PSP Association
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Tears From Heaven

Yesterday was my hubby’s funeral which was attended by family and a few friends. We followed hubby’s coffin into the chapel with Frank Sinatra singing My Way and the service was conducted by our local Rev’d. My children ( adults of course) read a poem “God Saw You Getting Tired” which had everyone in tears but reflected what my hubby went through.....they read with great fluency and their dad would have been very proud of them. Moon River by Johnny Mathias allowed a moment of reflection. We had only one hymn “Morning Has Broken” also the “Lords Prayer” was said. The curtains remianed open and the Rev’d invited everyone to place a rose on hubby’s coffin or take it with them as a reminder of the service. Our exit music was Sarah Brightman singing “Time To Say Goodbye”

What now ...... as a new chapter begins but only after I can get over the guilt I feel....the anger at hubby’s suffering ..... also the loneliness of losing my right hand man....very mixed emotions for me at the moment.

I will continue to read your posts and shed tears too.

To all you wonderful brave sufferers I cannot imagine what you are going through as bit by bit you are robbed by PSP. I send you my good wishes and bear hugs xx Jxx

To all carers keep fighting for your loved ones enjoy each and every moment with them it’s a long difficult road so I send my good wishes and bear hugs to you all. Jxx

42 Replies
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A lovely send off, I hope that you find comfort and strength in that you all did your very best for your husband right to the end. Wishing you and your family all the very best for your future. Ruth x

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Sounds like you gave him a great sendoff!

Now is the time when you will find yourself alone and able to grieve. Put the last 2 months of suffering to the back of your memory, and remember the great times you had together; the laughter and tears, and closeness that this wicked disease brought to your relationship.

Do not feel guilty!! Yes, there will be things you think you could have done better, and times when your anger, frustration and exhaustion got the better of you!

We have all felt that way! It is not just you! And hindsight is both a good and bad way to remember!

You fought the good fight, you stayed the distance, and you could not have done more!

Now is the time for you to sit back, sleep, do nothing, stare into the distance! It is time for you to reflect on the good things you have done together!

In time, your thoughts will be less raw - yes, it does come eventually! - and you will accept that you did as much as you humanly could at the time!

Remember to eat, sleep, drink, even a wine or two, and try to relax, and enjoy the company of your family and and friends, and learn to be just YOU.

Sending you a BIG HUG!

Jen xxx

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Thankyou Jen I did my best but doesn’t feel like it at the moment. Will take on board your comments. Returning a big hug Jxx

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I am going through the guilt right now and Charles forgives me. If I had only known. Hindsight again!

Take care right now. You did everything there was to do including that lovely funeral. Blessings to you.

Cuttercat

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Sounds like a lovely send off. Glad it went well.

All your feelings of guilt, anger and loneliness, are all perfectly normal and expected. I am afraid, grief follows a definite pattern, it's very tiring and consuming. Practically every emotion, pain, etc., will be down to grief. The secret it to accept it all. Not beat yourself up, just the question why, occassionally. The guilt? Why are you feeling guilty? You did everything in your power and beyond to help your husband. The anger? I totally understand this, fortunately I went through this before Steve died, but I still get the odd bout now and again. Hey, why shouldn't you feeling angry. PSP robbed you and him of so much. Try to channel it though. Clear that cupboard out, that you haven't been able to find anything in for years. Start that long list of jobs you haven't been able to do. Physical exercise helps, if you can, but take it easy. I found all my muscles were so tight, everything I did, pulled on of them. Find a good massage therapist, go to the hairdressers. Get your nails done. All these things are great to fill in time, keeping you busy, doing things that you can only do on your own. Accept that there are going to be days, that only your sofa and a blanket can cure.

Zebredee, none of this is easy. My only comfort through this time is, Steve is no longer suffering. My pain is nothing compared to what his was. I would have done anything to take away some of the horrors of PSP. This is now my time to suffer for him. I take gladly. I miss him so much, but not with PSP.

Sending big hug and much love

Lots of love

Anne

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Zebredee sounds like he had a wonderful send off, don’t feel quilty you did a wonderful job of looking after your loved one, at least he is away from the horrible illness. Sending you a big hug. Yvonne xxxxx

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Wise words Anne will reread your post often love to you jxx

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Well said! As usual.

Cuttercat

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Thank you! How are you doing?

Lots of love

Anne

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I guess we are stable. I live in fear anyway. You know how it is.

Cuttercat

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Need an emoji button that isn't "like" but means "Totally get it".....

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Heady, Wise and lovely advise, I have taken on board. Still waiting for this dreadful desease to claim my hubby into our 8 th year now.

