Category: #parkinsonsdisease

Could it be an adverse reaction to a medication?

Posted on March 2, 2023 by - #alzheimers, #caregiver, #caregivers, #dementia, #parkinsons, #parkinsonsdisease, Caregiver Information

It is springtime, and you are excited to be outside and doing your thing. Whether it is cleaning up, planting, prepping, or mulching. It is great to be outside, even if you are just enjoying the weather. Time to go inside, get cleaned up, and ready for dinner. All of a sudden, you start itching and you notice a rash on your forearm. Do you think about an adverse drug reaction? Do you think about a drug reaction? 

March 1, 2023

You assume that it must be poison ivy or some other weed irritation. Over the next couple of days, the itching is still making you crazy and you are beginning to feel miserable and aggravated. You begin taking over-the-counter Benadryl or some other antihistamine. Two weeks later, it is better, but it is still there.

What is the cause? Yes, it could be poison ivy mixed up in the mulch you spread. Yes, it could be some other weed or, who knows what? It could also be one or more of your medications. Most of us don’t relate itching and redness to a drug reaction. Especially, if we have been taking our meds for a few months. 

Adverse drug reactions are not side effects. An adverse drug reaction is always negative and may cause harm to you. A side effect is a secondary effect of a medication, which could be harmful, beneficial, or neutral. Usual side effects are where you see a lot of off-label use of medications.

A drug allergy is a serious matter. Technically, it is an adverse drug reaction. In a drug allergy, your body recognizes “it” as a foreign and dangerous substance. The body then activates the immune system to fight it off. You may see rashes, hives, itching, wheezing or other breathing problems, and inflammation. In severe cases, you may see anaphylaxis, which is life-threatening. True allergic reactions happen in about 10% of adverse reactions.

The time frame is different for a drug allergy and an adverse reaction (usually). In a drug allergy situation, the immune system evens occur within minutes to a few hours after exposure. Rarely, does it occur after 24 hours of exposure.

An adverse drug reaction can occur anytime after exposure to the medication. Where it gets confusing or better yet, forget about it when it happens weeks or months after you begin taking the medication. Some adverse drug reactions can be due to the drug itself or an interaction with another drug.

Symptoms of an adverse drug reaction vary by medication, but common ones include:

·       Digestive system bleeding

·       Heartburn

·       Fatigue

·       Sleepiness

·       Nausea/Diarrhea

·       Lightheadedness

·       Dizziness

·       Constipation

·       Skin rashes

Adverse drug reactions aren’t caught a lot of times. Most of the time the physician sees the complaints as “another problem.” Guess what you get? Yep, another prescription. It takes time and effort to figure out what is going on and what may be causing the problem. This is where you can use someone, like me to help figure things out.

We didn’t discuss intolerance, but it is a possibility too. You cannot tolerate a certain medication or the side effects that may occur. Usually, this has to do with metabolism and your body’s ability to use the medication.

Drugs that most commonly cause Adverse Drug Events that lead to a hospital visit:

·       Antibiotics

·       Anticoagulants (blood thinners)

·       Insulin

·       Opioid pain meds

·       Benzodiazepines

·       Renin-angiotensin drugs (blood pressure meds) Ex. ACE Inhibitors, ARB’s (Angiotensin Receptor Blockers, ARA’s (Aldosterone-receptor antagonists)

·       Lipid modifying agents

·       Urological medications (ex. Urinary incontinence meds)

Drug reactions to medications happen more than we realize. Strange symptoms may occur such as unexplained drowsiness may be a symptom. The dosage prescribed may be too much for you. Remember, allergic reactions occur fairly quickly after the medication has been administered. Anaphylaxis reactions may occur immediately or within half an hour of administration. Anaphylaxis is a life-threatening reaction. You may see these terms, adverse drug reaction, drug reactions, adverse reaction, allergic reaction, or adverse event and they are almost always talking about an unintended adverse drug reaction. Anyone taking a drug can have reactions to medicines even if they have taken the drug before and had no problems. 

You know your body and how it feels. Don’t dismiss things that are happening for more than three or four days. You may not know what it is, but you know that you are “not right.” Yes, it could be the side effects of a drug or it could be a possible adverse drug reaction. Your response to a drug may be different from another person on the same drug. You may know folks that feel this way and maybe they could benefit from my services. Let’s have a chat and see. I don’t know if I can help them or not until we talk and it is free.

Leave a message if I am unable to answer.

