saying. Sit with it a minute and figure out why you are feeling defensive. Realize that being overly defensive makes you closed-minded. The kind of person that can’t see the forest for the trees. Most of the time, people are trying to help. Not everyone, but, most are trying to help. The only thing that I will ask you to do is to listen to the suggestion(s) and give them some thought. You get to decide what is best for you and your loved one.

Find support. Find humor where you can. We need to laugh. Even using inappropriate humor is a coping mechanism. Don’t feel guilty about laughing or finding humor in the stressful times. The absurdity of things will make you shake your head. You are not laughing at your loved one. We all know how serious these chronic health conditions are, but we also know there is stupid shit that happens too, and it is funny.

Emotional Acceptance – It has happened, you have an emotional pain. 

Try this exercise when you feel safe.

  1. Identify the emotion
  2. Close your eyes and put the emotion 5 feet in front of you (you want to look at it)
  3. Give your emotion a size, shape and color – watch it and recognize it for what it is
  4. Let that emotion return back inside of you
  5. Reflect on what you noticed. Did you notice any change in the emotion when you got some distance from it?

Will you be willing to accept and experience the negative emotion? By accepting the emotion, you are accepting the truth of your situation. You don’t have to expend your energy in trying to deny what is happening. You can focus on solutions. When you accept the emotion, you can be curious about it. Why is it arising? What is it trying to tell you? What tools in your emotional toolbox will help you navigate this emotion and diffuse it? Negative emotions are not fun, and accepting them will not kill you. If you want to lose the destructive power of negative emotions, accept and acknowledge them.

Acceptance is acknowledging the moment as it is, right now. No judgement.

Pat

Maybe, you aren’t cut out to be a caregiver.

Or at least, you are not cut out to be a hands-on caregiver. Maybe, you are more of the management type who makes sure that things are handled and done. Maybe, you are the visiting regularly and running errands type. Maybe, you are the do everything but the personal hygiene type. Then again, maybe you are not the caregiving type at all.

June 22, 2022

4 Common signs that you are not cut out for caregiving.

  1. You are not patient.
  2. You do not have the time.
  3. You are finding excuses not to do it.
  4. You cannot do the kind of care required.

There may be times that you have to jump in and do the caregiving due to a sudden illness, surgery, or injury. You suck it up and handle it, for a short period of time. Short period of time is the key. Now that the immediate “danger” is over, it is time to reassess the situation and the needs.

What you can do in an emergency, usually cannot be sustained over a long period of time, to me, a long period of time is anything over a month. You get worn down, everything else in your life has been put on hold. You can’t put everything on hold for very long. Relationships, jobs, careers, kids, friends, other commitments require your attention. Our lives are in flux and we do pay more attention to our jobs at times and other times we pay more attention to family and friends. Forget balance, there is no such thing. Just be fair and disciplined with your energy and time. No one likes leftovers all the time.

Every family has its own dynamics and history. Sometimes it is functional and good. Sometimes it is very dysfunctional and bad. There may be estrangement. There may have been verbal abuse, physical abuse or sexual abuse. You get to decide what you will and will not do. You may hear stupid crap from outsiders who have no clue about your experiences, if you distance yourself from your family. You do not answer to them. You do not have to acknowledge what they have said or explain any thing to them.

Yeah, I know, we chased a couple of rabbits. We always get back on track, eventually.

Depending on the needs of your loved one, you may or may not be able to be a good caregiver. What happens if they need to be lifted, transferred or dressed and you have no training in how to do that appropriately? If you don’t do it safely, you can hurt yourself , them or both of you.

Even if you have a good relationship, caregiving may not be right for you. Maybe conflicts have started to rear their ugly head. It would be better for everyone if there was some separation and other solutions found. Sometimes the caregiver’s own physical or emotional health prevents them from being someone else’s caregiver.

The care receiver’s needs have increased and now you find that you cannot provide the care needed. Learn to say, “No.” Have the conversation and look for alternative solutions. You will feel guilt, give your heart time to catch up with your head (what you know). Just as the word “caregiving” means different things to different people. The word, “no” means different things too.

It may mean that I can not do all that I have been doing, but, I can do _____________________. Maybe, “no” means that you are tired physically and mentally. Maybe, “no” means that we need to re-evaluate the situation and change some things.

Caregivers will benefit from learning to set boundaries and also to express their feelings. Ideally, you will learn these things before you are an asshole to everyone else. Use “I” statements. “I” feel, “I” can, “I” cannot, “I” can no longer, etc. Thou shalt not use “You ought to,” “You should,” “You need to,” types of statements. You will be starting a fight. Get rid of the “shoulda, woulda, coulda’s. They are not helpful. They keep you stuck when you need to move forward.

Let’s talk more about guilt. We will all experience it. Not all guilt is bad, so pay attention to what it is trying to tell you. Is it calling to your attention that you wanted to do something, but then you didn’t? You can fix that by changing your own behavior. For example, if you were going to cook two meals and take them over, but didn’t…you can decide what to cook and when to take over with some follow through. Boom! It’s done. IF you are feeling guilty because you cannot change the unchangeable, then hold on a minute. You are not that powerful. You aren’t even responsible for other people’s feelings. Remember, thoughts are just thoughts until you put action to them. Granted, sometimes you need to let the thoughts go. Getting rid of the “shoulds” in your head will certainly help to stop the guilt cycle.

Are you feeling guilty because?

  • You aren’t spending enough time with your mom?
  • You aren’t spending enough time with your spouse and kids?
  • You aren’t taking care of yourself?
  • You aren’t focused at work due to your caregiving to-do lists?
  • You forgot  to do something that your dad needed you to do?
  • You let your mom  stay in her own home too long?
  • You moved your mom into assisted living?
  • You resent the time caregiving takes?
  • You think your life would be easier if they died?

Acknowledge that you feel guilty and then move on. Guilt won’t kill you but it will keep you stuck.

Most of the time, your feelings as a caregiver are completely normal.

  • It is normal to feel frustrated, in general.
  • It is normal to feel frustrated with the time it take your loved one to do anything.
  • It is normal to feel anger at times.
  • It is normal to want all of this to be over.
  • It is normal to hate yourself for feeling certain ways.
  • It is normal to silently scream in your head.
  • It is normal to enjoy aspects of your time together.
  • It is normal to wonder  if your marriage will make it through this.
  • It is normal to hate missing your kids’ games.
  • It is normal for you to be numb and not feel anything, just handle it.
  • It is normal to feel guilty when you take some “me” time.
  • It is normal for you to want to throat punch the next person that tells you that you should take care of yourself.
  • It is normal for you to want to run away.
  • It is normal for you to miss your job.
  • And, a bunch of other things.

Do you have boundaries? Boundaries keep us safe. They are our non-negotiables. Our individual or family values that we use to guide our choices. Find yours. A boundary is something that you must have or something that you cannot tolerate. It is going to get touchy here – sometimes we get our non-negotiables confused with important needs.

Examples of non-negotiables:

  • Your physical, mental and emotional well-being – What will you do to protect them?
    • What won’t you do to protect them?
  • That you speak to yourself in a kind manner.
  • A healthy relationship with yourself – Eating nutritious food, walking, running, working out, reading for pleasure
  • Keeping your word to yourself and others
  • Your core  values – honesty, love, joy, happiness, reliability, respect, openness, trust, accountability, etc.
  • I will be kind to myself, when I make mistakes
  • Having fun
  • Resting/Sleeping

So, what are your governing values? The principles that you live your life by? The things you will and will not tolerate? Find 3 or 4 that are valuable to you and how you want to live your life. They will make it easier for you to answer questions. They will make it easier to say “yes or no.” Another name for non-negotiables for me is deal-breakers.

No one is perfect. We will all mess up, from time to time. What is the pattern? Do the same things keep happening over and over? Are you making allowances for them/it? Why?

Pat

What does your temperament and your traits have to do with caregiving/helping loved ones?

Think about it, some folks can take on caregiving chores and still be happy and others are absolutely miserable. They both have frustrations. They are both exhausted. Both of them are doing the best that they can.

June 15, 2022

Some of you don’t know that you are a caregiver. You think you are helping them out. It could be your mom or dad. It may be your husband, wife or significant other. We are resistant to be caregivers much less be called a caregiver. We really do not want that responsibility, do we?

Maybe that is just me, but I suspect that others out there feel the same way as I do. When my mom needed help, I did not consider myself a caregiver. She just needed help and we helped her. Daddy was the primary caregiver, I tried to support both of them, in ways that I could. With daddy, it was about listening to what he was going through. The frustration, the anger and the not knowing what to do. With mama, it was about listening to her anger, frustration and the irrational thoughts. Mama did not need personal hygiene care, she could take care of that herself, with modifications to the house.

To hear my daddy, say that he did not know how much more he could take, was hard. To hear my mama, say that she was going to divorce my daddy, was hard. To be summoned down to the house (an hour away), many times, was hard. I was working 12 hour shifts at the pharmacy and had three boys at home. Our stress was mental and emotional, not so much physical. It took about four months to get things back to “normal.”

I was dealing with a dad that did not believe in mental health treatment such as talk therapy and that medications might help. I had a mom that had changed both physically and mentally due to MS and mini-strokes. WTF. Now, dammit, this was my area of expertise and my own daddy is not listening to me. I finally convinced them to go to the neurologist and let the neurologist see what could be done. I worked behind the scenes with a message to the neurologist. My mom got the meds she needed and a couple of talk therapy visits. Things went much smoother after that.

It was good to hear from my dad that my mom was back to her usual fun self. It was good to hear my mom laugh again and be the jokester that she was. She cheated at the Rook card game; you know. We always had to make her stand up and turn out her pockets for that damn rook card.

During all of this, I was tired and frustrated. I wasn’t angry. I wasn’t miserable. I didn’t hate every minute of help that I provided my parents. I didn’t hate that I was missing things with my boys. Disappointed, sure, but I was needed elsewhere sometimes. If your family needs help, you help them.

Other folks are angry. Sometimes, they are resentful and miserable for “having” to help. Maybe, the difference is in how you look at it or feel about your loved one? Feeling like you must help instead of wanting to help may be the key, I don’t know. Did you accept your role as a helper or caregiver out of love or obligation? Most of us have had no training and very few skills in this arena. It is on-the-job training or more likely, flying by the seat of your pants. If you are providing personal hygiene care or you are having to physically move or transfer your loved one, you do need training in how to do it appropriately and safely.

Personality Traits of a Happy Caregiver

  • Patience – especially with questions, angry outbursts, length of time to do things
  • Compassion – understanding what the other person is dealing with
  • Empathy – understanding the feelings that others may be feeling or thinking
  • Humor – finding something to laugh about in these difficult situations. We know how serious things are, but we need to laugh. Not at the person, but at the situation or other things.
  • Present – be in the here and now, focusing on what they can do
  • Detail Oriented – good management skills
  • Able to Accept Help – a good caregiver lines up a team to help out
  • Able to Set Boundaries – know your own limits and say “no” when needed
  • Flexible – able to cooperate with others
  • Assertive Advocate – getting the answers needed, making sure their loved one has what they need; being firm but not being an asshole (at first)
  • Creative – some days things will work and other days you have to find something else that works
  • Good Communicator – learn to communicate with your loved one in the way that they can communicate, especially if they are non-verbal now

How many of these skills do you have? Be honest. There will probably be a few that are not in your wheelhouse. That is okay, are you willing to learn? Are there some skills that you know you don’t have and are not good at? That is okay too. It is great to know what you are good at and great to know what you suck at. Use your strengths to your loved one’s advantage. Others will have different strengths to help. We can all improve.

