"You're not the only one dealing with issues!"

Hi Merry- You asked if I’m still struggling, I guess you could say we’ve “graduated” to the next level. My husband, after the ring went on, revealed himself to be a very easily irritated person, who coped with any level of frustration by screaming and “acting out”. As the years went by, and I now know dementia was creeping in, I coped by working alot of hours and keeping out of his way. COVID was actually a blessing as eating out was no longer an option, it had always been a possible opportunity for a melt-down and I’d be on edge.
The last year at home, he became even more angry and uncooperative with me- wouldn’t eat what was prepared, wouldn’t let me set up a pillbox or participate in the meds, wouldn’t shower or change clothes, turned night into day and day into night. All this culminated in out-of-control diabetes, delirium, and encephalopathy- off to the ER with a friend’s help. He was admitted, stayed 2 weeks, had two major meltdowns in 8 days for which Security had to be called. His PCP and the hospital neurologist said he could not be handled at home. For my work, I had visited every assistive living in our county, the one I liked the best had an opening, he went by w/c van, although fully ambulatory- I was afraid he wouldn’t get out of the car if I took him.
Fast forward a year and 3 months, he is at his healthiest ever with the structure of the assistive living, the diabetes is under good control, he’s made a circle of guy friends who hang out together, he loves to tease and chat with the staff. I visit twice weekly for an hour each time and make sure he has the things he wants and needs, take him out for drives and stops at the Dairy Queen drive-through in good weather.
I’m still struggling a bit with being in the house alone and being in charge of all the things that keep a house going, but my brother and SIL live nearby and we’re all close.
I’m also struggling with my husband’s mood and something that just happened two days ago. I’ve had very mixed feelings over the past year with his new mood- very pleasant, very appreciative, never a hint of irritability. Has he mellowed with the proper medication and the dementia? Does he remember how mean he was and feel regret? Does he have insight that he should be nice as I’m the one who gets him what he wants? Maybe I should take him home? But two day ago, in the DQ drive-through, he suddenly erupted and I was right back in the old days. Sometimes God sends a warning, I’m thinking this was one and I better pay attention.

honestly i am so sorry you are dealing with this. I had my best friend come over to myhouse and she said something so helpful to me and this is why we are best friends. She asked me : How can I help you? Can i text more and check in, text less and give you space, clean house, grocery shop, etc. you tell me. It was so refreshing to have someone not just say it but have actions behind it. I feel like these are the ones that I want to keep the friendship. she was going through alot at the same time and was never upset with me for not "checking in with her or asking her daily about her day, etc" she knew my overburdening load of caregiving and the stress of working full time while doing this was overwhelming

Welcome to the forum rxw1853. You are in a good place for support with your situation.

First, bless you for working so hard to care for your wife!
As many other full time caregivers here can attest to, it is an ABSOLUTELY consuming and exhausting job, physically, mentally and emotionally.

Second, I am so sorry you’ve had a friend speak to you this way. Perhaps, do to their own problems, they were just upset at the time and they didn’t mean to come across so harshly. Also, maybe they were not aware of how ill your wife is and thus, how consumed you are by it. Often times, people simply can’t imagine and don’t understand how consuming caregiving is unless they’ve been there; and even more so when it’s a loved one and/or you’re the primary caregiver. If it was a genuine stab at you personally, I say: shame on them!
Your wife is obviously (and rightly) your first and most priority in life. It sounds like you’re someone who perhaps your friends can and have relied on in the past. That’s wonderful and unfortunately, hard to find these days.
But, someone is only a true friend to you if they can be supportive or at least try to understand and cut you some slack when you are enduring such a hardship in your life.

If you feel this friend was just upset or not understanding, maybe try first explaining that you don’t want to hurt their feelings, but your wife needs you immensely right now and you just don’t have time for much outside of that. Maybe then tell them they are important to you and you would still like to enjoy time together. Ask them how you two might keep in touch in a more brief way. Leave the ball in their court.

Unfortunately sometimes when we’re in dire distress (as you are now) is when we find out who truly is our friend. I really hope they come around.

Food for thought:
“ A true friend shows love at all times And is a brother who is born for times of distress.”
(Proverbs 17:17)

Also, I really hope you can find some answers and help for your wife. Don’t forget to take care of yourself too, physically and mentally. You can only care for her if you are well.