Pat 865-684-8771

Feelings that a Well Spouse Has

Posted on January 25, 2023 by - #alzherimers, #caregiver, #caregivers, #parkinsonsdisease, Caregiver Information

Good relationships take work on the parts of both people involved under the best of circumstances.  What happens when one of the partners becomes seriously ill or will need help for more than six months? It may be from a stroke, cancer, traumatic brain injury, mental health/psychiatric disorders, spinal cord injuries, dementia, Alzheimer’s disease, Parkinson’s disease, etc.

What happens when relationship challenges rear their ugly head? Will you address it? Will you ignore it? Will you stuff your feelings way down deep? Will you deal with it in a healthy way? Decisions, decisions, decisions.

January 25, 2023

Challenges arise when the changes come. There will be changes. No one can tell you when they will come or what they may be. Deal with them as they come. You can stuff your feelings, but eventually, they will come out. It won’t be in a good way, either. Acceptance is hard. Accepting things as they are, right now is hard. We have to give ourselves grace for every moment.

Learning about their chronic health condition will help you to understand what is happening. Yes, I know there is usually more than one. Accurate information about what is happening and what will come will help you be more prepared to handle situations.

The challenges that cause the most aggravation are:

  1. Toileting and incontinence issues
  2. Showering/Bathing
  3. Eating out
  4. Repetitive questions
  5. Relationship strain
  6. Fatigue
  7. Guilt

Learning healthy ways to cope will help in this journey. Yes, it will be a journey. You will have good times, bad times and okay times.

Things you can do to help yourself destress:

  1. Find things you can do together
  2. Accept that you are doing your best
  3. Breathe, just deep breathe
  4. Have someone you can talk to and vent to
  5. Go for a walk/run
  6. Play a sport
  7. Meet up with friends for lunch
  8. Have a massage
  9. Tell others what you need, no one is a mind reader
  10. Keep your own doctor appointments
  11. Eat for nutritional needs
  12. Sleep and rest
  13. Learn to become more resilient (yes, you can do that)

It is okay to feel your feelings. It is okay to talk about your feelings. It is even okay to not have an answer. It is not okay to act aggressively or become verbally or physically abusive. Physical abuse includes doing things “rougher” than is necessary.

Feeling sadness, anger and frustration are normal feelings. It is how you handle those feelings that make the difference between a healthy relationship and an unhealthy or abusive relationship. Don’t bottle up your feelings, you will eventually explode.

Warning Signs that you Need Help:

  1. Your own health is in decline
  2. You find yourself anxious and irritable
  3. You are relying more on alcohol or other drugs
  4. You are becoming withdrawn
  5. Smoking or eating more
  6. Overreacting to minor nuisances
  7. You are feeling increasingly resentful
  8. You are constantly exhausted even when you are resting & sleeping
  9. You are beginning to feel helpless or hopeless
  10. Backaches, headaches, stomachaches or other physical problems

Caregiving doesn’t always have to be bad or feel like a chore. In fact, a lot of folks find themselves okay with being their spouses’ caregivers. Learn what you need to do for yourself so that you are a more resilient caregiver. Find three things that you will do each day for yourself.

Pat

Do you have cyberchrondia?

Posted on November 16, 2022 by - #alzheimers, #caregiver, #information, #parkinsonsdisease, Symptom checker

Most of us have used Dr. Google for signs and symptoms that we have experienced. It is a good tool if you use credible sources AND you know how to differentiate things. Too often, many of us do not know how to discern relevant information from non-relevant information. You get too focused on what is happening and the cause. What you have determined as the cause may be happenstance. It just happened to occur and has nothing to do with what is happening.

November 16, 2022

I think that it is great that we can research information. We need to be careful and use credible websites that have good information. You must do your due diligence on what sources are good, credible, and have up-to-date information. If you are going to research medical information, you deserve to find and use the best available. This is also where it is a good idea to know your biases and find out what your unknown biases are. It makes a big difference in how you search for things.

You can go down a rabbit hole in a New York minute and still have NO good information. You will have information, but it probably will not be good information. What is your purpose for searching for this particular information? Is it to prove what you think is going on or are you open and curious about what might be happening?

It is great to have your signs and symptoms written down. It is great to have a diary of what has been going on, what you have been eating, what physical activity you have been doing, and what is your general mood. For those of you thinking, that is too much to do. Then why are you searching for information online? Are you familiar with the term “GIGO?” Garbage in, garbage out. Think about that.

You don’t have a clear picture of what you need to search for. Why do you think there are millions of pieces of information for you to look at? Why do you think there are multiple possibilities when you use symptom checkers? You have lasered in on one thing and you are dismissing other possibilities because you are not taking the time to assess your whole body, all of your current diagnoses, and the medications you already take.

