Re-arranging the furniture in my head

mrahope · February 21

My DH has been so angry and almost downright abusive in the last few weeks that we are considering placement in MC. It is such a tough call, but I realize that being ruled by the fear of what he might do next is not a tenable position. Neither is walking on eggshells.

I have begun to realize that I am acting out of fear a lot of the time when it comes to him. He has yet to actually attack me physically or even threaten it, but he has had rages where he throws whatever comes to hand, and the last one was frightening. I was also frightened that he might go somewhere where he was unsafe when he called two rideshares and my DS had to stand in his way so that he didn't try to go to the DMV and test to see if he could get his license back.

It is so hard to admit what feels like "defeat" to me and get ready to place him. He isn't incontinent, nor unable to speak or recognize me, but is it enough that I feel unsafe a lot of the time? I am so afraid that he might become lucid one day and want to hurt me for even thinking of MC. I have simply decided to say that I feel others can do a better job than I can of keeping him safe should he ever be able to understand it. Has anyone else had this hard of a time with this decision? How I wish there were rules or some checklist somewhere that says, now it's enough...but life never comes with a rulebook, does it?

Thanks for "listening" everyone.

M1 · February 21

mra, I have been in your shoes. The definitive moment for me came when our very experienced, very compassionate, very smart internist (had taken care of both of us for over ten years) looked at me and said, "M, you just can't do this any more." He had had to put his own mother in MC, too, and spoke from personal experience.

Placement has been no picnic for us. But I do not regret the decision; what was true then remains true now.

Victoria 2020 was an active poster in the spring of 2022 and suggested I make a list of all the things I was having to do to keep us rolling, and to look at that list every time I thought about the decision. I still have it, and here it is:

When I look at this, it's pretty evident I was having to twist myself in knots just to get through every day. And most home caregivers here are in similar or worse positions. And I am very aware that I was lucky I was dealing with a woman, not a man; testosterone is a bad risk factor for actual violence.

Beachfan has written eloquently about how she realized how much her life had been lost to just keeping her husband at home, and ghphotog has just done it. Ed did it. Many others I am sure I am leaving out. When an outsider looks at a list like this, they just shake their heads: as we've all said, it's the frog in the slowly heating pot.

I hate for you that it's come to this, but life does go on after placement. There's no other checklist. Perhaps it would help you to make your own. But you should not have to live in fear and walk on eggshells. Better you do this before something happens that to wait for a crisis, believe me. Crisis hospitalization and placement was very, very difficult.

jfkoc · February 21

I would talk with your husband's neurologist immediately about a change in meds. Then I would get Plan B in place because finding a facility is not an easy task and it will be made more difficult if anger is an issue.

Please update us as to how you are doing.

Dogsaremylife · February 21

https://alzconnected.org/discussion/68250/re-arranging-the-furniture-in-my-head

It's hard to remember that our spouse has a terminal brain disease and it's the disease running their brain. If your marriage has been a difficult one (mine was for 38 years), then it's hard not to take these dark words/deeds personally. I have to believe this experience is a lesson in learning to face my own coming independence. You are not alone, and it is important to reach out to people and talk about it all. Keep strong.

ButterflyWings · February 21

Trigger warning:

1) I am posting articles HERE and HERE that may be upsetting or worse. I do not mean to fuel fears, or be disrespectful of our PWD LOs. But you asked if fear alone is enough to consider MC placement. I think it is. These articles are regarding PWDs accused of killing their spouses. It does happen.

I would never minimize the fears of someone facing verbal and emotional or mental abuse. That in itself, is stressful, harmful, and reduces your quality of life substantially. And those traits definitely "could" escalate to physical, even lethal abuse. And dementia puts that risk on steroids in my view. All bets are off, even if they seem calm most of the time. You just can't second guess dementia. It is not wrong to protect yourself while also protecting him, in a different setting. Caregivers matter too. There were a couple of years that I did not sleep in the same room as my DH as a precaution due to his demeanor when off his meds or in a UTI.

2)And 1/3 of family caregivers do not outlive their LOs, having nothing to do with violence, but stress. Sobering. Shocking. We learn here that the stress alone, the worry etc., can cause you to not survive your LO's dementia, and he would then likely be placed in a facility after you are gone, right? So...why let dementia take both of you? That is also discussed here on these boards. Here are a couple of stress tests off the Tam Cummings website (I do not work for nor get any referral fees from the good Dr!) . HERE is the Caregiver Burden Scale and HERE is the Caregiver Grief Inventory Tool.

Only you can decide, and neither caregiving at home nor MC is wrong. It just depends, and the choice is yours. Heavy burden, yes, but no one else is doing the heavy-lifting. You are. So they don't get a vote. It is your life.

ghphotog · February 21

I guarantee it will be the toughest decision you will probably ever have to make.

We were at a friends house before I placed my DW and my friends wife told him that she didn't think I'd make it another week. She could see it in my eyes even though I tried not to show how worn out I was.

It by far was the hardest decision for me as I was both incapable of making the decision to place her and incapable of not making the decision. Very very difficult for me but it was the right decision and once I knew I was going to place her that week, I knew in my heart I couldn't care for her one more week.

