Category: #caregiver

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

Posted on June 9, 2022 by - #alzheimers, #caregiver, #caregivers

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

Posted on June 2, 2022 by - #alzherimers, #caregiver, #caregivers

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

When is overthinking bad?

Posted on May 18, 2022 by - #caregiver, #caregivers, Decision criteria, Overthinking

Calling all perfectionists and overachievers …

If you have a tendency to ruminate, excessively worry, second guess your decisions or even struggle to make decisions, you may be an overthinker. I would even bet that you have some OCD tendencies. The quirky kind, not the disabling kind.

May 18, 2022

Paralysis, Rumination, Overthinking

My overthinking tendency is rumination. Sometimes, I recognize it and sometimes, I don’t. Yes, I have the quirky OCD tendencies. My paper money has to be in a certain order and turned all the same way. My shoes have to be placed next to each other and in the correct L/R order. Not just kicked off in any old way. I have to eat an even number of cookies. Enough about me. What are your tendencies? Are you able to recognize them? Can you recognize your triggers? Do you know what your analysis paralysis is? Do you know what you overthink? 

When does overthinking cause problems?

When does overthinking cause problems? When it paralyzes you from taking action? When it keeps you stuck? When you realize that you have spent hours on a problem/issue with nothing to show for it? Have you noticed that your mind will always come up with another “worry question?” There will always be another “what if,” or “if this, then that.”

Our brains go in to analysis mode, which is good. However, it is not good to stay there. At some point we do have to make a decision and move forward. One of the problems with overthinking is that we stay in the analysis mode even to the point of becoming paralyzed. You have heard the phrase, “analysis paralysis.” It most commonly happens when we have too much information or we “feel” that we do not have enough good information to make a decision. We want to make the best decision possible. That is always my main objective and I am sure it is yours too. What we don’t realize is that we keep looking for the answers that we cannot know until we make a decision. The real reason we keep searching, is because we must not fail. We cannot fail, it is too important. We get afraid when we have important decisions to make. 

I get it. I want to know all of the possible scenarios and the possible outcomes too. But, that is not the way the world works. Look at it this way, if you are in a competition, whether it is sports, band, game night, or whatever, you can play a perfect, errorless game and still lose. You did your best and you did not make any errors, but you still lost. We cannot know every outcome. 

Stop overthinking and use 3 trusted resources

Use three trusted resources and allow appropriate time for research, reflection and choosing. I wish that I could tell you it was two hours, but maybe you need more or less time. Realize that your choice will not be perfect, but strive for “good enough, for now.” You can always make adjustments later. Maybe the best thing for you is two hours of research, discovering three possible options and then you take a day or two to think about those options (or you need to meet with others to flesh it out). Then it is time to make a decision.

Your brain(thoughts) will fight you. It will throw up all the “what ifs, buts, worst outcomes.” You can quiet it down. You can still make a decision. You can move forward. Mindfulness meditation really will help you calm your mind. 

Sometimes, thoughts are just thoughts

Your thoughts are just that, thoughts. They are not reality. In fact, they may be lies. Learn to challenge your thoughts. Sometimes, you will have to throw the bullshit flag on your thoughts. We all want to control situations, outcomes and consequences. We are not that powerful. The reality is that we can make the best decision possible with the information that we have, at this moment in time. We cannot choose the consequences. We cannot choose the outcome. It sucks. We beat ourselves up too much for things we have absolutely no control over.

Is it possible to stop overthinking?

Find your pattern of overthinking. What moments or situations cause you to go in to the overthinking mode? Note – write them down when you find yourself in an overthinking situation

You will find your pattern. Then when you are aware of it, that is when you are able to notice your triggers and will then be able to work on your strategy or plans of action. For example, you will give yourself, two hours of research from trusted resources. You will develop two or three options. You give yourself time to think about the positives and possibilities of the options. (1 to 2 days) Our brains go to the worst-case scenario, so be prepared for that. Understand that the probability of that worst-case scenario will probably NOT happen. Of course, it could, but really how likely is it? Make a decision and implement the steps to move forward. Set a time for evaluation (2 weeks – 2 months). Make updates or changes, if needed. Re-evaluate in 2 weeks to 2 months, etc.

You do not have to believe everything that your thoughts are telling you. What is the evidence in this situation? What are the logical and reasonable possibilities? If a thought is not logical, reasonable or helpful, then tell it so. I know that this sounds crazy, but you do need to talk to yourself out loud or at the very least write down the conversation. Do not have the conversation in your head. It will just keep going around and around.

