Life without PSP

My wife/partner/love of my life, slipped away on 18 November 2017. Four weeks ago last Saturday.

To say I am devastated/lost/upset in an understatement.

I feel an ache in my chest, yet I feel numb.

The day of her death, was a mixture of calmness, horror, and an hour of final calmness before she died. I saw things I cannot unsee, an overwhelming feeling of nausea accompanies me 24 hours a day.

What is the point of this terrible, terrible disease?

Since the funeral (6 December 2017) there is no point to anything. I have the joys of probate to work out an go through. I have yet to cry, grief is locked up inside of me. I speak to people, smile and look "normal" (..... well as normal as I'm ever going to look). Yet inside my head I am falling apart and feel scared.

The noises of the PEG machine, air mattress, and laterally oxygen machine which I hated with a passion, are now gone, silence remains. Oh how I miss the noises.

14 years, 2 months, 5 days of being together ......... gone in a flash.

Would I go through the same with her, if I could? Too right I would.

22 Replies
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So sorry, gadgetgeek.

I know exactly what you mean and am in the same place of automatic

" normal ".

Big hug from Jean x

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Hugs to you Jean.

Althea

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And to you, Althea.

Jean xx

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I am so sorry to hear that your wife has passed away. Finally free from this evil disease.

One way I cope with the loss, is it think back how Steve was, knowing that his suffering is over. I have finally been able to take over his pain.

Sending big hug and much love

Lots of love

Anne

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Thinking of you Anne.

Much love, Althea

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Hi Gadgetgeek

I am so sorry for your loss and send my love to you.

I lost my husband on 29th November to this vile disease and buried him on Friday 15th December. I know exactly how you are feeling at the moment.

I spoke to my Dr yesterday and was told the numbness is my mind trying to help me cope. The numbness will wear off I just don't know when.

I was with my husband, Les, for 43 years, 41 of those married to my only and forever love. Losing someone to this vile disease is incredibly hard. Watching them suffer is so difficult. Wanting them back is normal too. I would give anything to have Les back but before PSP reared its ugly head.

I am dreading the future and taking 1 day at a time. Although I have close immediate family I feel so alone. It's hard going from being a couple to being one person with half of me missing.

This pain won't leave but I will do my best to go on and try to enjoy things in life again. I am lucky in that I have 5 grandchildren, the twins are only 2.1/2 and help me escape when I am with them.

Take care of yourself. Nobody can give a time when grieving ends, and I don't think it does, I just hope I can find a way to continue living with this side-by-side.

I am sending you love and hugs. I can't send strength as I don't have that myself.

Love

Pat x

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Dear Pat, so many of us on the forum have recently lost our loved ones and my heart breaks with all these posts.

I too wish I could have my Barry back but only before PSP robbed him bit by bit over the past 5 years.

Much love, Althea

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I'm so sorry for your loss. A friend of mine, whose husband passed away, told me you never get over the heart ache, you just learn to live with it. Hold the good things in your heart and try to release the rest. There is no right or wrong way to grieve, or a time limit. My prayer for you will be that each day will be easier, and the good memories will make you smile.

LynnO

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You express so well what I have also felt. Please know you aren't alone. I am very sorry for your loss, but hope memories of happier times come to comfort you. Take care of yourself now. Love, Sarah

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Do sorry for your loss, away from this horrible illness, sending you a big hug. Yvonne xxxxx

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Gadgetgeek I am so sad for you. There are many of us who have been, or are still trying to find our way after losing our loved ones. My husband died at the end of February. I am starting to feel I will manage. However I have no idea how if that makes sense?

At the funeral and for a while after I was like you and couldn't cry. Maybe shock I don't know? Like you we have all seen and heard things we never thought we would. Some of us perhaps suffered worse towards the end. Looking at the person you love suffer so badly is the worst kind of torture.

I can cry now. In fact as I am typing this to you the tears are flowing! So they will come in their own time.

From the loving words you have penned your lady was lucky to have you in her life. I am so sad that this cruel disease took her away far too soon.

Just remember we are always here for you. Here I am 10 months later still clinging to my previous friends on here. We all know the pain and upset because we have been there. In other cases people are going through it and we can give them advice because we have been there?

I don't know where you are in tge world Gadgetgeek but I hope you have support from family and friends.

That lost feeling will be one we will all share for a long time I suspect. Horrible feeling! We will get there wherever there is!

