He is adamant - "don't put me in a home!"

rockymtngrrl

We had that discussion again last night. I will have to re-evaluate when he gets to that point. Hopefully it won't happen, I've got some plans. So far, his neurology team says he is in mid-stage. He has his ADLs, still driving short distances but I have a tracker on him and he's still doing ok.

I have pretty much decided I'm not going to be able to leave him for any overnight trips to my sisters' and we are going to try to go on a short trip to a town he's familiar with in a few weeks. He's already having trouble with that, unfamiliar places are confusing him and he doesn't remember how to get there so I do all the driving outside his daily routine trips.

I hope to keep him at home, there are options. It's getting harder but also easier to help him with his remote or phone - he gets frustrated and I let him get in the weeds a bit, then I'll offer help. The other day he couldn't remember where things were in the kitchen and asked, what's it going to be like in a year? I can't answer. I don't know. We'll see, is all I say.

sandwichone123

I'm so sorry to hear that. I suggest you never have that discussion again. He will not be able to understand, and if the time comes that he needs to move to memory care it will just make you doubt yourself. More and more you'll find you just need to do what needs to be done and you will be able to involve him less and less as time goes on. Many here have been able to keep their loved ones home for a very long time, but some have had to pivot due to unforseen circumstances or just due to the demands of life. It's hard to know, but our loved ones really can't make that decision and expect that we have to follow it.

Quilting brings calm

Don’t make any promises beyond ‘I will make sure you are always taken care of’. Because there may very well be a time when you can’t do it all and need to cede the 24/7 responsibility while you be the advocate.

Michele P

https://alzconnected.org/discussion/75837/he-is-adamant-dont-put-me-in-a-home

I am in agreement with the advice others have given you based on experience with family members with Alzheimer’s. You cannot predict what the future holds. There might come a time when either you can no longer care for him or decide that a memory care facility is a better option. I would tour facilities without him and place him on a waitlist with a refundable deposit. Do not discuss the subject again with him. His brain is broken. All decisions now are on you, not him. You need to do what is best based on your decisions. Has he had a driving test by an agency that determines if he is safe to drive? Alzheimer’s impacts driving. Most insurance companies will not cover an accident with this diagnosis. You will get sued for everything you own.

Sweetwater

I agree with Michele P, sounds like he probably should not be driving.

SDianeL

please have a Plan B. Will you be able to care for him when he becomes incontinent and bedridden or will you hire 24/7 caregivers? What happens if you are no longer physically able to care for him? No need to discuss it with him. It will only cause him anxiety. Just assure him you will always be there for him. I agree he should no longer be driving or be left alone. It’s not safe.

tonyac2

My first thought was about the driving and how difficult that can be to get them to stop. Like @Michele P said, you could get sued if anything happens while he’s behindp the wheel. Especially when you know he has a diagnosis. It’s not the same, but it’s almost like letting someone drive while they’re drunk. @Quilting brings calm has a very reassuring response when he starts to spiral. I like that. I’m so glad @rockymtngrrl you found this place now. I wish I had way earlier. These people are experts and give amazing advice. We all know we’re experts in our own loved ones care, but the overlap is incredible. Lots of wisdom here. When something comes up while caring for my DH, I always check here first before anywhere else.

tboard

https://alzconnected.org/discussion/75837/he-is-adamant-dont-put-me-in-a-home

I kept my DH at home as long as I could. He could not be left alone and eventually it became to hard to take him with me. I ended up spending most of my time at home. A few months ago he progressed well into stage 6 and I can not take care of him at home but I sure tried. He is now in Memory care. He isn't asking to come home. He is just fine. I don't think he understands that he is "in a home". I visit him every day and after an hour or two he tells me to go home. I leave and ask him if I can come back tomorrow and he says yes.

trottingalong

My husband will often ask me what I am going to do with him. I always assure him he will stay with me. I do that for him. I know the reality, but I don’t want him becoming stressed over future possibilities. As for driving. Dementia affects so much more than memory. Reaction time is delayed, a stop sign can be missed. Comprehension of any changing moment may be non existent. It’s a dangerous situation because you truly do not know when his brain will not understand how to turn on windshield wipers, put on a seatbelt or which is the break pedal. My insurance company told me he would not be covered in an accident. You could literally lose everythjng. This is one of the hardest things to deal with, their loss of independence.

beachwalker5

Please forgive me rocky mountain girl for piling on with the "no driving" comments above but your most immediate priority should probably be to stop your DH from driving. Driving is probably among the current greatest risks to his welfare as well as yourself and others. My DW is still pissed at me for the decision SHE made to sell her car which needed costly repairs (her decision at the time but now it's my fault…thank God her cat. converter died!). I'd rather have her mad at me than to live with the risk of her driving. Best of luck to you with your DH's driving issue along with all the other issues that come up.

rockymtngrrl

Re driving; he's had a formal evaluation and given a thumbs up. I ride with him, have him on a tracker. So far so good. It's a very small town. My plan is to take it day by day. He's mostly aware and competent but has his moments. The financial stuff is gone so I control that.

howhale

https://alzconnected.org/discussion/75837/he-is-adamant-dont-put-me-in-a-home

"don't put me in a home!" just crushes your heart. Knowing your loved one still recognizes the world enough to hold that fear and openly say it to us is so, so hard. My DW said that, asked me not to do so, pleaded at times and each time I crumbled but tried to assure her I would do my best. We never know what tomorrow will bring and I agree that making promises that may become impossible to keep is tricky. However, I believe maintaining our loved one's peace of mind while they are still able to understand what is going on is of the utmost importance. This disease teaches us, as care givers, how to tell little lies to protect our loved one. I felt that reassuring my DW that I would do anything and everything to keep her with me at home while she was still aware was most important. I was lucky and it worked out but I was also always prepared to change if needed. Good luck to you, it is so hard but I will always feel blessed that I was fortunate enough to fulfill my "promise".