Keith 19-11-45 to 29-01-2017

Hello everyone,

I don't know quite what to say except that I am devastated by the loss of my husband to Progressive Supranuclear Palsy, a very rare neurological disease with no treatment or cure. Even though we have been through so much these last three years and I thought I was prepared I wasn't, when I watched him take his last breath a part of me died with him and I can't get that vision out of my head. I keep feeling like the grief is coming over me in huge waves and I can't get my breath and feel in a complete panic! I'm sure there must be lots of people feeling what I am and I'd love to get some support to help me through this!

Love Pat xx

21 Replies

  • Hello there Pat and a very warm welcome to you, we're so pleased you've joined us.

    I'm so very sorry to hear of the loss of your husband. Yours is a very recent loss, so understandably you are feeling utterly bereft right now. I want you to know that we are here for you and I hope you find some comfort knowing there are others here who understand how you are feeling.

    Please do stay in touch,


  • Thank you Chloe, that means a lot to me and I will keep in touch xx

  • Hello Pat

    I am getting very confused with H-Unlocked today.

    I openned a thread to you on PSP...

    I hope that's OK.

    You have been a wonderful member in that community.

    Just saying we're here for you and hugs at this time.



  • I know Kevin, thank you, I'm just having a really bad day, I feel so lost without Keith....xx

  • Hi Pat, I'm so sorry you are feeling this way but pray that one day soon you will see light at the end of the dark tunnel and find there can be a good life after PSP. My answer was to keep busy, see as many people as possible and get out there and live the life I had hoped to live in retirement with my darling. I still talk to him and tell him what I'm doing, tell him I love him and wished he was here, fit and well but then I fill my days doing things I know he would have wanted me to do. I have 7 holidays away booked with different friends and family. The decorating I had invisaged doing when he died has been put on the back burner as I spent too much money doing fun things and paying for air fares but after 6 years of devoting most of my time caring I feel it would be a waste of more years not to get out there.

    We all grieve in different ways Pat. C told me to get married again when he died, I won't be doing that but I know he wanted me to know that every day on this earth as precious and not waste a minute thinking about things I can't change. So that is how I'm living. It's a bit scary. One of my holidays is to visit an elderly great Aunt in Canada. I've never flown alone and she said I have use of her station wagon she never drives now. She is 83. Me, who never drove outside our town before C became ill, now due to drive a station wagon on the "wrong" side of the road. It's not easy being alone after 44 years but I'm treating it as a new chapter and know it's me who has to make the change. When I said no to the Canadian invitation originally, our son's reminded me of what I told then when C was diagnosed in 2010, if you can afford it and have the time, do it now, don't wait as we never know what's going to happen in the future. The future is tomorrow.

    I'm sending you a big hug Pat and will pray you have a brighter future. The future is tomorrow.



  • I'm trying to keep busy but I'm finding life without Keith with me very hard. We have known each other for 49 years, 46 years married and he was my soul mate. I've never been very adventurous and always relied on him to look after me, now I'm just sitting here all alone and I miss him so much!

    Thanks for the hug Bev, I'm sending one back to you....

    Love Pat xx

  • I heard a the dog or maybe my daughter make a noise. It sounded jsut like my husband and for a second I thought he was still there.....was so alone when I saw he wasn't. But I think Bev is right you have to get out there even if that's just volunteering in your church or town. There is stuff to do to fill the void. No one can take your love's place. however, Helping ourselves rebuild a little is good for us....I will have been married 31 years this June,

    Take deep breaths Pat, make sure to get good deep sleep . let the doc give you something to sleep. Then tell sorrow who's boss. I know it's only been 1 1/2 months not long enough to be over it....but do make a plan just once a day to be happy. I helped my daughter with her graphics company today....she has some people doing and event one game in the event is bingo.....they needed 50 cards each numbered 1-40 with 25 rows /columns of numbers So I made them .....took me to about card 42 to figure a good way to do it but oh well ....the editing was "fun" too. But the real fun part was that my daughter and I had a ball together....and she needed the laughter as much as I did.

    I am glad you are keeping busy just remember to be busy and happy a few minutes a day....setting aside sorrow so you may sing happy songs


  • Hello there AVB,

    A very warm welcome to our Bereavement Care & Share

    Forum, so pleased you've joined us.

