New to PSP and utterly confused: Dear... - PSP Association

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New to PSP and utterly confused

RunPeace profile image

Dear community,

My 65 year old husband was recently diagnosed with PSP. He has been present at all medical appointments, nonetheless I think he is not fully aware of how devastating this condition is. Is this normal? He seems to be happy and I feel I will depressed him if I tell him what might be ahead for him.

He is quite apathetic in general and I cannot stop thinking about this diagnose...

I appreciate any advice on how to handle this diagnose.

Ana

36 Replies

Talk to him then get him to have a look on here.x

Welcome to the site.

Hearing one has an incurable disease make a lot of people shut down. You heard what the doctor said. That’s important.

Where he is in the progression of the disease is also a factor. If he’s still mobile and active he may not think things are that bad and they aren’t yet.

This would be the time to do things you have both thought about doing but we’re going to wait to do. He probably has a few years of being able to do those things.

RunPeace profile image
RunPeace in reply to

Thank you for your response. You are right, this is the time to enjoy the things we want to enjoy.

I full agree with Jeff166.

Hug and luck.

Luis

Welcome. I had exactly the same response from my husband when he was diagnosed. The neurologist said it was a terminal, progressive disease with no treatment . Chris just was not prepared to accept that. I understand. I heard and we both knew. So we got on with it.

I agree with Jeff. However he is it's going to get worse - do anything you dream about now.

Also initiate talks about dying. We are all going to die and you need to share ideas whilst he can talk. You need to organise wills and Power of Attorney etc.

It's a real rollercoaster ahead but we are all here. Many like me stay although our journey is over. There's lots of practical help but also shared humour - often black humour !

There will still be many precious moments ahead but I remember how desperate we both felt at diagnosis. Courage. We all manage somehow !

Love from Jean x xx

My husband has had PSP now for about 9 years. Took about 5 years to get any diagnosis and then the Neurologist said he thought it was PD. About 15 months ago changed to PSP. My husband has never read any reports on his condition and we had lots when we were searching. I know that he still does not really know what he could be in for. We still are fighting this thing and trying new things. He still has hope and I do not want to take that away from him. The neuro did tell him all the things about it initially but I don't think he took it in. I don't know what is the right thing to do but if he is happy relying on me I am not going to change that. I can't imagine how awful it would be having this disease and reading this website. I have to switch off every so often because it is so sad. Good luck and don't give up keep fighting it.

Patsylorium

Hi Patsylorium

You are doing exactly as my husband and I did. Although, sadly Les died 2 year ago.

I know either his brother or our son told him he would die, Les rang me in tears telling me not to look on the internet. I was in shock at the diagnosis myself. Needless to say I did not look at PSP on the internet. My work colleague chose to tell me to expect 7 years from diagnosis. I still can't forgive her.

When I arrived home Les and I talked about bits and pieces of PSP. Our decision was that we would take one day at a time and that is exactly what we did. I wasn't trying to ignore PSP, that was impossible. Les had PSP no matter what.

I joined this forum and this was the most important thing for me. I read posts and cried after reading them but I could not have survived without the close friends I have received help and advice from. The support I received, the love and care is priceless.

I am sorry you have received this diagnosis but every person in this forum will help and support you in any way they can. They were and still are my lifeline.

Take care of yourself and enjoy every day.

Sending love and hugs to you both

Love

Pat

RunPeace profile image
RunPeace in reply to Baileyboo

Hi Baileyboo,

Thank you for your response. I have read so much about PSP and cannot stop thinking about it. I need to get all of this out of my head but I cannot talk to my husband because I do not want to worry him. So far he looks the same but when I see his eyes tear up or see his astonished face as he is falling down, my heart breaks and do not know how to hide my emotions.

This all seems so unreal...

Ana

daddyt profile image
daddyt in reply to RunPeace

Hi there. 7 year life expectancy is an average number, there are several variants of PSP that might provide a longer prognosis. The point being, it's a number and don't get hung up on that. Denial is a common response to this kind of news - there are five steps. I know... been there, done that. Every person with PSP will be affected differently - quick deterioration, then plateau or any combination of the two over a period of time... or not. There are many posts detailing these experiences on this site you can go back and read, there is much to glean from them. DON'T LET THE DISEASE DEFINE HIM... OR YOU.

