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.
I apologize if this reply repeats other responses. From what I read, it seems like now is the time for your unfortunate husband to be placed in a facility. It is not an easy decision to make but his and your personal safety need to be considered.
This is my suggestion: The next time he falls, dial 911 and have him brought to the ER. You may have to insist he go. Once he is in the ER, tell everyone you encounter that you are no longer able to keep him safe at home. Tell the person who checks you in, the triage nurse, the nurse who cares for him in the ER, and the provider (either the physician or nurse practitioner, whichever one sees him) you are unable to keep him safe at home. Let them know all of his unsafe behaviors. Ask if there is a social worker to whom you can speak and get advice. Hopefully, he will be admitted for geriatric psych evaluation and following that, placed in a facility close enough for you to visit.
This sounds simple but it can be incredibly anxiety and guilt-provoking. There is no reason to feel guilty and yet that is what happens when we decide to take this step. Just keep reminding yourself about his unsafe behaviors and keep in mind how much worse you feel if something drastic were to happen at home.
We tried to keep our Mom at home but because of her dementia, she just could not be reasoned with. She wanted to continue to drive and live on her own but her unsafe behaviors would just not allow it. She has extreme memory loss and sundowning, which made her impossible to deal with every afternoon into the evening.
She is now in a very good facility and we go to visit frequently. Sadly, she still asks about when she will be going back home but we are afraid if we try it, we will be back to square one or worse.
I wish you all the best, I hope there is someone in the family or a friend or priest or pastor you can speak with for emotional support.
Thanks for reaching out!
Your husband may need an channel his attention, you said he was trying to do things that fix or repair areas in and around your home. He may like to tinker with broken things and try to fix them, or some hobbies where you can buy a kit and construct a bird house, if there are things around the house that he can repair, alarm clocks, furniture that is made of wood and needs to be sanded and repainted. hinges on cabinets, door knobs, any type of fix it or build it type of things, this could be a solution to your feelings of being his only outlet, besides food and television. Remember that there are so many aspects to each of us, and because we lose the ability to think the way we used to and move the way we used to we still need to feel a sense of accomplishment. This is just my opinion, and advice, I hope it helps. Have a good night.
And, yes, it's time.
When there is care available use it.
When he is in a safe place, then your visits are in your control, if it is a good day and connection is there, great. If he is obstinate, tell him you have an appt and go.
You can't live with someone who is illogical and keep your sanity.
I can soooo relate. I don't think there is a hard and fast rule but when he is not able to be safe and you are not safe caring for him. It's time. My husband is not quite as far as yours sounds. But I fear it's coming....
I am seeing some of the same types of behaviors with my 61 yo husband. It's as if he were still 25 and strong like bull... even with HX of two strokes,...He will drive up north and work himself almost to death at our cabin, or he will walk on the roof like it's sticky, or he'll climb ladders, use chainsaws and try to fix up 25 year old cars, bring greasy dirty tools inside our clean home... All the norms of our 40 years have gone out the window, logic and rational thinking is impaired.. but he can behave completely normally at times. Receptive communication is impaired and impulsiveness and strange things continue..... off and on gaah. Blessings.. this is a rough season. We are all with you. It really does help to vent.. sometimes I just pray pray for God's wisdom to be given to me...
It's not your fault, but it is your responsibility to your husband to keep him and others safe from his failing mind. Try to comfort yourself that you have already done all that you possibly can do.
Get him placed where he'll be safe and reclaim your sanity. You don't need to get bogged down with guilt or obligation because it's a necessary and right thing to do.
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.
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?"
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.
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
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.
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.
Hire someone anyway to keep him company while you're gone.
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.