Alzheimer’s/CJD caregiving help appreciated!

Posted by cliffaddison @cliffaddison, 17 hours ago

Hi everyone, I’m Cliff (71). My wife, Pat (70), was diagnosed with a rare combination of Alzheimer’s and CJD at the Mayo Clinic Neurology department in Scottsdale last December.
Her path began with mild math issues last spring (like struggling to make change at a garage sale) to where we are today. Pat's combination of CJD and Alzheimer’s has actually slowed the rapid physical losses normally associated with CJD. Physically, she is doing remarkably well—we still hike 2–3 miles a few times a week.
However, her cognitive decline is advancing. Pat is in home hospice with Casa de la Luz in Tucson. She is still verbal but losing more words daily. She can no longer read or use the phone, and she gets easily confused with multi-step routines (like her dental hygiene).
Looking for Advice on Two Specific Challenges
Because Pat is the type of person who "never sits down," I am hoping to get some advice and tools from this community on two specific things:
• The Transition to Non-Verbal: Pat is on the edge of losing speech altogether. For those who have been through this, how did you successfully transition through the verbal to non-verbal stage?
• Replacing Past Activities: She spends hours going through her clothes, kitchenware, and garden items, only to declare, "I can't find any of my stuff." Because she can no longer safely cook, read, garden, or manage housekeeping, what can I introduce to help her replace those hours and activities?
A Quick Update & Silver Lining
On a positive note, we are not doing this alone. We have a son, a daughter, and 5 of our 7 granddaughters living within 15 minutes of us. We also just had our intake visit today with a home health Speech and Language Pathologist, which feels very hopeful!
Thank you all for your ears, your hearts, and your thoughts.
— Cliff & Pat
Vail, AZ

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

callmegram | @callmegram | 3 hours ago

@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

kjc48 | @kjc48 | 3 hours ago

@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.