What is palliative care?

My wife doesn't know or recognize me every couple of days. When it gets to be consistently every day, I may think about memory care but that thought scares the hell out of me. I really cannot picture life without her. 🙁

I agree

Dan - are you able to participate in a spouse and caregiver group, even remotely? Other peoples' stories may help you adjust to your "new normal" when the time comes for memory care.

Another question - have you checked out the facilities available near you and found one or more that are acceptable? It is important to plan for this, because any health crisis, for either of you, can change your plans in an instant. This happens more often than you would think - if one of you ends up in the hospital, it would be good to be "on the list" for your chosen facilities, not just accepting one blindly because you don't have time or ability to visit and evaluate.

You are on the most difficult journey I can imagine! I was one of the caregivers for my Mom, but thankfully she was able to participate in her care choices and I had the support of my dear sister.
Also, when my Mom and mother-in-law went into skilled care, then hospice, it really wasn't "life without" because we visited, provided the extras that the facility did not, took meals together...the biggest difference was that we were able to sleep without "one ear open" all night, and to actually be present when visiting instead of thinking of the next task waiting to be done.
Hugs to you for taking this long journey with your wife.

Sue
Thanks for your kind words but I’m having a real hard time even thinking about not going to bed at night without my partner of 56 years. I agree with everything you said but I’m just having a hard time thinking about the time we won’t be together. 🙁

There comes a time when it might help you to work out your feelings with a therapist. Unfortunately, the disease progresses.

Tell the palliative care team everything you can. The more information they have, the better their help will be.

In my experience the palliative care team is there to help both of you. When my brother was dying, the music therapist and art therapist were such a comfort for me, and on some level to my brother. My brother didn't recognize me during his last 2 years

Thanks to all for your kind comments but I'm not sure I could open up to a stranger (therapist, social worker) and my wife has already stated (in one of her lucid moments) that she doesn't want a stranger touching/cleaning her body. The meeting with the palliative care doc went well. she is nice, made a lot of good comments but I was a "little" taken back when she mentioned my wife was in "end stage" dementia and most people (90+%) with her length of diagnosis are dead, so we must be doing "something" right. I've been depressed ever since that meeting. I guess I've been blocking a lot out over these years. I cannot picture life without my partner 😍. Every night for the last week, she has not known me and thinks we have strangers walking/living in our house. 😢. Thanks for listening.

It is very sad. I’d just encourage any caregiver of those with dementia to get backup help lined up. It’s amazing how fast things can go south.

You may have a person you can’t leave alone for even a few minutes, while you also need to run the household, shop, arrange appointments, clean bathrooms, cook, answer the phone, manage meds, do laundry, change diapers, change linens, research resources, contact resources, retain services, manage finances, etc. And all the while your loved one is crying, hallucinating, scared, inconsolable and resistant to care.

We found a great home health company who would come at any time. We could call at 3:00 a.m. if necessary to get help to the house. Other times we called the local fire department and first responders came and got Daddy off the floor and back into bed.

I started the process of higher levels of care for my mother before we actually made a change. The starts were short term stays at memory care facilities. I did not realize they would accept patients for a week or two, but found that many would do that if they had The room to do so. Vacation of a week or two was a godsend for me. It also began the process of eventually moving her into a care facility full-time. In hindsight, I think the adjustment to a care facility is harder for the caregiver than it is for the dementia, patient. The beginning that process was short stays of a week or two, that would allow my husband and I to have a break and a vacation without worry, was a godsend.