Know this: You are perfect as you are… but you can always be better. We all have the struggle or tension between self-acceptance and self-improvement. We have talked about this before. It is progress over perfection.

Are you smart enough to know when you don’t know? Do you know how to find good and trusted information? Do you know when you are out of your area of expertise and need to hire that expertise?

Self-confidence in your caregiving abilities comes with time and patience with yourself. It comes with learning new ideas and ways to help. You may have to silence your inner critic. Your negative thoughts are not always right. They are only thoughts, so challenge them.

Confidence in your abilities is good. Over-confidence is bad. The goal is appropriate confidence. Focus on the effort. Keep learning new things. Listen to what others have to say.

A reluctant or sad caregiver has feelings of unfairness or irritation. You may even feel resentment. Resentment at the care receiver or resentment at the others who don’t or won’t help. Not everyone is cut out to be a caregiver.

Pat

Can you work with your siblings to provide care for your mom?

I have seen both ends of the spectrum. I have seen the complete breakdown and fights between siblings trying to help their mom. I have also  seen the absolute success of siblings working together to take care of their dad.

Why can one family make it work and another family implode?

June 8, 2022

You know people that can put the “fun” in dysfunction. It can be amusing when the stakes are low. What happens when the stakes are high and everyone needs to do their part? It’s not so funny then. It is downright hard and very stressful.

Family dynamics, sibling relationships, parent-child relationships, rivalries, blended families, issues from the past, issues from the present, etc. Relationships can be complicated. Relationships can be messy. There may not be a relationship anymore.

First, you need to decide if you want to help your mom or dad. No judgement here, I have heard the stories of how you were treated as a child by your mom. I have heard the stories of what you endured as a child and how you worked hard to get out of that situation. No one is required to help or provide assistance to their mom or dad. It was usually one or two of the kids that had to endure the hell. The other children were spared. This is also where you and your siblings will disagree about what happened in the past. We can only speak about our own experiences and perceptions.

The first time that I heard of people being mistreated or abused when they were kids, it was hard for me to imagine. I had no reference point for that. My brother and I knew that we were loved and wanted. We got spanked, but we were never abused. You don’t know what someone else has been through. It is always hidden and it is never talked about. Why was it so hard for me to imagine? Because, I could not imagine my mama or daddy doing to me what other parents did to their kids. After hearing about others being slapped, locked in their room or being starved, you start to realize that not everyone grew up like you did.

For some of these kids, they did not admit it to themselves until they were in their 30’s or 40’s and it is not easy for them to talk about. I get why some folks cannot or will not help to take care of their parents either from a distance or hands-on care. Your own safety and mental health needs are absolutely of paramount importance.

The other things that we need to look at are the siblings that do not want to help because they don’t want to help. They have no real reason other than it will affect their own lives. Tough toenails, sometimes you have to do things that you don’t really want to do. It is called being an adult. Don’t misunderstand me, I am not saying that you have to do the hands-on care, but you do need to be involved in seeing to their care. See, right there, I used my own feelings and my own background with my own family to make a generalized statement about caring for a loved one. I apologize to you for that. I don’t know your experiences and I respect your decisions.

 For this article, I am assuming that you have siblings and you do want to help your mom or dad. You do love them and you do care, you may not know where to start or what to do first. Safety is of paramount importance. Are they safe? Are they in a safe environment? Do they have nutritious food and are they eating? What about drinking their water every day? Taking their meds appropriately? Showering/Bathing and keeping up with their personal hygiene? Are they putting on clean clothes or are they wearing the same thing every day? What are their limitations? Are they physical limitations, mental limitations or a combination of both?

It seems as though there is always a primary caregiver and then supporting caregivers. All of you may be hands-on helpers or a combination of hands-on and have in-home help. Being a caregiver or helper is hard. It is demanding, frustrating and tiring. Not everyone is good at being a hands-on caregiver. But, they can be great at other things.

Communi-friggin-cation is the key. You have to talk to each other. You have to work out a schedule. You have to figure out what your strengths are and what you are willing to do and what you are not comfortable doing. Maybe, you are good at doing most everything but personal hygiene tasks. Maybe personal hygiene tasks are okay with you, but you hate cooking and doing the laundry. Maybe your mom or dad needs help getting up out of bed or a chair. Do you know how to help them safely? You probably need training in how to lift and transfer them safely.

What happens when one sibling see things differently than another sibling with regards to where the parent is exactly “at” in their disease progression? De-Nile (denial) ain’t just a river in Egypt. When you cannot agree, it is time for a frank discussion with a social worker, their physician or me. Why would I say to meet with someone rather than tell you to roughshod over your sibling? Remember, your parent may tell one sibling one thing and something different to another. It is usually not malicious. They are trying to keep up appearances that they are okay.

A neutral third party can be objective, so that you and your siblings have a better understanding of where your loved one is, right now and also, what is to come. It is hard. We call it the practice of medicine, because there are no absolutes. We make the best decisions that we can with the information that we have right now. As the status or information changes we will make adjustments.

Some of you are thinking, but my sister is a looney tune. Others are thinking, my brother is the baby of the family and is no help at all. Other complaints include –  My sister is a know-it-all and a martyr. My brother lives out of state and thinks everything is fine. All my sister/brother wants is for them to die and get their money. My sister and I don’t get along. You may even hear, “I can’t bear to see mom/dad like that.” There is some kind of hurt or conflict in the sibling relationships.

If you love your mom or dad and want the best for them, then do what is best for them. Keep that your main goal and focus. You have compartmentalized before; you can do it again. You will get distracted and you will harp on your sibling(s). When you start griping and yelling about what “they are doing or not doing,” maybe it is time to refocus on the goal.

Have the roundtable discussion. Keep the main thing the main thing. Decide who will do what and by when. Calendar it. Place the calendar on Google Docs so everyone knows what is happening. Include your triggers for when it is time to bring in paid help. Of course, you need to figure out how and who is going to pay for it. Ideally, it will be from your loved one’s money or a long-term care insurance policy, but that is not always an option. Can the siblings pitch in money to help? Some can and some cannot. Be upfront about what you can and cannot contribute financially and time wise. You can make a plan when you know who and what you have to work with. You are looking for progress, not perfection.

Clues That You Are Acting out of Emotional Needs or Fighting Old Battles

  • Your level of emotion is out of proportion to the specific thing being discussed right now. For example: getting into a heated argument about which of you should go to the doctor with Dad next week.
  • You or your siblings criticize the way you think another person is being, for example: selfish, bossy, uncaring, irresponsible, or worse.
  • You feel that none of your siblings understands what Mom needs the way you do and you are the only one who can do certain things.
  • You or your siblings generalize a discussion, saying, for example, “You always do this!”
  • You or your siblings criticize the way one another feels, for example, “You don’t care anything about Mom.”

Here, I stole this from Family Caregiver Alliance.

Tips for Winning More Support from Your Siblings

  1. Try to accept your siblings—and your parents—as they really are, not who you wish they were. Families are complicated and never perfect. There are no “shoulds” about how people feel. They are not bad people or bad children if they don’t feel the same as you do. If you can accept this, you are likelier to get more support from them, or, at least, less conflict.
     
  2. Do not over-simplify. It’s easy to assume that you are completely right and your siblings are all wrong—or lazy, irresponsible, uncaring, etc. Each person has a different relationship with your parent, and each person’s outlook is bound to be different.
     
  3. Ask yourself what you really want from your siblings. Before you can ask for what you want, you need to figure this out, and that’s not always as simple as it seems. First of all, ask yourself whether you really, deep down, want help. Many caregivers say they do but actually discourage help. So, think hard. Do you want them to do certain tasks regularly? Do you want them to give you time off once in a while? Or do you feel you have everything under control but you’d like them to contribute money for services or respite?
     
  4. Or—and this is a big one for many caregivers—do you really not want them to do anything but you’d like more emotional support? Many caregivers feel lonely, isolated, and unappreciated. If you’d like your siblings to check in on you more, ask them to call once a week. And tell them it would really help if they would say “thanks” or tell you you’re doing a good job. They are more likely to do this if you don’t criticize them for what they are not doing.
    • Ask for help clearly and effectively.
    • Asking is the first step. You might ask for help by saying: “Can you stay with Mom every Thursday? I have to get the shopping done for the week and it gives me some time to myself.” Don’t fall into the common trap of thinking, “I shouldn’t have to ask.” Your siblings may assume that you have everything covered so they don’t recognize the added responsibilities and “burden.” They are involved with their own lives and struggles and not so attuned to yours that they can read your mind. Also, if you’re not exactly sure what you want from them, you may be giving them mixed messages.
    • Ask directly and be specific. Many caregivers hint or complain or send magazine articles about the hardships of eldercare. But these strategies do not work well.
    • Ask for what’s realistic. People get more when they don’t ask for the impossible. So, consider the relationship your sibling has with Mom or Dad and ask for what that person can really give. If your sister can’t spend ten minutes with Mom without screaming at her, don’t ask her to spend time; ask for something that’s easier for her, like doing paperwork or bringing groceries.
       
  5. Watch how you ask for help—and steer clear of the cycle of guilt and anger.
    • Avoid making your siblings feel guilty. Yes, really. Guilt makes people uncomfortable and defensive. They might get angry, minimize or criticize what you are doing, or avoid you. That is likely to make you angry, and then you will try harder to make them feel guilty. They will attack back or withdraw even more. And round and round you go.
    • Sometimes your siblings will criticize you because they are genuinely concerned about your parents. Try to listen to these concerns without judgment and consider whether it is useful feedback. At the same time, be bold by asking for appreciation for all that you are doing—and remember to say thanks back when someone is helpful.
    • Be careful of your tone and language when you request something. It’s not always easy to hear the way we sound to others. You might think you are asking for help in a nice way, but if you’re angry, that’s the tone your siblings will hear. And they’re likely to react in unhelpful ways.
       
  6. Get help from a professional outside the family. Families have long, complicated histories, and during this very emotional passage, it is often hard to communicate with each other without overreacting, misinterpreting, or fighting old battles. Even the healthiest families can sometimes use the help of an objective professional. People like family therapists, social workers, geriatric care managers, physicians, or clergy can help siblings establish what is real about a parent’s health and needs in order to help distribute responsibilities more equitably. In family meetings, they can help you stay focused on the topic at hand and help you avoid bringing up old arguments.
     
  7. Steer clear of power struggles over your parent’s assignment of legal powers. Whether or not you have been given your parents legal powers over finances or health, you need to remember that it is your parent who has made these decisions. If you have your Mom’s or Dad’s power of attorney, be sure to keep detailed records and send your siblings statements about how you have spent Mom’s money. This may seem like a lot of extra work, but record keeping is required by law, and being open will reduce distrust or distortion—and lawsuits. If a sibling has been given legal power, try to accept your parent’s decision and don’t take it as a personal attack on you. Do your best to work with the sibling who has the authority by presenting expenses and bills in black and white. If the sibling who has the purse strings doesn’t cooperate, then bring in a professional to explain your parent’s needs and to mediate. If you are concerned about manipulation, a changed will, or undue influence, contact your local Adult Protective Services.
     