Look, our bodies are fearfully and wonderfully made. We have our own set of “normal for us,” kinds of things. You may have only one diagnosis, but someone else may have four different diagnoses. The totality of you matters, you have to step back and look at the whole picture.

I want you to be well-read and up-to-date on what is going on with your body. Find the best resources. Work with your doctors. It is great to discuss different possibilities. We know a lot of times it will be the process of elimination. Use major hospitals, such as the Cleveland Clinic, Mayo Clinic, Or Johns Hopkins. Use PubMed. Use the CDC. Use NIH. Use the (dot)Org sites for diagnoses.

Questions to ask when evaluating a website:

  1. Who runs the site?
  2. What is the purpose of the site? To inform people? To sell products? To promote the opinions of a person or a group?
  3. Who pays for the site? Is it ads? Do they clearly look like ads or “neutral” health information? Is it a business?
  4. Is the health information fair and balanced or biased towards a “claim or cure?”
  5. Where does the information come from? Do they cite and post references?
  6. Is the information up to date? Things change fast in the medical world.

I think it is better to use your time and energy to keep a health journal and talk regularly with your primary care doctor. Together you and your doctor will figure out the next steps and if you need to see a specialist. Too often folks either overestimate their symptoms and end up taking the wrong medication or doing the wrong self-treatment. For others, you underestimate your symptoms and do nothing or waste time waiting while the condition worsens.  I have recently learned a couple of new terms, “health anxiety,” and “cyberchrondia.”

Health anxiety refers to the excessive worry that “something” is wrong or you are fearful of a missed diagnosis or a misdiagnosis. The key word is “excessive.” Are you adding unnecessary worrying or anxiety to your life? If that is all you are fixated on, then I say, YES. Let’s try some balance here. Start researching things you can do, right now to improve your health no matter what else is going on. Eating for nutrition, doing physical activity every day, and drinking your water every day. Focus on what you can change to make a more positive impact on your health.

Questions about a sore throat or if someone has slighted you used to come and go in your mind. You let it go. It was just a passing thought. If anything seemed serious, you would go get it checked out. But now, you have a computer at your fingertips and you have to know. Because you can. Statistically improbable, but you latch on to it. Down the rabbit hole, you go, and you are finding more and more of the awful things it could be. Never mind that none of the sites you are now looking at are “good” sites. Your mind goes to the worst possible thing. That is what it does automatically, we have to stop it and get back to balance. You may be looking for reassurance that you are not going to die or you are going to be okay…but that is not what you are finding. You are finding the doom and gloom scenarios. It is a freaking algorithm people. Once you click on a link, you are given many more links with that same type of information.

According to Psychology Today, there are 5 tell-tale signs that you are a cyberchondriac.

  1. You check online for symptom information from up to 1 to 3 hours per day. On average, people high in illness anxiety spent a little over 2 hours a day as a high point during the past month on their worst day. In contrast, people low in illness anxiety spent less than an hour, or 1 hour at the most on their very worst days.
  2. You fear having several different diseases: Those high in illness anxiety feared having nearly 5 diseases compared to their low illness anxiety counterparts, who feared having less than 2. How many diseases do you think you might have?
  3. On your worst day, you’ve checked 3 to 4 times a day: People high in illness anxiety not only spend more time but also take more opportunities to search online for information on their symptoms. Those low in illness anxiety check perhaps once a day, if that, even when they’re feeling the sickest.
  4. Looking online to get symptom information makes you feel more anxious: If those high in illness anxiety are trying to reassure themselves, their online probing is only making them worse. During and after their checking sessions, they report far higher anxiety than individuals scoring low on the illness anxiety scale.
  5. Your health is actually medically stable: Although people high in illness anxiety had a higher self-reported disability, their health hasn’t undergone major changes. They were actually less likely to have an unstable medical illness than were those low in illness anxiety.

If these 5 qualities apply to you, The Doherty-Torstrick team propose that your best way to handle your anxiety is to stop checking. 

Susan Krauss Whitbourne 2016

Tips for when you go down a rabbit hole and have a cyberchrondiac attack.

