Alzheimer’s/CJD caregiving help appreciated!

@cliffaddison

Thank you for sharing Pat’s journey so openly. It’s clear how deeply loved and supported she is. The fact that you’re still hiking together and surrounded by family is such a blessing.

From other messages I have read here on the Mayo Clinic message board, as well as on the alz.org message boards, as speech changes, many families find comfort in shifting from conversation to connection—music (especially familiar tunes from adolescence), touch, photos, folding towels, matching socks, sorting buttons or kitchen items, assembling jigsaw puzzles, organizing costume jewelry, watering plants together, looking through greeting cards or magazines, husking corn/shelling beans, or helping “set the table.” Familiar, hands-busy activities often feel reassuring, even if they no longer get completed in the usual way.

You’re already doing so much to support her, and having hospice plus a speech therapist involved early will make a tremendous difference. Wishing peace and strength to you, Pat, and your family.

Gram

@cliffaddison Cliff and Pat, it's great to get to know you on this thread. I'm so sorry to hear about Pat's losing speech altogether, and looking for past time activities she can now immerse herself in. My neighbor next door, had the same thing happen, and we would sit for hours, and put together in a scrap book, old photos of her grandchildren, kids, etc. - a family scrapbook, where she could look at all the food she used to make, (she loved to cook), your daughter and son's family, etc., that seemed to help her pass the time. I don't know if that's doable for your Pat but worth trying, as I remember my friend, Eileen, and her reaction when she would see some of those photos she remembered. Possibly, with the family you have close by, who could sit with her and help sort through all the family photos in a large family scrapbook, all those photos we collect loosely, that just sit in a box! I can't help with the transitioning from verbal to non verbal stage, although I do remember, my neighbor went through the very same thing, and speech therapy did help her, along with helping her hold a toothbrush, fork, etc. Best, Karla
Hope this small suggestion, helps.

At some point in my husband's dementia journey he lost to the ability to communicate effectively through his speech. He can no longer pull up the words he needs and has trouble processing what words he hears. I have learned from taking courses at the "Positive Approach to Caregiving" website that giving visual clues can be more effective than words. For instance, when he needs to brush his teeth, asking him to do so doesn't work. I have to take him to the bathroom and put toothpaste on his brush and hand it to him. That is a visual clue to brush his teeth which he will not do on his own. I heartily recommend that you look into these courses. I took the four courses in the Champion Caregiver series. They are offered about 4 times a year live online. I learned so much that I know feel confident that I can manage all the changes that are coming. You are fortunate to have family close by that are willing to help. It makes a huge difference for you to have that support. I agree with Karla about putting together a family scrapbook. Over the years I have made scrapbooks of our family and now I am able to pull one out and we go over the pictures together as something to do as he can no longer use his phone, laptop, TV or is physically able to walk or sit for more than a short time due to chronic back pain. I like looking at the scrapbooks because it reminds me that we have had a good life together and for a few minutes I can forget where we are now. God bless you and your wife.

Greetings and virtual hugs and support to you.
My brother-in-law had ALS and lost his speaking ability over time. His wife had him type on a keyboard at first so they could communicate. After he lost the ability to type, they bought him a special medical pad that he could press with the side of his hand. He used one press to reply yes and two presses for no. His wife had to limit communication to questions involving just yes or no answers.
I had another brother-in-law that had mouth cancer and couldn't speak, and he used a small white board to communicate with folks.
Medical supply store personnel can be very helpful.
All the best. 🌺