PSP Association
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I am concerned about grieving

Hi everyone

I can't understand this process!

Les left me on 29 November 2017 which is just less than 3 months ago. I can't find a reason why but I am not crying any more.

This is so weird as I loved that man so much. Has anybody felt like this or am I so strange that I am alone on this one. Grief is so harsh and I have cried buckets of tears and felt so devastated but for the past few days I have acted as though it never happened. Is this normal?

Please can anyone reassure me.

I feel so sad for those on here who are still trying to cope with loved ones suffering from this vile PSP and those who have lost their loved ones. Am I going mad?

I am sitting here wondering why I am no longer feeling distraught.

Love and hugs to all on here who are struggling on regardless as PSP is so unpredictable.

Pat x

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Perfectly normal !!

Grief doesn't have a set pattern. Chris died 9th October and, as its a difficult month of anniversaries and birthdays, I'm almost permanently weeping.

I can't stop grieving for how he used to be pre- PSP

I think you are just in a "numb" period.

Love from Jean xxx

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Thank you Jean. I am having difficulty trying to understand this.

Pat x

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Both grief and people are different Pat, that is it in a nutshell but for what it’s worth I cried as I sat with my dad as he died but I have been OK since then. I feel contented, a strange calm where dad is concerned. Rationally, I miss him but I know I could have done no more and I am glad he is no longer suffering. He had a good life for 84 years. I wish he could have had longer but not with PSP. We are helping Mum clear their home and his garage of 50+ years of his ‘collecting’ atm in readiness for her move to a bungalow. Whilst we are clearing, we are finding ‘treasures’ he made as a metalwork teacher - steam traction engine models etc! The happy memories are making the PSP ones fade and he is our dad not a patient anymore. There is no ‘normal grieving’ just your grieving Pat and if you are ‘abnormal’ so are we. We are all in this together. All the best. Love Ruth x

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Thank you Ruth. I am beginning to think I have lost the plot.

Love Pat x

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No you've not Pat, don't worry, we are all 'normal' lots of love Ruth x

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Thanks. x

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I think it’s perfectly normal Pat!

The pressure of looking after Les has now stooped

I think we start grieving once we fully understand Psp and it’s horrors so I’m not surprised at all

Everyone grieves differently, your not going mad or strange!

Relax, go with it, and here’s a hug x

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Thank you for the hug and reassurance

Pat x

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Hi Pat, I am not at the same stage as you, as my Mum is still in the fight will PSP, however I know I am already grieving for her. I am sure as you have been fighting PSP as a carer you will have been grieving for what was lost along the journey.

From what I know of grieving, although there are recognised stages, it is also a bit like PSP, not everyone gets them all, and not everyone experiences them for the same length of time.

I am sure that those in this group that are going through the same thing as you will all have similar, but not identical feelings. We are all different and your grief is yours and no one else's.

I believe there are various groups/charities that help if you need it, our local hospice offers counselling.

I hope that others more experienced will also respond to reassure you.

Julie x

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Thank you Julie x

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Hi Pat, you are not going mad,or love Les any the less,because you are not crying. There are loads of different phases. The numb phase at the beginning,which I suspect you are still in. Then in no particular order, comes anger,where you well might actually hate Les for leaving you. The survival phase, where you will hate yourself for surviving. the searching phase, looking for something, anything. That's where I am, constantly searching for a new life or something in it, but from my sofa,which isn't very helpful. You might get any of these, or different ones that I haven't mentioned. Just know what ever you are feeling, it's down to the grief.

I remember the not crying, mainly because if you start, you are worried that you won't stop. All these phases pass. I hate it,but there is a pattern with everyone. You think you are different, but you are not. We are all the same in grief.,

Some days I feel stupidly happy, which really feels weird. Then I think what my life had become and understand, why shouldn't I be glad all that suffering is over. I miss Steve dreadfully. My whole life, as I know it, has come to an end. I will survive though, I have to, for Steve's memory, mostly though, for my sake. I have a life that needs to be fulfilled. So do you!

Sending big hug and much love

Lots of love

Anne

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Thank you Anne. This is a strange phase. I feel almost heartless as he was my life. Perhaps it is the beginning of me being a bit loopy.

You are right about grieving I just don't know what the next phase will be. You are bound to miss Steve as I miss Les.

Whatever this blasted journey is at least Les is not suffering anymore and that's the most important thing as it is for Steve too.

I will await the next phase to see what it contains.

PSP has certainly left it's matk.

Love and hugs

Pat x

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I'm in the survival phase....from my computer chair....I feel like my kids can't even talk to me ...not their fault; I fear they are looking at some old building, One child says "Whoah, someone used to live here?" Says the other child,"ooh lets hope no one still does!" Unfortunately, someone still does....