  1. Remember it is not all you. Sometimes your brain hijacks you.
  2. Talk about your fears with your primary care doctor. Maybe you are searching and searching for things to go wrong because of a prior catastrophe. Waiting for the “other shoe to drop,” as they say. The reality is that you are afraid something might sneak up on you again.
  3. Check in with your body, learn to meditate, and feel your feelings. You don’t have to act on them, but you must recognize them.
  4. Question why you are believing this way. What is the evidence? Is it true? Is it helpful?
  5. Don’t beat yourself up. The stress is coming from somewhere, let’s try to identify that and work on that.
  6. Sometimes, you just have to breathe deeply for 5 minutes and move on to something else.
  7. Set a time limit on your search – 20 minutes

Pat

What Caregivers Do Need from You

Posted on November 2, 2022 by - #caregiver, #caregivers, #parkinsonsdisease, Caregiver Information

Caregivers need to hear that they are appreciated. They need practical help that almost anyone can help if they are willing to put forth some time and effort. You have said, “If there is anything you need, let me know.” Did you mean it? I am going to tell you what they need and want.

There are really helpful things you can do and say to caregivers or helpers. Last week we talked about what not to do and say. This week we move towards helpful things to do and say.

November 2, 2022

This time we are going to be talking about what you can say and do to help your friend or loved one who is a caregiver. Did you really mean it when you said, “Let me know what I can do to help you?” If you mean what you say and say what you mean then this article is for you. If you do not mean what you say then you can stop reading now. We are going to get into the practical and doable things.

What caregivers and helpers want and need to hear.

  1. Recognition and Understanding – Recognize that what they are doing matters and is helpful. Try putting yourself in their shoes, and be understanding when they are stressed and need to vent. Be understanding that they are exhausted and need a break from both thinking and doing. A short visit to shoot the breeze or watch a movie. Find a distraction when they cannot leave their caree (care receiver).
  2. Time to recharge – Offer to stay or sit with the care receiver for two to four hours so they can go and do whatever they want to do. Are you willing to do this once a week, once every two weeks, or once a month? What day and time? Be specific.
  3. Provide respite care – This could happen a couple of ways. Find a facility that allows for respite care and find a company that provides in-home care so the primary caregiver can get away. Cost is usually the main factor. How many friends, family or church members can donate money to provide this much-needed service? Imagine what a week away would mean to them.
  4. Take them out to eat and to a movie. If you can, pay for the in-home care or find someone to sit with the caree for three or four hours. Most of the time, it really is just being there in case the caree needs something. It is not like you would be asked to do anything medical.
  5. Emotional support – They may need to vent. They may need to talk about what is going on with their caree. They may need to talk about something else.
  6. Feel heard and understood – Acknowledge how hard this may be for them. Understand that they have bad days and feel anger, hate and rage.
  7. Send flowers
  8. Offer to be the communication person – keeps others updated or put info on a website like Caring Bridge
  9. Send a thinking of you text and state – no need to respond
  10. Coordinate the offers of help and support
  11. An email with a joke or two
  12. Remind them they are loved and cared about
  13. Say, “I will be keeping you in my thoughts and prayers, every day and sending you good vibes.”
  14. Share “remember when” stories about your relationship
  15. Share funny stories that you have witnessed
  16. Laughter provides many great benefits – watch a funny video
  17. Say, “I love you.”
  18. Offer to sit with their mom or dad so they can go out with their spouse and kids.
  19. Ask, “How can I be a good sounding board for you?”

What caregivers would like you to do and how to effectively help them.

Yes, it would be great if the caregiver had a list of things to be done and errands to run, but most have not had the time to do one. Maybe you are the one to make the list and place it on the refrigerator so folks can sign-up.

  1. Never offer to do anything that you do not want to do. The look on your face and being told no is more than the caregiver can handle. They will shut down.
  2. Ask, “When is the best time to come for a visit and how can we help during the visit?”
  3. I am coming over on Saturday from 2 to 5 to stay (with your loved one) so you can take a break. Be specific.
  4. Give a Visa/MasterCard gift card of $50 – $100 and say, “Enjoy.”
  5. Pick up a meal from their favorite restaurant and deliver it.
  6. Make a meal and deliver it – use throw-away containers
  7. Make a few freezer meals and take them over.
  8. Set up a meal train to provide meals anywhere from 3 to 7 days a week (ask about likes/dislikes)
  9. Make phone calls and do research for them – if asked
  10. Donations to help cover lost work and medical expenses
  11. Offer to coordinate medical bills, EOB’s and medical claims. Only if you know how.
  12. Give a gift certificate to a spa/massage
  13. Mow the yard (either the caregiver’s yard or the care receiver’s yard or both)
  14. Do laundry – Pick it up and bring it back
  15. Help clean the house – vacuum, dust, sweep, mop, wash dishes, change the sheets, clean the shower/tub and toilet, wipe down surfaces – nobody expects you to deep clean
  16. Clean the gutter
  17. Take their car in for an oil change
  18. Run the errands – grocery shop, pick up Rx’s
  19. Sit with the care receiver so the caregiver can run errands
  20. Take the care receiver to the doctor’s appointment
  21. Deliver a care basket – good snacks, a book to read(nothing about caregiving allowed), favorite lotion and skin care things, gift cards, blanket, neck pillow, board game, cards, Mani-Pedi gift certificate, etc.
  22. Wash and vacuum the car
  23. Rake leaves
  24. Shovel snow
  25. Clean out the refrigerator
  26. Change the air filter
  27. Shred old documents
  28. Help clean out a closet or room
  29. Clean out the garage
  30. Replace light bulbs
  31. Walk the dog
  32. Clean out the litter box
  33. Take animals to the vet
  34. Take animals to the groomer
  35. Wash the outside windows
  36. Clean the oven

