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PSP Association
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My beautiful husband has become another star in the sky

My darling husband of only 2 months lost his battle with PSP this evening. I had managed to get him home on 17th Dec after nearly 5 months in hospital. Unfortunately his SATs dropped over the last couple of days and I couldn’t get them up in the early hours despite suctioning through his tracheostomy, giving the nippy ( cough assist machine), upping the oxygen etc. I called for an ambulance and in A&E they basically told me that he wasn’t going to make it and they took us to a side room where we spent the day with him. He died in my arms and I made sure I gave him permission to go, told him I would be ok and told him I loved him over and over and when the end came he looked peaceful. I am heartbroken and numb.

58 Replies
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Hi Sarah

Condolences to you and your family your husband will be very proud of you for what you achieved

At this hard time please take care and you know that he’s free from that crappy illness

Sending you hugs and kisses

Sue xxx

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Hi Sarah so sorry my heart is breaking for you brings back so many memories, lost George just over 2 months ago so difficult, really wished I could give you a big hug, grieve at your own pace. Yvonne xxxx

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Thank you Yvonne it is so hard and he was only 58

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Thank you Sue

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Dear Sarah

I’m so very sorry, may your darling husband now rest in peace free of this dreadful disease!

You told your husband what we told my Dad.

Big hugs x

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I think it was reading your post a while back that made me understand what to do xxx

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Aww bless you Sarah!! X

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Dearest Sarah my heart breakes for you. Please take some comfort in knowing that you made him a happy man and that you did everything within your power for him. I treasure your wedding photo posted on this site and your happy faces. Take good care of yourself now ... you are loved by so many here & elsewhere.

Sending gentle hugs... Granni B

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Thank you our wedding day was wonderful I am so happy we had that beautiful day

Xx

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Dear Sarah

I am so very sorry.

Your brave husband was blessed to have you in his life. Holding and loving him to the end.

Sending love to you

Lynda x

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Thank you xx

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Sorry to hear.

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Thank you

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You have my condolences. He was held, loved and at peace.. he knew that.

Ron

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Thank you I hope I got it right at the end but this site helped me so much with that xx

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I’m so so sorry to hear of the loss of your husband.

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Thank you xx

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Oh Sarah, I am so sorry you have lost your lovely Steve!

You have battled so hard to keep him with you, and have achieved SO MUCH!

He has lived longer than the specialists expected. He has lived through some very 'long odds'. And he had the determination to get married.

You made all this happen! It has been a whirlwind, a rollercoaster and a nightmare! But in amongst it all, you have found time to make so many enduring memories of love and devotion on both sides.

You must be exhausted and devastated, but there is one more hurdle before you can relax. This is the time I felt most alone, so is why I mention it. I hope you have already planned Steve's celebration of life already. It may take a while to arrange because of holidays.

It is OK to feel numb and in limbo for as long as you want to. You may not have a lengthy period to look back on - and that is sad - but what you do have are strong, loving memories!

You should take pride in the strength you found to achieve everything you both wanted to happen - in spite of PSP.

In time you will wonder where your strength came from! It came from that great love between you both.

I grieve with you for what you have lost - and hope that in time you will be able to reflect back with joy on your time together!

We will be here if you need us, or need a hug. We understand what you are going through.

BIG HUGS!

Jen XXX XXX

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Thank you I can relate to everything you are saying. I haven’t planned Steve’s celebration of life yet formally but have ideas in my head just feel very exhausted this morning

Love Sarahxxx

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Reaching out to you! You can do this in due course. Just float for the time being and gather your strength.

BIG HUG

Jen XXX XXX

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Oh Sarah I’m so sorry and so proud of you! The numbness will help you right now until things settle down. You did what was right and best. You couldn’t have done better. I’ll be praying for you and we are here for you at this sad time. Bless you

Cuttercat

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Thank you I do feel I helped him have a stress free passing and my lovely sister and daughter helped me , my daughter literally held me on the hospital bed next to Steve so I could hold him but now I feel so sad and raw

Love Sarah xxxx

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I know I know I know.

Love

Loesje

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Very sorry for your loss.

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Thank you xxx

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My husband was diagnosed about 6 months ago, although he had been having symptoms for about the last three years, perhaps even longer. I know our journey is going to be difficult, but I am reminded by everyone on this site to just love him, take good care of him and myself, and be kind to him.

I pray that your heart heals in time........

Kerry

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Oh Sarah, so sad to read this news. Sending hugs and condolences at this desperately sad time.

Keep on keeping on...

Anne

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Thank you I really understand your comment keep on keeping on now I have read it often but only now do I really understand thank you

Love Sarah xxxx

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Dear Sarah

This has been my Mantra since Chris was diagnoses in 2015.

We swore that it wouldn't break us but there have been times when I've wondered.

So all we can do it keep doing the same, loving and caring.

Huge hugs

Anne

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So very sorry to hear you have lost Steve. Far too young. He has suffered so much but is now free of this evil disease. I hope you can look back and be proud of how you loved him and looked after him. Pauline x

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Thank you that means a lot

Love Sarahxxx

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Dear Sarah

Sending lots of love and hugs to you at this difficult time. You have my huge admiration for battling so hard to get Steve home and he will have felt all that love.

