Feel like I wasted precious time being angry - PSP Association

PSP Association

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Feel like I wasted precious time being angry


Just about two years ago, my husbands and I were seeing a therapist because of (what I believed to be a problem with our relationship. The therapist after first thinking he was bipolar, sent him to a psychiatrist who prescribed meds for bipolar disorder. (Mistake)Then back to her where she was exasperated by his lack of caring to even answer a question. This also was when the slight dizziness began , then many falls and many doctor visits to finally come to a diagnosis of PSP. Our therapy ended very quickly and I was left with wondering who was this man. So I guess what I'm trying to say in too many words, is that this whole personality change began several years ago, not just within the last two years. If only I knew then, I would have at least given myself a break. Knowing he was sick instead of doubting my love for this man was so sad. So

I wanted to add that finding this site has given me some peace. I read most days and it helps me a lot. Hugs, Joanie

28 Replies

Oh how I understand what you are saying, and I do believe this started years before the falling and total lack of empathy. Don't be hard on yourself, if and should don't apply to PSP

Take care of yourself

Dee in BC

Dear Lacey23

We had same ecperience , couples therapy to try and address the mood swings. Aggression. Therapist was scared of my husband . So that worked well 😂. I was planning a solo life unable to bear living with a man so changed from the one I married when he was diagnosed. It is a tough life so feel for you too.

Hubby now sees a Neuro Psychiatrist which has been helpful. We tried seeing a Hospice counsellor together but I found it just to exhausting so he sees her solo now and once a month I see a private therapist to let off steam - a worthwhile investment, I can rant and say things I would never say to friends/ family.

This site is so valuable , I hope it makes you feel a little less alone when dealing with the horrors of PSP

Takecare of yourself.

Tippy xxx

Welcome Joanie

Here you will find lots of new friends that actually do understand!! We don't judge, we rant and rave, and we share and help each other! How old is your man? Are you in the U.K.? What help if any, do you receive? And by the way, hindsight is a wonderful thing, we don't have crystal balls, so please don't be hard on yourself!! X

Lacey23 in reply to Satt2015

Thanks. My husband is 64 and right now he's able to be alone part of the day while I'm at work. We live in the US and I haven't found anything close to this remarkable site.

Satt2015 in reply to Lacey23

Aww bless you both! I agree this is the best site ever!! So incredibly supportive!! Keep posting! X

aliciamq in reply to Lacey23

We have a Parkinson's support group at a nearby hospital, but, the members rarely get to socialize - the time is filled with presentations that are for the most part annoying - drug companies, annoying cheerleaders who think you are senile - My husband enjoys going ~ I just wish we had more chatting time.

doglington in reply to aliciamq

Have you looked up local PSP groups.? Ours gives plenty of chatting time.

Jean x

Kmacgamwell in reply to Lacey23

I'm in the US also. Love this site too.

Although not aggressive there were changes in my husbands personality and other changes which I now can link to PSP

I still struggle with feeling close to him at times when he behaves in ways so alien to the man I married. The apathy now saps my energy.

Its a tough aspect of this disease.

love from Jean xx

Joanie you story sounds just like mine, we did all that, brings back so many memories. Big hug coming your way. Yvonne xxxx

Thank you Yvonne.

Lacey23 in reply to doglington

Thank you, Jean. Saps my energy as well.

I have been on this site for many years and seldom post, but reading your comments where just a mirror of the past five years with my wife who has PSP. She is now in a care/nursing home and still agressive towards me and often tells me to leave which means she is on her own. How It has come to this is baffaling, we have been married for 43 years. After all the love and fun we have had it is hard to feel rejected, counciling has helped but deep down it leaves a pain in my heart when the women I still love is unable to return the feelings.

Lacey23 in reply to clanfield

Yes, not being able to return his feelings is so hard to take. We've been married for 40 years and he's always been my rock. It's like being a widow before the fact. Thanks. Joanie

Hi, I think everyone has gone through, "I want a divorce!" Phase, with PSP. I know I did, long before it was obvious something was wrong. But strangely, I always felt that his temper outbursts, were abnormal. That something was behind them. Hence I stayed. To think he could have gone through PSP on his own..... that keeps some of the guilt feelings at bay.

Lots of love


Lacey23 in reply to Heady

Thank you, Anne.

This sounds like a very similar story to mine !

For years I had chased different possible causes of P`s symptoms (Vitamin B12, NPH, T2 diabetes, Neuropathy, Testosterone, etc, etc).

For a couple of years (at least) I thought P was a hypochondriac - then came the total apathy. We attended `classes` at the local memory clinic that did nothing to help and when we finally got the diagnosis of PSP it was actually a relief !

I felt hugely guilty that I had doubted him and also for the anger I had often felt.


Lacey23 in reply to NanBabs

Yes, it was a relief to find out things were not deliberate. How long has your loved one had PSP?

NanBabs in reply to Lacey23

P was finally diagnosed about 3 years ago but showed symptoms for several years before that (falling, strange gait, memory problems etc).


Good you found out now though. Prayers for you both. Take this time to create some beautiful memories before the disease progresses to far. Take care and keep reading. You'll find lots of answers here and shoulders to cry on.

Lacey23 in reply to Lucy602

Yes, thanks. I'm trying to get him out more.

This lovely site helps us to understand ourselves and the disease. I'm sure you will find it a great comfort and a source of information and it helps you through this arduous journey.

Love Kate xxx

i agree with .U NABabS





Your story really touches home. I am also from the US. I also thought many,many times about leaving my husband because of his personality change. This too was way before his diagnosis of PSP. The anger and frustration I felt for his lack of care or concern I now know is/was part of the process of PSP. It's comforting to know I was not alone in my feelings. I just found this site and am grateful for it. The only other site I have found is CurePSP, and they have an online monthly support group that I have attended a few times. Just not much out there in my community for this disease. God Bless.


I too have found PSP to rob me of the love I used to feel for my husband. He became obsessed with sex... more than usual... and I became disgusted by it. Porn sites, dating sites, talking about my wifely duties...

I sleep seperately now and am clear that if he wants me close he must understand my new boundries.

We are finally able to get close physically without me feeling hunted down.

Anyone else struggling with this?

lindaD_ in reply to Kmacgamwell

My husband became obsessed with sex but I don’t think it got to the stage of porn sites , just the constant accusing me of having affairs ,I’d cry myself asleep at night ,as he’d moved a camp bed in the bedroom so that he didn’t have to sleep with me oh how it would have been so easy to have walked away from it , so sad that then he would have been on his own and maybe gone though this last six sad years on his own ,with no one to fight and tell people that there was something with him after 40 years of marriage and love you know it’s not normal,

raincitygirl in reply to lindaD_

How are you doing now Linda? Its still early days for you, isnt it?

Anne G (lost husband 2 months ago).

lindaD_ in reply to raincitygirl

25th July so not really very much different , had the funeral 2 weeks ago so got to pull myself together now ,my no one is to go to doctors had an op about 12 years .ago and it needs doing again don’t think all the lifting helped (prolapse)so now time to get that sorted . I will thank you Anne g

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