Think about the things that you do at your own home. The caregiver needs those things done either that their own home or the care receiver’s home. Find 2 or 3 things that you don’t mind doing and do them. Do the things that you don’t mind doing. Do not do things that you hate doing. For example, I don’t mind doing laundry, taking the cars in for service or cleaning, or running errands. I hate washing the outside window and cleaning the oven and I won’t do them. Other folks have different likes and dislikes. So, what I hate doing, someone else doesn’t mind doing.

Be specific about what you will do and when you will do it. Ask, if that is okay with them and if not, be flexible. Clear communication is important. Do not assume.

It is not a requirement to help out financially. If you can, that would be great but not a necessity. Your time, efforts, and help will mean more. So there is no misunderstanding, be upfront about what you can and cannot or will and will not do. It is perfectly fine to state that you can’t help with the financial expenses, but you can run errands and pick up things that have either been paid for or they can send you with some form of payment.

Most caregivers don’t assume you will pay for things, but they may simply forget to give you a way to pay. Just remind them that you need a check or card.

Pat

What Caregivers Do NOT Need from Others

Posted on October 26, 2022 by - #alzheimers, #caregiver, #caregivers, #dementia, #parkinsonsdisease, Caregiver Information

You may mean well. You may even mean what you say, but you are hurting them rather than helping them. Will you be open to learning how to better support someone who is helping a loved one? It will require some effort and thinking on your part.

October 26, 2022

I have said some things in the wrong way. I really meant to help, to be supportive and available. What went on in my own mind, did not play out well for someone I was trying to help. I had to realize that I was looking at their situation through my own ways of caregiving and what I would have liked help with.

If you truly want to be a help to your friends or family members that are caregivers, you have to buck up and take the time to learn what they need and want help with. No, that does not mean rapid-fire questions. A lot of the time, they do not know what they need or want because they are in hell and too stressed out to think.

What do you do? How about you learn what they don’t need and don’t need to hear?

  1. Judgement – Don’t second guess them or their choices. You don’t know their family dynamics and you are not in their shoes.
  2. Horror stories – They don’t need or want to hear about all the messed up crap that happens in nursing homes or what happened to “so-and-so.” Just shut up, there is no good that can come from that.
  3. Don’t ask what they need – Granted, this is difficult as you may want to help, but you don’t know what to do. Give them the gift of your time. You know the things that need to be done at your own home. Mowing, cleaning the house, laundry, running errands, grocery shopping, and making dinner.
  4. Don’t make more work for them – Don’t just show up, don’t call and say. “the gang is coming over to visit you.” They will feel the need to clean up and get the place cleaned up.
  5. Don’t ignore them – Maybe they can’t attend functions much anymore, but you can keep including them. Update them and let them know that you are thinking of them.

Now we will move on to, “What NOT to say…”

