Patient here. I’m the one who has stopped fighting what can’t be stopped.
My plan was to move to my daughter’s next month but I’ve reconsidered. I’m moving to assisted living (as it’s called in US) instead. Let me tell you why. Maybe I can help you see both sides of my decision, and that might help you when the time comes.
Its not really safe for me to live alone anymore, and it’s constantly more frustrating as my hands get more difficult to use, my speech fades in volume and my brain can’t keep up. Everything gets harder every day.
My daughter and her husband asked me to live with them now that things are getting noticeably more difficult and I gratefully accepted. I would be safer, have to prepare foods less, and generally have someone to check in with me as they go about their day. But as I thought about it I became less enthusiastic. I don’t want them to face the increasing personal awful needs I’ll have. They can’t see down the road like I can (like most advanced people on here can). I mentioned wiping my butt for me in the future and they said they’ll get other people to do that, but if I’m in need tonight and the next helper doesn’t come til morning it will not be avoidable.
I don’t want them to feed me. Or bathe me. Or help me to the toilet. Or deal with my increasing angry outbursts. I don’t want to die in my daughter’s house.
So I’ve found a good assisted living place near them that will do all those things plus cook, push my wheelchair for me, do my laundry, clean my studio “apartment” weekly, make my bed every day (which is really a great way to check in on me every day), give me medications on schedule, be onsite in case of emergency and much more. They’ll increase services as I progress.
It’s near my daughter’s home, luckily. So she can visit as a friend, largely able to avoid handling my personal needs, which has become a priority for me.
I visited my mother several hours a day over the 7 months she lingered after a major stroke in a nursing facility. She was a “sundowner” who got up and caused general mayhem every night. She knocked the head nurse to the floor and walked around even when safely strapped in the wheelchair. They put an alarm bracelet on her ankle that sounded if she got near the front door.
I find now that those are my strongest memories when I think of mom, who was so involved in my entire life, and I don’t want that for my daughter. I can see she already misses parts of me that are fading. I do, too.
Here’s the really surprising thing I found out when I did the math and got a daily rate: the assisted living facility cost is equal to only 4-5 hours of home care a day. From that perspective it’s an easy choice for me. The funds I’d use to pay come from money I’d hoped to pass on to my daughter… but I’ve decided this is a bigger gift than the money itself. I still have an insurance policy that will pay them a nice sum and they’ll get whatever cash is left, plus a small retirement account. We’ve discussed it and she can finally see that I’m not running away from a life with her.
Part of what makes this an easier choice is that I don’t think I have more than six months to a year left. I won’t accept a feeding tube so I assume aspiration pneumonia will come calling. I’m prone to urinary infections and won’t choose to treat them. I’m completely at peace with that.
I look forward to spending time with her on my terms long as I can.
How about you?
— Kyle
Written by
Kayelless
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How very brave of you, KLS! I hope all works well and that your daughter understands why you are doing this.This way you remain in control of your own life.
I am sure your daughter will be understanding. I tried to look after my pop with PSP and could not do it because all the things you mention became my reality. Hes in a resthome now, and doesnt even recall and smiles everytime I walk into his room.
What a lovely letter. You are a thoughtful , sensible and selfless person. As a carer for 11 years now, I completely agree with your decision not to put the burden on your daughter and her family. Even caring for my kind husband, I began to resent it in the end. It was too much for one person to cope with 24/7. Carers came 4 times a day but no one was there the rest of the time when you needed them too. My husband is now in a Nursing home and he is happy that I can have a life too. All the best to you and thank you for sharing your thoughts with us. I hope one day , I can make the same decision for myself too.
Thank you for sharing these very wise thoughts. I agree with everything you've written. I am in the 5th year of taking care of my husband of 55 years, doing all those things that in the beginning he said he would never allow me to do. It's so hard but life without him seems unimaginable. I so hope your assisted living facility will provide you the care that you so richly deserve. God bless you Kayelless.
I agree with your decision. If is a difficult one to make but its your choice and in your control . You daughter can be your daughter and not the care giver. In time your needs will be greater and she will be there as an advocate for you to ensure you recieve the care you require.
bravo I haveCBD and I say the same thing I want all family and friends to enjoy life because as we all found out you have no idea what is going to happen tomorrow I just wish I knew when the end will be thank you so I could address this issue
We recently lost our dad/husband to CBD and as a late diagnosis we were never able to discuss the future before his condition nose dived. As a family we had to make the decision to put him in a nursing home which was so difficult, lots of sleepless nights and a tremendous amount of guilt, but the right choice for us.
I’m sure your daughter will be so thankful she had you make this decision especially as you’ve been able to explain to her why. I’m also sure once your condition declines that she’ll be relieved that you are in good hands and getting the best care.
Bravo to you Kyle and I wish you all the best and hope you have many many good and happy days left with your loving family ❤️
Thank you for sharing your plan with us. It shows great clarity of thought, both about where you are now and what is to come.
My mum made an advanced care plan shortly after she was diagnosed 3 years ago. In it she stated that she did not want family to give up work to look after her. 18 months ago she chose to go in a nursing home rather than increasing care at home. Her plan alleviates my guilt slightly when I think I should have done more to keep her at home.
Of course everyone’s circumstances are different but it sounds like your plan is good for you and your daughter. I wish you well.
Thank you for sharing your plans. I recently moved my mother into an assisted living place after several years of living with me. She is unable to communicate. I believe and hope she would feel the same as you do.
That all sounds very sensible. You must stay one step ahead of this disease and it sounds right to think that staying with your daughter would only work in the short term. Do not underestimate how long you have - it sounds like there is plenty of gas in the tank still! Hope you can keep enjoying life for a good time to come. Richard 🙂
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I’m new to the site. My husband has CBD
Moved on 
\"Why am I so tired all the time?\"
forced to move right after my husband's death
Hello - I’m a new member and first post.