Talk with a trusted friend. They may be able to see things that you can’t. They may have a different perspective than you and can see other options or possibilities. They can also give you a kick in the butt, when you need it.

Do some kind of physical activity

Walk, run, work out, do something physical. You need to burn off that cortisol energy. It will help your brain too.

If you find yourself overthinking in most situations, you may need to do some talk therapy. Talk therapy is a great tool, to help you see patterns, and how to make adjustments to move forward. Overthinking causes a great deal of stress and if you do not deal with stress, it can cause anxiety, depression, fatigue, headaches, stomach problems, etc.

How can you tell if you are overthinking?

When you find yourself focusing on the problem, you are probably overthinking.

The goal is to get in to the problem-solving or solution finding mode of thinking.

If you find yourself ruminating about the past or worrying about the future you are probably in the overthinking mode. If you are dwelling on how bad you feel or you are thinking about all the things that you have no control over, you are probably overthinking. Overthinking does nothing to prevent or to solve problems. Irrational fears often lead to overthinking.

Manage your energy, you only have about 4 hours of focused energy per day.

You only have so much energy every day anyway, so why not use it for solution finding or problem-solving rather than ruminating or staying stuck on the problem. Practice quicker decision making. Start with dinner choices or dessert choices. Read your options and decide in 3-2-1- choice. This is the biggie, choose where to go for dinner. If you need to, have 3 choices, then pick. You can do this.

Sometimes, you just have to declare it DONE!

Pat

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

Posted on May 12, 2022 by - #alzheimers, #caregiver, #caregivers, #dementia, overmedication

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

Typical story of a psychosis

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.

Too often, we fail to look for signs and symptoms of drug-induced psychosis

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:

    • 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

Manage Your Energy, Not Your Time and Recharge Your Tired Brain

Posted on April 27, 2022 by - #caregiver, #caregivers, time management

Promises of a better life, an easier life, if you will only use the XYZ method of time management. You are convinced that if you knew and could master the trick of managing your time to be more and more productive, your life will be better.

April 27, 20222

How many phrases pull you in to the “That would make my life better and easier?” Probably, quite a few. Why? Because, we are dealing with crap that is standing in our way of our lives being better and easier.

We see the ads, we see the promises, and we even search for solutions. Of course, we are leery, we have either bought or done things before that did not work for us. Still, we search. Why? Because, we want better. Something is out there to help us; it just has to be.

We have thought about time management wrong

What if we have thought about time all wrong? Maybe, we have only been managing deadlines, this whole time? Use a planner, they say. Planners and date books are great for solid meeting times, appointments or deadlines. There are list makers and there are fly-by-the-seat-of-your-pants kinds of people. I am a list-maker, but I have learned to leave space for spontaneous goings-on. Changes, reschedules, opportunities, missed out times, it is all good. Time marches on no matter what we do or don’t do. Our energy on the other hand, is finite. It does run out. We do need to rest and recharge.

Doing a mental versus physical activity and the energy levels each takes

When doing a physical activity that does not require a lot of focused attention to detail, we get tired. We rest, get cleaned up and we are ready to go again. When doing mental activities that take a lot of focused attention to detail, we have about three hours a day before that energy is zapped. Sorry, but a short rest and shower will not fix this energy depletion. The brain must rest, from processing information. Daydreaming is a nice way to rest the brain. Letting your thoughts wander is great too.

What can you do to rest and recharge your brain?

    1. Go for a walk

    1. Take a nap between 10 minutes up to an hour

    1. Take a shower, leisurely

    1. Play sports

    1. Stretch

    1. Go outside

    1. Journal

    1. Color or Draw

    1. Watch animals play

    1. Listen to music

Find what works for you. If you know that you will be having to process a lot of information, learn when you perform at your best. You may already know that you can only be detail oriented for an hour and a half at a time. Great, you have two of those blocks per day.

How to stay focused during your workday

Depending on how detail oriented I need to be or how much research that I need to do, I know that I have about three hours a day for that intensity. After that, I will need to do other tasks that do not take as much effort and energy. My best times are usually from 11:30 am – 1:30 pm and from 2 pm – 4:00 pm. If I have reading and research to do, I protect that time frame so that I will be at my best to work on my clients needs.  I check email once in the morning and once in the late afternoon. I scan the news in the morning and late afternoon. I check Twitter and facebook mid-day and late afternoon. I have this routine and I don’t waste any brain energy trying to figure out what I am going to do or not do next. Routines and habits help you conserve brain energy.