  8. Don’t let inheritance disputes tear your family apart. If you feel wronged by the way your parents have divided their money and property, it’s natural to be upset, especially when you are grieving. You may feel that you deserve more because you have cared for your parents. If that’s what you feel, you need to discuss this with your parents while they are alive and can make these decisions. If you suspect foul play by another sibling, then this is the time to consult an attorney or Adult Protective Services.

Yet, research shows that most parents feel a need to leave their estates equally as a sign of their equal love for all their children. When they divide things unequally, it’s often because they are worried that a particular child will be in greater need. Whatever their reasons, remember that it was your parents, not your siblings, who decided this. Think hard before you take your anger or disappointment out on your siblings. They are what remains of your original family, and for most people, this relationship becomes more important after parents die.

The above 8 steps are from Family Caregiver Alliance

Will you agree to operate as a team for the best quality of life possible for your mom/dad? Teams set clear goals and responsibilities for team members. Everyone has a skillset, use the best person for the job. Set weekly calls with an agenda that has 3 things on it. Never more than 3. Focus on the here and now. NEVER start a statement with “you.” Use, “I feel, about a situation. Your bothers and sisters may have different ideas about the care needed. That is good. Talk about it and see if better options arise.

Be fair about the division of responsibilities. When you get off track, go back and focus on your goals for your mom or dad. You did write them down, didn’t you?

Shameless plug – I help families figure out where they are, what they will need in the future, develop an action plan to move forward and guide them.

Pat

When is it time to hire in-home caregivers?

A Wednesday, like any other Wednesday, you go for a visit to your mom’s house for a mid-week visit and to take her a few groceries and you need to pee before you leave. You go to the hall bathroom, turn on the light and the toilet does not look like it has been cleaned in a month. There is a ring around the bowl, dirt on the floor, the countertops are visible soiled and there is soap scum and mineral deposits in the sink.

You know what happens next, don’t you? You start reasoning things away. “Oh, she must not clean this bathroom every week, since she does not use it.” “She must not feel good or she may be tired.” “She is missing a lot of dirt, dust and grime, we probably need to get her to the eye doctor.”

May 25, 2022

All of those things may be true. But, there could be other reasons. Do you ask about the hall bathroom or do you just observe, make a mental note to check on it next week? Are you brave enough to check out the master bedroom and bathroom?

What do you see in the kitchen? What do the countertops look like? Is the sink full of dirty dishes or are the dirty dishes placed into the dishwasher – but not washed? What does the refrigerator look like? Expired food? Old leftovers, that are growing mold.

How many excuses do you hear? “Oh, I’ll get to it this weekend.” I was sick last week.” “It looks good, to me.” “I’ll do it later.”

Maybe, they are just getting older and they need a little help with the cleaning. Arthritis is a bitch. Low back pain can have you down and out. Look for clutter or things not put away. Look for clothes in a pile or basket, clean, but not folded. Look for garbage not taken out regularly. What does the house smell like?

Can you determine if there are physical limitations that make house cleaning hard, if not impossible now? Hire a housekeeper or clean it for them.

Let’s go 6 months to a year or so down the road. You begin to notice other things …

  • They wear the same outfit multiple days in a row.
  • Their hygiene is noticeably in need of attention.
  • They are telling you they can’t find important items or you notice they are regularly missing must-haves like glasses, hearing aids, etc.
  • They are missing trash day, and trash is accumulating at the house.
  • They are not opening their mail and may have overdue bills.
  • They seem more quiet or lonely.
  • They have unruly hair
  • They look scruffier, more so than usual
  • They have lost or gained weight (due to frozen meals or junk food)
  • Unexplained bruises (usually due to falling)
  • They are forgetting appointments
  • They are forgetting words or repeating themselves
  • They have a personality change

When you notice some of the things listed above, it is time for an assessment and a plan of action for in-home care. They will not usually volunteer any information. They will, however, deny any problems exist. They may or may not realize they are forgetting things. When they do become aware that things are not “right,” or that they really are forgetting things, watch out. They can get really uptight and angry. The goal is not to set off the dynamite, it is to diffuse it.

You may hear the phrase Activities of Daily (ADL’s) living, which are self-care tasks that can no longer be performed or are very hard for them to do now.

  • Get into/out of bed or chair
  • Toilet hygiene
  • Bathing or Showering
  • Getting Dressed
  • Personal hygiene
  • Eating
  • Walking / Climbing Stairs
  • Safety /emergency responses

Another phrase is Instrumental Activities of Daily Living (IADL’s). These are the activities related to living independently by themselves.

  • Shopping/ Getting Groceries
  • Transportation (Driving/Public)
  • Preparing meals
  • Managing Medication
  • Using Phone/Technology
  • Cleaning / Maintaining home
  • Running Errands / Appointments
  • Managing Finances

A less common phrase is Activity Assistance or Domestic Activities of Daily Living (dADL’s). A person is no longer physically able to do ____.

  • Companionship/Socialization
  • Mental exercise
  • Hobbies requiring dexterity or fine motor skill
  • Care of others
  • Care of pets
  • Activities in the community
  • Lite exercise
  • Exertive exercise

Sometimes, it gets to the point that your loved one needs 24/7 care or a skilled nursing facility.

10 Signs your loved one needs 24/7 care.

  1. Frequent falls or compromised balance
  2. Confusion between day and nighttime 
  3. Difficulty eating or drinking without assistance
  4. Fainting or confusion due to dehydration
  5. Wandering from home or getting lost
  6. An increase in bathroom accidents
  7. Sleepwalking or wandering during the night
  8. After surgery, a hospitalization, or stay in a rehab facility
  9. Bedbound and/or developing bedsores
  10. Family caregivers are suffering sleep deprivation or have chronic stress that interferes with their own health, wellness, and quality of life

What type of in-home care would be best for your loved one and you?

  • Companionship – they are fairly independent but they are isolated or lonely
  • Help with ADL’s
  • Help with IADL’s
  • Mobility assistance – getting in and out of chairs or bed; toilet sitting and rising
  • Memory or Cognitive decline/impairments
  • Personal care
  • Preparing meals
  • Pet care
  • Taking them to Dr. appts, visit friends or family
  • Light housekeeping

Let’s go ahead and get in the housekeeping arena. What is light housekeeping? Light housekeeping is a task that the care giver does to help provide better care for the client. NOT the entire family!

Light housekeeping duties DO include:

  • Clearing away dishes after meals
  • Preparing/cooking meals
  • Drawing baths and setting out towels
  • Hang up towels and washcloths to dry or place in laundry
  • Cleaning sink, bath tub and toilet after use
  • Wiping down spills and sanitizing surfaces
  • Spot mopping
  • Changing bed linens
  • Dusting off surfaces
  • Tending to house plants
  • Taking out trash
  • Pet care – feeding, a walk and general cleanup
  • Cleaning up clutter
  • Sweeping and vacuuming floors
  • Organizing closets and drawers

Light housekeeping duties DO NOT include:

  • Moving furniture
  • Washing windows
  • Scrubbing carpets and floors
  • Shoveling snow
  • Mowing the grass
  • Raking leaves
  • Scrubbing shower or tub

The caregivers do not bring supplies with them. They are not housekeepers. They are people helpers and companions.

It is a good idea to write down what your loved one needs and wants. Write down what the family wants, too. Look at the lists. Do you need an in-home caregiver or do you need a housekeeper? Some of you need an in-home caregiver, but you want to use them as an in-home caregiver AND a housekeeper or a maid. That is not going to happen. So, to prevent any anger or resentment, everyone needs to be very clear on what will and will not be done. Do not assume.

Pat

Is it a psychiatric illness or a drug-induced psychosis?

First, what is psychosis? Psychosis is a term used to describe when a person interprets or perceives reality in a different way than those around them. Psychosis may be a symptom of mental illness, but that is not always the case. Nobody knows exactly what causes psychosis.

May 11, 2022

Observations

Suzi visited her mom, Val Thursday after work. Suzi checks in on her about twice a week. Val is 70, active with high cholesterol, high blood pressure. arthritis, and mild depression. Val takes her medication regularly and as directed. Suzi notices that her mom is not quite herself. Val cannot follow the conversation and does not seem to be able to concentrate.

The first thing Suzi thinks is, an UTI. Possible dehydration. They go to the Dr., but the urine test comes back clean. No infection and her electrolytes are all in the normal range. Hmm. Now what? Nobody seems to know what to do next, but wait and see.

It is now a week later and Val is not better and in fact she is a little worse. She cannot remember if she has taken her meds or not. She is unsure of what has happened over the last three days. Suzi is getting more and more concerned. This is not normal and her mom has never been this way before. Suzi wonders if her mom is developing dementia, Alzheimer’s disease or mild cognitive impairment.

In this particular case, her physician looked at her medications and had a consult with her pharmacist. They determined that most likely it was her blood pressure medication and/or her arthritis medication. Outside chance it could be anti-depressant med, but not likely. They began a withdrawal of HBP medication and started a different one. Val was some better, but not back to normal. It was not her arthritis medication; it was her anti-depressant medication. She was slowly weaned off of that and they did a wait-and-see approach to see if she needed to be on an anti-depressant anymore. Her mind cleared and she was back to her normal self.

While this case was a success, many more are not. No one thinks to check the medications. Why? Well, their thought processes go along these lines – She has been on these meds for three years or more. It came on suddenly, it must be a UTI or dehydration or she does indeed have the beginnings of mild cognitive impairment or a dementia.

Medications are not without risks and problems over time. As we age, our metabolization and kidney function decrease. We cannot clear meds as quickly or as easily as we once did. You know when your loved one is “not right.” You may not know what it is, but you know that something is wrong. Push for answers, never accept it is “just old age,” dementia, or other assumptions. Blood tests and urine tests need to be done. Medications need to be checked. Hydration and nutrition need to be addressed. We want to rule out any fixable problems.

Psychosis can be:

  • Due to stressful life experiences or trauma
  • Part of a neurological condition such as dementia. Alzheimer’s disease, or Parkinson’s disease
  • Triggered due to a brain injury
  • Medication side effects
  • Effects of illicit or illegal drugs such as marijuana or cannabis
  • Effects of alcohol withdrawal
  • Triggered by menopause
  • Triggered during times of severe stress or anxiety

As you can see, it is not black and white. Many things can trigger a psychosis. By the way, marijuana is not the gateway drug to addiction. Trauma is the gateway to addiction. The self-medication, whether it is alcohol, marijuana, cocaine, hydrocodone, heroin, etc., becomes the problem due to another problem. We have to deal with the primary problems first! Yeah, I know, we chased a rabbit there.

We don’t think about medications as causing a psychosis or a psychotic episode, but they sure can. Too often, we assume that it is a mental health issue. Maybe it is, but, we need to find out and rule out other fixable causes.

Understand that some classes of drugs can cause psychosis.

