hi there, I am new to this group ..and looking for help in understanding this disease..
My husband was diagnosed October 2022..
He has the typical symptoms of slow balance, slurred speech, chocking/coughing episodes..
But the main problem that I am dealing with is his behaviour towards me.. it’s as though he hates me(although I’m sure he doesn’t).
I have to do everything.. from dealing with work men as he doesn’t want to engage with them, deal with bills etc and also hold down a busy job. He constantly texts me whilst at work asking me to book him taxis etc. and if I don’t respond straight away, I get a whole load of verbal abuse, nasty name calling and swearing etc. This is starting to really get me down.. I can deal with physical problems but struggle with the mental abuse side of PSP.
He now refuses to see his neurologist as he doesn’t want to hear what is happening. So he has now put his faith into a spiritual healer which is miles away and means that someone in the family has to inconveniently take him to. Don’t get me wrong,, I am happy that he feels this healer is helping him and wouldn’t want to stop him from going (not that I could), I just don’t think he should stop seeing his neurologist, who is surely an important person to see.
But when ever I try to discuss anything with him and express my feelings, I am just told to F off and it’s his body not mine.. I am called a selfish tw..t, cu..t and a moron! If the conversation isn’t going his way, he will just shut himself in his room!
I’m really struggling how to deal with this.. luckily I have an understanding boss and is used to me being late because of last minute demands from my husband and also having to dash off on rescue missions. But it’s all taking its toll on me and I really feel like walking away but know I would feel guilty!
Is anyone else going through this?
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Dancing2day
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Dear Dancing, I’m very sorry for what you’re going through. It’s horrible. I’m sorry not to have any decent advice for you. There have been stories here like yours of people whose loved ones become abusive or angry or otherwise uncontrollably emotional. Some have lost themselves entirely, and no longer know their spouse. I never had to deal with that. I can only imagine.
Is his abusive behavior new? Depression over the catastrophic and life-ending diagnosis can appear as anger. It is often how folks (fail to) cope. If you can get him to a counselor or consult his GP about prescribing antidepressants, addressing his anger may be worth considering. If the behavior is longstanding, well, that’s a different conversation.
It has been commonly remarked on this site that once the diagnosis is made, the neurologist may not have much to offer. The symptom chasing can be managed by a good generalist, if you can find one.
Most important is that you take care of yourself. Can you afford a few hours a week of a home aide to give you a break? Is there any family around who can help out on a regular basis? Can you make a plan for the increased support he and you, together and separately, will need going forward? Do you have control of your finances? (The faith healer is worrisome if you don’t.) Can you actually walk away? Maybe you should for your own protection; can you set up some basic care for him to minimize your feeling guilty?
Whatever you are going through, do know this is not a static situation. Try to prepare for things to get harder, but know even the worst doesn’t last forever.
This is all pretty late night rambling from me here, but this site is generally a good place to find help. I’m sure folks in the UK have a better sense than I do of how you may get local support. I do send you my sympathy and best wishes that things get better for you soon.
My Mum was diagnosed in October 22 as well, with PSP and CBD. Her behaviour has changed but the opposite to your husband, but she was nasty a lot before her illness and is not said a cross word to me since.
The diagnosis is hard on everyone, my mum has said I hope it doesn’t get worse than this. It’s very difficult to appease her when I know how awful things can get.
It might be worth speaking with the PSPA charity and potentially your local hospice to find some support both for him and you?
I work full time too and it’s crippling managing it all, maybe try and get some carer support for during the day - depending on your financial situation social services maybe able to help?
thank you very much for your reply…it sounds like we might be on a similar timeline!
I have started the ball rolling with PSPA charity and hopefully I can get some support.
My husband is at the stage where he’s very angry and resentful at the world and everything that he’s going through. Such a tough time- I will be thinking of you x
Dear Dancing,I am sorry that you are suffering so. I have similar outbursts. However, as my husband is quite a long way into his journey I tend to rely on his carers, who he won't argue with. It maybe helpful to speak to your doctor about referring you to social services who can provide carers to take some of the enormous strain off your shoulders.
Further, your doctor should be able to refer him to a behaviour clinic. I have found the GP surgery to be very helpful in dealing with all of the many associated difficulties. Now you have your diagnosis they should help you in many ways. So I would strongly advise you to go to them in the first instance.
I would also advise you to apply for power of attorney so that you control your joint finances, just in case this "healer" is not all he appears to be.
Lastly, the one thing that keeps me sane at times is to remind myself that this is not my husband doing these things, it's the condition.
This is a truly horrible condition and several times I have been tempted to run away and join the circus, but I think that is just a coping mechanism.
Hi Dancer, So sorry to hear about your challenges. I am male 81, diagnosed 5yrs ago. Appalled at first with no warning and no advice offered. So I put myself on diet and targeted exercise regimes, with therapies and supplements. And did the Will, Power of Attorney, and end of life stuff. Am now very wobbly, but still walking, driving, etc. Have made a 3xA4 list of advice and suggestions of what you can do to help yourself, so if you like a copy please send my ur emil address. My partner/carer is amazing helper. Seems the later in life diagnosed, the slower it often develops. Welcome to ask more. And remember PSP stands for Please Stay Positive! And BTW is you husbands healer able to send distant healing? Might take a lot of strain off you, and can be just as effective. MY very warm wishes and love. TimbowPSP
My loving, kind compassionate husband had a massive personality change ( over several years) displaying all that you have described.
