No it isn't my husband who has it, it is ME and he basically doesn't accept it This site seems to have only good people who care are for someone
I have been diagnosed with PSP after 4 years of falls and argument about my speech. My other half is an ok man but for years he has refused to go anywhere he hates traveling unless it is to get cigaretts or what ever he want. He says I don'/t use nouns and yells at me.. Yes, I find it difficult to find words sometimes . I point and say that, etc. I can't find the words and then he yells at me but says he doesn't yell.... my carer says other wise.
I am afraid. I ALWAYS thought he would go first with his drinking and smoking and small strokes.
2 years of not leaving the house unless a friend takes me . My doctor knows but says he can't do anything unless he comes to him ,no chance what should I do
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rocklady73
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rocklady75, if you haven't already done so, please phone or email the PSP Association on 0300 0110 122 / helpline@pspassociation.org.uk they should be able to help with your issue; if not they will tell you.
rocklady75....It is awful how this horrible disease affects every aspect of life. My husband is progressing with PSP and looking back I could see changes in him 5 years ago.....A once caring, gentle man now cant even look at me, he speaks to me like I am something he has stood in. I do lose my temper as sometimes as he can be extremely cruel. All I do is care for him and try to keep him safe. he is 13 stone yet I manage to hold him and help him in every way in the bathroom. I still work 4 days a week from home and never get a break as it is no longer safe for him to stay with family ie navigating stairs etc. It must be even harder for you as you are the one suffering with this vile thing and not getting the support from your husband. As the reply from MullerRice says....reach out to PSP Ass as soon as possible. I hope you get the support and care you rightfully deserve.
That sounds so hard for you. Is there a local charity who offers befriending who can come and visit you in your home just to sit and chat with you? That would give you someone to talk to and give your husband a break. And perhaps they might even have conversations with your husband too and give him some variety? It’s possible that he is struggling psychologically but it may also be that he is in the early stages of some form of dementia that is affecting his behaviour without him being aware. Bringing others into the home might help with either situation.
My husband goes to the pub5 nights a week He is not lacking in company or variety but I do thinnk he is having a form of dementia since his last stroke He has had 5 mini strokes and two larger ones but he was out of hospital in 3 day for the first one anda weeek for the second
Does your husband have stroke follow up appointments with the GP? If not you could ask the GP to invite him to a stroke follow up appointment? It is NICE guidance that people who have a stroke should be checked for cognitive impact.
Oh I do feel for you. I too am a PSP sufferer and my husband and I do quarrel occasionally but I honestly think he is more afraid of this condition than I am, and overall he does what he can - stepping in for the carer when necessary. I agree you could do with speaking to someone as you’ll probably be feeling very isolated
Dear Rocklady73, If your husband is having mini-strokes, he certainly could be developing a dementia. But even without that, he sounds MOST difficult. I am wondering if you have children and / or close friends to whom you talk and who support you?
As other have said, I do hope that the PSP association can find someone to support you--but it depends, I think, on whether or not they have the resources where you live.
Has your doctor referred you to social services, to occupational therapy, and or a physio? It sounds like your husband is quite abusive at times, and I wonder if he is dementing, if you could be at risk in the future? Or perhaps I am overstating this.
I am now retired but for many years, I worked as a social worker and then in Old Age Psychiatry as a Family Therapist and we would certainly have been most concerned if you had been referred to us and would have been looking at how best to keep you safe.
It is so good that you are well enough to reach out. Do keep contacting us. PSP is a difficult illness and you need all the support you can get to help you manage the time ahead. Eleanor
You are right most people here are generally carers of people with PSP or CBD, as in my Mum case by the time she was diagnosed she couldn’t use a computer anymore.
You’ve had some good advice from the above on contacting the PSP to get you some support in dealing with your husband.
Are these new problems since your diagnosis or has your husband always been this way and he’s just frustrating you more since your diagnosis? A diagnosis of this nature can make a persons view of life very different?
Does your husband have any support in dealing with his emotions on your diagnosis?
As a carer/family member you find yourself sometimes spiralling out of control trying to do everything you can and not feel sorry for yourself - which sometimes can come out as snappy/shouty at the person you are caring for as your life has changed as well as theirs. If you are a smoker and drinker then you may turn more to them to shut out the thing you don’t want to face the most?
It might be worth getting in touch with your local hospice, they generally offer counselling and support services as well as the PSPA as it sounds to me that you both might need some more support to help you deal with the emotions that come with this journey.
If you want to get out more could you pay for a carer to take you? There are services in most areas that will do this, some at a cost only basis with volunteers depending on where you are?
A lot of people don’t want to face their problems, it might be the case with your husband. Hope you find a way forward.
As if PSP was not horrible enough, you are being mistreated by your husband. I really feel for you and pray you get help from people and professionals who care. They should also speak to him. He may or may not listen.
your post really made me sad. Not only are you coping with this horrible condition your husband seems, for what ever reason, very uncaring towards you. I am a retired social worker and I feel worried about your safety. Please reach out for support from the PSP association. And contact your doctor for a referral to social services for help for both you and your husband. You’re in my thoughts. Take care. Vie
it sounds like you need respite from him. Maybe suggest to your doctor that could he/she at least think of a way to help you. Maybe someone more specialised than a carer (gerontologist?) could call in to see you but in fact could quietly assess what is happening to your husband and its effect on you. Keep trying outlets (PSP association, older age groups, etc. sometimes something turns up that will help. In the meantime see if you can get respite somehow. I don’t live in the UK so I’m presuming there are respite facilities. I so hope you get some help with this. X
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