I have written about this many times on this forum but it is now becoming a real problem. Basically my husband can be very aggressive both verbally and physically towards me and it hurts as I feel I am doing my very best to care for him. Luckily he does not behave in the same way to the carers, or else we would be in trouble.
Whenever I have mentioned his behaviour to my GP or the social worker, I am generally told, "you should not have to put up with that sort of behaviour", well too right I shouldn't, but what do I do! When he was first diagnosed his consultant could not say whether aggressiveness was part of the conditioned - another one of those "unknowns" of PSP
He has had something called amypraline (?) and setraline, neither have helped much.
I dread getting up in the mornings never knowing what the day is going to bring.
dorothy-thompson
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dorothy-thompson
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hi dorothy well first of all i would try some shock tactics \\ if he starts abusing you again tell him this is the last time you will do this to me\ just remind him what you do for him \ he must know what he is doing otherwise he would do it to the carers as well as yourself\\ i am very sorry for you to have to put up with this as i know its not easy being a carer and a wi8fe but i think you have to stand up- for yourself i know it would be hard and perhaps he will be reminded of which side hes bread is buttered \\ because we i say we because i have psp as well are not stupid and do know in our mind what is going on its just the other things that we cannot help \\ sorry if this is not much help to you but i have read some of your writings before so its not the first time \\worth a try]] peter jones queensland australia\ psp sufferer
Thank you peterjones for you reply. I do sometimes say all those things to him, but to no avail, he just hurls more abuse at me and we generally end up in an angry and cruel shouting match. I am and always have been the one to back down - now even more so because of his condition. I usually end up saying to myself that he cannot help it and its up to me to be the "grown-up".
We are both locked into this terrible disease but I can't help thinking that somehow my husband blames me for his condition, as he keeps on telling me, he always kept himself fit and active, that he was always the breadwinner, that he took the lead in everything and I never did anything! Oh - apart from helping to bring up three sons, go to work etc etc.
But today has been the last and final straw, he bit me!
I was helping him to get into bed for his rest, easing him up the bed onto his pillow as he cannot do it easily without my help, I unfortunately hurt his neck, and so he bit me.
But thank you again for your words of support and thank you for allowing me my rant..
He may resent the fact that he has PSP and you don't. Early on in PSP I told my wife very honestly "Sharyn, If I could take that PSP off of you and put it on me I'd do it in a heartbeat". I meant it.
My hubby went through that too....would attempt to bite me or make the biting movement in the air over really small things. Then it would pass....he would say sorry and that he loves me. I really know it is the disease with one part frustration. He would call me names too....i would laugh them off and hig him. I started treating him like an emotionally dusturbed young child...it helps.....or maybe he is just over tgat stage of his psp. Oh....he is far from never angry....but 100 times better. Ignore them the best you can honey. I know it is so hard!
I know exactly how you are feeling, as you may see in my past blogs. Although Tony has CBD he has in the past had very agressive behaviours, which were controlled by antidepressants. Then a year later we were back to more agression with him still on the antidepressants, even being agressive with the carers and carring on through the night. I now feel that this time it was due to his loss of mobility and being unable to communicate that he was in pain as an opiate patch as reduced his agression dramatically.
Tony would cry sometimes as he felt that things were out of his control and not knowing what was going to happen in the future, also I think he was trying to make me a stronger person as he knew he would not be able to look after himself in the future.
Have you spoken to the PSP nurse specialist? It may be worth changing the medication if it is not working. I contacted the Dementia nurse in our area who was a great help as she was able to have a discussion about our feelings and ways of managing the behaviour, she did think that I was depressed but after talking to my GP he thought not, ask your GP if there is anyone that may help.
Sadly I felt that could no longer look after Tony at home even with carers coming in x4 a day, I became depressed as I felt that I should be able to cope, antidepressants have helped me. Tony is now in a nursing home but that comes with stress too.
I think that when things get bad you begin the grieving process as you realise that so much is changing with both your lives, I hope that you are able to find some help asap, you can only be superwoman for so long.