    Warm wishes


  • Hi Pat

    Sorry to hear if your loss! I won't say I know exactly how you feel cos I don't as I've never been married! However, I have suffered loss & know how that hit me when it happened! Feel free to post anytime you want to or feel you need to! We are here for you!

    You are in my thought & prayers!

    Take Care Pat. Warm Wishes & a Hug spykey 🤗

  • Thank you...,xx

  • Hi Pat, I'm so sorry you are feeling this way and I wish I could be with you and give you a big hug. But you know what, you are a strong person, look how long you looked after and cared for Keith throughout his illness, and fought to get him the care he deserved. This strength will return, but give it time, take each day as it comes and grieve in your own way, as there is no right or wrong way to grieve. You have helped us in so many ways, now we are here to support you in any way we can. Take care, lots of love, Marion, alias Nanny857 xx

  • Thank you Marion xx

  • Pat you looked after Keith for a long time, you fought his corner for him, you were strong for him, the love you felt for him will always be with you, it hurts to much at the moment, but hopefully things will get better for you. Bev is right you need to get out and about, wished you lived near me, we are all here for you lovely lady. Remember the good times PSP can't take them away. Sending you a massive hug. Yvonne ❤❤💕💕

  • I have had trouble accessing the site so this reply is a little late. However, I have been thinking about you, Pat and am sending a great big hug and prayers for you both. Keep in touch. God bless. X

  • It is normal to feel lost and bereft at such a time; especially when you spent so many hours of each day caring for your husband. You need bereavement support from the many places out there, they helped me after my husband's suicide. Your doctor should also be able to help with advice and possible medication, plus there is Mind, who may also be able to help. There are probably local self-help bereavement groups locally. have a look on noticeboards, either in your library or your GP surgery; also some pharmacists have a noticeboard. Right now I know that you will be up to your eyeballs in the Probate system, which can be made relatively easy if you have a good solicitor.

    In the meantime, allow yourself to wallow in grief; you will miss the person who has been such a large part of your life, his loss is like a huge hole, I've been there. Grief is natural, and it has no time limit, so don't allow yourself to be bullied by people saying that you should get over it. Grief doesn't have a fixed timetable, so don't try to force it, ease back into life at Your pace.

    Hugs, Midori

  • So this is where you all are! First time on this particular site and its full of old friends.

    My name is Anne, my husband died 10 weeks ago from PSP, the same as the others on this thread. Although I nursed and cared for him for six years plus, I still didn't really expect him to die. Now I am at a loss of what to do with my life. Everybody is giving me advise, join a club, get out more. It's so hard, I am still exhausted from caring, my fitness levels are at zero, spend a lot of the time, curled up under a blanket, then wonder why I am not getting on with my life. I want this part of grieving over, feel I have spent enough time, over the past few years crying for the loss of my husband. So very fed up of losing things, forgetting, just plain getting everything wrong. I know, I know, that grief, but it stinks, just the same as the evil disease that took my husband.

    Lots of love


  • Hello Anne.

    A very warm welcome to our Forum, so pleased to have you join your friends here, always welcome here.

    Warm wishes


  • Pat I know exactly how you feel, I wasn't prepared for this, how do you begin the rest of your life alone, this isn't how it was supposed to be.

    I need to make some new friends, who aren't couples, but how do I do that? I'm dreading Easter, 4 days of probably being home alone.

    I doesn't seem to be too difficult to keep busy during the week, but weekends seem to be everybody's family time.

    Sending you a hug, 💐💐, you can private message me if you think that would help

    Lots of love

    Debbie xxx

  • Patricia -- When you mentioned waves of grief, I just realized that two years after the loss of my husband, the grief is lying beneath the surface, but the days of feeling knocked over by waves of grief are past.

  • Thank you, your post has given me hope....xx

  • You got me baby....B died early March of the dreaded PSP....and I am now trying to figure out what to do.....I feel so empty....did your husband only have it for three years? B was diagnosed in March of 2013 so he had it exactly 4 years (if counting from time of diagnosis)....He was so young, 53, to have been taken so PSP accounts, B should have had 2 more years on this earth.....though if it was only to suffer more with such a debilitating disease then Fare Thee Well my love . You know longer suffer, but re with your Lord....That is what gets me through it Pat...knowing that Bruce is asleep in Christ....however I am still awake and am fighting off grief or being overwhelmed at any given moment...



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