Chasing rabbits and wasting time

We can all go down rabbit holes at any time. We learn to catch ourselves doing that, course correct and go forward. Mindless scrolling, is a rabbit hole. If you are having trouble with that, set a timer for 10 minutes. Do something else. Read. Journal. Chores. Plan for the next day. Walk. Daydream.

Learning to calm yourself benefits your brain too. When you focus on the problem or issue, you get stuck because you cannot think about it in any other way. By taking a break, getting away, playing or being fully present in the moment, you can rest and let your brain work in the background. Who knows, it may come up with a brilliant new way to look at the situation or find even better options.

New perspectives. New ways to think about brain energy. New ways to plan your day. Give them a try for two weeks and see how you are doing. Make adjustments, you may be surprised at how much better you feel and how much easier your tasks become. You get to do your most intense work when it is best for you, your brain and your body.

Pat

Conflicting thoughts and how to decide what is best for you.

Posted on April 20, 2022 by - #caregiver, #caregivers

Conflicts inside our mind

We all have them, the mixed feeling or conflicting thoughts. What does it do to us? How do they make us feel? They stress us out. They make us tired both emotionally and physically. We stay paralyzed because we don’t want to make a wrong decision. It hurts us worse to make a wrong decision than it does to make a potentially right decision.

April 20, 2022

Internal conflicting thoughts is the experience of having opposing psychological beliefs, desires, impulses or feelings.

A few examples:

    1. You feel frustrated and angry at the health care system (doctors, hospitals, insurance companies) but, yet, you need them.

    1. You are disappointed in the lack of communication but you are unsure how to fix it.

    1. You are not sure that your loved one has the financial resources that they will need to have the best care possible for them, yet, you are not sure how much, if any, you can contribute.

    1. To be an advocate, you need good, science-based information that works for you and your needs.

    1. The frustration of unmet clinical concerns (diagnoses, treatment plans, home needs).

    1. Our inner child emerges and is ready for battle.

    1. Our compassion and losing the ability to be compassionate.

    1. Our Ego gets bruised and then we act out instead of seeking to find the best solution.

    1. Conflict with yourself – taking care of yourself along with taking care of your loved one.

    1. Unresolved family issues rear their ugly head.

    1. And many more…

What is causing this inner agitation? Ruminating thoughts? Troubling thoughts? Feeling like the thoughts are in control? You experience this out of control feeling and you just keep spinning your wheels. There is an element of fear. In fact, the “fear” of something is always at hand.

Relieve the stress and the conflicting emotions will disapper

When your mind is relieved of the stress, those feelings of conflict and turmoil will disappear. Our minds want to be in a state of calm. We like it when things are copasetic. So, how do we get there?

Your thoughts are not always true. Identify what thoughts are causing the distress. Do you have competing or conflicting thoughts? Get your paper and pen out. Write the competing thoughts down. Under them, write down the good points about each of them. We are looking for win/win ideas. Now you have to change hats to be the mediator. As a mediator you are looking for the best options for RIGHT NOW. There will be give and take. Get rid of the “either – or” mindset, look for a “both – and” mindset.

Your Want vs Reality

Have you figured out that the biggest problem is between your WANT and REALITY? Yes, it sucks, but more times than not that is what the conflict is about. Does that mean we give up? Of course not. Making things the best they can be under the parameters that we have is our goal. Rarely, do we have a perfect reality anyway so we know that we can course correct and move forward. We are made for challenges. Take the limits off of your thinking. Let’s try and see.

You are the one in control of your thoughts and your feelings. No one else. That is powerful. That is an “in control of me” empowering feeling. You have to be the one to learn how to handle your strong emotions and feelings. Drill down deep, what are they trying to tell you? Yes, they do have a message. They are ALWAYS trying to keep you safe. They will always raise a ruckus. It is your job to listen, step back and figure out what is real and what is not real. Are you safe, right now? Is this an old trigger? Is this a pattern? I know we just chased a squirrel here.

Back on task.

What does the evidence say to you?

What does the logic say to you?

