How did you handle the slow loss of a loved one to dementia?

If you’re actually going through this right now you have my deepest sympathy. I’m so sorry you or anyone should have to deal with that kind of pain & loss.

I don’t have much personal experience to draw a real answer from, only a grandfather that I was very close to who suffered from a more limited type of dementia. Still it was hard to watch him struggle, and see his anger at himself bring so much hurt.

Any relief you feel comes only at the end. I don’t think there is any easy way to live through it.

We were lucky to have a wonderful care home. My MIL moved into an independent apartment, and was transferred to the nursing home on the same property. The nursing home eventually provided hospice care. My SIL visited daily, took Mom on walks around the park-like grounds and made sure she had familiar items. Hubby was able to make monthly visits while on paid company business. It was paid for with a retirement income, Kaiser Plus Medicare plan and monthly payments from family..

I feel with and for you. It is heartbreaking. Both my parents had dementia by the end although my father stayed loving and kind towards me and my mother was always demanding and a whack job. It is hard to go through. If they don’t get aggressive and hostile with it, it is easier to take. And luckily both of them pretty much knew who I was until the very end so that helped.

I would say, assuming they are being cared for somewhere and you are not responsible for that aspect, go when you can to visit but don’t feel you have to go every day. Make the visits short and sometimes bring another person so the two of you can talk and provide stimulation but it is not all on you. Be loving but be brief. If they are hostile, leave. If they ar in care, try to ensure that they are being well looked after. A family member who is alert can protect them.

One thing that helped me with my Dad is that we would often hold hands when I visited and his grip remained strong and loving.

And try to keep the good memories alive. They will sustain you later after the person has died. and, if you do feel relief or numb when they are gone, don’t beat yourself up about that.

^ Thanks. Some good advice. So sorry you went through this.

I’m currently unable to see my father in person, which is making it more difficult. And our history is complex, so there are always conflicting emotions with my interactions with him. But I find more and more that I’m avoiding calling him. The past couple of times I spoke with him, I immediately fell into a sobbing mess as soon as I hung up. It’s just not him, and I feel guilty, but I am almost looking forward to his death.

He has Parkinson’s disease, and was one of the lucky ones who had it effect his brain significantly as well.

Anyway, my mother is now experiencing some confusion and repetition – especially when stressed and late in the day. And I can’t see either of them due to the pandemic. I understand that so many people go through this, and I just don’t understand how. The guilt and fear of not wanting to see/hear this shell of my father can be pretty brutal.

@hello321 Yes, it is. And the pandemic makes it worse. Is your mother the care person for your Dad? Does she have help? My haircutter had a similar scenario and it became very hard for his mother to care for his dad physically. And do remember that stress could be making your Mom’s cognition worse.

Here’s one practical tip: Can you email or write notes that your Mom can read to your Dad so you don’t need to talk to him so much.

My father’s wife cares for him, so he is ok. The notes suggestion actually is pretty good idea. I could try emailing his wife and passing on info that way. I guess.

My mother is alone, however. My sister is the only one who sees her, and it’s not too frequent (and my sister has her own health issues). I speak to my mother often on the phone. She is still quite capable of caring for herself, but if things ever changed, I’d have to move her in with me.

@hello321 Oh – I didn’t realize that your folks were not together.

Hey – I’m getting pretty fuzzy at times; can I move in with you? (Or just with your dog?)

I think isolation can enhance confusion. Is there any possibility of moving your Mom into a nice continuing care community?

@janbb: “Is there any possibility of moving your Mom into a nice continuing care community”

I guess I should be really looking into these things now, as depressing as it seems. Not sure. Finances are pretty tight. But then again, if we needed home health care, it could also be expensive. Ugh. This is making me anxious. She’s ok right now…

@hello321 I understand but if she’s ok now, it could be the best time to move her. Many places won’t take someone when demented; they have to be healthy when they come in. and she has a better chance of adjusting to a place if she is ok enough when she starts.

There’s a web site called “A Place for Mom” that lists care places.

I was lucky. My mother initiated their first move to a continuing care place because she was concerned for both of them.

Home health care if it were just a few times a week might be provided under Medicare or state programs. Sometimes a few hours a week might be enough…...

Feel free to pm me as you go through this. It might be helpful if you talked to an eldercare social worker for now and find out some options.

^ thanks!

It’s devastating because the change is so gradual and it only happens in one direction; they do not get better. It starts with forgetting trivial things, then moves into forgetting faces and basic skills, the personality changes, and eventually unresponsiveness. I was a teenager when this happened to my grandmother (my mom’s mother) and my mom bore the brunt of it (my grandfather had died a long time ago of a heart attack) but even so I understood what was happening and saw the toll it took on my mom. At the time my grandmother was living alone, so she had a live-in caretaker, but it became too much for that care-taker to handle (my grandmother, a formerly mild person who never raised her voice was now prone to angry outbursts directed at the care-taker and my mom), so she was moved into a facility closer to us. This made it easier even though by this time my grandmother had mostly stopped talking and couldn’t do anything on her own. But my mom loved the staff at the facility and she visited regularly. My mom always said she could detect a hint of my grandmother still in there somewhere even in her last days (she cited a specific instance of mentioning me and seeing a smile on my grandmother’s face). There’s no denying there was relief when she finally died (when I was a senior in high school)—this was the most difficult and stressful thing my mom has ever gone through before or since.

Do your best to treat her normally. Support her. Love her.