Yes. I’ve been through all this. I’m the primary caretaker for my 88-year-old father, who has fairly severe dementia. He’s now resident in a memory care facility.
And get a durable power of attorney, not a springing power of attorney. A springing power only becomes effective on incapacitation of the person signing it, and the conditions that trigger the POA must be specified in the POA. Usually such a POA will require that one or more physicians must certify that the person is incapacitated.
In my experience, however, doctors won’t touch the document with a ten-foot pole. Doctors and lawyers are naturally hostile to each other, and doctors just won’t get involved in the legal stuff.
I coped the same way that everyone else does - one day at a time. Logistically we were lucky; my wife had long term disability insurance through her job and it replaced two-thirds of her pay. That was enough for us to live on so I could be her full-time caretaker. Also, all of it took place in our 50s. She was 52 when she was diagnosed and died just before her 60th birthday. If we would have been in our 70s, I wouldn’t have been able to do the physical parts of taking care of her and it would have been a lot worse.
Emotionally, I cried sometimes, I got angry sometimes. Most of the time she was very trusting and kind, so it wasn’t too bad.
As far as communicating, I would just talk to her. Even after she couldn’t respond anymore, I would just tell her what was going on. As for her communicating, I just tried to read her body language and guess what she needed. At that point it’s all about basic needs: food, water, bathroom. If I would have had to figure out her opinion on something like “Stranger Things”, it would have been a lot more difficult.
My brother had a durable power of attorney for my mother for medical issues, and we also had a DNR. He was also on a joint bank account with her.
Fortunately my mother had the foresight to put the house in a trust for us rather than keeping it in her name a decade before she started to develop problems.
Very luckily, and due to my brother’s persistence, we were able to eventually get Medicaid to cover 24-hour care for her. But before that we had to pay it ourselves, out of her other assets. These were almost entirely gone by the time we got Medicaid. If we hadn’t gotten it, we would have ended up bankrupting ourselves or spending our own retirement funds on this.
This happened to one of my aunts, who was getting on in years. She was visiting her mother in the nursing home who was suffering from dementia. Her mother was complaining that her daughter Mary never visited her any more.
Aunt Mary said, “Mother, I’m Mary!”
Her mother said: “You’re not Mary! She’s a pretty young girl, not an old hag like you!”
You have to laugh to get through it, but it hurts nonetheless.
That varies from person to person. My grandmother died of dementia. I wouldn’t say that she felt everything was great, but she was reasonably happy in her last years, in a memory care facility. She enjoyed the daily exercise, the art class, and the food. She liked to “dress up” by putting a band-aid in her hair.
She was ready to die, though. One of her last lucid comments was after the staff gave her antibiotics for a minor infection. She asked my mother not to let them do that again.
Close relatives are hurt when they are among the forgotten, perhaps saying to themselves “I am so much a part of his/her life that the memories we share will be the last to go”, but the memories that are lost are not chosen by the victim.
I don’t have direct family experience with Alzheimer’s sufferers, but one of my best pals lost both his parents to it in their mid 80s. One was mellow and easy, and was the staff favorite at the home from when they moved in until they passed a couple years later. The other was hell on wheels; always angry or agitated or catatonic …
I’m told that had you known them back in their 50s, you’d have predicted the opposite outcomes.
I’m convinced that my mom lost the ability to differentiate between dreams and reality. I’d talk to her on the phone and she’d say, “I just finished shopping and I’m waiting for your dad to come pick me up.” Dad died 10 years ago and she hasn’t been out of the nursing home so…she probably had a dream, woke up, thought it had really happened.
If everything your brain experiences, from reality or a dream, seems to be true and you’re left with an addled mind to try to cobble together a coherent reality from it, that has tremendous potential to be frustrating, depressing, terrifying.
There was a thing on NPR awhile back where they said that if your loved one is demented and imagining things, don’t flinch. Just play along. If they say there are monkeys building nests in a tree across the street, just shrug and say, “Oh, really? Huh, they’re early this year. So how was your breakfast this morning?” You’re not going to dissuade them, and even if you did, they’ll forget it in five minutes, so allow them that. Why stress them unnecessarily?
ETA: I agree with Lucy. When I get to that point, euthanize me. It’s ok. I know you love me.
Once my mother went to the window at night and looked out at the lawn intently, and said “Praise be to Jesus! We finally landed! Call Shawn (our downstairs tenant) and tell him we arrived!” (Apparently she thought the house was an airplane coming in to land.)
I said “Shawn already knows.”
She said “How does he know!”
I said “He must have been looking out the window too.”
She got mad.
The problem arises when they insist you take action. My mother would get very agitated if you refused to go look for the babies or take the curtains down to put in the boat.
My father was broken. His mother was pure evil (people always say I’m exaggerating. Then I tell them true stories of her and they agree she was pure evil). He wasn’t a great dad. We all watched when his mother declined due to Alzheimer’s. Being, justifiably, proud of his intelect Dad said he never, never, NEVER wanted us to let that happen to him. Then, when he retired from his federal job, he learned that mom would keep getting his full pension so long as he was legally living. The minute he died, the monthly payments would be cut by half. So, Dad changed his living will. He was to be kept alive by any measure necessary regardless of the quality of his life.
I strongly disagreed with his decision. But, I’ve never been prouder of my father.
OTOH, when our elderly dachshund Goliath suffered a stroke that left him paralyzed on his left side and in constant pain, we had him euthanized. I don’t regret that decision in the least. I do strongly regret that due to a long story, I was unable to be the one to hold Goliath as he died.
Well, the good news is it’s too late for me to get Early Onset Alzheimer’s like my dad did. So far so good…
But I’m hoping that if I do get it, I’ll cope as well as my dad did. He was happily clueless. When he asked who you were and you said “Dad, I’m your daughter”, his face would light up: “Oh, I have a daughter! And such a nice one, too…”
(ps, this was much more supportive than he’d ever been before…)
And he was a trickster to the end. On better days, when he fully grasped that he had Alzheimer’s and prostate cancer (which finally did him in), he loved to tell visitors:
Oh, did I tell you I went to see my doctor today? Yeah, he said, “Okay, I have bad news and worse news. The bad news is, you have Alzheimer’s.” So I asked him “And the worse news?”
“I’m afraid you have cancer.” “Well, at least I don’t have Alzheimer’s!”
He was always a prankster. At his funeral we heard stories from his friends and workmates of brilliant jokes he’d pulled.
Which made it hard to ascertain when his dementia kicked in. When someone’s always kidding around and saying weird stuff just to mess with you, it’s impossible to look back and point to an episode and say “That time he called me Barney Fife wasn’t funny, he really didn’t know my name.”
(By the way, we call that “trying to figure out when the dementia kicked in” The Ronald Reagan Effect)
