Caregiving for someone with advanced Alzheimer's

[CountryMom27]

My father’s cousin, age 92 (my dad is 80), has advanced stage Alzheimer’s, and is under his and my care at an Alzheimer’s facility. I consider her my aunt. We’ve been caring for her since this past fall - we make health care decisions jointly, he visits with her, and I handle everything else. I’m also her court-appointed conservator. It’s hard for me to visit her as I have 2 & 4 yr old boys and live about 30 min away. I see her about once a month, my father visits her almost daily.

Her condition is worsening - the bad days are outnumbering the good ones, and she’s been falling quite a bit. I’m considering moving her into a skilled nursing facility with a palliative/hospice care unit. It’s beyond hard to see her this way - she was always a stubborn, brilliant, independent streak with bright auburn hair, and now she varies between lucid and in a total fog, depending on the day.

She signed a living will in her better days, so I know what her wishes are. She has a DNR too. But how do I know when it’s right to move her into hospice? I feel so helpless and sad and completely overwhelmed. I’m taking care of her, of my kids, of my husband and I’m not even sure I can take care of myself. I want to just curl up in a ball and hide.

I’m not sure what my question is, and I know this is rambling, but if you have any suggestions, please let me know.

Thanks -

 

[OutinChgoburbs]

Your dad will still be able to visit her in the new place, right? If that’s so, this is not that agonizing a decision. Yes, she will have to adapt. But you’ve already been a fabulous resource, and you have little kids, really little kids. Those babies come first.

Besides, the hospice people will come out and evaluate her first.

 

[newf]

This kind of situation is so difficult. My heart goes out to you.

Try to remember that you are a mom to your children and a wife to your husband FIRST. They need you to be on your game. Be sure you are rested and taking care of yourself so you can take care of them.

Your aunt is in a good place. And as the last poster said, the hospice people will help you when she needs their care.

It’s just so hard to watch someone who was once so vibrant deteriorate like this, isn’t it?

 

[AlaAnnie]

I may be wrong, but I thought before Hospice was called in, a doctor had to provide a grim diagnosis. But, that could be true only in order for Medicare to pay for it. I’m not certain. We never got to that point with my Mother before she died.

As for moving her, I would evaluate on a couple of different fronts.

1. If she’s falling, does the current facility provide sufficient care that someone can keep a close watch on her to make sure that she doesn’t have a serious fall - as in a bone-breaking one. Or are they free to roam without much supervision? If she’s falling and not watched closely, a move to a more supervised facility might be better. My Mother (also with Alzheimer’s) fell and broke her hip. She was gone within 2 months.
2. Would you say that she has more lucid days or more foggy days? I ask because they do get used to familiar faces. If the facility is safe for her (my point #1) and she’s used to the folks there, then I would leave her there. When I had to move my Mom, there was always a decline in her condition because of the move. It’s really difficult for them to learn new things in their condition - like where is the bathroom, where is the dining facility, etc.

Alzheimer’s is such a wicked condition. I send you my prayers for you and your Dad in dealing with this.

 

[Belle10]

Besides, the hospice people will come out and evaluate her first.

Right. Hospice would probably only be the right choice if she were physically ready for it - Alzheimer’s alone wouldn’t qualify.

My grandfather died May 29 from complications of pneumonia and other issues, and he had Alzheimer’s. It is so hard to deal with, but it sounds like you’ve been doing a wonderful job.

Check for an Alzheimer’s support group in your area - ask the hospice or people at the facility where your aunt is. There are many resources available for care for the afflicted person AND their families that can help.

Praying for you and your family now.

 

[CountryMom27]

Thank you all for the advice and suggestions. I am terrible at caring for myself and with all that is going on now, I have not been getting the rest I need. I need to take care of that.

Thanks also for the support on not visiting her as often as I’d like. She loves to see the boys but it is hard to fit it into our schedule, let alone to take them out of playtime in the yard on a sunny day to drive in the car to go to a somewhat scary place (to them) to see someone they barely know. It is good for them to see me care for Caryl but only in small doses.

I didn’t know that there had to be an evaluation for Hospice. I will keep that in mind. We’re meeting with the facility director and her doctor next week so that will help me to understand what decisions we need to make.

I dread moving her because any disruption deeply affects Alzheimer’s patients physically and emotionally. But at the same time, I know a serious fall could be deadly, and the loss of her mobility from a minor fall could have the same effect.

Thanks for your prayers - kids are hungry, gotta go.