Reasoning

Reasoning is a powerful tool for the mind. To be able to reason well, we need correct and true information. Three trusted sources is sufficient for you to make a well-reasoned decision. A trusted source is NOT ‘they said and I heard.”

Remember, we buy with emotion and justify with logic. Sometimes, we keep looking for sources to help us justify the way that we want. We keep searching until we find what we WANT it to be.

Be careful about how you are searching for information. Do you want the facts or do you want the biased information that will support what you want? When you know the facts and your options, you will actually feel much better about your decision. You will know that you have done everything possible to get the best information available at the time to help you make a decision. It doesn’t mean that it will be easy. It doesn’t mean that you won’t wonder? It doesn’t mean that you won’t make a mistake. We are human, we will probably always wonder. But those are just thoughts. They are not reality. The reality is that you did the best you could with the best information that you had at the time. Very few decisions are final. Oops, that did not work as well for us, so, you make adjustments and move forward. Progress over perfection.

Write these things down and answer them:

I am concerned about ____________________________________________________

I am afraid that _____________________________________________is going to happen.

Write down all the possible outcomes that you are thinking about.

Make 3 columns – Thoughts that reinforce Negative outcomes, Thoughts that make the situation stay the same, Thoughts that are Growth/Goal oriented realistic outcomes

Try to focus on the thoughts that are growth/goal oriented realistic outcomes. These thoughts are the motivators to help you take action.

Consider what you really want. What are your life values?

We want balance between our head and our hearts. When it is out of balance we have inner conflict. You are having trouble or confusion between accepting and aligning your belief with what is being presented to you. Accept the duality. Sometimes, you need to be still and breathe, just deep breathe. Allow your thoughts to calm down so you can think more rationally. Think about your life values and the principles that you live your life with. Decisions are hard. If you have no good decision, then which decisio

Pat

Family Caregivers: When to take a rest day

Posted on April 13, 2022 by - #alzheimers, #caregiver, #caregivers, Caregiver Information

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 caregiving responsibilities 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?

When you are a caregiver for more than 3 months

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.

Habits improve our health and well-being

Developing habits are good for us. I am talking about positive habits. 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. The demands of caregiving are exhausting physically and mentally.

The dreaded where to go when eating out question…

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

    1. Losing patience or compassion for your loved one

    1. Overreacting to small accidents

    1. Resenting or neglecting your loved one

    1. Withdrawing from your personal hobbies and friendships

    1. Oversleeping or not sleeping enough

    1. Overeating, not eating enough, or eating a lot of high-sugar foods

    1. Having health problems

    1. Abusing drugs or alcohol

    1. Having thoughts of suicide

    1. Making mistakes

    1. You are irritable

    1. Signs and symptoms of depression

    1. You feel exhausted most of the time

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

https://dailycaring.com/6-ways-to-make-it-easier-for-caregivers-to-take-a-break/

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?

Posted on April 6, 2022 by - #alzheimers, #caregiver, stress

April 6, 2022

How to make everyday stress work for you

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 mantra for stress management

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

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?)

    1. 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

If it isn’t visible, it isn’t happening and other bull$%^!

Posted on March 9, 2022 by - #alzherimers, #caregiver, #dementia, #multiplesclerosis, #parkinsons

Invisible Illness: how do you get others to “see” what is happening to you on the inside?

If it hasn’t happened to them, they have no idea what is going on. But, a lot of them have an opinion about how you are; how you should or should not feel. Even if they have experienced it, it may not be the same as how you experience it.

March 9, 2022

We are all different. Our life experiences are different. Our pain tolerance is different. Our bodies are different. Sure, they are comparable, but they are not exact. We metabolize foods and medications differently or not at all. So many variables affect our immune system. So many things affect the inflammation inside of our bodies.

Biological processes are variable. Cultural traits are different. Genetic make-ups are different. We all have special qualities. We have our own body type.

When did healthy become based on appearance?

You can be really thin and be very unhealthy. You can be overweight and be really healthy. People of all shapes, sizes, weights, can either be healthy or unhealthy. You are in your body 24/7 how do you feel and what is going on with you? Is your body nourished with the foods that it needs? I am not talking about stress eating or emotional behaviors, just plain old giving your body what it needs to function at its highest level. Food, hydration, rest, activity and sleep are all important for a healthy body.

What happens when a body has an autoimmune disorder? An autoimmune disorder is a condition when your own immune system mistakenly attacks your body. It destroys healthy body tissue by mistake.

