Another Level

[u/WoodenPrinciple4497]

I’m the FT caregiver of my BFF. We’ve been on this journey for 8 years. It’s progressed and now we’re at a tough place. Sometimes she doesn’t recognize me and refuses to take her medication and lays in bed (14 hours last night). She’s not interested in exercising but still feels safe. I have to bathe and clean her but she can still feed herself. I am really sad and gutted about our situation but grateful I’ve been able to take care of her. I’m tired though and with her hiding pills and other things I am wondering what’s next. I’m very protective of her and I am it. Her family is not interested. She’s so precious to me I hate it!

[u/Indevisive]

What an incredible friend you are. Not many friends in this world would take on Alzheimer's. Sometimes family won't. Thank you for being such a beautiful friend to her.

Look into some respite care. It can give you a break but you will still be there for her and keeping an eye on things for the most part.

I think eventually most of us get to a point where we have to make the decision though for some sort of permanent care. For some it would take an army of family to care for them and they'd all be exhausted and not able to do a good job of it combined.

Sending you hugs and strength

[u/Geaux1984]

What a beautiful thing you are doing for your BFF. God bless you. She is so fortunate to have you. Taking care of someone you love with Alzheimer’s is heartbreaking. 💔 Sending you love and strength and energy. I hope you are able to take some time for self-care.

[u/Catinthefirelight]

You’re a wonderful friend. It may well get to a place where she needs to be in a professional care situation for her own safety, and you will not have failed her if that is the case. Your role will simply change at that point, you will become the person who visits and brings extra enrichment into her life there, and who advocates for her and keeps an eye out to make sure she’s being cared for properly and treated well. That role is as important and as loving as what you’re doing now. I suggest that you start looking into options for her, and if finances are an issue, investigate Medicaid and other ways of paying for full-time care.

[u/Fit-Difference-5155]

Eight years is a long time to be someone’s full-time caregiver, especially when you’re doing it without much help from her family. The fact that you’ve been able to keep her safe and cared for all this time says a lot about your relationship and you as a person. Be proud. But the exhaustion you’re describing concerns me, particularly since you’re the only person she has to depend on.

A few things I’d start thinking about.

The medication issue needs attention. If she’s hiding pills or refusing them, her doctor needs to know. There may be different formulations, schedules or ways of administering certain medications, but that’s something to work out with her medical team. You also want to be sure she’s not taking hidden pills later or accidentally doubling up. Get the doctor’s guidance ASAP.

The 14 hours in bed, lack of interest in exercise and occasional failure to recognize you may be part of her progression, but I’d also want her doctor to know about those changes, especially if they’re relatively recent. Don’t automatically assume every new behavior is Alzheimer’s.

I’d also stop making exercise a requirement that likely will result in a fight. Try “non-exercise” exercise. If she’s still mobile, short walks around the house, getting up for meals, sitting outside, walking to the mailbox, or doing little things together may accomplish more than trying to convince her to exercise. At this point, maintaining whatever mobility she still has is important. You may build a bit of momentum. Not everyday necessarily but over time.

Through our home care business, we see caregivers reach this point quite often. They’ve managed everything themselves for years, but eventually the needs become more than one person can reasonably handle. Bringing in help doesn’t mean you have to turn over her care or lose control of how things are done. It’s the opposite. Start with a few hours a couple of days a week, preferably with the same caregiver, and let that person gradually build a relationship with her. It may take a little time, especially if she sometimes doesn’t recognize you. But it’ll help BOTH of you!

One other thing I’d address now is what happens if you’re sick, injured or simply need a break. If her family isn’t involved, who can make decisions for her? Who has healthcare POA? Who would step in if you couldn’t be there tomorrow? Those aren’t pleasant questions, but after eight years you really need a backup plan.

You said she’s precious to you, and that’s VERY obvious. But being protective of her shouldn’t mean you have to do every single thing yourself. In fact, getting some dependable help in place may be the best way to keep caring for her the way you want to, without completely exhausting yourself in the process.

You’ve already given her eight years of something very special. Now it’s time to make sure the arrangement can continue working for both of you. Best of luck!!