Classes of meds that may cause psychosis:

  • Muscle relaxants
  • Antihistamines
  • Antidepressants
  • Cardiovascular medications
  • Antihypertensive medications
  • Analgesics
  • Anticonvulsants
  • Antiparkinsonian medications
  • Chemotherapy agents
  • Corticosteroids
  • Stimulants

From the list above, you can see that the possibility is real that the psychosis is from a medication and not mental illness. Alcohol abuse or misuse is another inducer of psychosis.

Drug-induced psychosis usually only lasts until the medication/drug has cleared the body. Depending on the drug, the metabolization and clearing may take from 1 day to several weeks (if it is from a stimulant medication).

A healthcare professional needs to be contacted. They can decide where the safest place to “come-off” the medication will be. Drugs can affect different people in different ways. What causes a psychotic episode in one person may not cause a psychotic episode in another person. Genetics plays a part. Life experiences play a part. Pre-disposition to mental illness plays a part. Remember, mental health disorders can cause substance use or misuse on its own. The mental health disorder can be exacerbated or intensified by medication use, abuse or misuse, but it is not caused by the meds.

We should note that schizophrenia is not caused by drug use, abuse or mis-use. It may trigger schizophrenia symptoms in those people susceptible to schizophrenia.

Common signs and symptoms of psychosis includes:

Hallucinations – when you see, hear, feel or taste things that other people don’t

  • Hearing voices or sounds that others don’t
  • Seeing things that others do not see
  • Tasting things when you haven’t had or eaten anything
  • Feeling someone touching you who is not there
  • Smelling things which other people cannot smell

Delusions – unusual beliefs that other people in your “community” do not share, even though they feel real to you

You may worry:

  • That you are being followed by secret agents or members of the public
  • People are out to get you or to kill you (may be strangers or people that you know)
  • That a chip has been implanted in your brain to monitor your thoughts
  • That your food or water is being poisoned
  • That you are a powerful person or God

Cognitive impairments – these relate to mental action (learning, remembering, functioning)

  • Problems concentrating
  • Memory problems
  • Difficulties understanding new information
  • Having a difficult time making decisions

Alcohol, amphetamines, phencyclidine (PCP), cocaine, and hallucinogens are among the most common causes of drug-induced psychosis. Symptoms of drug psychosis include:

  • Paranoia and terror
  • Hallucinations. A person might see, smell, or hear things that aren’t there.
  • Delusions. A person may adopt demonstrably false beliefs, such as that a demon is pursuing them.
  • Dangerous behavior. A person might attempt to fly, harm themselves because a voice told them to do so, or become a danger to others. Some people who experience psychosis become aggressive.
  • Disconnection from other people or from reality. A person may appear catatonic or totally withdrawn.

Drug-related psychosis is distinct from other forms of psychosis in a few ways:

  • It appears while under the influence of or withdrawing from a drug.
  • It comes on suddenly.
  • It is typically more intense than other forms of psychosis.

Illicit/Illegal Drugs that most commonly cause substance-induced psychosis:

Methamphetamine

Cocaine

Marijuana

LSY

Peyote

Mushrooms

Ketamine (this is a Rx drug, but is used illicitly)

PCP

Ecstasy

This overview is so that you know and understand that medications can cause psychotic episodes. What signs and symptoms to look for? Contact your healthcare provider for withdrawal and monitoring needs.

Pat

When to take a rest day.

How caregiving is like working out, rest days are important.

April 13, 2022

Why is it okay to take a rest day or two from working out but, it is not okay to take a rest day from care giving or helping your loved one? Think about that. We have the research and the information about listening to our bodies. That rest days are just as important as workout days. That if you cannot mentally concentrate on a lifting day, you are better off skipping that workout. If you push through your chances of injury are greatly increased. Then what? You got it… you will have to take four to six weeks off to heal.

Helping out a loved one is the same kind of thing. Sometimes it is mentally exhausting and sometimes it is physically exhausting. You know that you need a break, but will you take a break? Will you push through? For how long? At what cost to you and your own health?

These are things that all of us need to think about. The problem is that we don’t think about these things. We just jump in and do. That is great, if it is for a short time. The problems arise after we have been helping for a longer period of time. Three to six months is what I consider a longer period of time. At about 18 to 24 months burnout has begun, if you have not gotten help or taken time outs.  

I get it. It is hard when you are in the big middle of things to think about what would be best for all involved. You get in to survival mode and you just do. Some of us don’t want to think about what would be best for us and for out loved one. Thinking is hard and it takes a lot of energy when you are learning new things or doing new things. Remember, you only have about three hours of focused energy per day to use. When are your good hours? When are you able to concentrate and work on detailed projects the best? The rest of the day, you can do the things that do not take as much mental energy or focus.

Developing habits are good for us. They decrease the expenditure of mental energy. Basically, when we have habits, we do them and we do not have to waste any mental energy or focus to think about the “who, what, when, where, why” things. We just do. We have already learned. Some folks call it discipline and others call it a routine.

As with most of us, the most aggravating thing is trying to figure out where to go for dinner. How much time and energy is wasted on this simple act? We ask each other, “Where would you like to go?” The reply is usually, “I don’t care, where do you want to go?” Yes, you know what is coming next. “How about the Roadhouse, you ask?” Wait for it …. The reply is … “I don’t want to go there.” Here comes the hard part … do you say this or just think it? “Obviously, you do care. So, where do you want to go?” The back and forth continues, until finally a place is chosen. How do you feel after this discussion? Tired? A little miffed? Wondering why it is a chore to pick a place to eat? Sometimes, you can give them three options and they still do not like any of them. But, they don’t have any options to give you. Why is that? Sorry about that, I digressed.

How does the rest of your evening go? If both of you can let it go, the evening will probably be okay. If one or both of you do not let it go, then chances are you will not be having pleasant conversation the rest of the evening.

I wonder how much better and easier it would be if one of us said, from the beginning, “I would like to go to the Roadhouse, do you want to go?” The other person can say yes or offer another suggestion. Then the suggestion could be taken or not and they can go or stay at home. Shoot, one person gets to pick this time and next time the other person gets to pick.

We are trying to get a consensus, but sometimes that is not possible. The same thing happens when you are a helper or care giver. You may or may not get a consensus. A “good enough” decision has to be made. NOT perfect. Progress, not perfection is what we are after.

If you do not have habits or routine, try this for two weeks and see how you do and how you feel. Plan your breakfast every day. It does not matter if you eat at home or go and pick something up. Figure out what it will be the night before. Pick out your clothes and shoes the night before. Stick to this routine for two weeks.

Hopefully, you will find that having a routine frees your mental energy for other things. What day or days do you clean the house? Do laundry? Change the sheets? Workout? Run or walk? Schedule them like an appointment, until they become a habit. When they become a habit, the less focused mental energy you will use and will have that energy to do other things. Learning to manage your energy is much more efficient than managing time.

Which of these fits you today?

8 SIGNS YOU NEED A REST DAY

1. YOUR RESTING HEARTRATE IS ELEVATED

2. YOU FEEL TIRED

3. YOU’RE MOODY

4. YOU FEEL SICK

5. YOU’RE ALWAYS SORE

6. YOU’VE HAD A FEW BAD WORKOUTS IN A ROW

7. NOTICE YOU’RE NOT GETTING ANY STRONGER

8. YOU FEEL THAT YOU NEED A REST DAY

From Tough Mudder https://toughmudder.com/blog/no-excuses/signs-need-a-rest-day/

14 Signs you need a rest day from being a helper or care giver

  1. Feeling “trapped” or hopeless
  2. Losing patience or compassion for your loved one
  3. Overreacting to small accidents
  4. Resenting or neglecting your loved one
  5. Withdrawing from your personal hobbies and friendships
  6. Oversleeping or not sleeping enough
  7. Overeating, not eating enough, or eating a lot of high-sugar foods
  8. Having health problems
  9. Abusing drugs or alcohol
  10. Having thoughts of suicide
  11. Making mistakes
  12. You are irritable
  13. Signs and symptoms of depression
  14. You feel exhausted most of the time

I can’t say it any better than Daily Caring has said it in their article.

6 WAYS TO MAKE IT EASIER FOR CAREGIVERS TO TAKE A BREAK

1. Accept that you’ll feel guilty
Guilt is a normal part of caregiving simply because you care – it’s never going to disappear. 

Don’t let this stop you from getting the caregiving help you need.

Taking regular breaks is the best way to maintain your overall health and your ability to provide care.

Besides, how good would you feel if you never took any breaks and your health declined to the point where you could no longer care for your older adult? 

It doesn’t do them any good if you’re not physically or mentally well enough to be their caregiver.

2. Don’t ask your older adult for permission
This isn’t a decision that your older adult gets to make. 

Many older adults refuse outside help because they’re uncomfortable with the idea. 

And someone with dementia doesn’t have the cognitive ability to make a rational decision.

When seniors refuse, they’re not thinking of your needs and are often not considering their own true needs either. 

That’s why you need to make the decision, regardless of how they feel about it.

All that matters is that they’re safe and well cared for when you’re not there.

3. Start before you really need it (if possible)
It may take some time to find the right person to help and for them to learn the caregiving routines. 

That’s why it’s helpful to find help before you really need it.

When you’re putting together a team of family, friends, and volunteers, it can be less stressful if you have some time to get the team in place and work out the details.

To make the transition easier, you could have someone come and shadow you until they learn the ropes and can be left alone with your older adult. 

Or, you could have someone come for a short time in the beginning and gradually increase their time as everyone adjusts to the new situation.

4. Combine paid services with help from friends, family, and volunteers
Hiring caregiving help can be expensive. But even if the cost is high, maintaining or improving your health is worth it.

Being open to different sources of help also lowers the cost of taking regular breaks. 

Ask family or friends for help and seek out local volunteer programs that offer companionship services.

Then supplement those hours with paid help as needed.

5. Check in to know that your older adult is well-cared-for
You might be afraid or nervous to leave your older adult with a stranger or a family member with limited experience. 

To give you greater peace of mind, use simple, discreet ways to keep an eye on them and make sure they’re treating your older adult well.

You could sometimes come back early as a surprise check-in to see what’s been happening. 

Or while you’re out, call occasionally to hear how things are going. 

Another good move is to ask the caregiver to take notes so you’ll know what happened while you were out.

6. Be creative when introducing the hired caregiver
Nobody wants to be told that they’re getting a babysitter. 

If your older adult is very resistant to outside help, be sensitive and creative when introducing them to the household. 

A careful approach is especially important to prevent seniors with Alzheimer’s or dementia from reacting with fear or anxiety.

For example, you could introduce the person as your helper around the house and have them help you with meal prep, light housekeeping, and simple care tasks. 

After a few of these visits, it will seem normal that they’re around and it will be easier for you to leave to “run errands.”

You could also position it as doing that person a favor. Perhaps you could say that this person is in need of extra income, so you’re helping them out with a few hours of work here and there.

If family or friends are helping, you could say that they wanted to visit and spend some time catching up. When they become regular visitors, you can start popping out to “run errands.”

By DailyCaring Editorial Team

Pat

How to make stress work for you?

April 6, 2022

Let’s start with a definition of stress.

Stress: a state of mental or emotional strain or tension resulting from adverse or very demanding circumstances.

