Dad passed away last month from PSP

Hi my dad passed away last month after a fall down the stairs and fracturing his hip. Before the fall he was talking and eating but that all went once he was in hospital. He was in hospital for exactly a month before he passed away.

He was only diagnosed with PSP in November even though he had been getting worse over the years and doctors not diagnosing it till November.

It was once of the most ho

rrible things I have had to see, where my dad stopped talking, eating and was in constant pain and scared and hallucinating. The thing that hurt the most is that he knew what was happening and understood everything and there was nothing we could do for him.

He got chest infection after chest infection until the doctors decided to stop the meds as it was not helping him and give him morphine to help with the pain. We were told he could last a day, week even month on the morphine.

He was taken of the meds in the morning and given morphine that day, but sadly he passed away that evening.

We just never knew he would go that same day and feel so sad and cheated.

Please spend as much time as you can with your loved ones as it will help you later on when they do finally pass away and go to a better place.

Rest in peace dad xxx

19 Replies

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  • dear geetak,

    i am so sorry that you have lost your dear dad , but it just goes to show how little the medical profession knows even today about the horrors of psp -- please make sure you stay in touch with this site as it will prove so valuable to you in your time of grief - love from shasha

  • Thank you Shasha, it still hard everyday and having people to talk to helps as I feel I can not keep bringing up how I'm feeling with family.

  • Dear Geetak

    Please accept my sincere condolences for the loss of your beloved Dad. I agree we sometimes avoid upsetting others, when we need to talk ourselves. Sasha is so right, this forum will allow you to express yourself, and everyone will understand what you went through and what you are going through now. Sending love and prayers to you and your family.

  • Thank you Sharon

  • hi geetak im so sorry that you have lost your father to psp mate

    especially after a short time in hospital but try not to be to sad

    he will be in a better place now no more suffering I know about being confused and frightened of what the future holds for me

    so i know how your dad was feeling mate but you would have done your best for him and he would have known that and perhaps he was ready to slip away quietly take care do not worry about your dad he will be ok for sure peter jones queensland Australia psp sufferer

  • Hi Peter, thank you for your support and am sorry to hear that you have PSP, I hope you have loving family and friends around you and that are ok at this current time. I am happy to listen anytime you wish to talk or let of some stream, take care.

  • hi geetak that's an unusual name where did it come from mate \\ well don't be sorry I have psp ive had a good life and a great family who stick together so what more could I ask for\\\ I am getting on a bit now

    but i would like to go on a bit further if possible at the moment i feel good or as good as I can be but cant complain but thank you for your em my friend it is much appreciated take care peter jonesw queensland Australia psp sufferer

  • Hi the name is India. Glad to hear you have loving and caring family around. Take care,

  • hi geetak thanks for your reply I will take care\\

    sorry I have not replied to you before only my wife and I went away in our caravan

    while I can still do it ==== it was lovely went to a little country village in Australia\

    the weather was perfect average about 30 degrees c had a real good time see yer peter jones queensland Australia psp sufferer

  • I ma glad you had a great time and lovely weather its a bit cold and damp over here. take care geeta

  • hi

    i am so sorrry that you have lsot your dad

    is yoru mum sitlll alive?

    but i know what i tmus teb like fo ryou and i hope you ge tsoem peace from knowing htat hjesi now free of htis psp

    (i have donate dmyh brain for research for when i die)

    lol JIll

    anda hug and xx

  • Geetak, I am so sorry for the sudden loss of your dear father. And thank you for the gentle reminder to appreciate the time we have left with our loved ones. It is easy to forget that there will come a time when we will not have them in our lives anymore, when we are caught up in the trials and tribulations of daily caregiving. I know it was difficult but I am glad you were there for him and you will be also when it all sinks in. Be easy on yourself. He is in a better place-not gone just gone on ahead:)

  • Hi Geetak -

    So sorry to hear about your Dad, and hope you are feeling better now. Console yourself that he knew you were there for him, and doing what you could. Now is your "me" time to gather your strength again, catch up on some sleep and be ready to close one door and open the next. Look after yourself,

    Mo

  • thank you

  • Dear Geetak, I'm so sorry for your loss and for your father's suffering. There's no making sense of it, but your advice is just right. We need to spend the time with our loved ones while we can. I wish you the comfort of your good memories of your father. Peace, easterncedar

  • thank you

  • I'm so sorry for your loss. PSP is a truly horrible disease. My mom is at home in hospice for two weeks now. PSP is very hard to diagnose. My mom was diagnoses in February of last year and when she was many things started making sense. I think she has had PSP for many years now and it got really bad in the last six months. Her extreme rigidity (tons of falling of course) and vision are on the top a long list. As you say, it's hard because I think she still knows what is going on in her head and we are doing all we can to keep her comfortable. She terribly sad and can no longer do any of the things she loves like gardening or reading. I can understand how shocked you must have been that your dad went that same day. My mom went into a coma type sleep a little over two weeks ago, was totally unresponsive and could no longer get up when she woke. Her stiffness if just terrible and it's as if she is made of stone and her vision is worst all the time. When she got her diagnosis last year she took all of the legal measures to not extend her life when the time came but to only manage the pain for comfort. I can understand why she did this and I support her. My thoughts are with you.

  • Hi Caluitur, so sorry to hear about your mum, its so terrible that PSP takes so long to diagnose, but once it is all things starting falling into place and to why they have been the way they are. All I can say is spend as much time as you can with her and enjoy each minute with her, don't let her see you crying or scared as i think this makes it harder for them, am here if you need to chat. Take Care

  • Thank you so much. That is exactly what I am doing. She will boot you out of the room if you do cry so we are as positive as can be and try to tell her about things she would enjoy hearing about even really silly things, it does seem to help. Take care too

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