PSP Association
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Four Months Today

We were married in the 14th of March and my hubby passed away on the 14th of December, his funeral was on the 2nd of January which was my mum and dad’s wedding anniversary. At his funeral “I did it my way was played”....well he certainly did his way. He never complained about the injustice of PSP...he never complained of the pain of PSP....he never complained. When he was able to speak he said “don’t worry I can cope “ and he did. Our home is quiet even though the radio and tv are on ... it’s only noise in the background because the most important person in my life is not here with me. On this rare sunny day I sit on our seat at the bottom of the garden and tell myself I can cope because I know I have to just as my hubby did. For all sufferers I cannot imagine what each day will bring you. For all you wonderful carers you are an inspiration. I apologise for my outburst but I needed this. Bear hugs to you all. Jxx

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Thanks J. Just heartbreaking. I keep thinking "This too shall pass" when I am sad. Today I can be grateful for what I still have.

Thank you for sharing your feelings.

Hugs, Liz

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Oh beautiful lady that was so sad, but I could feel there was so much love there. It is early days take time to grieve, at your own pace, we are all here for you sending you a massive hug.

Yvonne xxxxx

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Thanks Yvonne but my hubby is still here. At this point I am grieving the smaller losses along the way. So it is said, we aren't given more than we can handle..just wish someone didn't have so much faith in me! Grateful today.

Hugs, Liz

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Sorry xxxx

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Thanks for reminding me of those wise words:

"This too shall pass."

I'm going to pin them up on my bathroom wall so I see them every morning.

Warmly

Kevin

xx

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❤️ 💐 🍷

XxxX

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I share all you say. Chris never complained either. He only worried about the effect on me. I railed for the two of us !!!

We will survive this, Zebedee.

Big bear hug back. Love, Jean xx

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Amazing Jean all our loved ones were going through they worried and cared for us. How loved we were. Jxx

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Yes. I miss it !!!! Jean xxx

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PSP is so all consuming the aftermath seems to be equally as challenging. So many others on this site can offer advice for this stage of your journey I can only send my love and a big hug

Take care of yourself

Lots of love Tippy

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A hug and love I will happily take. Thankyou. Jxx

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J wish I could sit on that seat with you. Today I have hardly stopped crying. My husband died in February 2017! I felt it hard to cry then but today I made a disgrace of myself sitting in a MacDonald's off the motorway. That's when it started and it hasn't stopped yet! So much for "being over it" after a few months or even a year? I don't think we will ever get over it. Maybe I am a pessimist but it feels like I am all adrift. I really don't know which way to turn.

J your post wasn't an outburst. Just a simple post telling us all how you feel. There is nothing wrong with that. Some of us feel the same. Others haven't reached this place yet. Hugs to you.

Marie x

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Marie I cried reading your post and I think others on this site also feel adrift. One day at time I’m told and that’s what I do but tears come so unexpectedly and I cannot explain the emptiness i feel. Hugs returned. Jxx

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J I usually try to do the same but I get upset at things I should ignore at times. I probably needed a good cry to be honest as I tend to bottle things up. That's not good. Like you and so many others I feel so sad and so unhappy that we lost our plans and now I am lost. My poor love lost his life to this awful disease and he truly didn't deserve that. In fact I can't imagine anyone deserves it. I pray with all my heart that they find a cure for it. At least people in future might not go through this pain and suffering?

A great big hug to you. Hope you feel just a bit better today? Hope too that you have family around you.

Marie x

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Yes I do have family Marie and today I feel a bit better but cannot motivate myself to do anything in my home but I will make an extra effort tomorrow and hopefully clear out a cupboard. Jxx

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J good luck with that. I might try to do the same. Hugs to you.

Marie x

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Thankyou Marie sending hugs back to you Jxx

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There will be a hug here for you J, whenever you need it! XXXX

I think of you Survivors and how much you have to teach us, often. Thank you for staying here "in the tribe" :-)

Warmly,

Anne G.