What happens inside the body of one with an autoimmune disorder

How would you think a person might feel while all of this is going on inside their body? They have pain, tiredness, fatigue, nausea, rashes, headaches, dizziness and more depending on what disease they have. They feel these things, All-of-the-time, because they have these things all-of-the-time. It would be rare for them to not to feel bad because their body is under attack.

My hope is that these folks are working with their doctors and other health care providers to find out what works best for them and their needs. To have the best quality of life possible. I only want folks to take the medications that they need. To use other means to help manage their conditions. Nutrition, hydration, strengthening, mindfulness-based stress reduction meditation, stretching, rest and activity. It takes all of these things plus medications to improve quality of life.

I get it. It is hard to do all of these things, work full-time, have a family life, friends, etc. Don’t look at it as giving things up. Look at it as caring for yourself to improve your energy and strength so you can spend more time with those that you love and do the things that you enjoy doing. Your friends and family can do all of those things with you, except, take your medication. It is probably easier to have a work-out buddy to keep you engaged and committed to the routine. That is the key anyway. It will become a routine and then a habit. Once it is a habit, you no longer have to use a lot of brain energy to figure out all the particulars.

Chronic disease is hard on everyone

Living with a chronic disease is hard. It is hard on the person that has it and it is hard on those that love them. It sucks to make plans and then they get cancelled because of a flare-up or a bad day. Once or twice, you can usually get over it, but more than that, it begins taking a toll on all involved.

No body wants to make plans because they get cancelled. A wall begins to build up. Everybody is pissed and nobody is talking to nobody about the elephant in the room. Maybe, it is because you don’t want each other to feel bad? Maybe, it’s because, you know that sometimes shit happens and you have to adjust.

It is great to realize all of that. You must also talk with each other about it. How you see things, how it makes you feel and what you want. You aren’t really mad at each other; you are mad at the situation. If you are mad at each other, I suggest you go and get counseling now. It does not matter if it is a partner relationship or a friend relationship, you do need help in navigating these issues.

Non-medical messy side of chronic disease

Too often, only the medical side is addressed. No body wants to deal with the messy part of a chronic illness. The parts that leave families strained and sometimes broken. You have to deal with the messy parts. Once you do and you have a workable plan, it can make all the difference in your relationships. It is not easy, but the results are worth it. In my business, I deal with the medical side and most parts of the messy side. If you need a therapist, I will recommend that.

Learning and understanding what is truly going on with a person that has a chronic illness is eye opening. Being able to modify plans or activities will improve relationships. You want them at their best, so what are you going to do to help them get to their best?  Can you relate to what they are experiencing?

Pain is subjective. We all have different tolerances and what may be a 10 (the absolute worst pain you have ever had) may be a 3 or 4 (mild to moderate) to me. I am sure you have heard people state that they have had a kidney stone and it was the worst pain possible. It has to be worse than having a baby. Why? Because you “say so?”  Because the pain you experienced was the worst pain in your life does not mean that it was worse than the pain of childbirth. Some of you mom’s that have had both can speak to this. I have heard a few moms say that childbirth pain was the worst and I have heard a few moms say that the kidney stone pain was worse.

Chase the Rabbit

Here comes a rabbit chasing. No one needs to suffer from uncontrolled pain. I understand that all pain cannot be eliminated and that is not really the goal of treating chronic pain. We treat chronic pain to help those with that type of pain to live the best quality of life possible. An active life. A fulfilling life. Managing the pain to a tolerable level is the goal. Treating chronic pain takes a multi-prong approach. Medication alone will not provide the relief needed. Strength training is one way to reduce pain. Running or walking is another way to reduce pain. Eating for nutritional needs, is yet, another way to reduce pain. Hydrating every day is another way to reduce the pain. It is all connected. Yes, I know there are many different types of pain. Thus, the multi-prong approach. I don’t believe in cookie cutter approaches to treating pain. People are different, their pain is different, their tolerances are different, medications work for some, but do not work for others. It is very easy to get frustrated when every thing that you try does not work. I use a combination approach with my clients and that seems to work better for pain relief and pain control. It will take effort, some fine tuning to the plans to get the right combination that works for you, but it will be worth it. Rabbit chasing over, for now.