The GP referred him to a counsellor at our local hospice which was a help. The Neurologist also referred him to a NeuroPsychiatrust which was the best thing! I “ sold” these to my husband as helping not only him but others in the future!!! He continued with his self imposed dietary regime which he maintained was helpful. After several years battling my husband finally agreed to try antiPsychotic medication prescribed by the Psychiatrist- he only did do to prove me wrong I am sure but this made a huge difference and the last 6 months of his life I regained a calmer, kinder husband. Antipsychotics are not appropriate for everyone with PSP but they helped us enormously.
My final suggestion is to look after yourself. It is so exhausting and demoralising being ‘abused’ verbally and emotionally. I found a monthly off load with a counsellor for myself really helpful.
Hi your story reads exactly the same as mine. My husband was diagnosed October 22 with CBD and for 18 months before it was like living with a different man. Waiting for the official diagnosis which took 10 months he started on antidepressants 1 year ago and that has made a difference. I did often have to remind him not to speak or treat me that way as he didn’t do it with anyone else. Those closest are always in the firing line. You need help be it threw your doctor or nurse of what is available to you. Take care 💜
I too have CBD incurable I get more frustrated with every thing but try hard every day to as much for myself as possible. There’s a carer support group meeting on PSPA website I recommend getting in touch with them to see when it is, chin up xx
Hi my husband is advanced and can be very difficult.. I tell myself when he’s being nasty...he doesn’t mean it...it’s the illness..but it’s very hard.. words do hurt you!! Iv just had a bad night with him... he’s Been in and out bed all night...he has a bed that lowers to the floor with a crash mat...trouble is he don’t fall out the bed...he purposely rolls himself out... every few minutes..literally in out.. I can’t leave him on the mat as he try’s to pull himself up at the end of the bed.. sometimes he actually manages it.. which is not good as his balance, walking is very bad, dangerous for him. If we stop him he gets very angry..swearing name calling.. aggressive .. sometimes I feel like I could just pack a bag and shoot off.... I’m lucky as I have my son staying and giving 100% support... But it’s still Very Wearing.. I can’t put him back to bed..he’s very thin but still strong...and very hard to handle...well for me!! This illness is so weird..one day can’t move..zzzz none stop.. next up out bed...trying to stand..even walks few steps.. like battery’s charged.. very hard to handle ... just don’t know who,your getting from one day to the next really..
it is very difficult to keep in mind, that your once loving husband is now your very painful antagonist. It was a gradual process for my husband, who had always been the decision maker, protector and a fun and loving partner. Once I found it necessary to go around him with making decisions about repairs, when and what to do about purchases etc. he became more and more angry and resentful. Symtoms of the disease are apathy and being unable to make a decision, quickness to anger and the inability to think about others feelings. It is very painful for the caregiver.
Sorry you are going through this very painful part of the disease. I wish I could tell you that it will get better but you have to stop giving into his demands, my sons told their father that they would not let PSP kill their mother as well as their father. I don’t think he had the ability to realize what he was doing. (He did try after wards)If you can have another family member or his spiritual leader confront him with his abusive behavior he might be able to realize his anger is harming the one person who is caring for him. 🙏
I'm sorry you're going through this. The answer for us was Zoloft (generic us Sertraline). My husband takes 100 mgs tablet every morning. It has changed him from a grizzly bear to a teddy bear. No more anger whatsoever. Start with that dose for a week. If he's not a changed man, up the dose to 150 mgs. When the front of the brain is diseased you get this horrible personality change and angry, abusive behavior. Medication helps stop all that. ❤️
just to add to the other messages, sometimes fronto-temporal dementia happens alongside the PSP. Can you ask the GP for a referral to neuropsychiatrist?
Generally the PSP is usually diagnosed 2 years after the first symptoms (falls, small tremors, small difficulties when walking, etc.).
In my notes on the disease I have noted the following between 2 and 4 years after the first symptoms, that is, your partner is probably in this phase:
- More impulsive behaviors. Emotional lability.
- Cognitive problems; decrease in sound judgment, decrease in modesty, increase in impatience and irritability.
- PSP patients often develop changes in personality or behavior and may have issues with thinking and memory, and over the time, have trouble completing every day tasks.
- Marked apathy, not caring about things and taking very little interest in what goes on.
- Increasingly socially withdrawn.
Changes in the character of the patient.
“easterncedar” tells us: “Getting the psp diagnosis is an awful shock, and then it’s such a steep learning curve as you respond to the increasing symptoms. How long ago did you notice something was wrong? This disease affects everyone differently. For some people there is a strong element of dementia, and for others it is all physical. It depends on where the brain damage is centered. Personality changes can be a symptom of the disease or a consequence of getting such a frightening diagnosis. It's hard to separate. Counseling, tranquilizers and antidepressants may be worth considering”.
People with PSP are affected by changes to their thinking which become more apparent as the disease progresses. There are currently no licensed treatments to help with these cognitive problems. A study (2021-07-16) based on MRI by doctors Rittman and Whiteside from the Cambridge Center for Parkinson-plus indicates that PSP patients have less flexible and less efficient brain activity than normal, the more severely the disease affects them. The changes in activity affect not only functions related to the areas most affected by PSP but also affect the entire brain, even when the examination or "tau" pathology appears to be normal.
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