Now, notice that it does not say anything about negative or positive stress. Have you ever even wondered about that? Some may think that all stress is negative. Not true. Positive stress happens, too. Positive stress (Eustress) or good stress is the type of stress response that we feel when we are excited.

Stressors are thoughts or challenges. They can be positive or negative. Stress and how it affects you depends on your mindset.

What Is Stress Mindset?

Again, it’s how you view stress, what it means to you.

  • Is it a threat – something that will negatively affect your emotional state, your performance (physical and mental), even your health?
  • Or is it a challenge that lifts you to a higher level of energy and performance? (i.e. the stress response is helping you cope.)

Why Stress Mindset Matters

A negative stress mindset views stress as harmful, a threat – and therefore something to be avoided, averted, maybe even suppressed. Negative consequences are:

  • You’ll avoid challenges and opportunities for growth and development (as with a fixed mindset).
  • Trying to avoid stress, and in particular trying to suppress the body’s stress response, actually amplifies it and makes the feeling of stress and anxiety worse, and probably longer lasting.
  • You can get locked into a state of chronic stress response, which is actually harmful (unlike short bursts of stress) – your stress mindset becomes self-fulfilling.

A positive stress mindset means stress is a challenge to be embraced, moving you to perform better. The stress response is your body’s mobilizing energy to help you meet the challenge. It feels like excitement, not anxiety. In other words, although there is still a physical stress response, it doesn’t feel like stress at all.

I stole, I mean, borrowed this from Stress Resilient Mind

Distress Stressors:

  • Financial crises
  • Solo caregiving
  • Death of a loved one
  • Relationship problems
  • Illness or Injury
  • Abuse
  • Feeling neglected
  • Worrying about someone else
  • Work problems
  • Deadlines

What happens to the body during stress?

The body’s autonomic nervous system controls your heart rate, breathing, vision changes and more. Its built-in stress response, the “fight-or-flight response,” helps the body face stressful situations.

When a person has long-term (chronic) stress, continued activation of the stress response causes wear and tear on the body. Physical, emotional and behavioral symptoms develop.

Physical symptoms:

  • Aches (headaches, body aches, etc.)
  • Pains (lower back pain, neck pain, etc.)
  • Chest pain or heart racing
  • Trouble sleeping
  • Exhaustion
  • Dizziness
  • Muscle tension
  • Jaw clenching
  • Stomach problems
  • Weaker immune system
  • Trouble with or lack of interest in sex

Emotional or Mental symptoms:

  • Anxiety
  • Irritability
  • Sadness
  • Depression
  • Panic attacks

Stress is subjective and cannot be measured with tests. Only the person experiencing the stress gets to determine how severe it is! That being said, we can look at the physical and mental symptoms you are having and we can also assess whether you are handling the stress with healthy or unhealthy behaviors.

Negative Stress:

Examples of unhealthy behaviors:

  • Alcohol misuse – drinking too much and/or too often
  • Medication misuse – taking a medication for other than its intended purposes
  • Food misuse – overeating, excessive eating of sweets, eating disorders
  • Smoking
  • Gambling
  • Shopping

Examples of healthy behaviors:

  • Deep breathe for 3-5 minutes four to six times a day
  • Eat for nutrition
  • Hydrate with water and other non-caffeinated beverages
  • Walk or run regularly – four to five times a week for 20 minutes at a time
  • Practice relaxation techniques
  • Mindfulness meditation
  • Sleep enough
  • Make time for your hobby
  • Talk therapy
  • Re-framing the situation
  • Journaling for 10 minutes each day
  • Setting realistic goals

Find your own personal mantra:

  • I did not cause this and I cannot fix this.
  • I cannot control the outcome; all I can do is to do my best.
  • I cannot change this situation and no amount of worrying will change the situation.
  • It is okay that the situation is not okay, I am moving forward and doing my best.
  • I can control how I react now, and that is all I can or have to control.
  • It is okay that I did not get it all done today, I have accomplished a lot today.
  • Things are not too good today, but I have adapted.
  • Let it go = let it be just as it is, right now

Create your own saying or mantra. One that is empowering and meaningful to you.

Sometimes stress is telling you to pay attention, something needs to change around here. Something is out of whack. Look at it. Is there a fix? Yes. Great, do it and move forward. Is there a fix? No. Great, let it be and move forward.

I know, I know. It is not normal to let things be and move forward. We all have to understand that our problems arise when we refuse to believe that what is happening cannot be fixed and we don’t like it! It is the internal struggle that is wearing us out. How much better off would we be, if we would accept things the way that they are, right now? It does not mean that we don’t try to make things better. It does not mean that we don’t move forward. We adapt. We reassess.

Re-frame the situation. How in the hell do you re-frame the situation? Start by noticing “stinking thinking.” Get ready to write some things. No, you cannot just think about them. That is part of the problem, you are in your head too much. Get the paper and pen or pencil.

  1. Write down your thoughts. (What is causing the anxiety?)
  2. Fact-check your thoughts. (Are they true? What is the proof?)

Truth is on a spectrum, it takes in to account your experiences, life stories and belief system. Facts are facts. They are true everywhere and for everyone.

 3.When you are really feeling stuck, ask, “Is this helpful?

4. What would you say to a close friend that is having the same thoughts are you are?

5. What is realistic, not positive? Finding a positive thought about a negative situation is not realistic. You don’t have to put a positive spin on it.

6. Screw “the bright side,” find “the meaning.” Get out of the “all-or-none” type of thinking. It doesn’t have to be an “either/or” situation, it can be a “both/and,” type of situation.

7. What is the next right action to take?

8. Try this for a week or two. Give it time or work or fail. Then reassess, make a plan and try again.

Reframing is not the best way to deal with every situation, but it sure can be a helpful tool. Use reframing to take an alternate view of the situation.

What are your skills and traits? Identify your strengths. Identify the areas that you are not so good at to find out either what you need to learn or you will learn that you need to let someone else handle the job.

If you are using all of your energy focusing on the negative, then you will have little to no energy left to find any good in the situation or to look for possible solutions. Use your energy wisely, you only have so much focused energy to use every day (about 3 hours).

Positive Stress:

Some stress can be good for you. How do you know if it is good stress?

Positive Stress Characteristics:

  • Focuses Energy
  • Motivates you
  • Within our coping abilities
  • Feels exciting
  • Improves performance
  • Short-term (you will still have physiological changes to your body)
  • Challenges for learning, growth and achievement
  • Sense of purpose

Positive Stressors:

  • New relationship
  • Wedding
  • Upcoming holidays
  • Retirement
  • Vacation
  • Pregnancy
  • Taking on a new project at work
  • Physical conditioning
  • Learning something new
  • Buying a home
  • Graduating
  • New job
  • Self-care

Positive stress is key for developing resilience. That is what we are all after. The ability to handle whatever happens both good and bad. To get back to the point that we know we are going to be okay.

Pat

How the senses change in dementia…

No, they are not just being difficult.

March 2, 2022

Your loved one is having an unexpected reaction to the food they are eating. They stop eating, declaring that it has no taste. They become very apprehensive while walking through a door into a restaurant. They are nervous and are becoming more and more irritated. They cannot seem to judge how to sit down in the seat. They seem so distracted that they cannot read the menu or decide what to order.

These things and more are due to the brain not being able to process the sensory inputs correctly or in a timely manner. Their sense of taste and smell have lessened or may even become non-existent. When areas are too dark, they are unable to differentiate the floor from the walls, tables or chairs. Their depth perception is way off and maybe they begin to sway more and even fall more. Noisy places can send them over the edge. Too much sensory information overload can cause a meltdown and unwanted lashing out behaviors. The talking, the music, the televisions may be too much for them to handle.

You probably will not be able to calm them down and so it is best to remove them from the situation. They cannot follow the conversation with all of the distractions. They will become disoriented more easily and their balance will be affected as well.

Why is this sensory overload happening? It could be an auditory processing disorder. That can be tested by an audiologist. In mild cognitive impairment, any dementia, including Alzheimer’s disease too much “noise” can strain the brain and make it work harder. Our brains only have so much focused energy to use during the day and an impaired brain, has way less energy to use. If they expend all their energy on the “noise” issue they have no energy left to work on anything else. They may be able to hear well, but they cannot process/interpret the sensory input. By the way, hearing also affects balance.

Sight/Vision issues:

  • Lack of depth perception
  • Decrease in ability to detect movement in the room
  • Decrease in ability to see colors
  • Problems recognizing people, faces or things
  • Shadows and light can mess with their minds and what they think they are seeing   .
  • They may be able to see, but are unable to interpret what they are seeing.
  • Things may appear blurry.
  • They may no longer have peripheral vision.
  • They will need more light to see.

Smell issues:

  • Sense of smell decreases
  • They can no longer smell smoke, odors, foods that may be spoiled.

Taste issues:

  • Sensitivity to taste declines in dementias.
  • The last taste to go is the sweet taste.
  • They will add a lot of salt, if the salt shaker is visible.
  • It is perfectly fine to use other spices to help them “taste” their food.
  • When the sense of smell goes, taste goes too.

Touch issues:

  • They may be unable to tell when things are hot. You might want to decrease the hot water heater temperature.
  • They may not know when they have cut themselves with a knife.
  • They may not be able to tell the difference in hot water and cold water on their body.

Hearing issues:

We talked a little about that in our example above.

  • A person with dementia may have normal hearing, but they will probably be unable to process the information correctly. Remember, we hear with our brains.
  • Competing noises are very distracting. Even if it is normal to you, a person with a dementia cannot filter out the extraneous noises.
  • Are the batteries in their hearing aids good? Are their hearing aids working?
  • Do they need to be checked by an audiologist? NOT, a hearing aid specialist.
  • They need a quiet setting. Low music is usually fine. TV is not good and needs to be turned off, while they are eating and talking.

Impaired movement issues:

  • They may take shorter steps.
  • They may drift to one side.
  • They may shuffle their feet.
  • They may slow way down as they walk.

Balance issues:

  • It becomes harder to judge distances and they may bump in to things.
  • They struggle or can no longer negotiate stairs.
  • Balance and coordination may be off and so they trip or fall more easily.

Stiffness/Shaking issues:

  • The muscles can become more rigid which makes it more difficult to move.
  • The muscles can become tighter and restrict movements.
  • The muscles can waste away from inactivity and malnutrition.

Coughing/Choking issues:

  • The ability to chew and swallow may become compromised and even lost.
  • It becomes easier for them to aspirate and a pneumonia set up in their lungs.

A person with a dementia is actually having brain failure. The brain can no longer receive, process, interpret and react to sensory signals appropriately. What is so frustrating is that sometimes our loved ones are “all there and with it,” other times, they cannot do anything. No rhyme or reason. Some days and moments are good and other days & moments suck.

Pat

Are there any positive benefits to being a family helper or care giver?

Sandwich generation

February 2, 2022

So often we talk about the stressors and negative consequences of helping a loved one. But, what about the positive things that can happen? There actually are some benefits.

Care giving is full of ups and downs. Every day may be different. Different is not always a bad thing. You may even have more pleasant days than bad days. I know, some of you are thinking that pleasant days are not what you experience. I get it, not everything is going to be pleasant.

