Tips For Caregivers Of The Newly Diagnosed

I have listed numerous tips that might help you in your quest to have a more successful caregiver experience. As with everything else you have to judge where your loved-one is in the disease process, and whether what you are reading would work for him/her. Some may be past the point where a particular tip will help, so if it doesn’t, so be it. This is a time in your life where every day you have to learn to be flexible! If you can, then your caregiving experience will be much more successful and have less of a negative impact on you.

  1. Accept that each dementia is unique. Once person with dementia is not a carbon copy of another. They may lose different abilities at their own pace because it depends upon what area of the brain is being affected by the placques and tangles at that moment.
  2. Never make a promise you may not be able to keep. Some dementia folks get so anxious that they get violent at the end of the disease. You may not be safe if that happens. So never promise them that you won’t put them in a nursing home. Just say, “My idea is to keep you home for as long as I am able to!” That is all you can say.
  3. Learn to take one day at a time. With sufficient legal and financial planning, you have done all you can that will help in the future. Now don’t look ahead at what may or may not happen. Worrying about what may or may not happen simply stresses you out and wears you down. Try to enjoy today together.
  4. Try to be open about having dementia. The less lies that are woven, the better. If you can talk about your journey, others will be more willing to help you. If they ask, “What can I do to help” you have to be ready with specific things they can do to help you!
  5. Dogs and cats are a joy to have for the person with dementia. They give unconditional love, so don’t think you have to get rid of them when your loved-one is diagnosed. Having a neighbor offer to take your loved-one and the dog out for a walk gives you a few moments to yourself too! So plan for that.
  6. Learn what therapeutic fibbing is and try it out with your loved-one. It’s basically going into their reality and affirming where they are. Let me give an example. My mother-in-law used to ask, “Where is Jim (her husband). He doesn’t visit me anymore! Why doesn’t he come?” We would respond, “Dad is on an important business trip and will be gone for a few weeks.” That is much less upsetting than telling her that he died 2 years ago. She would cry and wonder why she didn’t remember the funeral and she would mourn all over again. It’s much better to fib. Doing this allowed her to have less anxiety and renewed grief.
  7. Practice distraction as a technique. The better you are of hiding that it is a distraction, the better! Be clever and not blunt when doing it, and your loved-one won’t know it has even happened.
  8. For giving up driving, have the doctor be the bearer of bad news. That way they won’t punish you for punishing them.
  9. Be mindful of crowds. It’s less of a problem with Covid-19 around, but even in the grocery store if you bring them, go at a less busy time. They will easily get focused on someone else thinking that they are following you. Remember, they don’t remember what kind of clothes you have on that day, or what you look like from behind. When in the store, make a habit of turning around every few seconds so they can see your face and realize it is you!
  10. Try to keep them active and as involved as they will allow. Don’t force them to do things they don’t want to. That only makes them anxious and argumentative. Remind yourself often how hard it is for their brain to make sense of everything during the day. The harder it is for them, the more they will sleep to try to make their brain feel better.
  11. Let your neighbors know your loved-one has been diagnosed. Unless you speak to them often, sending a flier around in the mailbox with your loved-one’s photo on it, and the information that they are having memory problems is a great idea.
  12. Redo a phone list for them that has only the really important numbers on it. Make it with large lettering and numbers so they can read it without problems.
  13. Make a DAY and DATE pad that you change every day. “TODAY IS WEDNESDAY, MAY 1ST. This worked quite well for my husband especially the days that I was still working.
  14. Create a TO DO LIST for the day if your loved-one is adept enough to follow it. Make it large print and have simple tasks. Otherwise they won’t be able to be successful! You want them to feel like they are contributing, not failing!
  15. The days I was at work, I would leave a big triangle shaped note (made out of a manilla folder stapled in thirds. It said, I AM AT WORK…..I WILL BE HOME AT 4:45 PM. PHONE 275-7801. I placed it on the dining table where he ate so he would know where I was. If he had a question, he could call and ask for me. (This was early on…later of course it didn’t work because he lost the ability to read)
  16. Make small pill cups for pills MORNING, LUNCH, and DINNER. I would only put the one out that was necessary, because I didn’t want him to take all of them at once. I hid his pill divider out of sight, only giving him the pills to take at a certain time.
  17. Label the jacket or coat at the neck so if it gets lost you can find it again. I usually wrote with a laundry marker the name and phone number.
  18. Along the same avenue, put a card in their wallet saying: My name is Jim Ruppert. I have dementia. My wife takes care of me. She can be reached at 716-***-****. In case she is unavailable, call my daughter, Kristine Campbell at 716-***-****. My address is _________ . Once my husband’s brain couldn’t properly deal with a money transaction, I took away all credit cards and always had a twenty dollar bill and a few ones in his wallet. That way he felt he could buy something he wanted, and yet if it was lost it would be no big deal!
  19. I made a number of signs in large lettering and pictures I copied off the internet for various occassions: I went to the pharmacy; I went for a walk; I am gardening, etc. The sign would have the words in large simple lettering and would include a picture on the page of a bottle of pills, or a person walking briskly, or a woman sitting among plants. If Jim was sleeping, I would put the signs on the floor coming out to the living room so he would see them.
  20. I purchased a time and date cube. It only had a few buttons. When you pressed them it would tell you the date, day, and time. That way you could still find out what the time was even if you couldn’t tell time on a clock.
  21. Make a TV Listing of all of your loved-ones favorite TV shows and what channel they are on. Make sure it is in large print and as few words as possible.
  22. Get a home phone that allows 9 pictures besides a keypad. Press the photo of that person and it dials them. You have to do this fairly early or they won’t recognize any of the photos. Or you can set it up that all pictures dial the caregiver’s cell phone!
  23. Simplify table clutter so they can tell what is there. If tables are too cluttered, it’s too busy for the brain to recognize anything. For our dining table, I got some dark green vinyl and covered the table. Have as few things on the table as possible. It makes it easier to find or recognize what they want. Serve their food on a non-patterned plate, too will help. Put away patterned table cloths and placemats in favor of solid colors so the food is more recognizable.
  24. Cut the meat before it is served. Cut yours too so they don’t feel ashamed for being singled out.
  25. When going out to eat, suggest things off the menu that you think they would like. Menus are hard to read for dementia folks because there is so much on them and the shininess of the coating makes it difficult for them to read.
  26. Change their style of clothing as they become compromised so that they can remain as independent as possible (from buttoned shirts to zippers or looser over-the-head styles or fly pants to stretch waistbands).
  27. Put a door alarm high up so you can tell if they go outside without you.
  28. Eventually change the knobs on the doors inside your house that lock, so they can’t lock themselves inside the bathroom, for expample.
  29. Get rid of throw rugs so that they are not at risk for falling.
  30. For stairs inside or outside that may blend in, mark the edge with yellow tape so the edge is well defined. That will help to make tripping or falling less of an issue.
  31. Covering mirrors may be helpful at some point. They may talk to the person in the mirror, not realizing it is them. Also, they may think there is someone else in the bathroom with them, and so won’t go to the bathroom because they want privacy.

I’m sure you can think of others to add to the list. There are some great ideas that I have missed. So please write in and let me know your thoughts!

1 thought on “Tips For Caregivers Of The Newly Diagnosed”

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.