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You are not alone in this Pat. I think we did all our grieving while our darlings were still with us. Grief affects all of us in different ways and none of us should feel guilty about our feelings. Colin died in October 2016. 3 weeks after his funeral I was in Budapest with 5 other widows, having fun and laughing like teenagers. Why! Because life is for living and everyone who has lost a loved one knows that life is also short and every day is precious. 16 months on I do still have a little weep sometimes. Christmas Day was difficult. I was in Australia with my son and his family but several other couples joined us and although surrounded by laughter, I still felt very alone. So I took myself off for a walk in the sunshine and marvelled at the beautiful butterflies, the kangaroos that crossed my path and the hundreds of colourful dragonflies and spoke to Colin. I told him I still loved him and had a few tears but then went back in doors and joined in the fun and games. You may find that hearing certain music, smelling familiar aftershave/soap, visiting places you’d been to together, may start the tears flowing when you least expect it but you may not and there is nothing wrong with that.

Live life to the full Pat. If our loved ones know how we are living, that’s what they would want to see. Wouldn’t we want them to enjoy life without regrets or guilt if it was us who had left, and if you believe there is nothing after death and he has completely gone, who are we hurting by feeling as we do, no one except ourselves if we don’t enjoy whatever time we have left. Don’t sit there wondering Pat. Ring a friend, go out somewhere, finish that thing you started and never finished and enjoy!

Lots of love

XxxX

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That sounds like a plan. I need something to help sort out my head. This is a strange journey. I know what you mean by being alone in a room full of couples. I have my children and 5 grandchildren but somehow they can't always help. This is my journey and I will follow it and see what it holds. Why does PSP rule lives.

At the moment I am waiting for a call from my doctor to try to find something to help the pain in my back and legs. I started physio on Tuesday and it hurts more than it helps. If Les was here he would laugh. This is following a car accident last March. I ignored it as Les needed me more as I took him for a drive and walk at weekends. Loading and unloading his wheelchair was tough but do or die he was going out on a Saturday and Sunday.

To be able to do that for him is a precious memory as I didn't let him down. That's a positive thought.

Thanks NannaB for your reply you have made me think about things. Should the dam break and my tears flow I will go for a walk by the coast where Les and I spent many hours with our grandchildren.

Love and hugs to you

Pat x

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Well if you are there a few of us in the club! I couldn't cry for about 3 months. I just felt totally numb. Then I cried but not much. This is not normal for me. However it's where I am. I do cry but not often and not for long.

I am a bit like Heady sitting on the sofa wanting life to happen! Stupid but at least there are two of us if not more on that sofa! No rules for grieving Pat. You can cry for ages and then stop and it comes back again! So don't worry about it. Just try to make a life for yourself and remember you did a lot of grieving before Les died?

Hugs to you.

Marie x

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Thank you Marie

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I was doing fine until about November.....

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Grieving has many parts to it. My hubby left me a couple of weeks after your loved one. I cried many times when my hubby was suffering and I have cried buckets since. Today I actually felt a little bit normal being on my own. I ask myself is this right... but unfortunately I do not have an answer because I know tomorrow on the outside I will look ok but on the inside well thats another matter. Some say as time goes by it gets easier some say it gets harder. What I do know is that life is now very different and each day is faced sometimes with a smile sometimes with some tears. Will any of us feel really normal after the years of caring and witnessing suffering but we are still here and go on we must. You are not alone, you are normal and I do understand how you feel.

My best wishes to all carers who are fantastic and my thoughts to all suffers who are our hero’s/heroines. Jxx

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Thanks for your reply Zeberdee

The dam burst this afternoon while I spoke to my doctor. I was explaining about reaching for Les in bed when I disturb. I didn't do this when he was in the nursing home. As he said Les was there for a very long time before he became so poorly and it's understandable.

As I am in a lot of pain with my shoulder and back during the night I subconsciously reach out. When I had surgery on my shoulder about 6 years ago Les would get up and get me some ibuprofen and water. Now when I reach out the cat objects to being disturbed.

So this afternoon has shown me I was storing my tears. I have chuckled at attempting to teach Echo (Les's cat) how to break the seal on painkillers but he would struggle with a glass of water. Cancelled that plan.

I know I am still normal now. PSP just gives and leaves total devastation in its wake. We have the memories of watching the person we love suffering in such a horrible way. Then we need to try to get our lives back in order and that, if it exists, is such a long way off.

I am incredibly grateful for you all on this site. You don't realise how much you all help each other. Especially me I am so thankful for the love, hugs and advice you all give. Thank you so much.