Tim

Baileyboo profile image
Baileyboo in reply to daddyt

Hi Tim

I felt 7 years was a brutal thing to say. Perhaps I chose not to know about what to expect.

As you said it is a strange and vile illness and will take whatever route it chooses. I only had Les roughly 2.1/2 years. I miss him desperately but would never want him to experience PSP again.

There were many rough patches that we went through, if there was a way to have him back it would be great, I would hate to see it happening again. I know it's wrong to think like this but I would love to see him well again.

Pat x

daddyt profile image
daddyt in reply to Baileyboo

Ironically, PSP takes on a life of its own. My Movement Disorders Specialist tells me she has a patient going on 16 years.

Tim x

Baileyboo profile image
Baileyboo in reply to RunPeace

Hi Ana

I know exactly what you are experiencing as do the others in this forum.

I talked to my husband when we first got the diagnosis. We knew we were in for a battle but both said we will take one day at a time. Maybe your husband may feel less worried if you explain it this way.

PSP is a vile disease but you will find a way to cope. Everyone here will help you. This was my lifeline and although Les left me 2 years ago I still need contact with my virtual family here . I know you will receive guidance and support even when you feel you can't take any more. We have, or still are, dealing with so much but we are here for you and will offer advice, support and whatever you need. Some of us have managed to see the funny side of some things. My main funny experience was when Les fell in the kitchen and we were both mopping up water from the cats bowl. We sat on the floor and chuckled together.

Make every day count and you will find a way through what, at this point, seems the worst news you have ever received.

Take care of yourself. Perhaps you could lightly touch on the subject of PSP with your husband. It may help his fears too.

Sending a huge hug to you both

Love

Pat xx

It was 2 years from diagnosis to death for my wife. She deteriorated quickly in the beginning but plateaued for nearly 16 months before catching an infection which she could not fight. Even with the support I had it was both physically and emotionally very demanding. It was also my privilege to be able to keep her at home. For your husband denial might be his way of coping.❤️

Hi Ana, Sorry to hear about your husband but welcome to this forum which is invaluable and quite a lifeline. No query too big or small! My mum had a similar response after her diagnosis in April. She was happy for me to find out details about PSP (which was so unlike her character of needing to know everything about something) and tell her. What she retains I don't know.

She has explained a few times though that she now can't imagine what things will be like in the future as the PSP progresses and she is coping on a here and now basis but says she knows that she is always at her best.

Good luck.

We were told last year my husband has CBD. It was not explained at all. I found out from internet search. Totally devastated ...my husband still does not know. I felt cast adrift with no support.

SewBears profile image
SewBears in reply to Northstar1

That must have been so difficult! How awful to be given a dx with no explanation. How are you coping now?

Northstar1 profile image
Northstar1 in reply to SewBears

I have confided in close family. Every Neuro appt since i ask him does he have any questions. Everytime he says no. More recently he said 'he thought he would just leave it see how things pan out.......no one wants bad news do they'.

All along i have thought he does not want to know. This has confirmed it.

I have written to the consultant to be mindful what he says. It's a different matter if he asks directly.

As a family we feel it would have a detrimental effect on his emotional and mental wellbeing.

For me I support him as best I can. Though it's difficult as I cannot discuss things with him. I have been in hospital, twice with diverticulitis which has been stress related. Never had a problem before.

I think i have and am still experiencing anticipatory grief.

I will deal with things as they progress.

If he doesn't want to hear he won't however much you tell him. Chris just used to say 'I'll beat it! "

I never tried to pursue it. However I still talked about wishes about end of life . We had conversations about having a peg etc. These happened when we contacted the hospice about counselling . I thought it would help him to talk to someone. All he talked about was his distress at the effect on me. They suggested him going to a weekly group to give me a break. It was a blessing ! They arranged for us to fill in a Last Wishes which was really good as the counsellor helped us to discuss these things. There Is no need to actually say this is terminal. Words will change nothing.