you and your husband sound exactly like me and Tom - a very fit, active man who could take on anything and achieve success, suddenly frustrated and unable to accept what life had dealt him. And yes, it was as if he blamed me for his illness, but refused to accept that he could be failing, in fact I was menopausal at the time and he had me convinced that it was me who was losing my marbles! The doctor prescribed me with antidepressants but that just made me less inclined to step in to stop his more unwise decisions. I don't know how we got through those years, but I did realize fairly quickly that there was no point in arguing as however angry I was, he was always worse, so I didn't go there, but spent lots of time crying in pent-up frustration. Things improved a little when he stopped taking the levadopa-based drugs the consultant insisted he take even though accepting he didn't have Parkinsons. Things improved a bit more when he stopped taking all other medications except painkillers. I was finally able to say to him, "its not me, its you, so I am going to take control". I was also lucky enough to get him referred to a local hospice who helped him see that I was a major reason why he still had a quality of life, and also helped me to come to terms with my grieving for the loss of my husband as I knew him and dealing with our relationship as it stands. I think this is the key, you need someone else to tell him - he will listen to an outsider much easier than he will ever listen to you. Please see if you can find a local hospice, they work wonders! Its no good people telling you what you should and should not have to put up with, as you say, we are stuck with it because we don't want our loved one to suffer, can see that its the illness that has changed them, and so we will be with them come what may. What we need is someone to call on, for support, advice, and as a safety net. Someone who isn't emotionally involved and can step in when we are at out wits end. For me, this was the hospice, I hope you find what you need too. I will think strong and positive thoughts for you,
Tough situation. Perhaps you could gently say that you can't handle the abusive treatment and if it continues he'll have to go into a care facility. Sometimes scare tactics are the only way out. The pressures of caregiver are enough for anyone to bear and there is no need for abusive behaviour to be added to the mix.
How about a series of questions:
1. Do you think I'm doing my best to give you good care?
2. What can I do better in the way of care?
3. Would you rather you only recieve care from a professional caregiver?
4. Do you resent the fact that you have PSP and I don't?
5. Would you rather be in a care facility?
6. Do you realize you are abusive toward me at times?
7. Do you think your abusiveness toward me makes me want to love you and give you good care?
"Now (husbands-name) if you think I'm doing my best in giving you good care and you don't want a full-time professional caregiver and you don't want to go into a care facility, why are you abusive toward me?"
I hope this sounds reasonable from a womans perspective. I'm only a man so I may not see that perspective in this suggestion.
We have communicated on this site before about aggressiveness. My husband in the early stages of psp was very verbally aggressive and unreasonable most of the time. We didn't know then that he had psp. His decision making was awful and whenever I queried what he was doing or not doing he would get very angry and kept threatening to leave. Sadly this phase of the illness cost us a great deal of our savings as he got himself into a financial mess and then he lost his job. When he was being aggressive I tried to walk away until he had calmed down. Emotionally it was so draining and hurtful. It also makes one feel very isolated and guilty. Sorry, this is no answer to your problem. As the disease has progressed the aggression has become much less, but I've noticed that if my husband is in pain or constipated ( this has been quite a problem recently)he becomes verbally aggressive. I think also the aggression now is due in part to frustration, his speech is now very quiet and slurred.
I'm so sorry to hear of what is happening to you and your husband over and above the problems that come about because of psp.
Ann's suggestion about contacting your local hospice is really worthwhile. My husband has been going to our local hospice for the last 5 weeks and it has made such a difference to his mood. The staff have been excellent in helping to relieve the physical problems and they have also addressed some of the psychological issues which has helped us as a couple to be able to talk about the future.
Thank you all for your are replies, it is comforting and re-assuring to know that our situation is not unique and we are not alone, thank you.
I can pick out lots of things in your replies that apply to our situation, the anger and frustration in the early stages of the disease, the apparent blaming of me for it, the constipation, oh the constipation and the interminable trips to the toilet! - prune juice seems to have sorted that though. Oddly enough my husband has never mentioned pain before, until this morning that is when he told me his knees were hurting him. He will not take any sort of pain relief so I will have to look for an alternative remedy.
I did write to our local hospice and enquire about respite care but was told that they were unable to help me and that we should perhaps look to a care/nursing home for this. Perhaps I will contact them again and try and explain our situation better. The local PSP nurse in the South East is very approachable and she will be my next call.
this is attacking the brain, probably more so as it progresses, and so the brain is affected more in every way. I'm not excusing or justifying the behavior by any means, they just have no real control of it...Lets just put it this way, If someone who had a short fuse before this happened to them and had trouble reconizing that and responded to the problem agressivly or had a hard time refrainning from responding agressivly befor the PSP, Then they most definately won't be able to now, Because this attacks the brain and almost all aspects of thinking is impared, as well as with how they percive things as well. No one should have to put up with abuse, Verbal or other wise, So it's up to you or the care giver to decide when enough is enough and take approprate course of action for all parties involved.
We do not have aggression with my mom however I work with teenager with fas and when they treat us like that we tell them we will leave the room and only help once they are ready to stop mean behaviours. The carers that are consistent with this soon have way less aggressive behaviours. This takes time so be consistent and patient, but worth a try.
I go through the same issues with my husband. Just remember it's the disease. I too have mentioned that he can't continue with that behavior or he won't be able to stay home. That gets him to zoom into focus.
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