Think back to a rough day. One where it took you three hours to get them dressed and fed. Maybe, it was a day that they did not recognize you and they balked at every turn. It gets emotionally draining. We tend to remember all the problems and struggles that we deal with. Why? I am sure our amygdala has something to do with it. LOL. Look, we remember it because it messed with our plans. We hit a resistance or barrier of some kind. Did we shift our focus or try another way or even try again later? Nope. We pushed through and made it happen. What was left in our wake? Wasted time. Hurt feelings. Frustration. We just reinforced all of the negative feelings. We forgot to focus on the small victories. They can still get dressed and they can still eat. They can still get out. Your unmet expectations are what really caused the “problems.”

While we are focusing on a dementia or Alzheimer’s related issue today, it could be any chronic health condition that causes a decline in our loved one. A physical decline and/or a mental decline happens in a lot of other diagnoses.

I wish that I could tell you there are predictable patterns. It all depends on what area(s) of the brain are affected. Their brain is failing. You may experience a problem with the bathing issues and someone else may be dealing with the 500 questions a day issue (the same 500 questions). Maybe, they are still quite mobile and wander off, repeatedly. You must realize that all of these behaviors are UNCONTROLLABLE for folks with dementia. Alzheimer’s is the most common dementia. Analyze your own response to the frustration. See what you can modify or change to make the process go more smoothly. If you find yourself getting more and more frustrated, it is past time for you to take a break.

Next time, focus on what they can do. See what they can do for themselves, even if it takes longer. What would you consider a success, taking their limitations or bad days in to account? Go in with a smile and a warm fuzzy feeling in your attitude. They will pick up on that. Spend a few minutes talking with them. Touching them gently on the arm or shoulder. Use the phrase, “we are going to _____________ now.” One thing at a time. One arm at a time. Speak to them and tell them what “we” are doing in a calm, loving voice. Take a break, if they need to. You will still complete the tasks much easier and faster if they are helping and not fighting you. How ever long you think it should take … multiply that by 4. That is your timetable.

It will be in the small things that you will see what you have accomplished. Their calmness and trust will be so amazing. Even if they are no longer verbal, they sense emotions and do it quite well. They may look at you and not know your name or maybe not even who you are. But, they know that you are someone that cares about them, that loves them because they sense it.

You have a purpose. To help someone that you love have the best quality of life possible for them.  It feels good to have a purpose. It feels good to help someone that you love. They have helped you and now you get to help them.

You being there is important. None of us want to be alone. Your time, effort and attention provides comfort to them. I hope that brings you comfort and joy.

You find yourself talking with them. For the first time, in a long time, you are having a real conversation. Telling and listening to stories.

You will be changed by this experience. Maybe you figure out what you want and what you do not want when you reach their age. Maybe you see the things that you need to take care of now, so your kids won’t have to struggle to find the information needed.

You probably will never receive an award for being a helper or care giver to your loved one. You may never even be appreciated. You may never be acknowledged for what you do or what you have sacrificed.  Did you really do it for the accolades? Probably not, but some people do.

What if you haven’t been close and they need you now? Could this be a time of mending fences? Could this be a time of moving forward? What about resolving old hurts or negative feelings?

Care giving can teach you a big lesson about control. As in, you are not in control and you cannot control the outcomes. That, sucks! It is a lesson that we all need to learn. We can do our best. We can make plans. We can implement the plans. But, we have no control over the outcome.

Your own kids are watching you. They are watching how you act towards your mom, dad, spouse or partner. They are listening to what you say. They are observing what you do and how you handle problems or stressful situations. You are modeling for them what to do and how to act. Your attitude towards your loved one may very well become their attitude towards you when you need their help.

Even with all of the positives of helping a loved one … we all need to take breaks to rest and recharge.

Pat

p.s. Share this blog with your friends.

Almost half of caregivers will not ask for help. Why?

January 26, 2022

At first, it did not take too much time or effort to help them. Your mom needed a little help with running errands and doctor appointments. Your dad needed some help with cleaning the gutters or getting the oil changed. Your wife needed help getting to her hair and nails appointment. Your husband needed help with mowing the lawn and going to the barber. Nothing major and it didn’t take too much time or effort to help them.

As the months fly by, more and more is required of you. More of your time. More of your effort. More of you moving your schedule around. At about the 18 months mark, you are getting a little tired. You are beginning to feel more and more frustrated. You have had to miss work. You have missed your kids school functions. You have missed your kids’ ballgames. You look up and realize that you have not seen your best friend in months. You have not been out to eat in a long time.

Your body is aching. You are tired. You realize that you have not been doing your favorite activities that keep you in shape or keep your stress level down. Walking, running, swimming, weight lifting, yoga, playing cards, gardening, reading, etc. You try to think back to when that all stopped. Maybe you remember, maybe you don’t because it was a slow process.

When was the last time I saw __________________? When was the last time that I had any fun? When was the last time that I spent a weekend with my husband, partner or family? When was the last time that I spent time with my wife or partner to reconnect? Hell, when was the last time that I had time to myself to do what I wanted to do?

About the 18 months to 2-year mark, you usually need help. Sometimes, things are going well and you just need a break. Sometimes, things are not going well at all and you don’t know what to do to make things better. This is usually the time that I am called in and we troubleshoot, create plans of action and get the support system up and running.

Everyone needs a support system. It would be best to gather all of those folks at the beginning. Why? Because, eventually you are going to need them, their talents and their help. Don’t wait until there is a crisis to figure out who is good at what. Don’t wait until there is a crisis to find out who is willing to provide hands-on help and who is willing to provide other services such as running errands, doing the laundry, cooking meals, mowing the lawn, cleaning the house, etc.

If you ask people to do what is uncomfortable for them to do, they will do one of two things. One, they will decline to help. Two, they will do it, but they will resent it and will find ways to never have to do it again. Not everyone can or should provide the hands-on care. Maybe they are comfortable with hands-on care up to a point. Find out what that stopping point is! Mine is the toileting and bathing habits. I am not too good at sitting with them for long periods of time either, I preferred to get out and about with mama and she preferred that too. I used to beat myself up for not being able to do the toileting and bathing things. I certainly loved and cared for my mama. I wanted her to have her needs met and have the best possible care. I had to realize my strengths and my weaknesses. I had to understand that it was not about me, it was about what she needed and who could best provide those things.

I can do any of the medical stuff but, I cannot do the toileting or the bathing stuff. Isn’t that strange? Looking back, I had medical know-how and training, but I never had training for daily care. Maybe, that would have made a difference. In my case, I don’t think so. I do believe care givers need to be trained in helping with the activities of daily living. You can hurt your loved one or yourself if you do things incorrectly. Care giving is hard work. It is physically demanding. It is emotionally draining. It is mentally taxing.

We sure do it though, don’t we? Even if you provide hired help or see to your loved one’s care, you are a care giver. Even if you are hours away or states away and you see that their needs are met, you are a care giver. We see ourselves as helpers and not as care givers, but we are care givers. Why is that important? Because, being a care giver has health consequences for us. Being a helper or a care giver impacts our entire family.

Asking for help is necessary for good care. It is good for the care receiver and it is good for the care giver. Why do you need to ask for help? Because at the beginning, folks did ask you how they could help you. You didn’t really need the help then. They would keep asking for about a year and then they would stop asking. Why? It wasn’t because they no longer wanted to help. It was because, every time they asked, you said no. So, they stopped asking. They figured, if you needed help, you would let them know. You needed help, but you did not let them know. You are so busy. You are stressed. Take a breather. Be open to the possibility that others are willing to help. You make that call and state what you need. Yes, state what you need. Be specific. If they can, they will. If they can’t, they won’t. Call the next person and state what you need. For example, I need mom to be taken to the hair dresser on Thursday at noon, to the grocery store after that and stay with her until 4:00. Not, can you help me with mom on Thursday?

By stating what you need, you have given them the opportunity to see what needs to be done and if they can make it happen. Maybe, they can do all of it, maybe they can do the hair dresser and grocery store. It is much easier to decide if you know what will be expected of you and the time frame. It is always the unknown or ambiguous that will cause us to hesitate and probably say no. Another example is that you need someone to sit with your mom for 6 hours on Saturday. Don’t ask if they can sit/stay with her for 6 hours. They will freak out. They don’t know what to do with her for 6 hours. Give them some activities to do. Lunch out, if possible. Watch a movie, play cards or a board game.

Use “I” statements. I need a break to take care of my stuff. I want you to _______. Try your best not to use “You” statements. That is a fight or hurt feelings just waiting to happen. The word “you” gets everybody’s back up and on the defense.

Maybe you do need them to sit with a loved one who is unable to do much of anything anymore. You still need to tell them how to be helpful. Give her 2 oz. of water to drink every hour or so. Tell them that she will need to be prompted to drink. Tell them when and what to feed her. Tell them what medications they need to take and when.  Let them know her schedule, TV shows, nap time, etc. Let them know that they need to check on her every hour and that they can watch TV, watch a movie or do their work. Maybe, they need to hold her hand or just be in the same room with her.

 Tell them what to expect. Sure, you know, but they do not know. They want to help and they want to do it right. It would also be helpful to give them a phone number of someone else to call, if they have questions. NOT your number, someone else’s number. You are taking a break.

Look, the more you have prepared them, the more likely it will be a success for all involved. The more successful it is, the more likely it is that they will help you again. Win-win-win. You win. Your loved one wins. The helper has helped you and feels good about that because they care about you.

The helper will not do it exactly like you do it and that is okay. There are always more ways to do things. Don’t be a micro-manager. You trust them to stay with your loved one so trust them to handle the tasks.

Why is it so hard to ask for help?

  • You are having difficulty trusting someone else to do the job “right.”
  • You won’t let go of the need to control things
  • Guilt over leaving the person in someone else’s care
  • Worry over the quality of care if you are not there from day to day overseeing everything
  • You may be too overwhelmed to ask for help
  • You think that you are being selfish if you put your needs first
  • I promised my father that I would always take care of my mother
  • I am responsible for my parent’s health
  • If I do it right, I will get the love, attention and respect that I deserve
  • You feel inadequate if you ask for help
  • My loved one refuses to let anyone else help & guilt trips me
  • My siblings are jockeying for power

Change your mindset

Realize that asking for help is smart. It is not selfish. If you burnout, who will be there to help care for your loved one? Give yourself permission to enjoy your own life. Realize the importance of taking care of your own health (physically, emotionally and mentally.) Understand that a break is essential and not a luxury. While this is easier said than done, turn off your care giving mind. A few hours of reconnecting with others, a dinner out, a long hot bath and sleeping in your own bed, can do wonders.

Asking for help is necessary for both you and the care receiver. See, it is not all about you.

Some tools/tips to help you ask for help:

  • Have a list of people to call
  • Have a list of needs/projects to be handled
  • Consider the person’s strengths when asking
  • Ask different people, do not use the same person each time
  • Pick the best time to ask for help
  • Be prepared for refusals
  • Understand their hesitancy
  • Don’t take it personally, when someone you have asked cannot help, this time
  • Be assertive, but don’t be an ass

Our emotions exist for a reason. They let us know when something is out of whack or off kilter. Learn from them. Don’t push them down, don’t ignore them, learn from them. Even if you push them down, they will come out in other ways. If you are providing care for a loved one you will experience many different emotions. Emotions are not wrong or bad, they just are. Be curious about them, ask why you are having this emotion or feeling? No judging! Maybe some of your emotions are telling you that you need to make a change in your care giving situation. You have probably begun the grieving process. You are experiencing an increase in stress. That it is time for you to ask for help. It is time to be assertive.

