Alzheimer’s& Creutzfeldt-Jakob 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. 🌺

@ocdogmom I love this, and your comment "I like looking at the scrapbooks because it reminds me that we have had a good life together." We should never forget that as caregivers, as that reminds us, that what we're doing is all about unconditional love. Best, Karla

@cliffaddison Hi Cliff! First of all let me say that you and Pat are in my thoughts and prayers. Your story sounds a bit like mine and my husband's with the symptoms she is experiencing. My Tom (64) and I (61) were given his diagnosis of dementia in 2021 (pin-pointed it was Lewy Body in 2024) and I lost him in February. I know everybody's timeline thru this journey is different, but never in a million years did I think I would lose him THAT quick 🙁 His cognitive decline advanced quicker than I thought it would. His aphasia hit us pretty hard. We too went to a speech therapist but it didn't seem to help him much because of his progressive cognitive disability and his confusion, memory loss, and everything else that goes along with this horrible disease. When he was still verbal, he would get his words mixed up or couldn't remember what things were called so we had to give things "new" names. He couldn't remember what a remote control was but he knew what it meant when I would say the "channel changer" and he'd hand me the remote 🙂 When he started getting more non verbal we did a lot of pointing to things and gestures. That was much easier for him because then he wouldn't have to struggle so much to find the words. During that time, he was really struggling to find the words he wanted to say and they were getting all jumbled...sentences didn't make sense..some of the words weren't even words and needless to say, i would struggle to try to understand. So I had to look him right in the face and strain to hear what he was trying to say and at times I still couldn't understand, so then I had to start asking yes and no questions and that worked out so much better. As you could probably imagine there wasn't too many conversations with all this, so i would talk about stuff and he would just listen and we'd laugh. No heavy conversations by any means and somehow we made it thru this part of the journey. As for replacing past activities (or ANY activity) that was a hard one for us. He didn't really have any hobbies. He couldn't drive or cook anymore (which he loved to do). I would get him kindergarten toys or books and that would keep his interest for a short while but when he started to forget how to play or struggled how to read, he was done and I'd have to find something else. It seemed like he didn't want to participate much in anything anymore because of the rapid memory loss so i ended getting him lighted fidgets and he loved them. !!! The multi colors and the spinning noise...oh yah! Things that were simple is what made him happy. We would watch more Animal Planet...very child like things interested him more. I love gardening, him not so much, but he would join me out in the sunshine and let me do my thing while he had his fidget and the radio to keep him occupied. And he was always going thru his stuff. And making sure I knew it was his stuff, especially if I tried to move it or put it somewhere else. So I ended giving him a couple areas that were all his. A drawer with alot of little things for him to "fidget' with. As long as he couldn't hurt himself or me. I would also have him help me with folding laundry...but he always just did his, never mine lol but it didnt' matter because I was just happy he was doing SOMETHING. Like I said earlier, everyone's journey is different and I know you will find your way. And I hope you will find advice and suggestions here to help you.
Strenth, Peace, Love and Hugs

@bayviewgal Good morning. I apologize, I don’t know your name but my name is Terry (female) . My parents were quite progressive 76 years ago lol. My beloved husband is at the stage of our journey that you were speaking about and I’m new to getting support. I just thought I could always manage on my own (retired nurse thinking ) and realize now by reading your reply to Cliff that Inwas so wrong. Your suggestions were so helpful. And to read someone else’s description of what we are going through was so helpful. My husband Rick was always very “hands on” and I think the lighted fidget might help him. Could you explain where you got it. I’m in Canada. Will try Amazon for now . Thank you so much for your discussion. I realize now that we caregivers are all part of a big loving extended family. I also love the way you ended your comment. Peace, Strength, Love and Hugs to you also and to anyone else struggling today

@terrylee26 Hi Terry, I'm Kathy. I'm glad that my comments to Cliff were helpful to you. The biggest struggle for both of us was his inability to communicate effectively but we somehow managed 🙂 I found a plaque that I hung pretty much from the beginning of this journey, that I would like to pass along: Pray More...Worry Less. Easier said than done, right? Believe me, I know. But I realized that there was nothing anyone or anything that could stop or slow down this disease, it was going to do what it was going to do so I just had to make it as comfortable for my Tom as I could. Like I mentioned earlier, Tom lost interest in a lot of things, so that was really tough, but ohhhh those fidgets seemed to do the trick 🙂 I found them on Amazon, pretty inexpensive I might add 🙂 I think I looked for dementia friendly toys/book/ etc. I wish you luck in your search.
Strength, Peace, Love and Hugs

@cliffaddison, how are you and Pat doing today?