Possibly record some videos as I did so when the guilt or doubt that placement was the right decision you can refer back to the vidoes and remember just how dark and ugly dementia can be.

As far as your safety goes, you might not have a choice as there may come a time shortly when he will get physical or try to hurt you by throwing things that can. His dementia may not have an off switch to let him know this is wrong.

I wish you the best and I understand how hard this decision is.

M1 · February 21

@BW thanks very much for posting those links. I knew about the scales but frankly had never filled them out. Sobering. As are the articles. FWIW, I still score very high on both scales, despite the MC placement. I guess that's no surprise. It changes the burdens and the grief, but doesn't decrease them necessarily.

Iris L. · February 21

Do NOT say anything like, "I am placing you in memory care because you are too hard for me to handle." Instead, figure out something that is external to him, such as the doctor wants him to have specialized care. Harshedbuzz posted about what she said to her dad and he was happy with it. Or think of something else.

Iris

Caro_Lynne · February 21

https://alzconnected.org/discussion/comment/199121#Comment_199121

Butterfly truly a wake up call. On the flip side, there are many reports of the caregiver (usually the husband) killing the wife with dementia. The ones I've read about are usually in their 80's and either could not bear seeing their spouse this way or state that the wife asked them to please kill her. It is so sad that this even happens! The tragic outcome is that the husband/spouse ends up in dying in prison. I cannot even imagine!

Mint · February 21

Use to tell my coworkers there are no set of instructions telling me what to do. Understand how you feel. I didn’t and still don’t know what to do a-lot of times.

Butterfly I appreciate you sharing those scales, was interesting.

GiGi1963 · February 21

MRAHOPE, I am in the process of readmitting my husband into MC. My list includes not knowing me or any family members, unable to do anything on his own. Can't dress, read, find anything to eat, no activities besides wandering the house, moving things and washing his hands, beginning bathroom incontinence, gets angry at dog and throws pillows at her. Thinks I'm a man and has grabbed my wrists, kicked me, spit and lunges at me. The dog has bit him to protect me. I am fearful of his golf clubs and 5 lb weights in the bedroom. Still I brought him home. He was so emotional and for an instant looked like the man I love. Crazy, I know! This admittance I will stay away for a week or two so he can adjust and I can rest. My last chance to save my sanity.

harshedbuzz · February 22

@mrahope

I am sorry you are living in this state of hypervigilance and constant unease. I remember those days well. My mom was hell-bent on keeping dad home for a lot of reasons-- because she wanted credit for allowing him to die at home, because dad lost $360K of their nest egg and funds for care where not what she'd counted on and because she struggled to see the danger she was in.

We had made the house as safe as possible. I removed any side table light enough to be hurled, outlets were covered so he could throw lamps, decor was stowed away, extra chairs were secured in the garage. We also boxed up mom's cast iron pans and knives. I had long since taken away his golf clubs, gardening tools, and guns. He would sometimes grab and pinch leaving mom bruised and then say he didn't do it. She rolled with it until her started ideating a murder suicide scenario. He was in MCF within the week.

The nuclear option might be a good strategy for you. It was my Plan B. It might make sense to let you husband get into a dangerous rage and have him transported to an ER for a geri-psych admission. You can use this time to think uninterrupted by threats and making plans. Getting him properly medicated could give you options around a nicer MCF (he won't be admitted in his current state) or even bringing him home if that's what you want. The social worker on the psych unit can help you with placement and can arrange a direct admit so you don't have to drive him there yourself.

The other piece to this is that the stress with which you are living is terrible for your health. My mom was so depressed in this stage, despite me getting her a psych, talk therapy, support groups and meds, that she didn't stay on top of her own care. She was hospitalized twice in the weeks after we buried dad, the first was a BP and COPD crisis and the second was the sudden and permanent loss of vision in one eye from the BP issues. The result is she doesn't drive and is not enjoying the things she deferred until Stage 8. And with her loss of driving, I am not either.

HB

mrahope · February 22

I can't thank all of you enough for sharing your lived wisdom with me. We have put him on a waiting list for MC, which appears to be short. Meanwhile, I'm watching and waiting.

FWIW, our marriage actually was pretty good and we had a lot of fun together in our earlier years, The problem is that I'm so centered on trying to know how to cope day to day that it's hard to remember those times. Another part of the issue is that he always did have a temper, but knew it and got it under control quickly. That control seems to be slipping now. I've often wondered if he suffers from PTSD, also, because of serving as a leader in a student movement that turned violent when he was a young man (long before we met), and whether this heightens these difficulties.

@ButterflyWings Thanks so much for the news reports and the scales. Truly frightening, but also makes me feel like I am right to take all of these things seriously and act on them. When I was young, I was taught the saying, "If I am not for myself, who will be for me?" It seems to apply here.

Re-arranging the furniture in my head

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Use to tell my coworkers there are no set of instructions telling me what to do. Understand how you feel. I didn’t and still don’t know what to do a-lot of times.

Butterfly I appreciate you sharing those scales, was interesting.

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