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Thankyou Anne. Jxx

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I just read your post

It sounded like me

All the men seem so strong and brave, puts me to shame when I remember-never a single complaint in the face of terrible suffering

XX

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Definitely our superhero’s Jxx

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Sending you the biggest hug. Sometimes I am really scared of losing John but hate to see the effects of PSP. Like your hubby he never complains but can do nothing for himself just sit all day. he tries so hard to talk but the words won't come out and he just says forget it. I am sure you will make a life for yourself but it is goi g to take time. Xx

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Seeing your man bedbound unable to communicate eat or drink and totally reliant on others is heartbreaking. It is not how we envisaged our last years together. Jxx

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Its not an outburst J. It is simply what this site is about. My Liz was exactly the same. Never complained (it was me who did the complaining ). She tried to communicate but couldn't, but she showed love in her eyes and that is what kept me going. She lost the fight in November 2017 and it still hurts like hell that I could not do more for her. The silence is difficult to get used to but that is when I look at her photograph and remember all the good memories we created over almost 49 years of married life. She made me the luckiest guy in the world. Loved me for all my faults, unconditionally. I am sure your Husband would feel exactly the same. Take time to grieve. It will take a long time, maybe for ever. but do it in your time. There is no timetable. Remember all the good times. I too apologise for this wee rant but its been building up inside for quite a while. We all miss our loved ones and would give anything to have them back pre PSP. Lets just be thankful that they are no longer suffering from this evil illness.

God Bless J.

Lots of Love & hugs being sent your way.

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Thankyou so much...I know I am not alone coping with such a loss but 53 years of being with the one person you would do anything for is really really difficult and pre PSP would have him back in a heartbeat. Bless you too and a bear hug for you. Jxx

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I too had 53 yrs with my beloved who passed in July 2017.It breaks my heart to think of how we used to plan what we wanted to do in retirement and then we’re unable to do any of it.All we wanted was a simple life,working in the garden,enjoying freedom from going to work every day.And then PSP came along and destroyed all those dreams.My heart goes out to all who are still struggling with the disease and to those for whom the inevitable has come.

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You have hit the nail on the head ... an easy simple life ..... but it was not to be. Jxx

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Long lasting bear hugs to you that hopefully last all day, Zeberdee. It's been 21 months and 6 days since I lost my bride of 35 years. She was only 54 years old; way too young to die from this horrible disease. I miss the good days and even the bad days, as I truly loved being a caregiver to her. I know it sounds crazy. I admit it was exhausting at times, like when she'd want to get up at 2am and climb out of her hospital bed over the bed rails while I had her connected to her feeding tube and Foley catheter. And all the charades we would go through trying to communicate and figure out what she was trying to communicate. And playing nurse by frequently checking her BP, temp, O2 and her urine for another UTI. And playing pharmacist by crushing all her meds and putting them through her PEG. But most importantly being her husband by sitting next to her and holding and loving her.

Stay strong.

Ketchupman

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Goodness me ketchupman your lovely lady was much to young to be taken by PSP. Your hopes and dreams dashed. I am so sorry. Jxx

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I think the sufferer worries more for the carer or partner than themselves. David only ever complained about PSP and the pain and uselessness once, and I can't believe how brave, and upstanding he was with the whole thing.

I do know that he worried about me, about how exhausted and fragile that I had become, about how I was the one that exploded and freaked out and screamed and shouted, how I had to do the housework and feeding and toilet ting and bedding as well as a full time job.

More than once he told me to leave him, or to move him on, so to speak, which must have taken some guts to say, just in case I took him up on it!

Needless to say, like all of us, I just carried on the best I could.

Where I am going with this is this: If I can be half the man he was whilst he was dealing with PSP in the time now that he has gone, then I'll be quite proud. He, and most PSP sufferers somehow conjour up incredible reserves.

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Carry on as best we can .... that at the moment is extremely difficult.

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Stay with us we will need you when our journey ends and the next one begins. Only we know how awful PSP is and what it has done to us. You will be there now and then to help.

I know I'll be in the same space soon and dred it.

Cuttercat

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Hugs for the hard times ahead Cutter... XXX

Anne G.

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When my hubby was here with me it was very hard especially witnessing his decline and feeling totally inadequate.......now he has gone carrying on is not easy. Jxx

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