  • Who are the 5 people you will contact?
  • What will be on your list of chores/projects?
  • What days and times will you need a break?

Write it down. When will you complete these lists? Write it down. When will you start making these calls to get people on board? Write it down.

What gets written down, gets done.

Pat

When you assume, be prepared for the boom!

Have you ever asked your care receiver what they need the most?

January 19, 2022

You have guilt. They have guilt. But, neither of you is talking to the other about those feelings. In fact, neither of you has talked about much of anything with regards to being a helper and being a care receiver.

I always remember the word, assume. When you assume, it makes an ass out of you and me. Ass/u/me. I have been an ass, quite a few times and not always by assuming. But, a lot of times, I have assumed, and I was so very wrong. Don’t let that happen to you. Assuming does cause misunderstandings. It does cause heartache. It can even cause hurt feelings.

How could my assumption be so wrong?  I made the best decision that I could. My heart was in the right place. I know this person. Why was it so wrong? Everyone does not think like me. Not everybody has the same wants or needs as I do. They don’t have my life experiences or the same goals that I have.  I’m perplexed. I’m a little sad. I feel a little unappreciated for my efforts. I am a little pissed.

Have you ever felt that way, you make decision, and it did not turn out as you had planned? It flopped. It was bad. It made more of a mess.

The key is, “as you had planned.” You didn’t ask anyone else for their input. You didn’t ask your loved one what they wanted or needed. We assumed. The decision blew up and caused hurt feelings. We misunderstood. But we are not going to admit we were wrong. We will double down on our interpretation and beliefs. Hello, ego and pride. You can’t back down and admit you messed up. Even when the other person tries to clarify what they wanted … our stubbornness or rather our pride bows up and will not listen.

The ways that we know about something, or someone are:

  1. The things that we know for sure
  2. The things that we do not know
  3. The things that we think we know

Think about it this way. You are having a conversation and somehow your loved one tells you that they like flowers on the table. In your mind, they like roses because you like roses. You didn’t ask them what kind of flowers they liked. You assumed they liked roses and you bought roses for the table. Instead of getting the praise and acknowledgment that you think you deserve, you get a “those are nice.” In your head, you are going off. You say something like, “I thought you liked flowers for the table.” They respond, “I do, I prefer tulips because they are my favorites.”

You are the one that assumed roses. You did not bother to ask what kind of flowers are their favorites?

You are sent on an errand to get loaf bread, peanut butter, coffee and milk. There are no brands listed and you didn’t bother to ask. Each of you assumed that the other knew what brand to get. How do you think that worked out? You got white bread, Peter Pan peanut butter, JFG coffee and soy milk. Why? Because that is what you use. Bad move. They wanted whole wheat bread, Jif peanut butter, Folger’s coffee, and 2% milk.

See what assumptions do? Everybody is mad. Each of you is blaming the other one for not “knowing” what to get. To avoid all of this anger, frustration and hurt feelings, take a minute to ask a few questions for clarification.

Communication and listening for understanding would have gone a long way in preventing this mishap.  Making assumptions is asking for problems in any relationship. None of us are mind readers.

We all make assumptions even when we don’t know that we are doing it. We view things thorough our own perceptions, and they are not always accurate. We have biases both known and unknown. We think that our experiences are the same as other people’s experiences. We don’t challenge what we think we know to be true. Maybe, we heard it and accepted it as true. It was not true. Check your facts from trusted sources. What if we are stuck using information from a past experience?

Hang on, what comes next are short, informational blurbs. Things to make you think. Things to help you understand.

What if the helper and the care receiver would communicate better? What if they could each state their needs and their wants while working together for the best outcome possible? If you cannot talk to each other without getting into a fight, maybe try writing it down on a piece of paper. Listen for understanding. Take 10 seconds to think or process before replying. State back to them what you heard and ask if that is correct?

As the helper or care giver, do you know how your loved one or care receiver feels? Give up your need to control. You are the helper. It is hard enough on the care receiver to admit that they need help. For them to realize that they are no longer independent is devastating.

Take a breath. Talk with them about the past, the present and even the future. Talk with them, do not pepper them with questions. As the dementia progresses, you will need to give them two choices, but at first, you let them decide. Offer to help the care receiver. Sure, they move slower, but take them with you to the grocery store.

If your loved one has been a giver their whole life, it will be hard for them to be the receiver. They are not used to receiving. It will be a learning process for them. Remember, everyone wants to be useful and feel useful. Imagine how you would feel if you could not do everything for yourself and you had to depend on someone else’s help. Will you be angry? Will you rant, rave and rage against help? Will you be open to receiving help, with gratitude? To realize that there are some things that you can still do for yourself. Our identities get wrapped up in what we do for a living or our role in our family life. Who are we if we are not a __________?

We all must answer that question. Be kind to yourself. You are loved, appreciated, and admired for who you are as a person. Not what you do.

The feeling of becoming or being a burden to our loved ones, makes all of us a little crazy. Almost all of us will help without a second thought, when needed. We do it and never think a thing about it. However, when it comes to us receiving help …that is a horse of a different color. Nope. We are not having it!

We all want our dignity to be left intact. We deserve that our dignity be left intact!

Helping or care giving is full of contradictions and even competing thoughts. It is the same for the care receiver. Mixed emotions abound. Can your personalities coexist?

Some people are not cut out to be the “hands-on” care giver. They can make sure that you have “hands-on” care givers to help. They may provide support and help to the family “hands-on” care givers. As I have shared before, I am not the “hands-on” care giver type. I learned the hard way. By trying to do it for my mom. When it comes to personal hygiene, toileting, grooming or transferring, I am not the best person for that. I am not good at it. I could do other things such as, taking her out to eat, to the doctor, to the store or the mall. Do laundry, cook a meal, mow the lawn, pay the bills, talk with her and just be with her to watch TV and play Jeopardy. I felt guilty that I could not do it all. I love her and want the best for her. I had a full-time job, three boys and a partner. I did the best I could. I wished that I could have been there more for her and daddy. Daddy was her primary care giver, and he had both medical and non-medical care giver help a few days a week for a couple of hours. My brother and I could not convince him to get more help. Mama did not want to be a burden to any of us and told us to place her in assisted living when we needed to.  It was never about her being a burden. My mama was never a burden. Daddy was not having any of that and he kept her at home. He had modifications done to the house for wheelchair access and a roll-in shower with a large bathroom area.

Mama was a very strong and independent woman. Everyone in my family can say what they think. We can have discussions, disagree, and even work together. The one thing that we can’t do is read each other’s minds, not that we had to. No one was afraid to express an opinion. When she was diagnosed with MS, she soldiered on. We could always talk about what was going on and the MS. Over the years, she got weaker, and her legs got to where they just wouldn’t work, and she used a walker and eventually a wheelchair. She always did whatever she could still do. I am sure she was frustrated. I never heard her complain nor did I ever hear her say, “why me.” She always faced everything head-on and we moved forward. We adapted, modified, and kept on going. One of my mom’s favorite sayings was, “Do the best that you can do and forget the rest.”

While she had MS for years, she did not need any help until she was about 62 years old. She died at 65 from kidney failure. Other families are care givers for much longer and some shorter. You never know how long it will last. While it is hard and sometimes frustrating, it is also rewarding. You get to help someone you love when they need help. You don’t even see yourself as a care giver. You are helping your mom, dad, spouse, or partner.

If you want to avoid hurt feelings, anger, resentment, disappointment and miserable outcomes due to making assumptions, ask for input/options.

Don’t assume:

  1. That things will go exactly as planned
  2. That help is not necessary
  3. That you are being judged by what you do or don’t do
  4. That you know what your loved one wants
  5. That no one else can care for them properly
  6. That you know everything about your loved one’s conditions
  7. That your care receiver cannot tell how you really feel, they sense emotions
  8. That the care receiver will act the same way as your friend’s mom
  9. That they are not too bad, as they can have social conversations …different lobes of the brain control different functions

Take a look at this information from Mayfield Clinic

https://mayfieldclinic.com/pe-anatbrain.htm

It shows you what part of the brain is responsible for what ….

Lobes of the brain

The cerebral hemispheres have distinct fissures, which divide the brain into lobes. Each hemisphere has 4 lobes: frontal, temporal, parietal, and occipital (Fig. 3). Each lobe may be divided, once again, into areas that serve very specific functions. It’s important to understand that each lobe of the brain does not function alone. There are very complex relationships between the lobes of the brain and between the right and left hemispheres.

Figure 3. The cerebrum is divided into four lobes: frontal, parietal, occipital and temporal.

Frontal lobe

  • Personality, behavior, emotions
  • Judgment, planning, problem solving
  • Speech: speaking and writing (Broca’s area)
  • Body movement (motor strip)
  • Intelligence, concentration, self awareness

Parietal lobe

  • Interprets language, words
  • Sense of touch, pain, temperature (sensory strip)
  • Interprets signals from vision, hearing, motor, sensory and memory
  • Spatial and visual perception

Occipital lobe

  • Interprets vision (color, light, movement)

Temporal lobe

  • Understanding language (Wernicke’s area)
  • Memory
  • Hearing
  • Sequencing and organization

Language

In general, the left hemisphere of the brain is responsible for language and speech and is called the “dominant” hemisphere. The right hemisphere plays a large part in interpreting visual information and spatial processing. In about one third of people who are left-handed, speech function may be located on the right side of the brain. Left-handed people may need special testing to determine if their speech center is on the left or right side prior to any surgery in that area.

Aphasia is a disturbance of language affecting speech production, comprehension, reading or writing, due to brain injury – most commonly from stroke or trauma. The type of aphasia depends on the brain area damaged.

Broca’s area: lies in the left frontal lobe (Fig 3). If this area is damaged, one may have difficulty moving the tongue or facial muscles to produce the sounds of speech. The person can still read and understand spoken language but has difficulty in speaking and writing (i.e. forming letters and words, doesn’t write within lines) – called Broca’s aphasia.

Wernicke’s area: lies in the left temporal lobe (Fig 3). Damage to this area causes Wernicke’s aphasia. The individual may speak in long sentences that have no meaning, add unnecessary words, and even create new words. They can make speech sounds, however they have difficulty understanding speech and are therefore unaware of their mistakes.

Pat

How many times this past week have you felt enervated?

January 12, 2022

Have you ever had a cold that really kicked your butt? One that has left you so tired that your eyelids are heavy and you just want to sleep? But, you can’t lie down because you can’t breathe. Friggin’ congestion! You want something to drink but nothing tastes good.

You try to do your work and get on with your day, but you have about two hours and that is it. No more energy to think and work. No more energy to walk around. As my youngest used to say, “pillow, blankey, go night night.” What a great idea, but you can’t, too much to do. Besides, if you try to lie down, you can’t breathe. Friggin’ congestion.

