Another bad day in paradise. Is it time?

Your job is to provide safety…..this is unsafe. I would look at assisted living. We did it for my 86 yr old mom and she actually likes it! I visit 3 days a week and take her out twice a week. She still goes to church with me and sees her church family. She loves the residents and activities. Our job is to do what is best for the dementia patient not for ourselves.

Fortunately I have a great relationship built over time with my mom’s doctor and neurologist. They are more than happy to be “the bad guy” forcing her to agree to extra help. I agreed to try to keep mom home as long as she was “safe and healthy” with safety being a primary focus. She refused caregivers in the home for months until both doctors told her the ALZ had advanced to a point it was either caregivers or assisted living or they would report her to the State Aging board (which they probably wouldn’t do) and it forced her to agree to caregivers coming in during the day. We’ve been through a couple of agencies and she hates having people in her house. In her mind they are housekeepers who do a terrible job 🙂. She doesn’t really understand why they are there. Doctor told her it’s time to look at people staying 24/7 (mainly because I’m running myself into the ground as she gets worse) and she flat refused so the doctor told her he would write orders to go to assisted living if he was forced to. So basically that it made it “her choice” by default to move to assisted living at the end of December. I’m not sure how that will go either but after 3 years I can no longer keep up with my own health (mental and physical) and well being, and trying to work a full time job while taking care of her, even with caregivers 7 hours a day. My dad also had ALZ so this is my second time around and trying to make the best decisions possible for all of us.

In my first stint as a caregiver for Mom, I eased in the respite help. "Hey Mom, Blanca is coming over, she'll be here in a few minutes, I'll be in the kitchen". I would hang out, while Mom and Blanca were chatting and then leave. This caregiver had the magic touch, 'cause Mom had gone through about 5 or 6 people prior to Blanca. So, this might not work the first time, but if possible, keep trying. I plan on doing the same thing with my husband, he's totally resistant to anyone coming in, but has a history of "drop attacks" (his discription) collaspes to the floor and I'd rather have someone around in case that happens. I have spoken to one person who would be interested in helping out (her mother had dementia)-fingers crossed when I will need her help.

So sorry for your difficult situation!

Agree with lots of advice given:
1) Hire a caregiver NOW! It does not matter if he agrees. You need to be able to get out of the house. He can NOT be left alone, as he has proven numerous times. You need to protect your sanity and keep him safe. You're the only competent adult left and you have to come to terms with that and do what needs to be done. Yup, I'm sure he's going to complain but so be it. Don't let that bother you. Expect and accept it. Find a nice way to say it and stick to it. Something like "I need to get out but I worry about you so much when I'm gone that it is too stressful. I need someone here so I can get some things done." You can have them doing chores like light cleaning and maybe get dinner started for you, laundry, etc. While they're keeping an eye on hubby.

2) Post surgery, demand he go to rehab for as long as possible. Set some boundaries as to what he needs to be able to do independently before he can come home (if ever). Sometimes it takes awhile for them to bounce back from surgery, both mentally and physically. It takes a toll.

I totally get the not being good at the cheery approach. I can NOT do it. I know I "should" with my mom but I am so beyond pretending like that. It's just not in me to behave like that. I also get the cold and hard inside. Yup. It's all so hard to deal with and just too much, for me at least, to pretend to be this bouncy happy person when dealing with the monotony and strangeness of watching a LO go down into this altered reality that they're living in.

When will his surgery be?? Can you wait to place him until after that? Get home care now to tide you over. It will be so much easier if he is transported by someone else from the hospital to rehab and then to wherever is appropriate for him long term. Getting him to leave from your house is doable, of course, but so much more difficult for you.

I wonder the same thing about my Mom with dementia. I'm still able to take care of her at her home but her decline is visible each day. Yet she is hard headed and very proud. I'm not sure she'd ever agree but it may eventually get to the point where neither me or my Mom have a choice.

I just read your post . and I feel like you just wrote my story. And I'm in the same quandary. Slightly different circumstance that I'm in . . but the theme is similar.

All of it is 'on the edge' between normal behavior and dementia. And it is so, so difficult to manage, navigate, or predict whats to come.

I'm still learning and hanging on.