Take care of yourself and keep in touch. You have friends here who understand.

Marie x

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I’m so sorry your dear wife has left you. We all grieve in different ways and no one can know how it will be for you or tell you what is the best way for you. I just accepted that my darling husband of 44 years was never coming back. I do have a faith so believe I will meet him again one day but for now it is only me who can decide what the rest of my life will be like so while I have good health, I’m going to make the most of every day, see the world we intended seeing in our retirement, do new things and face new challenges. Once the big challenge of sorting probate etc was over my life began again and it is good, my darling never far from my mind. I pray that you will also find life is worth living to the full, when you feel the time is right.

Sending you a great big hug.

XxxX

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So so sorry to hear of your loss and understand what you are going through too having just lost my hubby of 53 wonderful years. How I am going to cope long term I have no idea. At the moment I don’t look forward just taking each day as it comes. Love Jxx

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I am the 77 year old mother of a son, 55 years old, lost to PSP on May 4, 2017.

I can only share that for me, with time, it has gotten easier. The first 5 months were the most difficult.

I was a member of an 8 week GRIEF GROUP sponsored by the HOSPICE unit of Kaiser Permanente. This was helpful. My son had Kaiser health insurance thro the ACA. We live(d) in the San Fernando Valley of Los Angeles, each in their own home.

The busy work after his death (selling his house, emptying the house, probate, etc) became a welcome distraction, and also the avenue to grieve.

I too was haunted by images of his decline, plus specific instances. At the end, like most, my son could not talk (his thumb for YES and NO), could not walk, needed assistance with ALL his needs, suffered constipation, a seizure, relegated to a diaper . He died with a PEG but after 5 weeks of its installation refused feedings. This son who was a professional bass player, held a degree in music from UCLA, a Law Degree from Cal Berkely (Boalt Hall), passed the CPA, held a secondary math credential.....a compassionate and kind person who loved living and lived each moment...... until PSP visited him and took away his dignity and trapped his mind in his body.

Much guilt came to visit me. Why did I do this? Why did I not do that? Why did I not ask him more about his feelings? Why did I not hire (forget about the $$$$) more help? Why did I not think to donate his brain for research? There is no end to the questions that attacked me, but with time I have gotten to being more grateful...not for the disease but for having him in my life for 55 years, for having been able to be of service (though limited) to him, for having had such a wonderful son.

Death comes to us all...PSP is not a kind death. Why my son? Why not a kinder death?

With time I have accepted NOT having answers. I miss my son, but I no longer question.

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So sorry to hear you gave lost the love of your life an it is has left a huge gap in your life even though you feel you lost him to the awful consequences of PSP long ago. It must feel very strange to have a silent house with no one to think about but yourself after all that time caring for him.

Sending much love and a supportive arm around your shoulder. Take time to grieve and take hints at your own pace.

Kate xxx

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I am so sorry to hear your sad news. I lost my dear wife of almost 49 years just 2 days before and like you cannot get my head round the silence and lack of things to do. I am in a daze but have been assured that eventually, I will be able to move forward(it doesn't feel like that just now). I hope that will happen for you. You hopefully will keep all the good memories in your mind and throw away the horrible ones that PSP caused. Let us be thankful that they are no longer suffering the horrible disease that they had. One day they will find a cure. Sending you much love and understanding. Stay strong my friend.

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Hugs.

Luis

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So very sorry for your loss.

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I know how you feel about the noises that are suddenly no more.

I personally feel well rid of my Barry's gasping for breath which will haunt me for some time.

Strength to you at this very sad time.

Much love, Althea

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Oh my dear. I do relate to all you are saying. The silence of no machines making noise 24 hours a day is hard to bear. And although ger has been gone for 8 weeks now i am still waiting for the dam to break. Tears now and then but i feel i am still holding myself in, and for what i Don't know. And yes I think all of us who cared for a loved one with PSP would do it again, without a thought for ourself.

Be kind to yourself. Time. We all have plenty of it now to heal and try to live our new Normal. Take care.

Marie

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My hearts go out to you and your family. Do hope your heart heals in time.

Hugs

Dee

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Hello Gadgetgeek

In your few words you paint a powerful picture of the depth of loss you are experiencing.

My heart goes out to you.

There are other posts here which say more than I could. I am writing just to say that I feel for you in your deep loss.

Best

Kevin

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