When is it time to place someone who is in the late stages of EO Alzheimers?

Sadkid22

I have a friend who is caring full time for her partner. He was diagnosed many years ago and she has been his sole caretaker (with the help of her children). He is nonverbal, has some anxiety, and needs round the clock care. I think the family feels guilt about placement which I completely understand. What kind of information or insight can people give me to help her and her family find a solution that everyone can live with?

Phoenix1966

Guilt can be something that prevents a person from considering placement. But financial concerns can, too. Placement can be very, very expensive, which may be a reason someone can’t even consider this option.

If finances aren’t a huge hurdle, sometimes gently asking what the main caretaker’s Plan B is(what would she do if she were to become seriously ill or need surgery that might require a long convalescence? What backup plan does she have arranged for her partner’s care?) might get them to think about placement. Many times, caretakers get tunnel vision and don’t even consider these kinds of scenarios. Statistics vary, but I see the number 20% tossed around as the percentage of caretakers who pass away before their loved ones do. Caretakers tend to ignore their own health concerns until it is too late.

Placement can help alleviate some of the physical and mental burden of caring for a loved one and allow the former caretaker to be that partner once again, so it can allow them to enjoy their time together a little more.

At the end of the day, placement is a very personal and heart wrenching decision. Support your friend as best you can. There is no “winning” argument to be made, I’m afraid. Offer to help out if you’re able. Watching their partner even for 15 minutes so she can shower, walk outside for a breath of fresh air or run to the grocery store is a wonderful gift. Listening to her and giving her a shoulder to lean against are some of the best things you can do right now., just like it was reaching out to this community with your concerns.

You’re a good friend and she’s lucky to have you in her life.

Sadkid22

Thank you Phoenix,

I don't live anywhere near her. I live 6 hours away. I will do as you suggest and it is a very wise question. I know she does not want her children to have to step into her shoes if something happens to her, (her kids are great and help out a lot). I will ask her about a back-up plan. I love that people will reach out and help others in need. I am very thankful for websites such as this.

Ed1937

Sadkid, welcome to the forum. We're always sad to hear that someone else is dealing with this now.

Phoenix has a good reply. Placement is a very hard thing for most people. We just had another thread about when does the time come to warrant placement. I have a very short and simple answer for that. The time for placement comes when the afflicted person will get better care in a facility than they will at home. Period. There are many reasons why that might happen. Caregiver burnout is a major reason. Inability to provide the care needed is another, and there are many more. If anyone is telling her it's time for placement, it probably is. She needs to keep her own health to help her partner. That could mean placing them before she has her health affected, so she can be there to advocate for him. It's a very personal choice for everyone. You might even suggest she join this forum. We have a lot of great people here who care for each other.

Sadkid22

Ed,

Thanks so much for your response. I have suggested to her that she join this website. I have found that talking with people who understand your situation is invaluable. I hope she takes my suggestion and comes here to see how others in her situation handle life. I do believe that her health is already being affected. That scares me. I will send her a note with the two suggestions I have received from this community so far. I appreciate anyone who offers me advice. Thank you to all!

harshedbuzz

@Sadkid22

You are a dear friend. I can really understand the impulse to want to make suggestions to a dear friend under these circumstances. My BFF lost her husband this fall and there were times when I would have done something differently but kept silent.

I would suspect at a distance of 6 hours travel time, you might not have the nuanced information a person with boots-on-the-ground would so perhaps it's best now that you've shared about this place that you remain a safe place to vent and share. Unless her children are terrible people, I would assume they're looking out for their mom's wellbeing in this situation.

When I was in this situation with my own dad, I was the one driving mom for placement in the later stages because of the toll it was taking on her which is pretty typical. I will say that one thing I noticed in my family was that those who were aligned with mom (her outspoken sister and SIL who loathed dad and not without reason) encouraged me to convince mom to place dad within a week of his diagnosis in the moderate stages of the disease while his brother (who was dealing with guilt for trying to distance himself from dad's outrageous behavior pre-dx) played devil's advocate weekly with me about placing "too soon" (he died 7 weeks after admission) and in "not the best place" (dad wasn't accepted at mom's #1 choice). I tried to remain impartial to the decisions my friend was making but it was hard.

There may be reasons she has not placed him. Valid or not, at the end of the day this a family decision.

Perhaps your friend really wants to make it possible for him to die in his own home. Maybe he's in very late stages and won't be with his family much longer.

Perhaps there is no appropriate facility local to them, so home is preferable. I live in a very well served area, but there are people here who drive several hours to visit a spouse. Wait lists are real and waits for direct entry on Medicaid, if that applies, can be especially long at nicer places as the number of beds is limited.

It could be there's some other impediment to placement. Dad was rejected from one facility because of the potential for behaviors associated with his specific diagnosis. Or maybe he has some health concern that a MCF isn't licensed to manage.

Perhaps the family doesn't want to risk COVID exposure or restricted visitation going forward. It's still a big problem in facilities.

Money can be a barrier. These places come with eye-watering price tags. Dad's MCF was $7200 a month 6 years ago in pre-COVID times. My aunt's SNF for dementia was over $11K at that time. Dad lost $360K day-trading early in the disease so their nest egg had taken a major hit and mom had to factor in her own future needs for care as well. Mom was so ashamed she'd "allowed" dad to do this that she never shared the information with a soul.

HB

Sadkid22

Harshedbuzz,

Thank you for your thoughtful answer. I actually sent her an email this morning and told her I was sorry if I pushed too hard. I understand this is her decision to make and I do not know or understand the nuances. I have not heard back from her. She is a lovely, beautiful person. Her kids are amazing. I so appreciate the time people her have taken to answer my questions.

Thank you all.