After a while, folks just give up. The one with the chronic illness and the one without the chronic illness, just give up. If your loved one has a chronic illness, help them to become they best they can be. Encourage them to take back control of their life. Help them to focus on the solutions and not the freaking problems. What can they do? What can they improve? What will it take to help them? You can’t make them, but you can encourage them, believe in them and help them when they ask. You can’t do it for them and they do get to decide what they will or won’t do.

To the one without the chronic illness, you need to take a look at your beliefs about the one that has the chronic illness. This may get ugly. Do you understand what they go through every day? Do you understand that they feel like they let everybody down? Do you understand your part in not being able to go and do? Are you becoming an enabler to their lack of action or lack of participating in activities? There are other things, but you get the idea.

Don’t give up! There are things to try. There are things that will make your life easier. Get ready to look forward to activities again. Yes, you have to think about getting ready. You have to reason it out in your mind. The negatives will come rushing at you. All of the “you have tried this and it didn’t work,” thoughts will flood your mind. It may not have worked then, but it is possible that it will work now by doing “x,y and z.” If you are not open to the possibility that things can get better and actually be better, then they won’t.

Who do you need on your healthcare team?

Who do you need to add to your health care team? Me? A sports psychologist? A nutritionist? A therapist/psychologist? A trainer? A workout partner? A deal with my anger and other emotions therapist?

An autoimmune disorder may cause destruction of body tissue, may cause an abnormal growth of an organ, or even cause changes in organ function. The areas most often targeted are blood vessels, connective tissue, joints, muscles, your skin, red blood cells, your thyroid or your pancreas and other endocrine glands.

Very few of these disorders can be seen. It is all happening inside the body.

Here are some of the most notable autoimmune disorders:

Next time, we will touch on other non-visible health conditions such as migraine, depression, heart disease, etc.

    • Crohn’s disease

    • Lyme disease

    • Narcolepsy (looks more and more like an autoimmune disorder)

    • Psoriatic arthritis

    • Raynaud’s syndrome

  • Ulcerative colitis

Pat

How do the 5 Senses Change in a Person with a Dementia

Posted on March 3, 2022 by - #alzheimers, #caregiver, #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.

Dementia Affects Changes in Perception and Processing

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 ou

Pat

What is your resistance to changecosting you?

Posted on February 24, 2022 by - #alzherimers, #caregiver, Caregiver Information

What happens when things do not go smoothly? What happens when things do not go our way? Stress levels rise.

February 23, 2022

Think about the turmoil in your life. The things that are stressing you out. Are you stressing out because of a decision that you “need” to make or is it really the resistance to change that you are fighting? The things that you are just uncertain about or confused about what to do next. Some of you need to take a few deep breaths right now.

Breathe in deeply through your nose for a count of 5 and exhale through pursed lips of a count of 6. Do this 5 times. Now, you can settle down and focus. You realize that “it” is not happening, right now and you are okay. Why would I want you to be able to focus? Why would I want you to realize that you are okay?

Our Individual Resistance when we are in the Big Middle of a Mess

Because things run together. They get intertwined and become a big mess with you in the middle of the situation. You cannot think straight when you are in the big middle of a mess. Most of us do not like messes. We like it when things go smoothly and we especially like it when things go our way. I have a resistance to change and I know that about myself. So, I have to manage resistance. I have to stop and figure out why I am resisting. Most of the time, it is because I don’t want to change. I can change and I can manage change. I had to realize that for me to have a successful change, I had to see the benefit. 

What happens when things do not go smoothly? What happens when things do not go our way? Stress levels rise. Reactions take priority over a plan. WTF, gets said multiple times. Dammit and shit are said a lot too. You may or may not say them out loud, but you sure are thinking them. It is okay, it can be a stress reliever and give you enough time for your thinking brain to catch up to your reacting brain. I know, friggin’ amygdala.

We have heard the phrase, what we resist, persists. Carl Jung is apparently the one who first stated this principle. Resistance is what stops us from getting things done. We use excuses, justifications, procrastination, perfectionism and even the voice in our head that is telling us that we aren’t good enough or we don’t have enough time. It also tells us other things, but you get the idea. Sometimes, you have to tell that inner critic to shut up.

Why we have Resistance to Change

We have resistance because we are afraid of something. We have resistance because we need to make some kind of change. We do not like change. It is hard and it takes energy to change. Resistance will always rear its ugly head when there is something that will need our energy and attention. We would be better if we learned to “let go” or let things be, just as they are. No judgement allowed. The goal is accepting things, just as they are, right now. If you keep resisting, then all of your focus and energy is going to something that you do not want.

