Taking care of a terminally ill parent

There's also this sundowning thing, where she wanders around the living room, sorting things and babbling. She did that for an hour and a half tonight, asking a lot of questions I didn't understand.

 

As far as I know Medicare does not pay family members to be caregivers, but often Medicaid (state) does. California actually pays a substantial amount. Check out your state's website, there maybe other resources available.

 

I'm in Massachusetts so it would be Mass Health.

 

And she fell tonight.

 

I'm so sorry, Smallpotatoes. My wife's mother had pancreatic cancer when Gwen was 25 and I can't imagine knowing your parent is losing the essence of what made them unique.

My parents are turning 84 this year, so we spent January and February in Florida near them. Our "well, they're officially old" moment came after we got off the casino cruise ship at Port Canaveral.

My mother started yelling at Dad about why he hadn't parked the van in the handicapped spaces and it wasn't until I pointed her in the other direction that she remembered I drove them there in our car four hours earlier. Then halfway back to their place, Dad suddenly asks, "What are these buttons on the back of the passenger seat?" Turns out he's looking at his garage door controller that he had hooked on the map pocket on the seat back.

Funny now. But may not be so funny if old-age forgetfulness turns into full-blown dementia.

 

Wandered off again tonight.

 

The hard reality, SP – and I apologize for saying it bluntly, but I did it myself for my parents – is that, if you're now in the hospice stage, your role from this point on is to guide your mom into a gentle and peaceful passing. Hardest thing I've ever done. Best thing I've ever done, too, because she was my MOM. As a result, my mom had a beautiful passing, if you can understand what I'm saying here. To have her die in a corporate hospital was out of the question. We brought her home, to pass in peace and comfort, and that made all the difference for her, and for us, too.

Hospice workers gave me the strength I needed, and they were right. Trust your hospice, is what I'm saying here.

Write me, as needed, about any of this stuff. It ain't easy, but it's very rewarding if you handle it the right way.

 

SP, I’m not just saying this but I really hope I have the grace and patience you’re showing with your mom in any future circumstances... I was not so graceful and patient when my dad was sick and died, and it’ll always gently haunt me.

 

My main concern is trying to avoid the not-so-gentle and not-so-peaceful passing, which is why the wander-offs really bother me.
But thank you. I understand what you're saying.

 

I'm so sorry to hear you're in this situation.

I obviously don't know your mom's case, but I can offer a few general suggestions. Depending on where the lesions are, they may be affecting some of the language centers. That could affect her ability to associate meaning with words, leading to the nonsensical speech you're hearing and lists she's writing. You might try using simple visual communication tools, if that's something she can understand. I'm not suggesting/endorsing this one in particular, but there are visual tools such as this (https://i.pinimg.com/originals/03/84/83/03848300c9934b7c5814a4f1029cc1e6.jpg) that we use with people who struggle with verbal language. They are often called patient communication charts. You might also try pictures on your phone. Those may not work, but it's something to try for her most immediate needs and wants. Strategies for people with something called receptive aphasia may also be helpful.

Talk to your hospice people about her sundowning and wandering off, as well as your communications issues. They may have some suggestions on medications that might ease her symptom burden or other strategies you can try. They have helped many people stay as comfortable and happy as possible throughout similar journeys and have immense toolboxes to draw from.

And remember to reach out to others and take care of yourself. There is no harder road than the one you're on together right now.

 

I hope that you drew a good hospice care group. I cared for both my father-in-law and mother-in-law four days a week through their decline and eventual deaths. FiL went first, and pretty quickly. MiL lasted another year or so, with decreasing ability and increasing memory loss and dementia. Both were in their nineties.

Good advice from Smash. You have to take care of yourself to be able to care for her. Stress and pressure builds over time. If you have any help at all, don't be afraid to call on them.

 

When I woke up this morning I went downstairs and found her on the floor. She fell while I was asleep. I called the hospice nurse, who told me to call 911. They got her back up and checked her out, nothing was hurt.

I have no idea when this happened. She could have been there for minutes or hours. I don't know. This is the second time in as many days that she's fallen. The first time we went to the ER and I was up all night.

What's going to have to happen, I think, is I'm going to have to take 12 hours and someone else is going to have to take 12 hours.