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My husband is in middle stages of dementia, home with me. No other family/friends to help. He's awaiting spinal surgery for leg weakness and falling. He falls a lot, inside and out. He refuses to allow a respite caregiver so I can go out w/out worrying about him. And no, he won't fall for the "housekeeper" guise or other fiblits. Every time I have to go out (rarely and never more than 2 hrs) he promises to stay inside and watch his re-runs. But today I came home to find out he climbed up on a tall ladder with a machete to trim some oak tree branches. As he was telling me it was no big deal, he tumbled backwards and fell on his back. Thankfully he was on the ground at the time. Another time I came home to find him in a hole he'd dug. He was covered in dirt, dehydrated, calling my name, forgetting that I'd gone to the doctor.


I'm totally burned out/frustrated/exhausted and furious. I don't know how to handle this anymore. I feel myself going cold and hard inside. Like a switch has flipped. I have no more cares to give. I'm not good at the cheery "Hey, let's do this instead of that" approach because he does what he wants regardless. There are days when we still connect as a couple and I think it's not time yet for AL/MC. Other days I fantasize about it.


Is it time? And if so, how in the world do you get someone like him to agree to that? Any advice is appreciated.

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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.
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Earthgrammy Dec 2021
Many thanks.
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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.
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Earthgrammy Dec 2021
I think #2 is the way we'll be going. Thanks.
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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?"
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Earthgrammy Dec 2021
Thanks for the advice and a chuckle too.
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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.
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Earthgrammy Dec 2021
Yep. Thanks.
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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?
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polarbear Dec 2021
GA - you make manly sound like a bad word. I like being womanly and like my husband being manly. Just earlier, he was cleaning out the gutters in preparation for the incoming rain. So glad I have him to do it.
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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)))))
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Earthgrammy Dec 2021
The machete might just grow legs and walk away. They do that sometimes. Thanks!
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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
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Helenn Dec 2021
Really good advice … I would wait till after surgery .. then rehab ….
look for good memory care … because dementia only goes one way….also he could be falling because of dementia as well !!!
should go directly from rehab to care
and you can say it’s another rehab
facility to help you get well.
best of luck … hardest thing to do !!!!
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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.
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Earthgrammy Dec 2021
So true. Thanks
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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.
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Earthgrammy Dec 2021
Thanks, Bluekitty. Hang in there.
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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.
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Earthgrammy Dec 2021
It's tough, isn't it?
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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.
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DadIsFine Dec 2021
How did you deal with the getting "cold and hard on the inside"?
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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.
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Earthgrammy Dec 2021
Thanks so much
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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.
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Earthgrammy Dec 2021
Good ideas. Thanks
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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.
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Earthgrammy Dec 2021
So true. Thanks
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I could have written this. Hugs.
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Earthgrammy Dec 2021
Thank you. Chlokara. Best of luck to you, too.
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My Dad also did not want respite care but we got ii anyway and he ended up really enjoying the visit from the home care aid who gave him a shower and shaved him. They became friends. I would consider just getting the help. You need to take care of yourself too and this will help you.
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After dad’s stroke, a CNA came in to serve as a companion at times. Although Dad may have felt he didn’t need this initially, their personalities really “clicked” and they became very good friends.

He helped dad in the shower (something that was uncomfortable for me). He helped dad by taking him to the gym and spotting him for workouts and they liked playing games and working puzzles, which was therapeutic for dad.

if you find the right person, your husband will even look forward to these visits. Look for someone that shares common interests and hobbies. That way they can watch “the game” together and/or enjoy outings more.

Don’t feel badly for needing alone time (everyone does). He will need to accept the company one way or another, because it sounds simply unsafe for him to be unsupervised. If he insists on staying alone, any outing could become catastrophic.
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Earthgrammy Dec 2021
Good ideas. Thanks
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INatalie Cameras so when you're gone you can check in 24 7.

Hire someone anyway to keep him company while you're gone.
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Earthgrammy Dec 2021
Thanks
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My Dad didn't think he needed help either. I hired someone to come in to keep eyes on him for my sake. I introduced her as "my friend". Then, she would occasionally "drop in" and wait for me. At that point, I was working and coming up after work. I don't know if that would work for you, but there was the day that I got a phone call at work that he was on the roof, sweeping leaves and wouldn't come down. *sigh*.

Bless their hearts, they are losing independence and they know it. Find some outdoor "jobs" you can do together. It's hard. I wish I could help more, but this dvice is something you can do until you reach a decision.
Another thought...if he's a veteran, check with your local VFW to see if they might have anything in place for someone to come and visit, and maybe invite him to a meeting or activity.
Bless your heart too. It's hard. Really hard. You need someone to vent with, and some time away. Try as much advice as you can get on here, and when you're comfortable that he's ok, go for it and get out of the house!
He's only going to get worse, and it's better to get him used to relying on someone now than later. Just a thought from an experienced caregiver.
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Earthgrammy Dec 2021
Thank you, Ella2021
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I've read that when someone with dementia is sedated, they may not return to the same level of cognizance that they had before sedation. If your husband has spinal surgery, I am sure that he will be anesthetized, and that there is a pretty strong likelihood of him not being where he was before the surgery. The choice may already be made for you. After surgery, he'll go to rehab. After rehab, you might not be able to care for him at home.

