Month: November 2022

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

Secrets that folks over 65 try to hide…

Posted on November 10, 2022 by - #alzheimers, #caregiver, #caregivers, #dementia, Caregiver Information

If they still have their partner, the partner will try to help and cover for them. When they are tag-teaming it is more difficult to figure out what is going on. It isn’t always intentional, but it can be intentional. To be fair, it may have happened slowly and they are taking care of each other the best way they know how to help. Observe to see if the spouse is finishing tasks for them, finishing sentences for them, or making excuses for some type of behavior.

November 9, 2022

No one likes to admit that they may need help. We are all very independent and quite stubborn. Most of us fear losing our mental faculties more than we fear losing physical capabilities. I understand that. Too often, people feel that they are “getting dementia” or “Alzheimer’s disease,” but that may not be the issue at all. Which is why it is important to go through a diagnostic workup. It could be fixable, such as better nutrition and hydration. It may even be a type of depression.

  1. Falls
  2. Pain
  3. Dizziness
  4. Financial difficulties
  5. Short on money
  6. Buying a lot of “stuff”
  7. Gambling
  8. Drinking more alcohol
  9. Prescription drug misuse or abuse
  10. Illegal medication misuse or abuse
  11. Binging on sweets
  12. Financial abuse – from a family member, a friend, or a caregiver
  13. Elder abuse or Neglect – from family, friends, neighbors, or caregivers
  14. Automobile accidents
  15. Driving Infractions or Getting a Ticket for something
  16. Hiding bruises – either from falls or abuse
  17. Eating a lot of take-out
  18. Changes in the way they dress
  19. Closing the doors to rooms – to keep junk hidden, the messiness, or the dirtiness
  20. Limiting driving to short trips and not far from home
  21. Poor personal hygiene – from not changing clothes to not bathing nor brushing teeth
  22. Unopened mail

A few behaviors that may mean they are trying to hide information:

  1. They discourage visitors. It may get to the point of them not letting anyone inside their home. It starts as, “We will meet you at the restaurant.” “The house is such a mess, let’s do it another time.” They may even say that they know “you are busy with your job.”
  2. Hiding mistakes – driving, spending, buying,
  3. They make a lot of excuses for their forgetfulness or their behaviors
  4. Changes in activity – you are looking for changes in their normal routines
  5. Speaking for their spouse

Why might they do some of these things? “Denial (De Nile) isn’t just a river in Egypt.

  1. Denial – If you don’t acknowledge it or talk about it, then it doesn’t exist and nothing is wrong.
  2. Pride – They can’t admit that they can’t do a lot of things necessary to live on their own. We all are an independent and prideful bunch.
  3. Embarrassment – maybe they become self-conscious or ashamed of what they can no longer do. Especially if it has to do with personal hygiene. Embarrassment rears its ugly head when they have some financial difficulties. They cannot afford food, medication, and getting repairs done to the house. It may or may not be any fault of their own.
  4. Fear – of losing their independence
  5. Depression – chronic health conditions seem to cause a rise in depression. Depression is not always the ‘woe is me” stuff.

Depression is not a normal part of aging. It may mimic dementia.

Signs and Symptoms of Depression in folks 65 years and older:

  1. Memory impairment
  2. Trouble retrieving some words
  3. Takes longer to process information and deliver an answer
  4. Depressed mood
  5. They no longer have pleasure or want to do the things they used to enjoy
  6. Noticeable weight loss or weight gain
  7. Sleeping too much or too little
  8. Feeling fatigued
  9. They experience feelings of worthlessness
  10. Having excessive or inappropriate feelings of guilt
  11. Recurrent thoughts of death or suicide
  12. Feel confused
  13. Struggle to pay attention
  14. Be grumpy or irritable
  15. More aches and pains
  16. Move more slowly
  17. Crying spells
  18. Apathy –  lack of interest or concern

We always want to rule out the things that can be ruled out. What if it is a lack of nutrition, dehydration, loneliness, or isolation? Those are fixable and doable. If it is depression some medications can help. Shoot, even running has been shown to help mild to moderate depression. Once we know what it is, it really is much easier to handle.

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