Accusations and Constant Mistrust

[Redjune1]

My husband has PSP, diagnosed with it early 2022, before that he was diagnosed with MSA in 2021. Three weeks ago he went into a residential home as I couldn’t cope with him at home anymore and we have no close family living nearby. We did have carers in every morning to shower and dress him though.

The home he is now in is very nice and they do lots of activities with the residents. I thought he would be happy there although obviously he would rather be at home.

However, he is constantly accusing me of having an affair, stealing his money and trying to kill him. I understand that in his mind this is absolutely real and nothing will alter that. I try to reassure him and tell him that it’s not true but nothing works. I can only take so much of this before I feel like my head is exploding . It’s so upsetting and I feel like everything I do is wrong. Recently his sister and daughter came to visit him and they both were critical of the home and I just feel like saying well if you can do better then go ahead.

I know there’s nothing I can do but I feel so fed up

[Motts]

Redjune all I can say is that many folks on this site have experienced the very same issues you are going through and understand just how hard it is to deal with PSP and critical family members don't help the situation in the least. I know this is not a religious site but personally I prayed and bit my tongue a lot. Sending you hugs of encouragement... Granni B

[Redjune1 in reply to Motts]

Thank you

[easterncedar]

it’s an awful place you’re in, Redjune. While it’s true many people have had their loved ones develop such anger and paranoia as you describe, I can only imagine how painful it must be for you. You have done very well to find a decent place for your husband. That’s not easy! Perhaps you might discuss with a doctor whether medication for his anxiety might be helpful? In any case, time will inevitably change the situation, and meanwhile please make the effort to look after yourself. I’m sure you need some TLC right now. And yes, the critical relatives could very well be invited to do better!

[Redjune1 in reply to easterncedar]

I feel like I don’t know what to believe anymore. This morning he phoned me and said he had taken a lot of tablets and he was suicidal. I knew there was no way he could have saved tablets up but phoned the home to let them know. They said he has been ok and definitely hadn’t done that. He seems to save it all up for me

[easterncedar in reply to Redjune1]

Very worrisome, indeed, but it seems to me clear evidence that you have done the right thing, getting him a place with professional care. Hang on!

[OllieFisher1]

If the accusations are dominating the communication, then walk away. Honestly my father started accusing my Mother of the same shortly after he went into a home as well. He even was sure she was pregnant (telling me he had big news about Mum) etc. These thoughts come and go despite the fact that its biologically impossible (shes 70+). She just carried on with her visiting routine and chose to react in an amusing type of way. A year on, he still comes up with these accusations, but he now trusts the home (refers to it as his flat). I do think its a transitioning of environments (he thinks you have gotten ridden of him and why would that be). Everytime you are at the home, demonstrate how much trust and acceptance you have of his new environment, and if he is like my father, he will move on. Its not you, its the disease.

[Redjune1 in reply to OllieFisher1]

Thank you that gives me some hope.

[OllieFisher1 in reply to Redjune1]

I just want to add that if its possible, do not let others criticise the resthome......if he sees that others do not trust the new environment and the new people (resthome staff), it will make his delusions worse. Just relax, and have laughs and he will join in......have a nice piece of cake with him, or some food you both enjoy.

[Redjune1 in reply to OllieFisher1]

Yes that’s true. I will try to make sure it doesn’t happen again

[Hidden in reply to OllieFisher1]

Hi. Unfortunately I am in the same position as Redjune but my husband is still at home and in my experience, once he starts on his rants and accusations, there is no way he will be distracted! The rants can last up to 2 hours and he only stops when he is too tired to carry on. He is on meds to try and stop him having the rants, which will hopefully be reviewed when his assigned hospice nurse returns from holiday this week, but till then all I can do is try to switch off and not respond to his accusations. This condition is breaking both us and our children☹️

[Redjune1 in reply to Hidden]

I agree PennyJack it absolutely destroys you and your relationships. Can you tell me what medication your husband is on to help with the rants? Mine is on Sertraline but it doesn’t appear to be working

[Hidden in reply to Redjune1]