You must be exhausted physically and emotionally - be gentle on yourself now

Love Tippy

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Thank you I just feel numb and don’t know where to start but I will get there as I know Steve would want that

Love Sarahxxxx

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So sorry to hear your sad news Sarah.

You took us on your journey and I'm so glad you married your true love.

I feel sure he was proud of all you did for him and

I'm so glad you were there to hold his hand at the end. He was truly loved.

Now take care of yourself.

We are all here for you.

Big hugs

Sue x

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Thank you it was so difficult but I am so glad that I held him and comforted him I feel I did all I could have done

Love Sarahxxx

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Dear Sarah, I'm so sorry to hear your sad news, I knew that he was very poorly but I'm sure that you are so grateful to have tied the knot despite his failing health. Grieving is a sad and lonely process, I'm seven months down the line and it's still very raw but I know the pain will lessen and I will be left with the memories pre PSP which I'm sure you will too.

Sending much warm love

Kate xxx

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Thank you it is lonely I feel lonely already even though I have wonderful support from my sister and daughters. Please stay in touch and maybe we can help each other, where do you live? I am in Birmingham UK

Love Sarahxxx

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Sarah

I am so sorry to hear of Steve's passing. You have been an inspiration to us on this site with your determination to make the most of your time together, even with Steve being so poorly. Everything happened so quickly for you and he was so young. Thinking of you. xxx

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Thank you xxx

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Hi Sarah. Big hugs. Nothing I can say but am so glad he was able to become your husband, that you had him home for a while and that you were with him at the end. He must have felt so loved. Now love for you and your family. AliBee

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There was a lot of love in the room when he passed and a lot of peace

Xxx

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That is beautiful. May that love support you during this time xx

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Dear Sarah,

Yes, you are numb and exhausted; you and he carried a heavy load, lovingly, and that in itself was a gift you gave to him. I am deeply sorry for your loss and for your husband, for all that he suffered. Peace...

Marilyn

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As I said above there was a real sense of peace in the room after he had passed

Xxx

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Oh Sarah I'm so sorry . Thinking of you and your family Jeanette x x

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Thank you xxx

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Dear Sarah,

I'm so very sorry for your profound loss. Even as devastated as they were by the disease, we would hold onto our beloved spouses as long as we could - even ill, disabled, non-communicative, they were still the men we married and were "here" - alive and the centre of our lives. It is so huge to lose them, even when we are grateful they are free at last.

As everyone says, do everything you can to take care of yourself now; its a huge blow, but you will survive and live again. And there are many of us here in the same place - I hope you'll stay in touch.

XXXX

Anne G.

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Thank you and I know what you mean by us wanting to keep them with us even through all the bad bits but if I am truly honest I am glad that he passed before his symptoms got any worse, he had told me on Christmas Day that he was frightened that he just couldn’t swallow hardly at all, his speaking was getting quieter and quieter and I am sure he would have become incontinent as that was starting to happen. He had suffered enough but I would have still liked to have felt his warmth for longer but so glad he is now pain free and I like to think that wherever he is he is running free, we loved to run together and it’s how we met. Thinking of him running with nothing bothering him is keeping me going but I am struggling this morning I just can’t stop crying.

Love Sarahxxx

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❤️❤️❤️

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There will be bittersweet memories!

If Steve was able to tell you he was losing his swallowing ability, then he knew his time was short.

You are right to say he was spared further suffering. Whatever time is left, it is hard to see them go.

Hang in there! Time does heal. Meantime, roll with the punches, and take your time.

Sending you a BIG HUG!

Jen xxx

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My deepest condolences! May God be with you during these sad times and may his memories be eternal 🙏💕 Please look after yourself.

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Thank you I am trying to look after myself but am struggling this morning, I just feel overwhelmed with sadness and can’t stop crying but I suppose it has to come out.

Love Sarahxxx

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Dear Sue,

Condolences to you. I know its hard but its good that he is now free from his illness. Please be strong and do take care of yourself.

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Thank you xxx

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Sarah, I'm so late on this, as I have had computer problems and missed this post.

I am so sorry you have lost your darling. You both fought so valiantly and I know that our support helps but it still feels so devastating.

A big hug and love from Jean xx

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Thank you so much, it’s really hard but I am coping ok and have the funeral on Monday, this site and the lovely people on it has been the thing that is getting me through this

Sarahxx

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I couldn't have survived without it !!

xxx

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Dear Sarah,

Like me, you knew it was coming..some day; but still it came too suddenly and you were shocked to the core and now you,be been robbed of your marital happiness.

I truly understand.

I can only say how wonderful for him that his final days were as a newly, lovingly married man with a deeply committed spouse. That is wonderful in the midst of heartbreak.

Deep sympathy and hugs to you. You are not alone on this site, at least. There are many of us who have gone through/are going through it.

Strength to you XXX

Anne G.

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