How do we know the best next steps

tryingtodurvive · July 2

I’ve reached a point where I’m withering under the strain of my DH’s disease. He’s in stage 6 Alzheimer’s and has PPA. He can do nothing for himself. I bathe him, shave him, pick out clothes and help him put them on correctly, cut up his food and feed him, make sure he has water and takes his medicine which he doesn’t even understand the concept of swallowing a pill. Every minute of every day is spent trying to keep him peaceful and happy. I’m wore out. I’ve visited a day care facility and even a memory care facility but when I see the people there they don’t look like my DH. I can’t imagine putting him in that environment but I’m growing so weary in my journey. He’s not incontinent yet but he leaves his poopy toilet paper on the floor instead of in the toilet. He thinks we’re in a hotel one minute and the next he’s obsessed that the neighbors are doing things on his property. He’s still so sweet most of the time but follows me 24/7. I’m still working and I have wonderful friends who come and give me a break one or 2 days a week but I come home to 100 questions. Well you get the picture. I’m very faithful and lean on God every minute of every day. How do you know when it’s time for something else.

ButterflyWings · July 2

@tryingtodurvive I feel your pain and exhaustion. I share them. You described my life a couple of years ago. Things here have progressed — as they will — so it is even harder in some ways even though it is overall easier as he no longer challenges my decisions or answers and does not take off on foot for an imaginary career that no longer exists. My days are filled with all the things you mentioned plus food is now cooked, cut up then pureed and I must feed it to DH. He is doubly incontinent and there is lots of laundry, he barely talks and I miss him so…yet he is right here beside me. It is I who must shadow him now, to stop him from eating things that are not food, or falling, or…you get it. My house is a wreck, my nerves are shot, and I have gained the 15 lbs he lost in the last year. I intend to keep him at home, but need to rethink my own daily care plan for me. (Your post is making me decide I need to create one, that is, and stick to it).

You are describing dementia caregiving to a T. And yes, it takes many family caregivers down, and even out. The spouse stats I saw were that 1/3 do not survive their LO's dementia. I was stunned when I learned that here. As our longtime member Crushed used to say, surviving our LO's disease is as important as caring for them (personally in home, or as supervisor for their MC care team). We are important too. So, your survival must be a primary focus. That is hard to remember when in the trenches as you described, focusing on them and spending every waking moment reacting to dementia as you say. Your outside work can be a huge blessing.

I am wondering if your DH is home alone at all while you work? His 100 questions sound like anxiety in a PWD. And the delusions you describe, plus evidence that he needs supervision when toileting, all point to him needing 24/7 support in reality, not just the catch phrase we often use. If you are overwhelmed now, then it is time. As you know, this only goes downhill from today I'm sorry to say.

tryingtodurvive · July 2

Thanks for your reply. He is never left alone he can’t be. I mostly work from home but 1 or 2 days a week when someone can stay with him. I so admire you and feel so weak that I might even consider another option. When this journey began I swore I’d never do anything but. Bless you for being such a loving caregiver. What if I can’t?

ButterflyWings · July 2

https://alzconnected.org/discussion/comment/214548#Comment_214548

We all are strong and caring, as evidenced in all that you are doing and feeling, including reaching out here for support and feedback. Please don't misunderstand me - I simply meant that I am a few years/stages ahead of you and you are right that it just continues "every minute of every day" even though the details of their care needs change. And that you are right, we can wither (and even die) under the weight of the 24/7 in-home strain. Not to mention all the other parts of our own lives and responsibilities that just go neglected while dementia marches on relentlessly. Bless you as well for being such a loving caregiver which will still be true if you decide to place him in a professional care facility and then spend time just being his wife. All our choices are hard and heartbreaking with this cruel disease.

midge333 · July 2

Not everyone can be a caregiver until the bitter end. We all have different abilities and skillsets. Some of us are limited by our own illnesses and aging. But, we are all doing the best we can for our spouses. You have obviously done a great job thus far and will continue to do so regardless of whether you place your DH or continue to provide care at home.

Dio · July 3

You're reaching burn out. Perhaps consider getting in-home help or visit more memory care facilities to find one more suitable. If you go down, the whole ship goes down. After placing DH in MCF last year, I am so glad I did it when I could.

How do we know the best next steps

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