Hi @centre, it sounds like your husband is well placed where he is, thriving, and you are spared the hurt of his abusive behavior. You now have some breathing room and time for yourself. Why disrupt things as they are?
You will get the hang of taking care of the house, your finances, and all that. I never thought I would, but I have.
Maybe writing a heartfelt (undelivered) letter to your husband him about what he did in the past and how it made you feel would be helpful to you, let you clear the air, for yourself and move on.
I'm fortunate that my husband with moderate Alzheimer's is sweet and compliant, very appreciative. If I dwell on his past behaviors, it gets me nowhere and I'm not living in the present. I only hope our situation stays this way, but who knows?

That is great information, @centre, thank you!
Merry, I meant to say Medicare coverage in the US. We have Medicare but can't use it outside the US. Currently I'm self-insured in my host country - there is a public hospital network, which is pretty good, but the key advantage is affordable access to caregivers. There's no subsidy but their salaries are very reasonable.

Thank-you, Teri, for your support and ideas. I know I can do what has to be done and I do continue to need breathing room and to remind myself to relax.

Hi @denisefrey, my husband has moderate Alzheimer's Disease, diagnosed in 2019. For a while, he was resistant to showering and washing his hair. He broke his hip in Jan. 2022 and while he was in rehab, I had the tub removed, a shower bed installed with grab bars and added a shower seat that hangs over one grab bar. When he came home, I realized it was easier to get in the shower with him, then give him instructions from outside. Now he loves to shower and washes his hair whenever we're in there - usually every other day. Then he thanks me for the wonderful shower. When I asked him why he didn't like to shower before, he said it was because he didn't know what to do.
Prior to all this, I noticed that he wasn't cleaning himself very well when, doing laundry, I saw his underwear. I installed a bidet toilet seat cover, and while he was resistant to it in the beginning, he's taken to it very well.
I remember my mother-in-law, always a fastidious woman, told me she hated showers in her later (declining) years. She said they felt like sandpaper scraping her skin.
Of course, everyone is different, and this may not be helpful at all for your situation. I wish you the best.

Hi Merry- You asked if I’m still struggling, I guess you could say we’ve “graduated” to the next level. My husband, after the ring went on, revealed himself to be a very easily irritated person, who coped with any level of frustration by screaming and “acting out”. As the years went by, and I now know dementia was creeping in, I coped by working alot of hours and keeping out of his way. COVID was actually a blessing as eating out was no longer an option, it had always been a possible opportunity for a melt-down and I’d be on edge.
The last year at home, he became even more angry and uncooperative with me- wouldn’t eat what was prepared, wouldn’t let me set up a pillbox or participate in the meds, wouldn’t shower or change clothes, turned night into day and day into night. All this culminated in out-of-control diabetes, delirium, and encephalopathy- off to the ER with a friend’s help. He was admitted, stayed 2 weeks, had two major meltdowns in 8 days for which Security had to be called. His PCP and the hospital neurologist said he could not be handled at home. For my work, I had visited every assistive living in our county, the one I liked the best had an opening, he went by w/c van, although fully ambulatory- I was afraid he wouldn’t get out of the car if I took him.
Fast forward a year and 3 months, he is at his healthiest ever with the structure of the assistive living, the diabetes is under good control, he’s made a circle of guy friends who hang out together, he loves to tease and chat with the staff. I visit twice weekly for an hour each time and make sure he has the things he wants and needs, take him out for drives and stops at the Dairy Queen drive-through in good weather.
I’m still struggling a bit with being in the house alone and being in charge of all the things that keep a house going, but my brother and SIL live nearby and we’re all close.
I’m also struggling with my husband’s mood and something that just happened two days ago. I’ve had very mixed feelings over the past year with his new mood- very pleasant, very appreciative, never a hint of irritability. Has he mellowed with the proper medication and the dementia? Does he remember how mean he was and feel regret? Does he have insight that he should be nice as I’m the one who gets him what he wants? Maybe I should take him home? But two day ago, in the DQ drive-through, he suddenly erupted and I was right back in the old days. Sometimes God sends a warning, I’m thinking this was one and I better pay attention.

Everyone has problems and some want to tell you theirs. I really don’t want to hear theirs and I don’t want to tell you mine. Makes it hard to help someone like that isn’t it?