PSP Association
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He asked the question

Hi

Today Colon asked me when:if he was going to get better, so I have had to explain everything to him, he is so sad and upset.

Up until now he has asked a few things which I have answered, but has never shown any interest in what is wrong with him, he said he sort of put things to the back of his mind. Even when he was first diagnosed he never asked questions, I always assumed he knew, but didn’t want to talk about it, his way of coping.

There have been a few times when we have talked about things but he just seems to almost forget it, but this time he hasn’t.

It’s so sad all I can do is reassure him that all will be ok, I’m lost on what to say to try to give him comfort and not to feel sad and worried.

Feels like we are quite a way down the line as he can’t walk, his speech is going, his whole body seems to be getting more rigid,he lays in bed most of the day, just feel so sorry for him to suddenly realise he’s going to die.

Thanks for listening

Love and hugs

Helen xx

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It's such a horrible situation isn't it. He asked, you had to give an honest answer.

All you can do is keep being supportive and being the great companion and carer that you are. Make sure you discuss options for any help he can get etc, that might make him feel a little better that he knows people do care.

Apart from that, it's a case of seeing how he goes. I'm sorry I can't offer anything more productive.

Hugs

Derek

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Thank you xx

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I know. I've been there too. Its dreadful. There's nothing that can make it better but you are there to share, support and love him.

I know you will find the strength. We all do.

Big, comforting hug from Jean xxx

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Thank you xx

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Oh, Helen

How difficult this is for you both!

Folk are so different.

A therapist in this situation would walk very carefully. Asking the client about their understanding of what was happening and what their hopes and fears were. They would also try to get an understanding as to whether the client wanted answers or just to be told they are safe and it's OK. As you are doing.

Sorry for the rather formal response. But there is sense in this.

You know him very deeply. Follow your instincts. Some folk would rather not face it. Others want it explained. You will know which, I am sure of that. But faced with the situation his wants may well change over time. Keep watch and respond as you feel you should.

One way forward is to ask him about his fears. Respond to them.

Today Liz, who wants it to end as soon as it might, asked me by hand squeezes and my questions, about pneumonia. Eventually I found out she has a sore chest. There is a chest infection going around here at the moment. She thought it might be pneumonia. We 'talked' a lot about it. She wants to slip away with pneumonia, but so too she was frightened she had it. We finally agreed that I would not report her illness to the nurses despite the fact that she felt ill with it and it was probably not pneumonia.

We talked too about pneumonia as being a good ending. We talked about how one slips away with it and those moments of consciousness for kisses and being together through it.

Her ambivalence is so damned normal... People are seldom sure when they are faced with the enormity of it all.

So I hugged her and we kissed and smiled... and tomorrow we will talk again.

I do so hope I am getting it right for her.

I hope that something in this ramble is helpful.

What you are facing is so hard, but Colin needs you as a helmsman right now and you will have a very keen sense of direction. Please believe in you both. You know better than anyone.

I wish you insight and wisdom.

xx

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Thinking of you both, Kevin!

Hugs to you both

Jen xxx

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You seem to be a brilliant husband and carer Liz is lucky to have you .I would like to know who's there for you?....Brenda

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Hi Brenda

Thanks, but this is me on a good day. Because Liz is in a nursing home it is easier as I have time to think and am less exhausted too. Under fire in the trenches... Well you know all about that.

Support? Now there's a question!

I do have access to counselling I suppose. But right the way through its really been me on my tod.

So the forum is a godsend for me.

Thanks for asking

Best

Kevin

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Hi Kevin,

From what you are saying it sounds like Liz want's her journey to end for her sake and maybe yours.

My thoughts are with you both as I know that one day I will have to face this.

Stay strong,

Patrick.

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Thank you Patrick.

Yes, I think for both of us it is right.

Stay strong too!

Kevin

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I worry about whether I should consider counselling for myself rather than plain alcohol! This is a very difficult road and it is going to get much worse for us. So it is interesting to hear you have coped on your own so far. As you say this forum is a huge help.

Richard

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Hi Richard

Well a good stiff drink has got me off to sleep more than once. As a powerful sedative it does dampen the emotional pain and calms one. And we know the risks of it.

My GP offered me Citalopram - a powerful, but chemically mild anxiolytic, "To take the edge off things."

I have found CBD oil quite calming, without feeling drugged.

Getting as much practical caring support in is a key first step. Get time away from caring even a couple of afternoons a week - That helps a lot.

Counselling is good. Sometimes local hospices offer it free, or you could ask your GP. The thing with counselling is that you can try a few sessions and see if it helps. I had some and it was great for coping with the massive transition of sudden early retirement (to care for Liz) and the expected loss of our future together. For me it felt like being on a train running through Clapham Junction at high speed. Being shoved from one track to the next constantly.

I don't think I made too good a job of it all really, but most carers feel like that.

And yes, this forum has been a lifesaver for me.

Wishing you the best

Kevin

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Still waiting for the CBD spray to turn up. If only to help Ruth get to sleep...

I think I will get counselling at some stage - even if only for a few session like you had. Thanks for the reply as ever.

Richard

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Its good to have counselling as it gives you somewhere safe to express your fears. They gave me 10 sessions when I was caring for Chris and I found it useful.I haven't taken up the offer of more since he died as I feel I don't need it so far.

Jean x

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Thank Kevin

I asked him what his biggest worry was, he said watching me and the grandchildren, knowing he wouldn’t be there for us,just felt really sad, I told him we will be fine.

I have given him some oromorph and some CBD oil and he seems a little more relaxed now so I have come to bed, I’m laid here listening in case he calls,

Thank you I know I will do it right.

Love and hugs xx

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Sorry - I missed the first sentence in your post when I replied before.

That must have been hard.

Thank you for tolerating my miss post.