  1. “If you ever need a break, call me.” – What the hell. They do need a break and they don’t have time to go take a shower, much less call you.
  2. “You have to take care of yourself, too.” – Do you really think that they don’t know that? You are adding more stress and guilt, so unless you are offering to sit with their caree (care receiver) so they can take care of themselves, shut up.
  3. “You look tired.” – They are tired.
  4. “I don’t know how you do it.” – They have no choice.
  5. “God doesn’t give you more than you can handle.” – That statement is wrong on so many levels.
  6. “You will get your reward in heaven,” – You have just discouraged them more.
  7. Why do you keep going to visit them, they won’t remember it anyway.” – Their loved one still deserves love and care. They may not remember your name or who you are to them, but they sense and know that you are someone that loves them and cares for them.
  8. “You should put them in a home.” – You don’t get to decide what is best for them and their loved ones. Pretty much, anything that has a “should” or “would” in it ….keep it to yourself.
  9. “I could never do what you do.” – You don’t know what you will or won’t do until you are in your own situation. All relationships are different. All families are different.
  10. “I wish there was something I could do to help.” – Bullshit, you would do something if you wanted to. We will get into the things you can do and say next week.
  11. “You should get some help.” – Do you really think that they haven’t thought of that? Maybe, they can’t due to finances. Maybe, they have hired folks that do not show up.
  12. “How are you doing?” in front of the caree (care receiver) – Really? Do you want them to vent right in front of their loved one?
  13. “You need to find some time to relax.” – I am sure they would love to, but when and how?
  14. “Don’t feel guilty about …” – Feeling guilt is a part of caregiving.
  15. “Everything happens for a reason.” – No, it doesn’t. Stuff happens and we have to deal with it.
  16. “I know just how you feel.” – No you don’t. You may have had a caregiver type of experience, but it is not the exact same. Situations are not exactly the same, people are not exactly the same, and needs are not exactly the same.
  17. “What doesn’t kill you, makes you stronger.” – Do you think this hardship is making them stronger? That is foolish.
  18. “At least it’s not cancer.” – At least it’s not…statements cause more pain to the caregiver.
  19. “Just think positive thoughts.” – Way to go, you have just increased the feelings of guilt and pressure they put on themselves.
  20. “Your mom (dad) used to be a great person.” – Don’t talk about their loved one in the past tense. It is hard enough to watch a loved one decline, without being reminded of what has already been lost.

Think before you speak. Practice what you will say. Say it out loud. How does it sound? Is it uplifting or helpful? How might it be taken by someone who is stressed out and exhausted?

If you find yourself using any of the following, don’t do it. “I think,” “You should,” “I would,” “You could,”

Shut up. I get it, I want to help and fix things too, but some things are not meant to be fixed by you. That is a hard lesson, but a helpful lesson on being fully present and letting them vent. You just sit there and be the listener.

Next week we will talk about what to say and do to help a caregiver.

Pat

How to decrease wandering and aggressive behaviors

Posted on September 28, 2022 by - #alzheimers, #caregiver, #dementia, #multiplesclerosis, #parkinsonsdisease, Caregiver Information

Our bodies are made to move. When we sit for long periods our body hurts. Our joints and bones hurt. We simply do not feel good. Now, imagine that you have a disorder or chronic health condition that makes movement more difficult or you can’t remember to exercise. Your body still needs movement to relieve pain and relieve excess energy.

September 28, 2022

Move more, hurt less. Move more, rest better. Movement and exercise for the care receiver will make the care giver’s life easier.

Is your loved one restless? Do they wander? Are they withdrawn? Hurting? Regular exercise and movement will help decrease these issues. Do something every day. We often think about things to keep the mind busy, but we sometimes forget about the body. It takes both to make an impact on their well-being.

Those dealing with Parkinson’s disease know that movement and breathing exercises help them to maintain strength and independence longer. They seem to be more open to exercise classes and doing workouts at home. Why? Probably, because they have all of their mental faculties, it is their body that is failing them and they want to be as independent as possible.

Those dealing with a dementia, such as Alzheimer’s disease, are experiencing brain failure. They become less and less aware of what their body needs. They forget that their body needs movement and exercise. Over time, they lose the ability to reason through the many steps it takes to exercise. These folks need reminders and workout buddies to help them achieve their goals. Many times, they can mimic what they see.

What they can do safely is of great importance. As with any exercise routine, a physician needs to be consulted. Maybe, a visit to physical therapy and/or occupational therapy is a good idea. PT’s and OT’s can help with an exercise program that can be done at home. Any exercise needs to be done appropriately. Form matters. Consistency matters. Never giving up matters.

Rock steady boxing has great results for folks that are dealing with Parkinson’s. Deep breathing exercises and vocal exercises are important too. Walking is good for everyone. Being outside is good for everyone. Playing in the dirt (aka, gardening) is good for almost everyone.  So, what, if you have to modify things? Being adaptable is a plus.  

Walking, weightlifting and dancing are great exercises for folks that are dealing with any type of dementia. The body needs to work in order to get tired. If we don’t get tired, we get restless. We can’t sleep and we get a little testy. Now, imagine that your brain is failing and you can’t reason out these things. You only know how you feel at this moment in time. You have to get your “willies” out somehow. You wander, you follow people around, and you ask the same question over and over.

Don’t forget about brain use activities. They are important too. Coloring, making something, building something, and doing a puzzle are all important, too.

