Finding things difficult.

[SheilaN]

PSP has reduced my once difficult, opinionated and awkward husband to a passive, unmotivated man. He was physically strong, very capable in a wide range of skills, interested in many different areas of life and very interesting to be with. He retired from a successful army career and despite his character was modest about his sporting and other life achievements. Now he cannot follow simple instructions, can't follow a conversation, has no short term memory, misunderstands most things, can't express himself clearly, gets little from reading and tv, forgets to drink, cannot look after himself. I miss him terribly.

There is a lot of help available. Because he struggles physically, cannot walk without help and falls he has a wheeled walker (I can't remember the name) we have loo frames and a bed lever etc. He has a social worker (no ASBO required!) who has helped to arrange day care and I just have to say the word and someone will come and shower him. While I can, I will.

Despite all this he does still get pleasure from a walk outside, especially if we see birds. It's getting more and more of a struggle to get him ready, into the car and out at the other end but while we can we will. He also enjoys talking about and looking at photographs from the past. Then he is at his most animated and to see him smile or laugh out loud breaks my heart. He still loves listening to music but because he cannot stand easily and browse his collection I have catalogued the CD's so that he just has to look through the book and choose one .The same with DVD's.

I wake up every day and promise myself I won't be impatient or angry with my husband when things go wrong. It doen't help him and just make me feel guilty.

Retirement certainly isn't what we anticipated.

[SuzieQ]

Hello Sheila,

Sorry you are having a difficult time. I can identify exactly with almost all of your comments. It IS difficult and nobody can dispute that PSP wrecks the lives of the family and friends of the sufferer. How we deal with this dreadful illness is beyond me. I ask myself over and over why this cruel, cruel illness came into our lives. Like you I hope each new day that I will be more tolerant and not get so angry, but you know the saying..."the best laid plans of mice and men"...... I rarely get through the day without breaking down over our predicament and like you, the plans we had for our retirement have all gone now.

I hope your mood will soon lift and before long you will be able to see things a little more positively again.

Take care...................SuzieQ xxxx

[BrianM]

Hi Sheila,

I read your words and I am so sorry that you have such trouble in your life.

Retirement is supposed to be fun, but unfortunately this disease has a way of taking all of the fun out of it.

I also have PSP and I do not know how much longer I can write to everybody. I can feel myself slipping away...

The spell check is great, but at times, I don't know how much longer I will be able to do it. I hear the same thing from my wife, she misses the man that I once was. The only thing I can say is this: We are still in here, and it helps when you do not get impatient or angry with us because we forget things, or drop things, etc.

So, please be strong for yourself and for your spouse as well.

Brian (in the USA)

[Hidden in reply to BrianM]

Hello Brian,

I am so sorry to hear you have PSP & I am so full of admiration for your honesty in writing. I sit each morning before I start actively caring for my mum, bracing myself to be more patient but I always find myself huffing or puffing, by the end of the day...............but we are only human & I comfort myself with the fact that if the shoe were on the other foot, she'd be far worse at being patient! I think we need to be strong but also honest & realistic and I stopped trying to be a saint some time back - I am a human, just doing my best for someone I adore. Do you mind me asking? You say you can feel yourself 'slipping away'............ I find myself constantly observing my mum & thinking............what does it feel like for her..............does she feel 'cloudy'.............does she feel confused..........does she feel scared...........I realise each individual is different but if you are prepared to tell me, I would find it easier to help her if I knew what it was like from inside - she cannot explain & cannot type. My heart goes out to you and your family............I cannot begin to imagine what you are going through..........do try to hang on to some sunshine & humour through it all...........small treasures............my mum has started reversing the things she tries to say & often says a whole sentence and then we both stop for a while & look at each other & both realise that neither of us is sure what was said (!)....then we both giggle...............I treasure these giggles.............it's what keeps us going. I hope that your illness progresses very slowly and gives you maximum time to live your life. Take care Brian & stay strong & thank you. Bron

[SheilaN in reply to BrianM]

Brian, your words mean so much to me and I really appreciate the time and effort you have gone to. You are in my thoughts and I hope you and your wife have a lot of time left to love each other.

Take care

SheilaN

[judy1962 in reply to BrianM]

Brian,

I am so happy to hear your perspective as it gives me a window into what my husband is feeling and thinking. It has helped me to get less impatient with him and to give him extra cuddles and love. Things can get very difficult when there is only one caregiver. We had a crisis this weekend and I had to take care of my daughter and my husband. He was having not so good days and I asked my sister to leave her family and to come stay with me. She did and it was a blessing. She loves caring for him and he enjoys her. I needed the rest and I could tend to my sick child.

Where do you live in the USA. Dave and I live in upstate NY. It would be nice if we could meet if we live close. Take care of yourself and my love to your wife.

Love,

Judy

[kay1]

Sheila - we do find strength and support from the friends we meet on this site. I can let my feelings out and know that the responses from folk will be "I had exactly the same experience" and advice from fellow carers will be helpful in the managing of this dreadful disease. My husband has been in care for twelve days, and before that hospital four weeks, truly a new learning curve for both of us, but still grateful for the time we spend - have together.

[SheilaN in reply to kay1]

Thank you for your thoughts Kay. Already in just 24 hours since registering I have found comfort and support from others in the same predicament. For us today things have gone from bad to worse but now we are having a cup of coffee, trying to put it behind us and looking forward to a better day tomorrow.

Take care

Sheila N

[SuzieQ]

Brian (in the USA)

How great that you have shared your personal perspective on how it feels to suffer from PSP. Reading it made me very sad but confirmed what my husband finds difficult to discuss with me - he, like you, is still in there. Thank you, and I will endeavour not to get so impatient or angry when things don't always go right. My husband finds it difficult to talk about the illness and is unable to write down his thoughts, even using a computer. I hope you will continue for a long time to write on this site. From a carers point of view it is extremely helpful to get insight from "the horse's mouth". (Hope you are not offended by the expression!).

My very best wishes to you and your wife. Take care.

SuzieQ xx

[HannahDaykin]

Hi SheilaN,

The loss is the heartbreaking. I really feel for you.

You are obviously very strong and it's admirable.

We'll get through this. One way or the other.

Thinking of you xx

[Peter2]

Hi SheilaN your blog of four days ago, you could have been writing about my husband. He too was opinionated, awkward and at times very difficult if he so wished to be, but he was also my loving, caring husband. Over the last three years he has slowly become even more awkward. It is only now, with hindsight I realize the changes in his behaviour were probably due to PSP.

I too get angry and upset with the things he does during the day and night, but from reading others blogs I realize we are still fairly fortunate, ( if you can say fortunate for any family experiencing PSP) as we can still enjoy walks together as we did today. On these walks there is little conversation, but we hold hands and for a short period my husband is himself again.

Later today I found his hairbrush in the garden! I did not ask why it was there.

We all need short breaks from our caring responsibilities and we shouldn't feel guilty having a little time to ourselves. I find I am of a better disposition when I have had some time to myself and better able to cope with the next situation that will arise. I still get angry with him, but maybe not quite so often.

I retired nearly three years ago. The first two years were very good and when my husband was on leave, we had some incredible holidays together. I'm so pleased we did this. I feel now retirement is over. Take care.