Learn to refocus your energy and focus on what you DO want. You don’t give up. You won’t give up. It is not in your nature. Persistence is a good thing, especially if you are a helper or care giver. Look for the benefits. 

Recognize when Resistance Occurs

Recognize your resistance triggers and when they will show up. Be curious about them. We all have them. The question becomes, will we give up or will we move forward? Visualize the success in your mind. Set your personal goals. That is all you have control over, anyway. Decide how you will act during a tough time. Maybe, you will need to take 5 – 10 minutes to gather your thoughts and figure out the next best step. No, not the whole plan. Just the next step.

When you find yourself in the middle of a crap storm, look around, take inventory. Is anyone in mortal danger? Is any one about to die? If not, then you have time to take a few minutes to see how best to proceed. I know you want the pain to stop. We all do. That is part of the resistance, we do not like change or the unknown it takes energy and time.

Some signs you may be in a resistant mode:

    • You procrastinate

    • You are too busy

    • You are impatient

    • You forget things

    • You are not organized

    • You feel stuck or paralyzed

    • You are very impatient

    • You can’t or won’t make a decision

    • You find a reason Not to act

    • You complain a lot

    • You become defensive

    • You look for limitations and barriers

    • You avoid people or change

Antidotes to resistance:

    • Acceptance of how things are, right now

    • Observe and acknowledge how you are feeling

    • Let go of blame or judgement

    • Move – walk, run, work out, hike

    • Take the next step forward

You may have to start with accepting that you are not ready to accept what is. We resist because we don’t want to deal with “it.” We are fearful of the outcome. We may know intellectually what the outcome may be, but we are not emotionally ready for the outcome. It won’t go away. Get comfortable with being uncomfortable. Feeling out of control is another trigger.

Find the lesson

Find the lesson. There is always a lesson that we are supposed to learn. A lesson about ourselves. A lesson about our loved ones. A lesson about trust. We do have a choice. We can choose acceptance and move forward. It won’t be easy, but you can do it. Acceptance never means giving up. It means finding new ways to have the best quality of life possible for you and your loved ones.

I am more of a “see where we are and what needs to be done,” kind of care giver. I don’t deny the facts, but I sure won’t give up either. We can no longer do it this way, so what about trying the other way?  Focus on your realistic goals and options. You only have so much energy every day, don’t waste it on things that are not changeable or cannot be changed.

You never have to like what you are accepting, you are just no longer fighting it

You don’t have to be okay with the “thing” that you are accepting. It doesn’t even mean that you feel good or peaceful about it. It requires courage to face the reality of “what is, right now.” Maybe, the word acknowledging is better than acceptance in some situations. It is okay to hate it and not know what to do. Use a person to be your sounding board so you can work through scenarios. Ask for input or suggestions, realizing that you get to choose to use that information or not.

Are you ready to make some kind of change?

    • Identify your “want” in the change (not the should)

    • Give yourself time to prepare for change

    • Visualize your life during the change and after the change

    • Prepare for set-backs and moving forward again

    • Be kind to yourself and acknowledge all of your victories (both large and small)

  • Create an action plan (Empowering Health Options does this, too)

Pat

Has your life been hijacked by responsibilities outside of your control?

Posted on February 16, 2022 by - #alzherimers, #caregiver, #dementia

How do you feel about that? Okay, now, how do you feel about how you feel? Whew! That in itself is enough to make your head explode, isn’t it?

February 16, 2022

I learned a new phrase today, as I was doing some research on dealing with feelings, and I came across “meta-emotions.” I have never heard of that term before. I was thinking about my own experiences of how I felt about the frustration and anger that I felt when my life was hijacked. I did berate myself for feeling that way. How could I feel that way? I love my mama and I will do anything that I can for her. The frustration and anger was never about her. It was about the situation.

Meta-emotions can be classified into four types: negative-negative (e.g., feeling embarrassed about feeling sad), negative-positive (e.g., feeling guilty about feeling happy), positive-positive (e.g., feeling hopeful about feeling relieved), and positive-negative (e.g., feeling pleased about feeling angry).

When you can’t make things better

I could not make things better. I could not fix this so we did not have to deal with all of this crap. I wish that I could tell you that I adapted well. I did not. I made it much harder than it had to be on myself. I sure learned the hard way, that I would have been better off if I had learned to accept things as they were & adapt to the ever-changing situation.