I know that some of you are thinking, “I just want to get X, Y, and Z done.” Let your loved one help, give them a job. Be fully present and engaged with them. It won’t take any more time and it may even take less time because you won’t have all of the interruptions.

People before things.

Help your loved one to take care of their exercise needs. Develop your routine and stick to it. Put yourself in “time-out,” when needed. Think outside of the box. Who can exercise with them for about 30 minutes every day? Total visit time would probably be 1 & ½ to 2 hours. I bet you can find other family members or friends that can do that visit.  You have to tell folks what you need help with.

Those that have requested to stay at home (age in place), for as long as it is safe for all…will need to be fit, and have some strength and endurance. When they become “dead weight,” or can no longer toilet themselves, they will have to begin the transition to assisted living and nursing homes. It is possible to keep them at home with 24/7 in-home care.

Strength and balance exercises are very important.

The health benefits of exercise include:

  • Improved mood
  • Better sleep
  • Reduced likelihood of constipation
  • Reduced wandering
  • Reduced aggressive behavior
  • Reduced risk of falls
  • Increased maintenance of motor skills
  • Improving heart health
  • Improved strength
  • Improved balance

You may start with 5 minutes a day and increase a minute or two every week.

Dancing counts. Playing golf counts. Running errands counts. Riding bicycles counts. Walking on a treadmill counts. Yoga or Tai chi counts. Vacuuming and folding laundry counts.

For the mind:

  • Do a puzzle
  • Play a board game (Connect Four, Chutes & Ladders, Checkers)
  • Read a book aloud to them
  • Play a card game
  • Reminisce (ask them about childhood, hobbies, work life)

Pat

Are you engaged with your loved one or are you just doing chores?

Posted on September 15, 2022 by - #alzheimers, #caregiver, #caregivers, #dementia, #parkinsonsdisease, #strokesurvivor, Parkinsons, Stroke Survivor

Think about it. Are you really having a conversation or are you just placating them so that you can get crap done? As the care giver or care partner are you even aware that your care receiver has needs that you can easily meet while you are handling tasks? I get it. A lot of us are task-oriented and do not want to be bothered with other things while we are doing our tasks. That would be great if our care receiver was not a human being. Take the time to talk with them.

September 14, 2022

Most of the tasks you will be doing, will not take a lot of brain power or concentration. Some tasks will, and you will need quiet time to concentrate, but not a lot of them. It does not take brain power or concentration to do laundry, wash dishes(place in or take out of dishwasher), cook something, sweep or mop, etc. You can be engaging your care receiver by talking, telling stories, or singing together. Paying bills, comparing EOB’s with medical bills and figuring things out, will take concentration and brain power. You do need quiet time for those types of things. To get that quiet time, engage your loved one before you get started. Take 10-15 minutes to be fully present with them.

Remember, they can sense your attitude and feelings towards them even if they have any type of dementia. If they have a physical disability or injury, and they need a little help, they still like to be engaged in conversation or stay up-to-date with what is going on with you, the community, and the world.

We talk a lot about dementia patients, but let’s focus on care receivers that have a physical disability, such as stroke survivors.

They need help and encouragement.

  • Encourage them to do the exercises they have been given by their physical or occupational therapists. You have to rewire the brain and movement is key.
  • Allow them to do what they can do, even if they struggle. Unless they ask for your help, let them keep working on it. Be helpful, but not overbearing.
  • You may have access to a social worker or counselor, and use them for help and resources. An occupational therapist can help with identifying home modifications that would help.
  • New stroke side effects may arise after going home. Be alert and contact their doctor.
  • Understand that sometimes, the stroke survivor may have a little setback, before they move forward again.
  • Always push past the plateau. There may be a time (3-6 months after a stroke) that “getting better” seems to level off. It may seem that way, but the brain is still healing and working. Keep on, keeping on. Changing exercises or rehab strategies may help, too.
  • There may be emotional changes after a stroke. There may also be outbursts of laughing or crying due to pseudobulbar affect.
  • Report falls to doctor
  • Don’t give up, keep striving for the best. (Independence depends on this.)

As a care giver, learn as much as you can about your care receiver’s stroke. What areas of the brain were affected? What do those areas control? What to expect physically, emotionally and mentally.

