Month: June 2022

One of the Caregiving Tolls: Negative Emotions Caregivers Feel

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.

Accepting what you feel

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.

Give yourself permission to vent

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 isn’t that you have negative feelings

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 and negative emotions rear their ugly heads

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 are a family caregiver

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

    1. Close your eyes and put the emotion 5 feet in front of you (you want to look at it)

    1. Give your emotion a size, shape and color – watch it and recognize it for what it is

    1. Let that emotion return back inside of you

    1. 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. Not everyone is cut out to be a primary caregiver. 

June 22, 2022

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

    1. You are not patient.

    1. You do not have the time.

    1. You are finding excuses not to do it.

    1. 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.

You cannot always sustain a high level of care as a caregiver

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.

It may depend on your loved ones specific needs

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. What if they need toileting help or other personal care help? Talk about caregiver stress…

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. Experiencing caregiver stress is a given, but we sure don’t want you to get to caregiver burnout. 

Maybe, their needs have increased

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.

Time to set bourndaris as a family caregiver

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.

Yes, caregivers often have guilt

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.

Setting boundaris will keep caregivers and care receivers safe

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

Find your most important values

So, what are your governing values  as a person and a caregiver? 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. 

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

Are you a caregiver?

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.

It gets hard to be a caregiver, my own experience

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.

I wasn’t the primary caregiver, but I was still stressed out

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

Which ones of the above do you need to work on?

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

Signs of a Bad Caregiver

Hired helpers are not the only ones to watch out for… family caregivers or helpers may be a bad caregiver too. They may not only be bad caregivers; they could be dangerous too.

June 1, 2022

If your loved one is not comfortable around the hired caregiver or the family caregiver, it may be that their personalities don’t mesh. Nothing good or bad is going on, just a mis-match. Sometimes, it is much more than that.

Do they have the skills needed to provide quality care?

The caregiver may be well-meaning, but they do not have the experience or skills necessary to do the job right. This is more common in family members as caregivers and in hiring a private caregiver. Get references and check them out.

For example, you have a loved one that weighs 240 lbs. and the caregiver weighs 150 lbs. If your loved one needs help getting out of bed, bathing, transferring to a chair, and they cannot help themselves, what will happen? Dead weight is very heavy. If the caregiver has not had any training in lifting, transferring or bathing this type of person, what do you think is going to happen? Falls. Back pain and pulled muscles for the caregiver. Injury to your loved one. You can’t just pull someone up by their arm. Not to mention the dignity and respect issues. They are not a toddler and they deserve compassion, dignity and respect.

Look, they may be a bad caregiver. They may be a wonderful person, but they are not a good caregiver. They may be a good caregiver for someone else, but not for your loved one.

You have hired someone to help your loved one and to help out around the house with light housekeeping and cooking. You were specific on what you want/need and it has been agreed to by all parties, right? If not, fix that immediately. Never assume. Clarity cuts down on the aggravation. Create a task list.

Is your loved one out and about in the house or are they in their room “hiding?” Of course, they will need time to get used to their new caregiver, but it should not take a long time. Some folks are not used to have other people in their houses, especially people they do not know. Heck, some of them don’t want people they do know in their houses. Observe to see if it is a familiarity thing or a scared thing.

Specific Signs of Neglect or Elder Abuse

If your loved one is constantly complaining you have to determine if it is because they are frustrated that they are no longer able to do the things they used to do in their own home or is it more? You may have to ask questions along with observing how they are acting and what they are saying. If they don’t like the way the caregiver cooks, well, that is a complaint and can be fixed. If they are saying things like “they just sit there all day,” “they don’t talk to me or anything,” or “they talk to me like I am stupid,” those things may indicate poor treatment by a caregiver.

You see a bruise on the inside of their bicep area. Increased falls. Burns, cuts, scrapes or welts. Pressure ulcers or bed sores. Broken bones. These are all indicators of abuse and neglect. If the explanation does not make sense, trust your get and get them away from your loved one.

From a long-distance

You are a long-distance daughter and you call to talk to your mom. The caregiver always makes some kind of excuse as to why they can’t talk, right now. Is the caregiver always in the room when you call and talk to them or in the same room when you go for a visit? This is a controlling behavior by the caregiver and is not appropriate.

Do they care/love their caregiver too much? Watch out for money being given to the caregiver. Watch out for too much closeness, too fast. It is perfectly fine for them to get along and to care for one another, but it still must be a professional relationship.

Your loved one seems to have declined physically (weaker, more tired) or emotionally (not their normal talkative self). There could be a medical reason. Weight loss or malnutrition are other indicators of inadequate care. It may not be abuse, some caregivers are over their heads with dementia patients, for example.

I would like to make the difference between a bad caregiver and an abusive caregiver. A caregiver can be a bad caregiver and not be abusive towards the care recipient. The caregiver has not been adequately trained for the care recipient. They don’t understand all that goes in to providing care or help to a person with limited mobility, a dementia or a traumatic brain injury. An abusive caregiver does harm to the care recipient or allows harm to impact the care recipient.

If you are suspicious, get the caregiver away from your loved one. At the very least put-up cameras or nanny cams to see what is going on in your absence. If you get a “feeling” or you know that something is not right, trust that instinct. Do not reason it away. You don’t have to know why you know; you just know.

FYI

SIGNS AND SYMPTOMS OF SPECIFIC TYPES OF ABUSE

Physical abuse Unexplained signs of injury such as bruises, welts, or scars, especially if they appear symmetrically on two side of the body Broken bones, sprains, or dislocations Report of drug overdose or apparent failure to take medication regularly (a prescription has more remaining than it should) Broken eyeglasses or frames Signs of being restrained, such as rope marks on wrists Caregiver’s refusal to allow you to see the elder alone
Emotional abuse In addition to the general signs above, indications of emotional elder abuse include Threatening, belittling, or controlling caregiver behavior that you witness Behavior from the elder that mimics dementia, such as rocking, sucking, or mumbling to oneself
Sexual abuse Bruises around breasts or genitals Unexplained venereal disease or genital infections Unexplained vaginal or anal bleeding Torn, stained, or bloody underclothing
Neglect by caregivers or self-neglect Unusual weight loss, malnutrition, dehydration Untreated physical problems, such as bed sores Unsanitary living conditions: dirt, bugs, soiled bedding and clothes Being left dirty or unbathed Unsuitable clothing or covering for the weather Unsafe living conditions (no heat or running water; faulty electrical wiring, other fire hazards) Desertion of the elder at a public place
Financial exploitation Significant withdrawals from the elder’s accounts Sudden changes in the elder’s financial condition Items or cash missing from the senior’s household Suspicious changes in wills, power of attorney, titles, and policies Addition of names to the senior’s signature card Unpaid bills or lack of medical care, although the elder has enough money to pay for them Financial activity the senior couldn’t have done, such as an ATM withdrawal when the account holder is bedridden Unnecessary services, goods, or subscriptions
  Duplicate billings for the same medical service or device Evidence of overmedication or undermedication Evidence of inadequate care when bills are paid in full Problems with the care facility:
– Poorly trained, poorly paid, or insufficient staff
– Crowding
– Inadequate responses to questions about care

Pat