Nope, just stuff it all down. Deep down, inside. Soldier on. That will work for a while, but not forever. It will come out. It will come up in screwy ways. You won’t even know why you are feeling like you feel. It may years down the road. You can’t figure out why your emotions are all over the place. Maybe, if you got still and curious you could figure it out? Talk therapy is a much quicker way to figure it out.

I think everyone needs to do some talk therapy. Shoot, three or four sessions may be all that you need. Therapists will give you the tools you need to figure some of this “emotions” stuff out. You will also be taught how to deal with it in an appropriate manner. In other words, you won’t have to show your ass.

You won’t have to keep beating yourself up for feeling bad about feeling bad. If you are a helper or care giver you have probably dealt with all kinds of emotions. I use feelings and emotions interchangeably sometimes because I won’t slow down and figure out which one it is. Here is my attempt at understanding the difference. Emotions are neurological reactions to external stimuli. They are instinctive and we are not usually conscious of them. That friggin’ amygdala, again. It really is trying to keep us safe. We have to help it, by realizing when we are in danger and when we are really NOT in danger. Feelings are the reactions to the emotions.

    • Something triggers you

    • You have an automated response (your fear emotion, anger or whatever the emotion, is being sent out through your body)

    • That lasts about 90 seconds and then that part is over

    • What happens next, is up to you. Will you cling to that emotion or will you interpret the situation as not life threatening, reassess and move forward?

    • Realize that how you think and how you feel directly impacts how your body reacts. This is the point where you take a breath or three and separate yourself from the experience to observe it, be objective and be curious about how you feel. No judgement allowed.

How do you manage difficult emotions?

Can you reinterpret what you experienced? Can you look for the good in the bad? Sometimes, we have to sit with that uncomfortable emotion. We have to feel it to process it. That is not fun. The upside is that we can learn from it and we don’t have to always have the negative emotions when we are triggered. We can learn. “Whatever you resist will persist.” I have no idea who said that first, but I have heard it a lot.

Emotions may not signal danger, but they may signal that you need to make a change.

Care givers have many, if not all of these emotions at one time or another. See if you can relate?

    • Guilt

    • Resentment

    • Anger

    • Frustration

    • Worry

    • Loneliness

    • Defensiveness

    • Grief

Questions to ask yourself when you feel certain emotions arise:

    • Is what happened unexpected?

    • Is what happened enjoyable?

    • Is what happened going to make it easier or harder for me to get what I want?

    • Can I control it?

    • Will I be able to cope with what happened?

    • Does what happened match with what I think is right or wrong?

    • Is what happened my fault or someone else’s?

(I borrowed these questions, but I cannot find my cite link.)

What are the positives of negative emotions?

Sadness or grief may make you pay more attention to details?

Anxiety or stress may encourage you to find new ways to deal with situations.

Anger or frustration may make you see that it is time for help or another set of eyes on a situation or problem.

Guilt may help us to figure out what is ours to deal with and what is not ours to deal with.

Negative emotions may be what you need to motivate you to make a change.

**Any time that you deal with your emotions, you will get tired and feel drained. It is very exh

Pat

Are there any positive benefits to being a family caregiver?

Posted on February 3, 2022 by - #alzheimers, #caregiver, #caregivers, #ms

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.

There will be difficult days as a caregiver

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.

Focus on what they CAN do

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.

Remember, they can sense emotions and feelings

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?

Caregiving teaches you a lesson about control

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.

Why family caregivers will not ask for help?

Posted on January 27, 2022 by - #alzheimers, #caregiver, #caregivers, #ms

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.

The months have flown by as a caregiver

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.

Caregivers need a support system

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.

Medical training vs home health training

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?

State what you need

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 helpers what to expect

 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!

Posted on January 19, 2022 by - #alzheimers, #caregiver

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 or care recipient. 

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.

Not everyone has the skills of a family caregiver

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

    1. The things that we do not know

    1. 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?

They may want different brands

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?

The “What if’s”

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 caregivers are not hands-on caregivers

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

    1. That help is not necessary

    1. That you are being judged by what you do or don’t do

    1. That you know what your loved one wants

    1. That no one else can care for them properly

    1. That you know everything about your loved one’s conditions

    1. That your care receiver cannot tell how you really feel, they sense emotions

    1. That the care receiver will act the same way as your friend’s mom

    1. 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