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.
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.
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.
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?"
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.
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?
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 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
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 !!!!
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.
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.
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.
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.
Hire someone anyway to keep him company while you're gone.
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.
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.
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
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.
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?"
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.