As I said before try to focus on making the best of the present.

Hope you have a sense of humour as it will really help.

Big hug from Jean x xx

Hello my husband does not seem to notice me. I hide things as best I can. He did comment recently I walk around crying lol.

We do have a laugh about things.....and take one day at a time.

Chris was apathetic but always looked at me as if I was his life belt.

I walked round with wet eyes most of the time for the next 4 years!

X

SewBears profile image
SewBears in reply to Northstar1

If my husband notices watery eyes and if he can find the words he’ll ask me what’s wrong. Most of the time I can get away with telling him that it’s just my allergies. If I actually tell him what I’m thinking he’ll sulk for hours and it just isn’t worth it. I change the subject and ask him what he’s thinking about and if he needs anything. It’s getting harder and harder with him shutting down so much. Like you, most of the time my husband doesn’t notice me. He is in his own world. One time I was in the kitchen doing the dishes and he was in the office watching the same video clip over and over. When I went in the room to check on him he asked if I had fun shopping. I told him that I did even though I was doing the dishes. Most of the time he has no idea where I’m at even when I’m standing right next to him. It is isolating and lonely but we try to make the best of it.

Welcome to the site. Dad got his Dx of CBD but never really said much about it. I can understand you not wanting to worry him with a discussion but you really should sit down and discuss his wishes for medical treatments etc as the disease progresses. Get all the necessary legal paperwork done now and out of the way. There may come a time in the future where he can no longer make his wishes known.

Ron

Ana,welcome to the group no one wants to belong to.

The one good thing and the only Good thing about PSP is that it leaves the psp person so excepting of things and they tend to have a lack of empathy.I told my husband everything I could find on psp and it truly didn't effect him the way I thought it should of.

Lots of zigs and zags.

Ask away,many knowledgeable people on here.

Dee in BC

These are things that may help you if have not already done so.

Please get your health directive in order,DNR ( yes or no) peg feeding ( yes or no) any and all financial matters dealt with.

Do your research,do ask here or use the search bar on this psp site,so many knowledge people here with first hand experience.

Try to stay ahead of this disease, meaning that if your low income look for resources that may help with,shower chairs, wheelchair, hospital bed and even a shower and or location of sleeping area if you are in a two level home.

Hi Ana,

My husband is 65 years old too. His symptoms were all over the place. When we found a doctor who was finally able to give us a diagnosis we were confused about what it all meant, but pleased to have a name for it. In the beginning we’d leave the doctors office scratching our heads and asking each other what the heck did he say? Over the next few doctor visits (spaced out months apart) I would record the sessions. Then I would go home and transcribe the recordings. This would help me remember and understand better what was discussed. It also gave me fuel to ask the doctor questions during our next appointment. When my husband had a question about his diagnosis I could refer back to the notes. I didn’t volunteer information, but I was very “matter of fact” about it when my husband wanted to know something.

The doctor would not give us a life expectancy timeline. He basically said that each phase will have its own decision points to process. It’s best to find out your husband’s wishes while he can still communicate. I became my husband’s Power of Attorney for medical decisions and I will follow my hubby’s requests no matter how difficult.

Of course you can’t stop thinking about his diagnosis and this is perfectly normal. I think as a caregiver we go through stages too: Denial, anger, fear of the unknown and maybe even acceptance, but it took me a long time to get to the acceptance stage. Especially when hubby has a really good day and I imagine that he’s not sick at all. I’m probably leaving a lot left unsaid but that’s what I remember going through over the last couple of years.

My advice would be to take one day at a time and live in the moment. Cherish the small things and find things to laugh about. It doesn’t do anyone any good to worry. Take baby steps but soon you will want to do some legal stuff. Here in the US we have a Statement of Will, POA, check to make sure any IRA’s or retirement funds are up to date regarding beneficiaries, etc. once these things are in order you will be able to rest easier. It will be a journey but we just keep putting one foot in front of the other the best that we can.

Be strong.

❤️ from I SewBears

I’ve always felt that even though my husband knows about his illness he really doesn’t “get it”. He was once a person that would research every little ache and pain - his or someone else’s. He did none of that with this diagnosis. I consider it a silver-lining. Apathy is a symptom of this disease. It’s saving him from depression and making a very difficult time a bit more manageable. That’s my take on it anyway.

