Candace, this is one of the hardest things I find about this disease as a caregiver for my Mum. We have no idea of its predictability, no idea of the course it will take in our loved one or over what period of time. I am very hesitant to tell my elderly stepdad the course this will follow, because he would be overwhelmed and sad at what to expect in the future. So I just let him take it a day at a time and work with him to support him and be a team together to care for my Mum.

I think this is a concern of a lot of us and it is really an unknown. My very sweet mother-in-law lived in a nursing home for 7 years (they ran out of funds at about 5 years so she went on Medicaid which was so difficult for my always prepared FIL to accept. At the time she moved there, she was already mostly incontinent, unable to walk without a huge amount of assistance and prompting, and most of her words made no sense. She had no other health conditions and lived for more than 20 years after her initial diagnosis. It is such a tragedy to see someone and her caregiver live so long with this disease. While my husband has some other health conditions, his living so long is one of my biggest concerns. I know it's not what he wants.

Yes, I’m worried about this too. My mother in law has Alzheimer’s but is fine otherwise and has been in a facility since her husband, her caregiver, died 8 years ago. She too went through all her money in 6 years and has been on Medicaid ever since. I manage all her financials and have been doing this for over 3 years because her son, my husband, cannot do it, he has Alzheimer’s himself. My mom, with Parkinson’s dementia, lived in a facility for nearly 4 years before she died at 90. So, at 71, how long will my husband live? I know it sounds crass, but it is a very real financial concern. He does have a couple of other health issues but they are managed (by me). I don’t want to put him in a facility this early anyway, but he falls all the time, won’t use the walker, and has bowel and bladder incontinence. And of course I do absolutely everything in and out of the house, finances, everything, just like all of you do. I worry about burn out. I do take it one day at a time.

@ Patientwife
Thank you! You covered exactly what's going on with us and what our fear is. So it CAN happen this way! Maybe we can find just the right person to assist my mom while Dad stays at home. Thank you again!