In trying to do this blog, I could not find anything interesting to write. I am tired and I have no more mental energy and no real physical energy. “Pillow, blankey, go night night.” Nope, I have to finish my work. Besides, I can’t lie down … I can’t breathe. Friggin” congestion.

I was going to do mental energy versus physical energy and when they are spent what happens. Maybe, another day.

I found this word, “Enervated.” I was curious and had to find out more about it. I know what innervated means, but what does enervated mean? According to Thesaurus.com it means exhausted or worn out. That’s me, I am exhausted and worn out from this cold.

So, how many times this past week have you felt enervated?

What is zapping your energy? It doesn’t always have to be an illness that makes you feel enervated. It could be feeling like you have too much to do. It could be that you haven’t been sleeping well and you are physically tired. When we figure out what zaps our energy we can decide to do something about it or let it ride and always feel enervated. A cold will last 7 – 14 days and then it will be over. Not everything is self-limiting, but we really do have the power to set boundaries, conserve our energy and feel better.

Don’t manage your time, manage your energy for a better day. Think of the things that zap your energy as either energy zappers or energy vampires. Make a check-off sheet and see what are your true energy zappers or energy vampires.

Get a sheet of paper and across the top, label Energy zapper, Physical, Mental, Emotional

Draw lines from the top of the paper down to the bottom. Now, when something zaps you, write down what it is or who it is and then mark the appropriate box on Physical, Mental, Emotional box.

After about four days, you will have a pretty good idea of who and/or what is zapping your energy. Then you get to decide what to do to conserve your energy. Do you need help? Do you need to take a break? Do you need to be a better manager of your energy? No judgments allowed. You are on a fact-finding mission.

I look forward to hearing what your energy zappers are. If you find a person to be one of your energy zappers, please give them a code name or a false name.

The only person that you can change is you. You can change how you react or deal with a situation. You cannot change another person. The only person that will set boundaries for your own good, is you. When you are sick with a cold, you will have to take care of yourself ‘cause no one else will. Maybe, you will need to take a couple of days off from work AND from other responsibilities to let your body rest and heal.

Now, my mental ability is spent and I am not sure that the previous paragraph even makes sense. It did to me, at the time. I would go lie down, but, I can’t ‘cause I can’t breathe. Friggin’ congestion.

Pat

How can I tell people what I need? (Hint, you cannot be subtle nor can you use telepathy.)

November 17, 2021

It would be so much easier if other people just knew what you needed and wanted and did it! No one can read your mind. No one can really understand what you are going through. Even if they have helped take care of a loved one of their own, their needs may have been completely different from your needs.

Communi-friggin’-cation! It is the key to everything. That is my own word for communication. Did you know that other folks communicate totally different from you, well, maybe it is the understanding that is different? You know what you need, inside of your head, but how do you communicate that need so that others will understand?

Are you one that thinks …
Well, if they knew me…they would know what I need?

I have told them how tired I am and I need a break.

Well, if they could help me, I guess they would.

I talk about how hard it is, all the time. It has taken over my whole life.

No, I’m good, I can just handle it all.

Hey, I need you to be here on Saturday the 8th from 9 am until 6pm.

I need you to do the laundry, change the sheet and provide dinner on Sunday.

How many different styles of communication are there? Four major ones. Body language is another style, but that is for another day. We are talking about being verbal and asking for what you need or want. Wants are okay to ask for too.

Passive

Passive communicators go with the flow and are sometimes seen as wallflowers. No muss, no fuss. Sometimes they may be unaware of their thoughts or feelings, but more than likely they ignore their own feelings, wants and even their thoughts. They may seem to be easygoing, but underneath anxiety rules. They fear disapproval.

Passive communicators bottle things up. They hardly ever fight and usually cede everything. They stuff and they stuff their feelings and wants. You can stuff things for so long, but they will eventually bubble to the surface. Resentment, here I come!

Aggressive

Aggressive communicators dominate the conversations and state their opinions often overriding others’ opinions. They use direct eye contact, leaning forward, staring at you and moving towards you sometimes.  They are very poor listeners and use a harsh tone, even if they don’t mean to be using a harsh tone.

Aggressive communicators are not quiet and yes, they are the ones that yell. They almost never back down. Your feelings will not be considered. Think more of a “win” type personality and not the “win-win” type.

Passive-Aggressive

A passive-aggressive communicator will confuse the hell out of you. Why? Because they cannot get all of their thoughts, and meanings outside of their heads in a cohesive manner or in a way that makes sense to others. They may be easily frustrated. They can become quite irritable and resentful. They will use sarcasm, talk to another person instead of the person that they need to be talking to. They will criticize others. I don’t get this one, but I have seen it happen. They show oppositional behavior. They will be the one that states, “I will help.” They will help and they will Complain the Whole Time. These folks are angry and their words do not match their body language. Gritting their teeth, making their hands into a fist all the while either being indifferent or smiling.

Passive-aggressive communicators are angry and they know that they are angry, but will deny that they are angry or that anything is wrong. Sarcastic barbs coming your way or maybe you will get the silent treatment.

They silently seethe and the other person has no idea what in the world is wrong.

Assertive

An assertive communicator is confident. They are open to discussions and clarifying whatever may be unclear or confusing without being an ass. They are usually calm and will state what they want or need without imposing their requests on others. This type will look for a consensus, if possible. They usually listen and seem to care about others. You may have healthy and loud discussions but it does not feel like you are having an argument. They will share their thoughts, opinions and how they feel about something. They are open to you doing the same. Not only are they able to listen, they are able to hear.

What communication style to you have? What communication style do others in your life have? Can you see how things get all messed up when everyone is talking and no one is listening or hearing?

We have all heard it before, seek to understand first. Understand where the other person is coming from, try to put yourself in their shoes. You may not be able to fully, but try as best you can. We all have our own peculiar ways. We are different people with different experiences and we look at things differently. It isn’t wrong, it is just different. Search for common ground. What can you agree on? What is best for the care receiver? What is best for all involved as care givers? Each of us have strengths and each of us have things we don’t do very well.

Let your empathy and compassion for others help you in moving towards being an assertive communicator. A good sense of humor helps too.

What strengths help you become a better caregiver?

  1. Resilience – The ability to withstand or recover quickly from difficult conditions; I can negotiate for what I need and navigate systems.
  2. Patience – The capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.
  3. Flexibility – Ready and able to change so as to adapt to different circumstances; accept what is happening in the moment.
  4. Compassion – The ability to translate empathic feelings into action (desire to alleviate suffering).
  5. Optimism – Expect a favorable or positive outcome.
  6. Confidence – Sure of one’s self and one’s abilities.
  7. Organization – Methodical and efficient in arrangement or function.
  8. Ability to Laugh – To easily see and appreciate the humor in the situation.

Use these to rate yourself on the above strengths:

1 – Always

2 – Sometimes

3 – Hardly ever or Never

Be honest and help yourself to know what you are good at and what you are not so good at… Hopefully, you will find that others have different strengths than you and will be a good helper.

To identify and acknowledge your personal caregiver strengths, set aside a few minutes for personal reflection. Ask yourself the following questions:

  • What gives me energy?
  • What am I good at? What do I do best? What do I do well?
  • What am I naturally good at? What comes naturally to me?
  • What are my best character traits?
  • What things do I look forward to doing?
  • When faced with challenges or adversity, what strengths do I bring to these challenges?
  • What do I handle well?

When you ask for things, be specific. Have a list at the ready. You may need things done at your house instead of at the care receiver’s house. Be as flexible as you can. You must agree to a day and time or it will not get done. Never a “whenever” or a “sometime next week.” Pick a day and time, negotiate for another day and time, if necessary. Keep a running list of things that need to be handled. Heck, place it on the refrigerator for folks to sign-up.

Headings for the list include: What action or Task, Where (care receiver’s house or care giver’s house), What day, Alternate day, Who will handle this

You will have to be direct. Not an ass, but state what your Mom/Dad and/or you need their help. Are you willing to step-up, pitch-in and help? If they say yes, then pull out the ready-made list and get to work. If it is a task that takes time and they do not have time, then by all means suggest a less time-consuming task or request a specific amount of money (be fair and reasonable) to hire out the task. If that doesn’t work then ask them what they can contribute and shut your mouth until they begin figuring out things, Yes, it will be uncomfortable, but just be still and quiet. Be open to brainstorming sessions. Try to make your “ask” into statements. For example, instead of saying, “Can you do some things for me?” state that “I need XYZ from the store today.” “I need you to provide dinner on Friday.”

What if you ask and get told “no” to your direct request? You may even get brushed off or told off, where do you go from there? You still need back-up and help. It is going to suck, but you will move forward as if you are an only child. You may need to hire outside help, ideally with the care receiver’s money.

I have seen a family of 4 siblings work it out to care for their aging parents at separate times.  They all stepped up and did whatever was needed. They were all professionals and very busy with their careers, but they made their parents the priority. They communicated, worked together, had a list and each of them used their strengths to the fullest. Their parents we never alone.

I have also seen a family with 3 siblings leave it all to one sister. No help, no money, just bitching and “trying” to run things. It was horrible. That one sister realized she would have to handle her mom on her own. She did and her mom was well cared for. It did take some of the sisters’ own money, to help with outside care, but they managed and she had a good experience with her mom for the time her mom had left. She also told me that she had no regrets and that her conscious was clear. She is civil to her siblings, but not really much of a relationship with them now. Of course, it wasn’t much of a relationship before either. 

Maybe you will have to say your piece to those that will not contribute in order to let go of your anger or resentment at them. Do let go of your anger, you don’t have the time or energy for it.

There may come a time when you have to say “No” to caregiving.

You may find that you must set limits on caregiving responsibilities. You are exhausted, overwhelmed and your own health is suffering. It most often happens to those that do not take care of themselves during the care giving process. You do count. You do matter. Add your needs in to the mix.

What does saying “no” mean to you? Could it mean that you leave the loved one to fend for himself?

 Maybe it means that you are tired, isolated and depressed and you have to stop, possibly “no” means that you need to take a breather and you realize that some things will have to change if you are going to proceed and help as a care giver. Boundaries is not a dirty word. Emotional limits are reached quickly when either a crisis happens or you have taken no breaks.

Practice your “I” statements to work on your boundaries.

  • “I can no longer drive you to all of your medical appointments due to my work schedule and my limited time off. I know this will be a change for you. I suggest we look into other transportation options such as the Busy Bee Medical Transport Service.”
  • “Mother, I am unable to continue with the responsibility of cleaning the house weekly. I want to spend my time with you on other matters. I know it’s hard to let newcomers help, but I think it is time to hire a homemaker service you would be comfortable with.”
  • “Dad, I can no longer assist you down the outside stairs. I am worried about your safety and mine. I believe we need to build a ramp for easier access to your home. I have found a carpenter who has reasonable rates for construction.”

In each of the above statements, there is a presentation of what the speaker cannot continue to do, an acknowledgement that the change will have a consequence for the elder and a suggested solution. No attempt is made to make the elder feel guilty about the effort the caregiver is expending or the caregiver’s stress level. It is understood the elder knows the caregiver is working hard.

Setting the boundary is the caregiver’s responsibility. Deborah Colgan, MA, M.Ed., NCC

You can state what you need. You can be direct. You can set boundaries.

Pat