My husband has CHF and other heart issues. Surgery was recommended. After discussing the ramifications of being put under twice (once for the testing, once for the surgery) he decided that he'd rather die from the natural progression of CHF than be the guy in MC for years with a good strong heart.
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Earthgrammy Dec 2021
Food for thought. Thanks.
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Please try to get aides to come in to watch over your husband when you have to go out. He sounds like he needs someone 24/7 watching over him, and this is too much for you to do on your own. You also need to take care of yourself and find ways to give yourself some breaks from caregiving. Get connected with a local social worker who can help advise on your and your husband's options. Medicare may pay for aides. Have a Plan B, for when it is too much for you to care for your husband at home. My mother began falling alot as her dementia progressed, and eventually she 'forgot' how to walk. She must be transferred from her bed to a wheel chair (or geri chair, which is a medical version of a lounge chair) and it takes 2 people to do this, even though she weighs about 90 lbs. She's a dead weight. If your husband has dementia, he may not be able to make good judgements about himself at this point. His basic options, when you no longer can do it yourself, are in-home aides, or assisted living/memory care facilities. All the best to both of you!
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Earthgrammy Dec 2021
Thank you, NancyIS
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Oh, my. We are living the same lives. I came home one day to find my husband on a ladder with a chain saw! And I am also not a very patient caregiver. This journey is truly, truly hard. The hardest part at this mid-point in dementia is that he is still capable of doing many things for himself. He can fix himself breakfast, watch the news and understand (though not remember a few minutes later), or even use the leaf blower to clean the lawn. However; judgement, logic, balance and memory are declining every day. I, too, am wondering how to make the next step into seeking help a non-combative issue. He thinks he's fine! I've been following this forum now for several months and I do find a kind of kinship here. This is my first post/answer and I am so grateful that I read your question. It makes me feel less alone and that in itself is a help. One thing that I have been working on is doing research into what help will be available when the time is right to engage it. Having some kind of plan in place is also comforting ~ even though I already know nothing will actually go as 'planned'. Stay strong, don't beat yourself up for not living up to some vague definition of standards and know you are not alone. Peace.
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Daughterof1930 Dec 2021
You are wise to be looking into the future options. A good caregiver knows it’s vital to look out for him/herself to be able to adequately help another
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You are allowing someone without full mental capacity control you.

Figure out what’s best for him and do it. Don’t doubt your decision.

Nothing will get better. You will continue to stress. He will continue on his path of decline.

I hope I have provided you with the kick in the butt you need.

Take care,

Ex-caregiver providing info from hindsight
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Earthgrammy Dec 2021
I consider myself kicked. Thanks.
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It is time for a respite caregiver or residential care. The him you need the caregiver for your peace of mind.
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Earthgrammy Dec 2021
Thanks
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I’m so sorry. I am not yet at your position, but I will be. We also have no friends or family to help. Just me and my husband. He is in early stages.

I hate to say it, but from what I’m reading, it is time. You have given all you can. You need to get a break. It will be probably the toughest thing you ever do. But for your own health, you need to get your husband into a facility. Neither of you will like it at first. But you don’t like it now. You are wearing yourself down. You know it’s inevitable. You will visit as much as you can…you are still each other’s lives. That won’t stop. However your husband needs care, you need a rest. If your husband were able to think clearly, he’d probably tell you to let someone else do the “heavy lifting”.

It’ll be a battle, but your husband may get seriously hurt. You don’t want that. He isn’t thinking straight and he doesn’t realize the danger he puts himself in.

It is time. The thoughts and prayers of mine and probably everyone on here are with you.
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dspd77 Dec 2021
I totally agree with you. We went through the same kind of incident with my mother.
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It's not up to the patient to decide when additional help is needed, it is up to the caregiver.

A good friend asked me after my nine years plus of caregiving, 'why do you think ____ (loved one's name) life is more important than yours?"
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Earthgrammy Dec 2021
Thanks, LexiPexi
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I have one CNA That comes in 2 times a week and she cleans and Bathes him , does Laundry . It Makes a Big difference . he doesn't Have a choice your Burnt out . I would Look Into some help it makes all the difference in the world .
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Earthgrammy Dec 2021
Thank you.
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Yes, it's time. Feeling "cold and hard inside" isn't going to get better. If you need permission to place him in memory care, then by all means go ahead.
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Earthgrammy Dec 2021
Many thanks.
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You need to tell him tough titties and get respite care. Believe me it’s a lifesaver. You must recharge your batteries. When I took care of my dad I loved the time to go out for shopping or get a meal out with a friend. It’s time for some tough love if you want to be in it for the long haul. You might want to tell him if he wants to stay home and not go to a nursing home them that’s how it’s going to be.
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Earthgrammy Dec 2021
Thanks for the advice and a chuckle.
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I told myself that I would keep my Husband home as long as it was
SAFE for me to care for him and SAFE for him.
I think you have reached a point where it is no longer SAFE for him to remain at home.
I am sure he fully intended to stay in and watch re-runs but with dementia you never know what is going to pop into that brain.

You do not need him to agree to placement.
Yes he will be royally pissed at you.
He will be angry.
he may even say he hates you for doing that to him.
BUT
You are doing this because you want to keep him safe.

In the early process of my Husbands dementia I often said that a "bad day" this month is going to be a "good day" in 2 months. It is like trying to walk up a sand dune, you get so far and you slide back a bit and then you start again.
You have to rejoice when you get a little further but be prepared to back slide.
(The Serenity Prayer became pretty common for me)

Placing someone is a tough decision. Only YOU can tell if it is right for you and your husband. Do not let anyone "guilt" you into doing something you can not do. Placing him in Memory Care is not a "failure" it is admitting that he needs more care than you can safely give him at home.
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Earthgrammy Dec 2021
Thank you, Grandma1954
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