Long time reader and only occasional poster, but I just wanted to post that my partner David finally lost his fight against PSP a couple of Saturday's ago.
He died in his sleep at a respite care home whilst I was having a holiday in America, I got the phone call in the middle of the night over there. Obviously I have had to come back and sort everything out, but as far as I know he went peacefully, which is about the best way you can go with this condition.
I didn't know he was getting this close to the end, otherwise I would never have gone away, but over the last few weeks, what breathy noises he could make had become more hissy, ie a Yes had sounded like a very breathy snake.
He was still eating lots of chocolate mousse puddings and occasionally a full meal with some solids, although with the next position, he was not able to get more than a couple of mouthfulls of liquid out of a cup or mug. Fortunately we didn't have to go down the PEG route, as he was dead set against it. He still managed to get a big bowl of crumble and custard down though, which always impressed me!
In the past month, we had had hoists fitted in the living room and over his bed, but I know that he hated being hoisted more than anything that I've ever seen him hate, so I do wonder if inside he made his own decision....
He fought for so long and so well, I have finally managed to see him today in the hospital as there has been no one able to sign his death certificate, so he has to have a post mortem, which is happenning tomorrow. He looked more gaunt than even I realised now that the body has relaxed, but he looked pretty peaceful. I didn't handle it very well though.
Rest easy my David, you don't need to fight any more now.
I've attached a picture of him when the PSP wasn't so well developed.
Keep fighting everyone, and for you carers out there, just keep being there for your loved ones, they do appreciate it even when they are having bad days.
Hugs,
Derek
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Ratcliffe
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Derek, I hope that your new journey is based on happy memories and a strong faith. Those are what keep me going not always easy but always there. My husband, in his days when still speaking, started saying a combination of salutations when people would leave the house; he finally landed on "Do Well" so I say to you Derek....
Dear Derek, I am so sorry to here that David has died. May he rest in peace finally free from this evil, evil disease. Look after yourself. It still will be one day at a time, grieve in you own way and at your own pace.
So very sorry and sad to hear of David's passing. Taking care of another through the worst of times has got to be one of the most difficult challenges a person can face. But then I think that anyone we care about and for, who has the misfortune to be hit with such a terrible affliction , faces hurdles every second of every day in a body that is no longer under their control. That trumps anything we have to complain about ! We with comparative wellness can only imagine how we would deal with being in their place ! So we give to them what we hope would be given to us if our situations were reversed. When all is said and done , we do the best we can and keep those we care about and for, in our hearts. May your heart heal and I hope that you have many great memories of David !
My deepest sympathies. I'm sure too many people have said this to you, sorry if so, but I think it's true: It's good that David was able to go in his sleep, just what we would wish for our loved ones and ourselves, although it must have been simply awful for you to get that call. So many people have noticed that the dying sometimes seem to wait to go until their loved ones are out of sight, as though their loved ones are the tie that is keeping them here. That's how my brother-in-law died this past March, when my sister briefly left his room. It hurts, either way. Your sweetheart is gone.
Thank you for sharing this path with me and my sweetheart, too. I wish you what comfort there can be in this hard time. I do understand.
I asked the carers to hoist me once, so that I knew what it felt like, it didn't bother me a bit, but of course the person with PSP cannot move very much, so to be hoisted up without the ability to steady yourself much be a worry, so I can understand why people don't like it. David admitted how much he hated it, but after he had had a few days of it, he said he felt a bit better with it, so hopefully it won't be a problem if and when Chris needs it.
My guy didn't mind the hoist, after all. He had seen his brother be in pain with it and was worried, but it was better than my hauling him up off the floor by brute force, I guess, and maybe even a bit fun. I tried to tell him it was fun...
No-one but me is suggesting he gets out of bed. I can't decide if I should accept he stays or insist on movement.
I haven't asked him if he wants to in case its not a good idea. He is going in the hospice for respite next week so I could suggest they try and see how it goes.
Derek so sad to hear about David, I feel so sad when someone passes away, brings everything much closer. May he rest in peace away from the horrible illness. Big hugs. Yvonne xxxx
Dear Derek, so sorry to hear that you lost your beloved partner, David, it's what we all dread but know that they will be free from their suffering. Now you need to grieve and begin the next stage of this journey without him. They say time heals and I'm sure you will begin to remember the good times prior to this terrible disease.
Dear Derek, my sincere condolences on the lost of your partner David. Getting that phone call while so far away and the journey back must have been your worst nightmare. I hope you get some consolation that he passed away peacefully in his sleep, something we all desire for our loved ones in the grip of this evil disease. Thank you for sharing his photo, he was a very distinguished looking gentleman.
There is no right or wrong way to grieve or no time limit, so just do it your way. Take care and best wishes for the beginning of a new chapter in your life. Lots of love, Nanny857
Derek I am so sorry that David has passed on. Having said that it is good that he went in his sleep? I can't begin to imagine how shocked you must have been to get that phone call. David is no longer suffering now but at peace.
You now have to move onto the next phase of your life. By the way what a lovely photo!
Take care of yourself. Hope tomorrow is not too stressful for you.
Please accept my sincere condolences. The photo shows a much happier time and I hope those memories will sustain you in the days and weeks to come. Keith
So sorry to hear of your loss. How awful to have to journey home knowing what awaited you - feel your pain. I wonder if David was simply ready to go and wanted to protect you by letting go whilst you were away.
Sending love and hugs as you embark on a new journey, be kind to yourself
My condolences to you. It's not easy when they go. You are not prepared, even when you think you've spent all those previous years preparing yourself, they still manage to take you by surprise. Like my Billy, he was , as you say, probably ready.
You were strong enough to love and care for him through it all, and that strength will carry you through.
I am so sorry for your loss and hope you find some comfort in knowing that your David died peacefully in his sleep and that you find some solace in memories of happier times together and of the life you shared.
Derek news like this is very hard to hear about your loved one. I don't know you but I'm sure you took excellent care of David and he was aware of that and grateful to you. Rest in the happy memories you made with each other.
Just for closure, I got the results of the Post Mortem this afternoon, it has been listed as the common hypertension (i) with PSP as contributory (ii).
The coroners have confirmed that he would have either died in his sleep, or just closed his eyes, not known about it and suffered no pain whatsoever. The pefect way for a PSP sufferer to go I think, and just as the disease was about to enter its worst, although I never told him that.
Although I'm in tears again typing this, I think in some ways we were both lucky, and in some ways he got one over on PSP.
Thanks again for all the lovely replies, its meaning so much to me right now.
Sorry to hear of your loss. My condolences. Hold onto the happy memories and good times.
Henry
Dear Derek, I was so touched by your message. Looking at the picture you posted of David reminded me so much of my poor father. What can I say? Your David, like my father, are now at peace and out of the grips of this terrible disease. My Dad hated hoisting to, with a vengeance, I think maybe it makes PSP sufferers feel very unstable. Perhaps their sense of balance is affected too. I was so upset when I discovered that the carers in the home had resorted to changing his pad and cleaning him whilst he was still suspended like this. Some people seem to have no sense at all. I was glad when my father died so that he need not be in the care of people like this. It must be a very sad time for you. I send my heartfelt sympathy. Now you must try to come to terms with it all, if that is possible, and move on to some kind of happier existence. I have found that rather hard but I try. Best wishes to you. Anne
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