1. Await next crises.
2. Emergency medical treatment plus Geri-Psych review.
3. Springibg POA or Guardianship.
4. Placement into care.

Harsh - but that is the *how*.

Awaiting for him to agree is futile. This is your biggest hurdle. That shift of dynamics.

If reasoning & judgement has dimished for him, reasoning & judgement must come from you.

Earthgrammy, which of the emotions you cite (burned out/frustrated/exhausted and furious, not to mention “cold and hard”), do you have more tolerance for? Although others have suggested outside help, I don't agree. If he's already refusing a “housekeeper” or doesn't buy into fiblets, telling him you're going to have someone come in, regardless of what he wants, will be a lose lose situation. Speaking from experience, I tried that with my wife. On one occasion, she physically assaulted the caregiver, and on another, three neighbors were trying to calm her after an episode with the caregiver. Both happened when I was supposedly “Taking a break”. Naturally, I dismissed the agency and tried day care... same result. I think that's where you are now, even though you haven't tried home care or day care,

I visited several facilities with my wife under the guise that we could sell the condo and move into one of these. They were all very attractive and offered all the services we didn't like doing anymore, cooking, cleaning, etc. When the time came, I never discussed it with her. We both went to her room and after a few minutes I said I had to get some groceries and was gone. I'm not saying that would work for you, just relating my experience.

So, I think it's time for a new “home” for your husband. The decision and the transition are not easy, in fact it's harder than hard emotionally, but it's doable.

Call your local Area Agency on Aging and explain your situation. They can be of great help. Their elder helpline for your area is 800-262-2243.

The following link may help you in moving your husband to a care facility. It's extensive but informative.

https://www.seniorlink.com/blog/50-tips-on-transitioning-a-loved-one-to-memory-dementia-or-alzheimers-careyour-blog-post-title-here

I think you need to let go of the idea that he is going to "agree" to anything. With dementia, logic seems to be the first casualty.

Simply tell him that you are hiring someone to help you, for your peace of mind and to cover yourself legally. And because your homeowner's insurance will be cancelled if someone isn't there when you go out.

I would lose the machete.

((((Hugs)))))

I think for many men there's a conscious and/or subconscious need to do "manly" things, like tree management, excavation, working on vehicles, working with wood, etc.    It's part of some men's profiles, regardless of age.

Even though he has dementia, he many still feel the need to be "manly."  Can you find other manly tasks for him to do?  What were his hobbies before he developed dementia?

So far everyone has already said what I was going to. You need to bring outside help in.

I understand the "switch has flipped"statement. I think once you've reached that point the answer is obvious. It's not up to him anymore especially if he's going up ladders with machete's. Ye Gads!

He may not like it. Well, you don't like what's going on now right? Part of being a couple is compromise isn't it? When he whinges and he will, remind him of that.

You actually don't need his permission to hire somebody to deputise for you. It's your house, you want somebody to mind your place (and its residents) when you're not there - you needn't tell him any lies about the purpose of it, just hire someone experienced in discreet monitoring and companionship of people with dementia and let them do their job. What you tell him is a straightforward "I'm going out. Mary is staying here with you, and don't give her a hard time about it please."

Is it usually for 2-4 hours at a time that you need, or would like, to be somewhere else?

Does he make a habit of shinning up ladders, machete in hand? I've been mulling that for a while and still don't know what I'd say to a client who did that. Probably something like "you know I won't try to catch you, don't you?"

You have a couple possible paths here.

1) Hire a twice-weekly person at least right away. It's not for hubs, it's for you. You have to go to your doctors, to your grocery store and what have you. For you to take care of him, you have to have this other person, or persons.

2) After he has the surgery, insist on him going to a Medicare rehab for however long they'll cover it. Then line things up about how the doctor thinks he shouldn't go home.

It would be a good idea for you to start looking into care facilities for when your husband will need placement.
In the meantime, do not give him a choice about homecare services coming in. Do not lie to him about it either.
Speak to him plainly and TELL him that there will be hired aides coming into your home who are there to help you and that they will remain in the home if you go out.
If your husband becomes too much for you and hired help to handle then please put him in a care facility.
Explain to the facility that he will be a hostile transfer. They will help you with it.