Just wanted to thank all those who have replied to my posts over the past few years (and even the last couple of weeks!)and to everyone generally for the helpful posts which I have been reading on PSP. It is so useful as a reference for this cruel disease which seems to affect our loved ones in so many different ways. On Saturday my father’s struggle finally came to an end. It’s such a relief that it is over for him and for my mother who has been looking after him. Before he got the disease my father was very active, played tennis once a week, golf once a week and travelled regularly. He was still working and had a sharp mind and sense of humour. It has been a desperate fight against PSP which has taken about 7 or 8 years. Sadly during this time of coronavirus crisis the wider family and friends who would attend his funeral will not be there tomorrow and there will be only about 10 people are ending. Who could imagine such a cruel ending for him. We hope to have a more fitting memorial gathering for him when things improve but I sit at home and wonder when this might be.
Farewell to Dad during Coronavirus crisis - PSP Association
Farewell to Dad during Coronavirus crisis
Really sorry to hear that your father has passed away. May he rest in peace finally free from this evil disease. So sad that this other evil virus is robbing you of the final goodbye.my heart goes out to you.
Sending big hug and much love
Lots of love
Anne
Yes, it's so very cruel not being able to be with our loved ones at the end if they succumb to this virus or indeed to say a final goodbye at their funeral and although it doesn't make it any easier, we know why that has to be. The time will come when you can be together to celebrate his life. I've had the hard conversation with my son and daughter this week about this very thing and I've asked them not to grieve over the fact that if I succumb they won't be able to be with me at the end or indeed at my funeral but I have thanked them for the love and kindness and joy they have given me in the living years and that I will be ok to do the next journey alone. I think we were all relieved after that chat, I know I was.
So sorry for your loss but from my own experience, and dare I say it, for me the relief was immense when Rod died - relief for him in the main but for me also, and I'm not afraid to share that because everyone here will understand.
Celebrate your dad's life when you are able and remember what he brought into your lives - it doesn't have to be what you've lost (though of course that's devastating) it's about what you've had. Sometime in the future you will be strong enough again to embrace that.
Best wishes to you and your family,
Love Hils
X
The relief for my mother is huge. She told me she had not managed to drink a cup of tea uninterrupted for about a year...!
You give very sound advice about not grieving about not being with our loved ones at the end. It’s a conversation we should all have....
Hils, You've said what I keep telling people. In the end, even though we don't have our loved one, we still have our memories. That helped me get through this more than anything. Thanks for saying it so well.
Pat
You know, Pat, after Rod died his childhood friend and wife invited me over for dinner. He made a toast to Rod and ended with the words "it'll be hard to forget someone who gave us so much to remember." Like you, so many good memories have kept me afloat.
Best wishes,
Hils
X
I'm so sorry for your loss.
You did tremendous things as a carer and a daughter.
Warmly
Kevin
I'm so sorry for your loss. PSP is such a cruel disease and I hope it's not in the too distance future that images and happy memories of your dad prior to PSP will return. Love to you and your mum.
Lotsof love, Nanny857xx
Hi so sorry for your loss. 7 to 8 years is too long to endure and that is about the same length of time my mum suffered. May your dad rest in peace and may God bless you and your family.
Thanks for your sympathy. 7-8 years was far too long. Every stage had its dreadful side to it. Every time you thought it couldn’t get worse, it did!! However it also taught us to make the best of it along the way and to ignore the small things.
So very sorry for your loss, sending love to all xx
Sorry for your loss.
I’m so sorry for your loss. My husband passed away March 28. After suffering with PSP for @ 8 plus years it was very difficult to lose him during this pandemic. He did not deserve the closure he received. I understand how you feel but his suffering was unbearable for him as well as myself watching him go thru it. We pray that they knew we did the best for them.
Again, I’m sorry for your loss . I just realized today that I need to reflect on our good times because it seems we can only think of the pain & suffering they endured.
My prayers are with you tonight.
Kathy 🙏🏻❤️
Kathy, rest assured they did know that we pulled out all the stops to care for them. A couple of months before Rod died and at a time when I was practically on my knees with the strain, both mentally and physically, and in fact had been looking into nursing homes for him, considering he barely ever uttered a word he suddenly found his voice and said "thank you for everything you do for me." The tears flow even today when I remember those words - he knew exactly what was going on even though most of the time he was locked in the world of PSP. He also knew how very much he was loved just like I knew how much he loved me until the very end. We get so bogged down in the caring it's often not until it's over that we realise these things never went away, we just didn't have the time to notice.