Hi Ana. I wouldn't worry about your husband not entirely understanding. I think it is a coping mechanism. Unfortunately he will become aware all too soon. On this site you will frequently see people referring to how accepting of their condition those diagnosed are. As I am sure others have said, make the most of what you have at the moment and let the future take care if itself. Don't forget to look fter yourself.

Margaret

Hi there. My 85 year old husband was diagnosed with this devastating horrible disease in February. With it there is an element of dementia I have to say my husband was a community psychiatric nurse for many years and regularly met with dementia sufferers and their families. He does not realise, cannot process this disease and I am okay with it. I am a retired qualified general nurse and much of the time I also DONT want to know either. We have 2 smart analytical daughters One gives great practical support and the other doesn’t seem to acknowledge/ accept it.

Because each person seems to have a totally different path through this condition we just have to muddle our way through.

Hugs and prayers with you xx

My husband is the same. If it was really him he would be devastated and be saying why me etc! But hes just carried on as if it's nothing. He struggles with day to day activities and hes only 56 but he never complains. On a down side, he has no regard for me or interest in me, the conversation is rare. I work full time at present and I come home from work and he doesnt even acknowledge me, hes more interested in watching his daily quiz shows. It's a lonely life for me but I'm sort of thankful that hes taking the disease so well or maybe it's just the damage to the brain that makes him just accept it for what it is. I miss our closeness we once had . I dont think people really appreciate or understand what the carer goes through as well as the unfortunate patient..

RunPeace profile image
RunPeace in reply to Joze121

Dear Joze,

Thank you for sharing your story. In the last 3 years our marriage also changed dramatically and I also thought he did not care for me anymore. We stopped having conversations as well. I was angry at him and now I feel so guilty for not understanding what he was going through.

I am just overwhelmed with emotions and crying every day, he is not aware of it :(

Joze121 profile image
Joze121 in reply to RunPeace

I understand, it's so difficult. I cry too sometimes cause of the situation and because I feel so alone whilst he carries on in his own little world. I do everything for him yet I'm the least valued thing in his life or that's the way it feels. When I try to talk I get told to go away and before this there was years of unreasonable behavour and verbal abuse which I had to put up with. I've lost my husband to this awful disease, hes still here but it's not him. I carry on because its the right thing to do and I dont see any alternative. Your not alone, I feel your pain and frustrations.xx

Oh Joze. My world almost to a T. I don’t work now being 74 but we’ll a nurse for 45 years I just changed my caring mode. But the marriage interaction I really miss. No one to talk to. With Bill it’s DIY and repair programmes. When I go out I can’t stop talking!!! I feel with you xx

At first, it all seems very overwhelming. I knew something was wrong, that's why we went to the neurologist. My biggest fear was Alzheimer's and his forgetting who I was. Then I met PSP. I got a packet from the PSP Association and tuned in to one of their podcasts. I found it so frightening, so depressing, I recoiled. Then, I found this board. At first I "peeked" at it, trying to acclimate myself to this new reality. There isn't a question I've had that someone hasn't answered. The support is outstanding.

As others have said, this seems to be a fairly common response to the initial diagnosis. I thought my husband was in complete denial, but as our journey has progressed, I've learned he does understand but chooses to keep his focus narrow because looking too far down the road isn't or hopeful.

RunPeace profile image
RunPeace in reply to Baytalon

Dear Baytalon,

My husband's first diagnosis was depression, then we were afraid he had a brain tumor, we went back to neurologists and we had gone from Parkinson to PSP. As our daughter says, he has given me the keys of his life 3 years ago and is very happy not knowing anything.

He may know more than you realize and has chosen to put it aside for now. I think that's what my husband did. As his symptoms become more severe, he acknowledges more. I think it was his way of not spoiling the good time we had with dwelling on what was to come.

My sweetheart was nearly the same. His ability and willingness to discuss and address his condition seemed to come and go, but he tried so hard to be stoic about it all, even though he was often terrified.

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