Tales from the texts...MC and guilt tripping.

mrahope · May 11

I'm just putting this out there to see if anyone has had a different/better way to deal with the situation I am in. As background, my DH entered MC about three weeks ago. We have been told not to visit for the first month or so. He seems (from the reports my DS and I are getting from MC staff) to be doing quite well, but his texts paint a different picture.

He was allowed to keep his phone since the MC feels he's "high functioning". It was his unpredictable rages (screaming and throwing things) and his attempt to leave town with no destination and no medications that eventually brought him to MC.

Each text seems designed to make me feel ever more guilty and depressed. He's said he "feels like he's in a concentration camp" and that "You're woven into my heart and now you won't even talk to me", etc. This is interspersed with all caps requests for various items that I need to bring him, complaints that he no longer has access to his bank account, etc. Almost all of these have arrived in the wee small hours and awakened me until I learned to set my phone to "do not disturb". Have any here experienced similar behaviors? I've been told not to respond so I don't but it's still making me feel horrible. What have you done in similar situations? And feedback will be appreciated…

M1 · May 11

it may seem harsh, but i would have him lose the phone. It is serving no purpose but to upset you. Honestly, do you see any use for it going forward?

harshedbuzz · May 11

We had similar behavior from dad in the late middle/later stages— personality persists well into the latest stages of the disease. He once told me that mom and I were making him a miserable prisoner and he was going to make sure we were as unhappy as he was.

When he went into MC, he couldn't use his phone, but he was still very conversational and nasty. We didn't avoid him as his facility doesn't suggest it. I did find dad was with it enough to "behave" in the public areas of the MCF, so we limited visits to the lounge, dining room or a hallway alcove for almost a month until he settled in. He did try to lure mom away to his room where he could excoriate her privately, so we visited together, and I hustled her out as soon as he started.

Listening to his rants serves no purpose. It doesn't validate his feelings or help him process big emotions. It's not going to change your mind about where he is cared for. It only serves to hurt you, so there is no reason to accept the message.

HB

ThisLife · May 11

I had the same scenario with my DH once I put him in MC (9/2023.) I did stay away for a month. first to get some rest and then go out of town to visit friends.

I was advised to disappear the phone which I delayed, but it would have been a good idea. I didn't return it after a stay in a psych facility in February. He didn't really notice. His memory for events and items was a few minutes at most. Prior to this I blocked his number most of the time.

Phone calls and visits were about how awful it was there, how he was imprisoned, I needed to get him out, why was he there, and when was he leaving. No deflection worked. No answer satisfied. I kept to the common areas where he could keep the volume and vitriol subdued for about 30 minutes. Then for everyone's safety I had to leave.

He was having a great time in MC when I wasn't there. I have pictures and videos staff sent me and others on the FB page. He was always involved in an activity whenever I arrived.

I concluded I was the lightning rod for his anger and frustration. I was the fixer who was supposed to take care of everything. Only the everything, anger and frustration were the deterioration of his brain and his inability to comprehend what was happening. He only "remembered" his unhappiness when I was present. I was present once a week which served no good purpose for either of us other than I would have experienced more guilt if I didn't go.

mrahope · May 11

Thanks so much, everyone. I feel as though I'm not alone anymore. @M1, you are giving the same advice as my DS (who is now DH's POA, and could ask the MC to do this). My only qualm about it is that our daughter lives about 250 miles away from us and this is her only contact with DH. And interestingly, in talking to DD this morning, DH had mentioned how much he was enjoying conversation and interaction with others at the facility! @harshedbuzz , I think our PWD were twins separated at birth! Except for the alcohol issues, DH has behaved in a remarkably similar fashion. Again, I appreciate your willingness to share. It tells me that change is unlikely as far as his personality goes as the disease progresses. @ThisLife, it sounds like I may never enjoy visits with DH, if your experience is any guide. Pretty sad, but also pretty logical…

Belle · May 11

@mrahope Ask the facility if they are willing to let your DD talk to your DH using a facility phone by arranging set times she can call her dad. Maybe you or your DS can schedule a time to be there with your phones for those calls if the facility won't help out. My DH bombarded me with frantic calls when he was in the hospital last year (when I was home to sleep and take care of the dogs), eventually I had to block his calls after a certain time so I understand how stressful those calls/texts can be.

M1 · May 11

Mra, it's taken two years and some serious disease progression for me to be able to visit easily with my partner, but we're finally mostly there. i could not visit solo for the entire first year. So don't give up, but it may take a long, long time.

And I would completely agree that your daughter can talk to her dad at prearranged times on a facility phone or tablet, it doesn't have to be on his cell phone. That would probably work better for everyone.

harshedbuzz · May 11

@mrahope said: I think our PWD were twins separated at birth! Except for the alcohol issues, DH has behaved in a remarkably similar fashion. Again, I appreciate your willingness to share. It tells me that change is unlikely as far as his personality goes as the disease progresses.

You never know. I never had an easy relationship with dad. I wasn't his favorite; that would be my sister who died in her early 30s. She was born after he was discharged from the army, and she resembled him in looks and temperament. Her death started the drinking and spiral that resulted in others seeing the behavior I always saw which was weirdly validating.

Dad's geripsych felt he likely had undiagnosed bipolar disorder. I mention this because onset is often around puberty and his very old aunties would always gush about what a sweet little boy he had been. His mom was the oldest of 7, so he spent a lot of time with these ladies when they were teens and tweens after his mom was widowed and moved back home.

In the last couple weeks of dad's life, he seemed to lose a lot of his edginess and became a warm and gentle soul. I saw a side of him I'd only ever heard about. This wasn't what I expected at all, and I can't say you can look forward to the same but it can happen.

HB

sandwichone123 · May 11

Until you can get the phone removed, you can set his ringtone on your phone to silent, no vibration so you don't have to silence your own phone for everyone. If you feel he needs to keep the phone to call his daughter, you can remove your listing from his contacts. I went through and removed all the contacts from my dh's phone that I didn't think he needed independent contact with—all but close family and close friends that had proved supportive. I also removed the Facebook, with sadness, as that was his only contact with family.

M1 · May 11

These things take on enormous emotional significance. One thing that was very hard for me to do was to discontinue her cell phone account. She'd had the same number for thirty plus years, almost as long as there had ever been cell phones.

GothicGremlin · May 11

My experiences weren't the same as yours, but they were similar.

When my sister first went into memory care she had her phone with her. It was a source of stress and frustration for her. She knew how to use it in the beginning, but she often forgot some of the particulars, like how to text.

Also, the move to memory care wasn't easy. She told me she felt like she was being punished, and if I moved her out she promised to be good. How horrible did I feel? You probably know.

Within a few weeks she calmed down from the move, but the phone was still a problem. I ended up telling her that it was broken and that I needed to take it to the Apple store to get repaired. She accepted that, and the phone went away. When she'd ask about it, I'd explain that the problem was more extensive than we realized, and it was still at the shop. I never brought up the phone on my own. We went through that for awhile, and she eventually forgot all about the phone. Her memory care had an office phone that residents could use, so we did that.

I remember thinking that there was no way she was going to forget about her phone, given that she always had her phone with her. But once the phone had been away from her for awhile, it was as if she'd never had one.

upstateAnn · May 12

get you DH a flip phone without texting.

Dio · May 14

https://alzconnected.org/discussion/comment/208823#Comment_208823

You just spoke my words. 😥

Tales from the texts...MC and guilt tripping.

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