SICK, DISTRESSED, CONFUSED

ChrisVoorhis

My DW has had AD now for 11 years. I have been able to care for her most of this time by myself. In the last 3 years i have arranged for friends of her to work/ play here with her so i could have a little freedom. Also two part time caregivers but they all leave at 5 and no Sunday help. She still insists on me to be here but it has allowed me to get away for an hour or two weekly. Off and on she goes thru new stages now in 6. As she progresses it gets much more difficult to deal with. In then last two years she has declined significantly and has had 2 UTI’s which really hastens the disease along. Now she is severely confused and has been going thru the take me home stage, for last 8 months. Now since the last UTI 2 weeks ago she starts wanting to go home at around 1:30-2 and continues until i can calm her with some medication. Mad at me cause i wont take her home, mad at friends cause they wont take her. When we offer to take her home we tell her show us where it is and then she says she doesnt know but we do, and is upset the rest of the day cause we wont take her home. We realize its not really home but nothing we do or any deflection interrupts her thinking. This is now causing me much distress and am getting sick as a result. I now realize i might need to put her in a MC facility but our daughter thinks i could do more by having full time 24/7 care givers in our  home and have me live in a small unit attached to our house and let them care for her. Her daughter comes here 1/2 day Fri and stays till Sat 5 pm. So she does see some of the stress but goes home to decompress for 5 days. She feels in my life, i have been able to accomplish so much and solve so many issues for us and others,  that i am giving up to easy. I am here 24/7 and never wanted to put my DW in a care place, but now i feel my life is actually in danger and that scares me. Please help me see the proper view with all your insight

Sonja69

I have been dealing with my mother's dementia for years and she was formally diagnosed with vascular dementia in September 2021 and I believe she's at stage 6. I know exactly what you're going thru as far as the insistence of wanting to go home. To make matters worse, my mother has paranoia, delusions, hallucinations and agitation. She is currently in rehab for her second fall in 6 months that resulted in broken bones. She will be living with my husband and I upon discharge...and to put it mildly, she's a handful! The biggest thing I have learned in all of this is, you must put yourself first. It's not being selfish and you should not feel guilty for it, nor should you have to explain to anyone for your decisions. It's easy for others to have all the answers and/or make you feel guilty for something you are wanting to do or not do. I've even had medical staff try to 'guilt' me into things, I shut them down real quick. If you feel that it is in your wife's best interest to put her into a facility, then you should not feel guilty or bad about it. If you end up in the hospital or dead, what will happen to your wife? You can't burn the candle at both ends and then have your daughter dictating your decisions. You need to do what you think is best for both yourself and your wife and if your daughter can't handle that, then so be it. You can't worry about what your daughter thinks or feels anymore.

SusanB-dil

Hi Chris - You are probably best able to determine if MC or 24/7 care is best, as you are the one with her the most.  You cannot continue on status-quo to do this to the detriment of your health.  Whichever you decide, do so ASAP, please.

Have you told her doc that she is this agitated? In the meantime, have you tried 'driving her home', going out and just circling back to home? 

Rescue mom

You must take care of yourself. One of the many awful things about this disease is that it often takes two lives—the PWD, and the caregiver. The disease has already claimed your wife, don’t let it claim you, too.

Many people here have not been able to handle long-term caregiving for years, not without significant help. Giving up??!!?  You’ve done an amazing, incredible job for years. I didn’t see your age, but none of us get younger, and most of us slow down or develop our own issues as we age. That’s life.

Just because you did it for 10 years, starting many years ago, does not mean you can do it forever. I bet your daughter does not want to see or recognize that you, her “well” parent, may be getting older, and has your own health issues. Nobody wants that for their parents. But that sometimes sadly happens.

 It’s good everyone seems to at least realize you cannot continue to do this 24/7 without more outside help.

One big factor in the home care vs. facility debate is simply cost. Having aides at home 24/7 or even 24/5, is usually far more expensive than a facility, unless family volunteers. If you have not yet compared costs, you may be surprised at the big cost difference. Even if you offer living quarters, that can have its own complications including time off and when are they on duty. And you move out of your home to make way for aides? Is that really beneficial?

 Then there’s the issue of will the home aides show up? What if they don’t show up? Are they honest? Are they trained in how to deal with later-stage dementia problems? As you know, dealing with wandering, aggression and/or incontinence can be really hard and frustrating.

A good facility staff is trained and experienced to handle those. There’s always somebody there—they work in shifts, so not exhausted—and medical help available on site. Again, nobody can do it 24/7 for long without a lot of help. The socialization, activities, having others around,  is another benefit of facilities. Many here have said their LO improved at a facility.

But one of the mantras here has been that caregivers do what they can in the face of a horrible  untreatable disease. When they can’t, for whatever reason, no guilt. You have been amazing for over a decade. Now, as most do, you need more help. No guilt about that. 

You will continue to look out for her no matter where, just in a different way—but you have to stay healthy to do that.

Stuck in the middle

I wouldn't think of a decision to move her to MC as "giving up" any more than I would consider myself giving up if I put my truck in four wheel drive when I got stuck.  I would think of it as taking action to cope with a problem.

If you think your health is at risk, it probably is.  I struggle with my blood pressure and my doctor thinks my caregiver role has something to do with that.  With the stress you describe, I would be surprised if your health were not being affected.

I think I would go with MC if I were in your shoes (and I will be, in another year or three).  I don't see how she is better off at home with help and you in the cottage versus being in MC where there is a peer group with which she could interact.  Your daughter might be right that you could do that, but why would you?

I'm not an expert, but I think you're right that she needs MC.  And you need for her to have it.

Gig Harbor

Ask your daughter to give you a full week off and at the end of that she will see why you just can’t do it. 24/7 care is a lot more expensive and as your wife gets weaker one caretaker may not be able to care for her, it might take two. Also when a caregiver is a no show or calls in sick you will be responsible. Sometimes the best care that can be given is not in your home.