Hugs to you

Kevin

xx

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Thanks xx

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Oh Helen.

I really feel for the both of you. My dad was exactly like this and it was so sad when he finally a. realised and b. accepted the truth.

There are no easy answers with this awful condition, but you do have lots of support right here.

Much love

Hayley x

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Thank you Hayley xx

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Oh Helen so sad don’t you just hate psp, George always said he would get better, breaks my heart when I look at him, this coughing and choking is horrible, not sure what is happening, but I am frightened, so frightened xxxx sending you a massive hug. Yvonne xxxxx

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Thank you and big hugs back to you xxx

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Hi Helen, yes a horrid conversation. But now you both know what is what!

Now you just carry on caring and loving! Tell him you will be there to the end whatever happens. Talk about ways you might keep in contact when he can't talk, as things progress. It also gives you the opportunity to talk about the end, and what are his wishes, a DNR, etc.

You have jumped a big hurdle together and because you are still on the same page, you can share the burden of this journey together.

I regret that my husband and I could not have this conversation, even tho I tried, and it was only in the last week that my love realized he was dying.

My thoughts are with you both! You can do this by being strong while he is with you.

Big hug

Jen xxx

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Thank you Jen xx

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Dear Helen,

I have no wisdom on this subject, but look to those experienced with both the disease and professional therapy/caring such as Kevin to point the way.

One thing that helps my husband - sometimes - are facts which are neutral and help maintain a perspective. E.g. one time when he anguished over the life expectancy of CBD patients, I pointed out the average life span of males in our geographic province and country. I pointed out that if he lived the full life expectancy of the disease, he would actually outlive the life expectancy of average males in British Columbia. Not warm and fuzzy, but hey - every tool in the toolkit has its uses!!

Hugs to you XXX

Anne G.

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Thank s Anne, I know We will come through this xxx

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Great tip, thanks for sharing

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You are not alone.

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Larry asked the I’m not going to get better am I question a year and a half after he was told what he had and his life expectancy. He did medical disability for Social Security as a career. He knows a great deal about medical conditions. I was shocked by his question. I told him the truth. No you will not get better. It was bad day for the both of us. That was a year and a half ago now. His condition has been pretty stable. There has been some decline but not much. I think we may be in year 7. No way to really know.

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Dear Helen

So sorry to hear all that you are going through. I know we will come through this. I was diagnosed in Oct 2017 as having the early stages of PSP, sucks doesn't it. But we all think we can beat it, the reality is we can't. All we can do is manage it as long as possible and hope it goes into remission.

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It is an indescribable ache. I’ve been through this phase too - I’ve only hoped for a certain amount of grace in it all. Hugs to you and your family.

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Sending big hugs to you, Helen. If only we could make this better for those we love.... :(

Love Adrianna

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Hi Helen 119!

I do not have a precise idea of the actual patient's possibilities (Colon) but I will explain some suggestions

1) exercises. They do not achieve recovery but the patient feel better physically and psychologically (We are fighting against the disease!!).

Morning.-Passive exercises in bed or chair (Move all major muscles, speech therapy exercises and exercises of mouth and ocular muscles: 2 to 3 hours) and active exercises ((helped by 1 or 2 people: At least go up and down 50 steps (odd days), walk 200-300 meters (even days)).

Then she needs to rest at least 30 '.

Afternoon: 2 hours siesta and after a cultural activity and additionally a wheelchair walk for at least 1 hour.

We have seen that laughter, stimulation with an electric toothbrush of the muscles around the mouth (inside and outside) and a good hydration (moisturizers for skin and liquids by mouth) help to mantain the face muscles in acceptable shape.

In general it is important to encourage the patient to do things on their own. It is good that everything the patient can do by their own means, they should do it, even if it takes more time. With some help if necessary.

2) Social life. I try to have a socio-cultural activity.

Almost every afternoon, social activity: cinema, city walk, show, museum, conference, meeting with grandchildren, snack with friends, parties, etc. After these events she needs to rest. It is advisable to have holidays in places where the moderate climate allows you to go out on the street and do walks for exercise as well as to socialize.

3) The disease progresses slowly but we try to:

3a) That the meals are interesting and rich in fibers (Mediterranean Diet). I have a recipe book (in Spanish) quite sophisticated for cases of dysphagia edited by the Basque Health Institution.

I introduce a phrase by Kevin (Chat group HealthUnlocked):

"Food and favorite foods are really important. Food is is comforting and if familiar it gives so much pleasure in a diminishing world".

3b) Sertraline 50 to fight against depression,

3c) Lorazepan 1 to achieve a good rest for the patient and consequently for caregivers.

My impression is that the exercises and social activities help to tire the patient and sleep better.

3d) I follow an hourly routine that I moderate if necessary or interesting.

4) Caregiver.

Releasing the PSP caregiver and allowing him/her to have a life outside the home as well as to avoid strong or continuous physical and psychic efforts is fundamental. The main caregiver of a PSP patient is progressively taking on additional tasks. To the personal previous work (when the disease had not been shown), must be added the work formerly done by the PSP patient, plus the management of the illness and the guidance of people who form the help team. A special and continuous attention must be directed to the main caregiver and his/her medical history.

Without a significant help it is very difficult to carry out all these activities without suffering a severe wear-down.

From my experience and also from my group of caregivers it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregivers, far away from the PSP problems. At least, ten days of holiday each six month are advisable.

Hoping to be usefull.

Hugs.

Luis

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Thank you for that very useful

Love and hugs xxx

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I'm sorry for your sadness. My husband also knows he wil never get better. The atmosphere in the house is so depressing. My husband moves slower almost every day. It's hard to know what to do.

My thoughts go with you both.

Kathy

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So depressing

Love and hugs to you

Xxx

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