Taking care of a terminally ill parent

Falls can get very bad very quickly.

I wish there were something I could say that was of help.

 

Is your hospice group able to provide or at least give you references for in-home aids to sit with her overnight? I know this is sometimes an option, and as you said it seems like a good one to start with.

 

You can't be there 24 hours a day. You need to go buy a gallon of milk, take a walk around the neighborhood, have a beer. Don't beat yourself up over it.

 

We have to pay for it out of pocket. I've been trying to get her to go to sleep for the last 2 1/2 hours. Gave her the drug the nurse told me to. It's not working.

 

And she fell again. I really suck at this.

 

You do not suck at this.

 

SP, all you can do is the best you can do, and you're doing it.

You don't need anyone to tell you this, but tell the hospice people of your difficulties in keeping her supervised. Be a pest if you have to. It's not a matter of convenience or you not being dedicated enough, it goes to her physical safety.
Good luck and stay strong. Somehow, your mother knows you are there, even if she can't say so.

 

You don’t suck at this. Dementia sucks.
Re: walking off, is there a way to bolt/lock the doors from the inside?
If you are receiving hospice assistance, it doesn’t sound as if they’re doing a whole lot.
Institutionalized death sounds awful, but your self-criticism suggests you will unfairly blame yourself if she dies “on your watch.”
Don’t do that. Your work is admirable. It is OK to consider your feelings in this instance.
Years ago, my mom and I made the decision to rescind meds for my dad, who was non responsive and who had clearly said he didn’t want to be kept alive by science if there was no hope of recovery. We made this decision when the doctors said they thought he’d live for another 48 hours. This, we decided, would give my brother ample time to make it in from the west coast. Didn’t work out that way. He was so sick that he died four hours later.
Was it unfortunate that my brother couldn’t make it? Sure. But I advocated for the decision we made because my mother had spent 7 years of caregiving. And she didn’t deserve to have to suffer another single minute even though she was great. The timing is something I haven’t lost much sleep over.
At this point, her rights were primary. I think yours are, too.

 

To answer some questions, first, We looked into somebody who could watch her all night. Because her assets are over the threshold for qualifying for Mass Health coverage, we'd have to self pay. The going rate is $30 an hour, 5 hours minimum and that's daytime. Overnight would be more.
Our financial resources are limited and we're going to have to get creative to figure out how to pay for it, but as my brother, who is the health care proxy, said, it will get worse and we'll need even more money then and whatever we use now, we won't have later.
I think putting her in a nursing home is cost-prohibitive for the same reason.
While yes, I know hospice is supposed to be just about making her remaining days as peaceful and comfortable as possible, having her hit by a car or striking her head on something while falling kind of defeats that whole idea.
We've installed an alarm on the door that rings when it opens and I chain and deadbolt it in the evening now.
I have all-nighters the next two nights, but I think someone will relieve me tomorrow morning and Tuesday morning.

 

If necessary screw all exits shut but one, install a deadbolt that requires a key on both sides of the door, and keep the key in your pocket. Falls can do the sort of damage that is a direct off ramp to death.

Was she, or are you, a member of a church that might be able to help? It's time to tap into any possible help you can think of. You can't do this by yourself. Guilt trip and arm-twist family, whatever is necessary. This isn't the time to be shy or polite. Be a demanding bastard if you have to. If you don't advocate for her no one is going to.

I'm assuming that there is no way to get her assets under the threshold by yourself while all this is going on, but if you can that would help. The big problem there is that really requires some time and planning on the front end that you don't have while you're the front line care giver. Is there someone who could help with that, perhaps? You really need a good social worker who knows the various programs that might be available to help, and preferably you need her to be motivated to bust her hump for both of you.

I feel for you, man. I did this for a long time, but there was a core of six or eight family members who took on various aspects. Doing it by yourself has to be grim.

 

She also has a tendency to take her clothes off and not want to put them back on. She just took them off in the middle of the kitchen. How can I either prevent it or convince her to put her clothes back on?

Or is it no big deal?