It is hard not to revisit the pain and suffering they endured but try to take a a minute or so each day to tap into the good memories, look at photos, remember special moments and times of great fun. Yes, you will cry a million tears to start with. We all grieve in our own way and I would never presume to tell someone else how it should be done, but this strategy has really helped me. The hard to bear images don't pop up so regularly now.
Best wishes,
Hilsx
So sorry that you have lost a much loved father and my heart goes out to you that you won't be able to give him the farewell that you know he deserves. This virus has such a wide impact on so many areas. It seems that people who have lost their loved one at this difficult time are hoping to have a celebration of life when things return back to a more normal way of life. I do hope you do have a chance to say a proper farewell further down the line.
Sending love
Kate xxx
So sorry for your loss which could not have come at a worse time but you and your mother must be relieved that he is free of the terrible disease xx
I am so sorry for your loss. I know exactly what you are feeling, not being able to say your final farewell. My Daughter in Law passed away last month ( not PSP ) and the funeral was yesterday. Only immediate family were allowed to attend and that is so heart breaking. I wish you peace for the future. Hopefully you will all be able to celebrate his life collectively in the not too distant future. 🙏🙏🙏
Thinking of you & your Mum at this sad time. xxx
I'm so sorry for your loss. My father passed on 6th March and we were restricted to 5 mourners at the crematorium, so we took photos of all who were absent.
We will hold a tea dance at the carehome for friends and family and a family reunion at our favourite beach once normality returns.
I hope all goes as well as it can tomorrow, my dads sister was unable to attend the service but was comforted with a copy of the order of service and the tribute.
Grief is hard and without family and friends around it becomes even harder. Take care and best wishes mxxx
So very sorry for your loss. It's difficult to have any kind of closure for family and friends during these times of uncertainty.
Tim x
So very sorry for your loss, and for all that your father suffered. My own husband seems to be in a period of rapid decline and I have been thinking how cruel it might be to have him pass when family and friends cannot gather. On the other hand, given my own fatigue, I have considered that a private church service and burial with just immediate family might demand less of me. Like everything else associated with these illnesses, there is no "good" answer. Sending my heartfelt sympathy to you and your family.
Marilyn
I lost my mom to PSP in February. In some ways it is a blessing she passed before the COVID crisis began in earnest here in the US. She was able to pass at home with us by her side and we had her memorial March 1 before any restrictions were suggested for large gatherings. It’s very sad to think of someone passing without their family or the ability for folks to gather and grieve.
But boy, do I miss her every day.
PDDJED...I am so sad for you and your family...I can't imagine not being able to grieve with family members as well as losing your dad...Will keep you in my thoughts tomorrow especially...sending hugs!!
I'm so sorry to hear about your Dad. This is such a sad time in our world right now, but there will be a day when a memorial will be possible. Until then, you have your memories of your Dad to comfort you.
Take care,
Pat
Heartfelt condolences on the sad news. Will definitely have your dad in my prayers . And hope and am sure all his loved ones and family who can't be there will be thinking of him. Strength and prayers your way. May he rest in eternal peace . Be strong :/
Sorry to here of your loss. I hope you can have your memorial soon. Hang in there.
Thank you all for such lovely comforting words. It has helped to share things on this site. Thank you for your thoughts and sympathy.
So sorry for your loss and the additional challenges you are now facing due to the Coronavirus. We had a small funeral when my husband died (PSP) then 3months later a thanksgiving service . I remember so little of the funeral but felt we did him proud with the second service - celebrating the wonderful man rather than “ just his death’
I hope you will in time be able to hold a positive memorial/ thanksgiving service or gathering to raise a glass to a special father
Sending love and hugs at this difficult time
Tippy xxxx
Thank to everyone on this site for all your kind messages. We did have a small service attended by 12 family members on Thursday and will hold a larger memorial gathering later this year. We put a lot of effort into the service even though there were only 12 of us which I think has been a cathartic process and we shared the service sheets with lots of his friends. Thank you so much for all your kind messages on this website and hope you all had a good Easter!
PDDJED,
I am so sorry for the loss of your Father. And sorry, too, that you are now faced with all the obstacles this virus is throwing up. Stay close to your Mom. You are a great team and did a fantastic job as carers.
So very sorry for your loss during this already difficult time we live in. I pray that you feel the virtual hugs and comfort from all of us. Words seem so feeble in moments like these, but the days will always be brighter because he existed. Prayers of comfort in peace coming your way. I marvel at the warriors on this forum. xo
So sorry for your loss - and that you were cheated of the loving hugs and healing warmth of friends and family during such a grief-filled time.
I hope you will get to experience that before too long. Stay strong ❤️❤️❤️
Anne G.
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