He is currently on 100mg of Quetiopine daily but as they are still in the process of deciding the right level for him, that dose might change. When he went on the tablets, he asked what they were for. We told him that it was heart medication but he insisted on seeing the box! Luckily all it said was it may cause drowsiness. He focused fully on that but now he has periods when he refuses to take the tablets as they make him sleep too much! Nothing is ever straightforward is it? Hope you get sorted soon Redjune1 🤞

[OllieFisher1 in reply to Hidden]

Yeah..its difficult. I took care of my Dad between a hospital discharge and authorisation to a resthome. He had delusions of being set up by us. It was completely irrational, and nothing could be done. Drs did have him on quetiapine, but it made little difference and he actually improved coming off it. I was exhausted to be honest. Everyones lives improved once he went into a home. Nothing is perfect, but everyone is better even Dad.

[45purple]

Sending hugs. As we all know it’s the illness but for the carer it’s not easy and I myself have said what you said, If you can do better get on with it. Unless you are dealing with it 24-7 nobody knows what it’s like to live the life we are living. Just last night Karol made these noises all evening when watching telly roaring at times and when I looked at him and said why does he do it the answer was I don’t know. You know your husband is safe and he will adjust and to h—l with what anyone else says. Stay strong 💜💜

[David750]

I am so sorry to learn of the most difficult position you are in Redjune 1. I admire what you are doing in the most difficult of circumstances. Life is more difficult when you are looking after your husband at arms length. When my wife was in a home for short term respite, the staff experienced none on the problems/difficulties I experienced at home. Discussing this with staff they said it was quite common. The residents can get away with more with their spouses than with staff. You can rest assured you husband will be fine, though PSP does distort reality causing him to make these outlandish claims. Typical that he should say different things to other family members too. It is the PSP that is changing your husband. 🙏

[Goodact]

I am in Western Australia and my partners immediate family rarely see him and have called in six weeks ago and were shocked so we are going to court to decide whether I have been given adequate care or if he should be in a home. The slurred speech often makes people say dementia but he is sharp as. We have had to engage a solicitor just to keep him in his own home the ignorance about this disease is heartbreaking

[Redjune1 in reply to Goodact]

Yes that’s true. It’s so disappointing when you see a medical professional and they know less about PSP than I do.

[daddyt]

Hugs and prayers

Tim

[Abrecheisen53]

Redjune, I am so sorry that you have to deal with all this. PSP is primarily the motoric variation of FTD, that's what my husband John had. We donated his brain to science and learned he had 100% PSP. That said, there is also a behavior variant and one that attacks speech. If at the end, if you decide to donate his brain for research, they may find that your husband has some behavior variant thrown into the mix as well. Some even have Alzheimer aspects as well. It is a cruel, cruel disease no matter what.

Unfortunately, your relatives are simply displaying their ignorance as so many in the medical community often do. Please look up CurePSP.org and request the pamphlets they offer to hand out to medical professionals, caregivers, etc. I always kept one in our 'go' bag for the emergency room staff so they could better understand what John had. Also, there is an organization called AFTD.org, the association for frontotemporal degeneration.

All of us who have walked the walk know what you are going through. Please do not second guess your decision as I am sure it was made with love for all involved.

Wishing you strength and courage, Alice

[Redjune1 in reply to Abrecheisen53]

Thank you for your reply Alice, it was really helpful. I’m going to look up the organisations that you mentioned

[Millidog]

Hi RedJune, Quite common behaviour I am afraid. You can find useful information about this on the PSPA website Best wishes Milli dog

[LFG3]

Dear Redjune1,

I too am sorry you are having the behavioral problems with your husband. I think I read above he is taking Sertraline and it is not working. Is it possible the dose needs to be higher and is he given it first thing every morning? My husband takes 100mgs and it has completely changed him back to the sweet, loving man I married. Our Dr told me there may come a time when we need to increase the dose to 150mgs, but so far it's working perfectly. Just a thought. ❤️

[Redjune1 in reply to LFG3]

Phil was only on 10mg to start with and when he started making the accusations and being aggressive they doubled the dose. This was at the end of June. I was told it could be increased further if necessary. From what you have said it can be increased a lot more. He’s being seen by the Neuro psychiatrist on Monday so maybe she will decide to increase it further?