I wonder if anyone has ideas how to cope with what is clear to me now is MS dementia and aggression.
My wife became secondary progressive maybe 2 years ago, and has gone downhill rapidly. We are in our early fifties. She is now navigating the transition to permanently in wheelchair, and the difficulties even of transferring to toilet etc. She also has end-stage kidney failure, which is likely what will end her life within a few years. It’s really grim, and an absolute horror-show. Obviously she is very depressed and frustrated, I do my best to support her but I’m at my wits end too. That frustration boils over into lashing out at me and others, we are very isolated as she has fallen out with most of our friends, and with her brother. No children, fortunately.
The brother situation…..she’s correct that he let her down badly, but the level of anger is extreme. At one point, she was spending several hours a day for months doing little else than sending him ranty abusive emails and then brooding and scrolling through what she’d written.
I am now the target of the aggression, as her fulltime 24/7 carer. I changed to home working job some years ago, partly because the oncoming care needs were obvious , and then had to completely retire a year ago, as her health worsened. Along with helping her physically, I now spend hours a day listening to tirades about my shortcomings. Also those of my mother and sister for no really good reason as she has no contact with them, and who I speak to on the phone maybe once or twice a week, which is apparently “abandoning my paraplegic wife”. And more recently Wife throwing objects including drinking glasses. Some have hit me in the face. Also, punching, kicking me in the face when in wheelchair while I adjust footplates, although obviously as she is very weak she hasn’t physically hurt me much.
She’s now told me that she never loved me, I’m a waste of space and stupid (I have a PhD) and she wants to divorce me. But I don’t want to leave it like this, not after thirty years of marriage. Whether she will carry through I just don’t know.
But the reason I’m writing today is a new crisis. Over past month, she has now received her second warning letter for being verbally abusive to NHS physio and OT department. They will no longer attend home or speak to her on the phone. She seems to have no insight into her own mental state. Her version is that she is going to sue NHS physio dept for libel, which is frankly nonsense, but she’s been getting me to phone around solicitors to take the case (they won’t). And of course I am the villain again for not being enthusiastic enough for that, and have had hours of being shouted at and belittled over the weekend for being weak and unsupportive.
Without continual support from the NHS for her many and worsening physical issues, the situation at home will continue to get harder and less safe.
I have managed to get her to accept a morning carer (past three months), for dressing and showering, but I’m worried that she will lash out and then we will lose the agency. She’s already had a couple of minor verbal-only incidents with a couple of carers she’s not keen on. Actually she had a fair point on both those occasions, but it’s on eggshells.
She clearly has significant dementia whatever we call it. She is unable to write coherent emails for daily life on her own, as they degenerate into stream of consciousness rambles. I have to help her draft and re-draft them for her. She sometimes does the online food shopping, but often forgets half the ingredients or just fails to checkout the order, and then of course blames me. She refuses to go to bed before 2- 3am, neither of us sleep much at night, although she sleeps much of the day. It’s already two years since this extremely smart and motivated doctor who graduated from Cambridge became unable to find more than three-letter words in Boggle word game. Now increasingly she accuses me of making up words that don’t exist, in normal conversation, to gaslight her. A few days ago, the argument was when she asked what the weather was, and I replied that the sun wasn’t shining, so she told me I was talking nonsense and a retard. Turns out she thought I was claiming that the million-mile wide ball of fire had just stopped emitting light. We “worked out” that I had to say that the clouds had gone in front of the sun, and she insisted I apologise for “lying about the sun”. She wouldn’t have struggled like that even a month or two ago, so this is going quite fast now.
So here we are. The NHS as a whole seem to have no interest in considering dementia, despite the obvious large lesions on her brain MRI. Or what the state at home is, or whether I am at risk (possibly - a couple of times while I was driving she has threatened to stab me in the neck, although she didn’t have a knife). Without that, I can’t trigger any of the normal protections of society for either of us.
I don’t know how to keep the plates spinning much longer.