Do I Have to Accept His Version of Reality?
My DH was recently diagnosed with Alzheimer's. His mother passed away 30 years ago after a long difficult battle with dementia, and he is depressed about his diagnosis given his previous involvement in his mother's care. He was managing pretty well with the original 2024 diagnosis of mild cognitive impairment, but this recent diagnosis has thrown him for a loop. He is still highly functioning in general with his ADLs, but struggles a lot with anxiety and depression.
One of the biggest issues that I'm now dealing with is his unfounded mistrust in his siblings. This paranoia seemed to coincide with his Alz diagnosis, so I'm sure that it stirred strong emotions; however, his memory is not reliable and he is attributing things to his family that are just not true. He believes that no one except himself really helped to care for his mother, and he thinks that they mocked her endlessly during her illness. While it's true that his siblings lived out of state and did not visit his mother as much as he did since we were local, I was there through this era and I know how much they helped throughout the process. There was no mocking and there was a strong will to help as much as they could. They visited frequently, coordinated most of the in-home care that was hired, and also were more involved than my husband in their mother's ultimate placement in memory care.
I'm at my wit's end now with his daily tirades about his siblings and how he feels that they are currently making fun of him. They really want to see him and have even offered to arrange a trip to our city so that we can all get together. I keep putting them off for various reasons and don't have the heart to tell them that he really does not want to see them. His siblings have all come directly to me as well to offer support for my own efforts, which I really appreciate. I know that "you can't reason with someone whose reasoner is broken" but I get sucked into arguments every day (especially late at night) where I try to get him to understand. Should I just let it be and agree with him? I feel like I need his family's support for myself in addition to "setting the record straight". I also think that there may be something else surfacing from his childhood that could be causing this, but may never be able to figure that out!
Comments
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just go ahead and invite them to come. Just because he rants to you doesn’t mean he wouldn’t ‘showtime’ for them. Please allow them to support you through this.
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Hi @brupt30
Share any resources you’ve found on dementia and Alz with the siblings. The Alzheimer’s Association has good info as well as the book The 36-Hour Day. There are also healthcare professionals online who have good tools and videos that explain behaviors that you are seeing. Tam Cummings has an assessment tool that lists behaviors that you will see in the different stages of the disease:
Other health professionals you and the siblings can check out are Teepa Snow, Natalie Edmonds, and Camille Sinclair. Here is a Teepa Snow video about paranoia:
If it was up to me, I would let the siblings know about his paranoia and anger issues - I am sure he is angry with what’s happening to him and he’s taking it out on others. Trying to reason with him is not going to work. As I’ve learned from others on this forum: You cannot reason with someone whose reasoner is broken.
What I’ve also learned is that things are better for me and my DH when I meet him in his reality and not waste my time trying to I convince him of my reality. Saying “I’m sorry” or “that’s too bad that happened” helps deflate the strong emotions and anger. If his siblings can agree they could use this type of approach then maybe a visit would be good. I agree withy @Quilting brings calm - you need their support!
Best wishes to you.
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delusions and confabulations are common in dementia. Arguing with him does no good. He will never understand or agree with you. I would sympathize with him and change the subject. I would explain to his siblings what’s going on and invite them to come visit. Keep the visits short.
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@brupt30
I'm sorry you are dealing with this and that it risks estrangement from his siblings who are decent people and potentially support for you both. Ugh.
FWIW, in the middle stages of dementia my dad had a lot of conflated memories as you are describing. They tended to fall into 2 categories— either accusing me of the passed deeds of his horrible sister and my very troubled one— or— recalling events in such a way that he was the hero or savior of all situations. The latter was cringe-inducing in that it sounded so much like a second grader's playground boast.
What I found helpful, was to ignore the first kind of confabulation. I knew the reality as I'd been there. I did, however, spare my son after dad had told him about the time I "left the kids in a bar to go off with some random dude and he got a call from the cops/bartender to come get them". For the second kind, I met him where he was by validating his feelings. For you that might look like giving him validation that he'd been a great help to his mom when she needed him and ignoring the rest. It was if he needed to remind us he'd once been "important" at a time when he was having more and more autonomy taken from him.
HB1 -
Talk to your husband’s neurologist about these behaviors. A geriatric psychiatrist is well versed in medication for these behaviors. I agree with others that I would explain what is going on with his siblings if they come to visit and give them suggestions on how to handle it if the visit gets out of control. They need to understand that in his mind, these accusations are the truth. They will not be able to convince him otherwise. They can’t argue with him.
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I have gone through and still am (occasionally) about siblings. We increased my husbands anti depressant which has helped some. I recently sent an email to my husbands siblings explaining his decline. One brother lives 2 hours away. The others much further. This particular brother does call occasionally, but we have been estranged from his wife for 10 years so we have not seen them. The same day I sent the email, my BIL text me and asked if they could come for a visit the following week. YES! But I didn’t tell my husband because his paranoia on why they would be coming would be off the charts. So we planned it as a surprise. It was wonderful! We all had such an enjoyable 3 hour visit. They are planning on coming again in the next few months.
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Thank you all so much for your kind comments. This is all fairly new to me and I'm trying to get better at meeting him where he is. The hardest part for me is separating myself from his emotions and mood swings, after trusting his judgement for my entire adult life.
My DH does have lucid moments where he feels good about his siblings, but then the dark thoughts take over again. He definitely showtimes when he is on the phone with them though, so I suspect that a surprise visit may work well. There is a lot of anticipatory anxiety and the less "heads up" given the better. We have increased his antidepressant as well which does seem to be helping.
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Oh my gosh, I think that I would have a difficult time recovering from the "random dude" comments!!
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Do you really have to accept his version of reality? Yes…and no.
Entering their world was initially very difficult for me. I had such a hard time imagining I was lying to a person I had never lied to. But, once I realized that I had to enter and accept her world…with her in the moment…and not the rest of it, I got in pretty good swing with it. It means that you can agree with them while still doing exactly what you need to do in order to provide the care and love you can and get the support you need at the same time. Remember, you can't just have the normal back and forth with your DH anymore and you cannot live the rest of your caregiving life giving in to his delusions or bad decision-making either. So, what does that look like?
In this case, I'd say something like, "I hear you. That must have been hard to deal with all that care. I'm sorry that's been so hard for you."
Then, I'd go do what I needed to get support, including inviting the siblings and just making it happen that you need to be happen. You are the captain now and you're the only one that can take care of both of you.
You can really agree with your LO without actually agreeing with them. There is no point in trying to change his mind, but you can control yours and do what you need.
I found it vital for me to make that switch in my thinking. We'd always been a partnership and me taking over everything was overwhelming, but it was absolutely necessary.
Hugs!
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Great advice; thank you! I'm still in the middle of making that switch…
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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