Love and hugs

Pat x

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Grief isn't a set path we follow. I think its more useful to liken it to peeling an onion. Each layer is a stage of acceptance but, having removed a layer doesn't mean we have "done " anger or crying . It may recur in the next layer. And the layers may need removing for some time !

Remember the "new normal " ? Well, its still relevant.

We're all normal.

love and hugs, Jean xxx

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Thank you so much Jean x

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Praying for you

Peace to all

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Thank you Michael

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There are so many of us in this boat. When David died and I was given the news I just collapsed inside and cried and cried for a few hours solid. Then I pretty much dried up while my brain took it all in.

Over the next few weeks and around the funeral I had spells of crying, always wet around the eyes, but not bursting into the racking sobs.

Over the next couple of months and up to Christmas I was so crazily busy at work that I didn't have time to think, and that probably helped me, and I tended to have just a few sobs in the evening at home.

Since Christmas though, and life has calmed down a little, it has all returned and I keep finding myself having a good cry. Sometimes you just have to let it out, but it feels weird that the grief seems to have fully taken hold again, just as I was thinking I was possibly starting the upward direction.

We all react so differently, but we are all doing the same thing. Grieving. We just deal with it in differing ways. There is no timescale on grief, we all take longer or shorter than each other. Ret assured you are not going mad (well, no more madder than you were). 😋

You'll be ready when you are ready, and only you will know when it is. I'm back out doing somethings, like going running and playing hockey, but there are so many things that I am not doing again yet, despite me always saying "When the time comes, and I have time again, I'll do X y and z". I'm obviously not ready yet.

Big hugs, and keep up the good fight 👍

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Thanks for the hugs cheeky sod. Have you decided I am mad due to my posts? You have made me smile so thank you.

Grief is weird and I don't think there is a set route for it. It's certainly tough going. It's only coming up to 3 months since Les left me. My boss making me redundant hasn't helped. I had hoped getting back to work would help. I have a solicitor looking into this for me and he has told me to inform my ex-boss I am not accepting redundancy.

Love and hugs

Pat x

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Everyone is different, my husband died just over a year ago, sometimes I think I cry more now than I did then, despite trying to carry on with life, a year on, and I still can't describe how I feel xx

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Heh Debbie, nice to hear from you. How are you? Apart from what you have just said. Think I am much the same as you. The year has gone very quickly, yet it's gone on forever.

Sending big hug and much love

Lots of love

Anne

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Hi Baileyboo, I think Psp takes our loveones while they still alive and we as caregivers carry that pain and responsability for years. Independent of our believes for sure they are in a better place. Enjoy life and your good health.

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Ben is in the later stages f this awful disease and I very rarely cry, just feel numb. I sometimes would love the release that a good cry gives you but the tears just won't flow. I have come to the conclusion that we all grieve differently and that grieving starts early on with this disease, watching him slowly slowly slipping away from me bit by bit, tragic.

Sending much love

Kate xxx

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Oh Kate I am so sorry. I know exactly how it feels just watching this vile disease taking the ones we love and how helpless we feel.

I will carry on trying to make sense of losing Les after 41 years of marriage. It's tough and painful and probably never ending. I will learn to live knowing he is still by my side although I can't see him.

Thank you for your reply.

I am sending love and hugs to you.

Pat x

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I know. I felt I daren't allow tears to burst out or I'd never stop ! I wept gently much of the time but Chris couldn't see them. We grieve for years for what we are experiencing in the progress of PSP

Now I am more grieving for the loss of Chris in the previous 50 years ! But it is still more weeping rather than sobbing - it seems endless.

Big hug for you during this stage.

love, Jean xx

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Little wonder that you are feeling the massive loss of Chris after 50 years together. Sending a big supportive hug to you Jean, all you can do is let those emotions flow, better out than in. They say time heals and you do come to the point where you can move on and just have the fond memories of your time together. I amahi e that feels a long way off but you will get there.

Love kate xxx

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I know - but I am old and the future could be a care home !!! Hard to feel motivated !!!

Love, Jean xxx

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Caregiver to my only sister, 68 years old. I've been 'grieving' for the past two years as she has been in steady decline. She is now in the last stages of death with only weeks or days to live. I'm sad but celebrating the life she had before PSP and finding calm that she will not be suffering any more. be well and have peace.

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Strength to you in this final leg of the journey Tina. Its a deeply sad time.

Xxx

Anne G

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Hi Tina this is the most brutal death. I found Les's last days and hours so hard. In some way I was relieved for him and devastated for me having to try to continue a life without him.

I feel so sad for you. We want our loved ones suffering to end but don't want to be without them. Some how we find strength to cope at this point.

I am sending love and hugs to you at this horrible time.

Pat xx

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