Some of the symptoms that a stroke survivor may experience:

  • Loss of control of movement &/or feeling in some parts of the body (This usually occurs on the side of the body opposite from the side of the brain affected.)
  • Changes in muscle tone on the affected side of the body
  • Involuntary muscle contractions
  • Difficulty sitting, standing or walking
  • Reduced ability to balance
  • Problems with speaking and/or understanding speech
  • Confusion and/or poor memory
  • Decreased control over bladder, bowel or both
  • Difficulty swallowing
  • Reduced control over emotions

The following is from Johns Hopkins Medicine

What are the effects of stroke?

The effects of stroke vary from person to person based on the type, severity, location, and number of strokes. The brain is very complex. Each area of the brain is responsible for a specific function or ability. When an area of the brain is damaged from a stroke, the loss of normal function of part of the body may occur. This may result in a disability.

The brain is divided into 3 main areas:

  • Cerebrum (right and left sides or hemispheres)
  • Cerebellum (top and front of the brain)
  • Brainstem (base of the brain)

Depending on which of these regions of the brain the stroke occurs, the effects may be very different.

What effects can be seen with a stroke in the cerebrum?

The cerebrum is the part of the brain that occupies the top and front portions of the skull. It controls movement and sensation, speech, thinking, reasoning, memory, vision, and emotions. The cerebrum is divided into the right and left sides, or hemispheres.

Depending on the area and side of the cerebrum affected by the stroke, any, or all, of these functions may be impaired:

  • Movement and sensation
  • Speech and language
  • Eating and swallowing
  • Vision
  • Cognitive (thinking, reasoning, judgment, and memory) ability
  • Perception and orientation to surroundings
  • Self-care ability
  • Bowel and bladder control
  • Emotional control
  • Sexual ability

In addition to these general effects, some specific impairments may occur when a particular area of the cerebrum is damaged.

suffered a life-threatening stroke that left half her face paralyzed, a devastating loss for a talented

Effects of a right hemisphere stroke in the cerebrum

The effects of a right hemisphere stroke may include:

  • Left-sided weakness or paralysis and sensory impairment
  • Denial of paralysis or impairment and reduced insight into the problems created by the stroke (this is called “left neglect”)
  • Visual problems, including an inability to see the left visual field of each eye
  • Spatial problems with depth perception or directions, such as up or down and front or back
  • Inability to localize or recognize body parts
  • Inability to understand maps and find objects, such as clothing or toiletry items
  • Memory problems
  • Behavioral changes, such as lack of concern about situations, impulsivity, inappropriateness, and depression

Effects of a left hemisphere stroke in the cerebrum

The effects of a left hemisphere stroke may include:

  • Right-sided weakness or paralysis and sensory impairment
  • Problems with speech and understanding language (aphasia)
  • Visual problems, including the inability to see the right visual field of each eye
  • Impaired ability to do math or to organize, reason, and analyze items
  • Behavioral changes, such as depression, cautiousness, and hesitancy
  • Impaired ability to read, write, and learn new information
  • Memory problems

What effects can be seen with a stroke in the cerebellum?

The cerebellum is located beneath and behind the cerebrum towards the back of the skull. It receives sensory information from the body through the spinal cord. It helps coordinate muscle action and control, fine movement, coordination, and balance.

Although strokes are less common in the cerebellum area, the effects can be severe. Four common effects of strokes in the cerebellum include:

  • Inability to walk and problems with coordination and balance (ataxia)
  • Dizziness
  • Headache
  • Nausea and vomiting

What effects can be seen with a stroke in the brainstem?

The brainstem is located at the base of the brain right above the spinal cord. Many of the body’s vital “life-support” functions such as heartbeat, blood pressure, and breathing are controlled by the brainstem. It also helps control the main nerves involved with eye movement, hearing, speech, chewing, and swallowing. Some common effects of a stroke in the brainstem include problems with:

  • Breathing and heart functions
  • Body temperature control
  • Balance and coordination
  • Weakness or paralysis
  • Chewing, swallowing and speaking
  • Vision
  • Coma

Unfortunately, death is possible with brainstem strokes.

Over time, it may be harder for the stroke survivor to stay motivated during recovery. The two main contributors to this are apathy and depression. Apathy is a loss of motivation, concern, interest, and emotional response after a stroke. Feeling sad after a major life event that turns your world upside down is normal, depression seems to affect 30-50 percent of stroke survivors. Signs of depression include feelings of hopelessness and sadness that do not go away.

Help stroke survivors to stay motivated.

Set relevant and achievable goals

Address the emotional challenges and get help with medications and talk therapy

Help the stroke survivor understand about their stroke, the changes, the rehab, the plateau, etc.

Have a consistent routine, do it no matter how you feel about it

Find what motivates them

When motivation fails, discipline takes over – just do it

Pat