You are never prepared for it 😢 - PSP Association

PSP Association

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You are never prepared for it 😢

Aslin profile image
10 Replies

My dad has been fighting against PSP for 16 yrs but now he is at the final stage. He had a pneumonia 2 months ago so he stayed In icu for 2 weeks. He turned the corner and made it out however his Psp symptoms got worse. 2 months after peg fitted dad started aspirating again which Is just not fair as he gave up eating completely to extend his life but even that is not good enough any more. Now he is at the hospital with another chest infection. The doctors are considering to fit pej tube in this time.

It’s heartbreaking, my heart is literally hurting to see him suffering and leaving us day by day.

I am not even in the same country. My parents and sister live in Turkey and I live in the Uk so I am not even there to help him or mum feel better. Never felt so frustrated.

I was there for almost 2 months to look after dad but had to come back because I got a family and a job here. We will go back mid October but not sure if he can make it until then 😢

My dad is a well respected very wise man. He was doing his meditation, Reiki, listening to science videos and politics until very recently. He always helped and supported people around him.

I call mum and dad probably every 2 hours to see how dad is. When i am on a whats app call to him I dont even know what to say any more. I hardly stop myself crying.

What can I say to make him feel better? I always told him what a warrior he is and if he hang in there there will be a cure... the Medicine trials are at stage 2 etc. But he is in pain and probably he doesn’t have much hope any more. I want him to think that he won the war not been defeated... We tell him we love him and always been proud of him. I just dont know what else would make him feel better and more comfortable during this time 😢

May be a silly question but what do you think would make him feel better? What should I say?

Wishing all the warriors strength🙏🙏

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Aslin profile image
Aslin
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10 Replies

Comforting, happy, memories of your childhood might help you, plus your mom & dad. The sound of your voice will be there in the room with him. Sending hugs to you & your family... Granni B

Aslin profile image
Aslin in reply to

Thank you very much🙏🙏

ninalulu profile image
ninalulu in reply to

we are very sorry

Aslin profile image
Aslin in reply to ninalulu

🙏

You have done everything you can do. The disease will have its way. It’s all very stressful.

Aslin profile image
Aslin in reply to

Unfortunately it is 😞 thank you🙏

Marilyn_cbd12 profile image
Marilyn_cbd12

I am so sorry. CBD finally overwhelmed my husband 7 weeks ago after 14 years. I agree that it is heartbreaking to watch . I am still haunted by images of his struggling to breathe. The sound of your voice is comforting, I believe. And love never fails to sustain and comfort, even in the darkest hours.

Marilyn

Aslin profile image
Aslin in reply to Marilyn_cbd12

I am sorry for your loss 😞 May he rest in peace. Wishing you strength... thank you very much for your advised 🙏

Sunsetboulevard profile image
Sunsetboulevard

You are in an unbelievably heart rending situation sweetheart . I have four adult children , three of whom live nearby and are able to see their dad, hug him, tell him how much they love him , but my oldest daughter lives in the south and feels the anguish of not seeing him every day . She can however visit every week or so .

I think the main thing your dad would like to know is that you will all be ok when he dies . That you are achieving all that he would hope for in your life, that you are happy or at least content , that you have learnt strength and wisdom and kindness from him and you are deeply grateful for all he has taught you .

Your mother might need your help in the future, for now she is probably coping most days , but will have days when she feels utterly swamped. Keep contacting her, let her know how much you love her ... understand her .

Don’t feel any guilt that you can’t visit easily or as often as you’d wish. You have a life here and your father must be very proud of you xx

Aslin profile image
Aslin

Thank you very much 🙏 Your message made me smile as you are right this is exactly what would make him happy to hear. Sometimes I look so concerned and sad (bcuz I am) and I forget to say what would make him happy. Your husband is so lucky to have 4 kids and you who cares about him and being there for him. Wishing you all the best through this journey🙏

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