Hugs and thanks

Marg

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Sounds a good "send off ". I know the funeral has been a great comfort to me. Love the music.

Its 3 months since Chris died and I continue with a roller coaster of emotions. I know its all an inevitable process but that doesn't help it to be less painful.

Personally I still haven't managed to find energy to get on and do things at all. I do things with family and friends in a sort of daze.

Keep in touch, Zeberdee . Big, big hug from Jean xx

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Jean, welcome and embrace that daze. It gets you through so much. Then one day, I hope, when that feeling wears off, going out with friends and family will seem normal.

Lots of love

Anne

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Jean I am feeling very tired, no energy at the moment and like you in a sort of a daze. Love your hugs and return them. Jxx

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That sounds like a beautiful send off.

Don't rush to try and start a new chapter. Be kind to yourself and allow a little time for healing eh?

Wishing you and your own the best of what may come.

Warmly

Kevin

xx

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Thankyou Kevin I wish you and Liz the very best. Jxx

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J bear hugs back to you. It seems like a funeral full of caring and love. We all worry did we get it right and the answer is yes! If everyone gets comfort then it is the right music etc.,

So now you join the rest of us on the next leg of your journey. The thing you need most of all is to rest and sleep as much as you can. I still feel tired almost 12 months later! I am wondering if I will ever feel normal again. I know deep down I will but it seems like a mountain to climb. I have started to go out again and have meals out, a kind of life? However it wouldn't take much for me to snuggle up with a blanket again!

J we all feel guilty. Why? Because we couldn't stop the awful condition in it's tracks! From the first time we read what would happen we were all plunged into a nightmare. We did our best but we couldn't stop it? Now your beloved is free from it all. He is in a better place now. You however are left with the guilt and the what ifs. That happens to all of us. Even now I have days when I give myself a hard time. Logically I know it's daft but emotionally I am lost.

J I find this site very helpful even now so I hope you stay here. You will understand what new people are going through. It certainly helps me to help others. There are a lot of us who have lost loved ones and we can share our advice with others who are entering this nightmare. Many don't even know they are.

Rest and think of yourself for a while then start to think of what you need/want to do.

Hugs again.

Marie x

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Marie you echo everything. I will stay in touch as I really feel for those on the dreadful PSP nightmare of a journey. Big hugs to you Jxx

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J hugs to you too.

Marie x

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Beautifully said Marie. I've been in the daze and the guilt really can get me sometimes! I will keep your post in mind when I get these feelings! My husband passed so fast on Nov. 25th and I'm still in shock as I didn't expect it to go so fast. I'm really feeling guilty as I didn't realize how far gone he was, he was supposed to go into hospice to get stable from some pain and come home. He was gone in 4 days! How can this go so fast?

Love reading everyone's post as they not only help going through but as the after.

Hugs everyone

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All alone 2 I was shocked at how quickly my husband went too. He had 3 long weeks in hospital before he died but before that although I knew he was really ill I think I was in denial that he was going to die. I don't think I could believe it to be honest.

He wanted to die in the Hospice but he never got there! That makes me sad. I did try however but somehow feel I didn't try hard enough. I try to tell myself off when I start thinking that way as it's pretty destructive. So I pull myself out of the hole and try to get on with things

God bless and remember you are never alone. You have lots of people here who will help you get through this.

Marie x

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Sounds like a wonderful tribute to a good man. So many new concerns and sadness. Unfortunately , some of us feel guilty because we want to be able to do more . We are human too and get tired, Overwhelmed and sometimes exhausted with trying to care for both their physical and emotional needs. Yet, because we love them So much, we never feel we have done enough.

As you grieve , be proud of your commitment , care and love. You were amazing .

I am Very sorry for your loss.

Karyn

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Thankyou Karyn your words make me feel better for a while but I know it will take time. Hugs to you Jxx

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wise words Karyn

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Your husband's funeral sounded like a beautiful experience. I am sorry you had to go through it . I am sorry you are now on that new journey. Remember we are here suffering in our own way right along with you. I want to emphasize what Heady said, that though normal, you need not feel any guilt . Just being on this site , proves that you did the best you could for him. You chose to understand what he had, how it affected him and even others...Somewhere in the tears, you need to give yourself a huge hug and say, "I did the best I could" and that's all you can do. J, this will be the time to rebuild yourself. Start by getting the physical care back into your life ie sleeping , eating right, exercising,drinking water hey get a physical see a counselor or do grief therapy...saying "ok" to those who offer help...my only comfort to you is emphasizing that you are not alone. We and God are hear.

Do well,

Andrea

God is our refuge and strength, an ever-present help in trouble. Psalm 46:1

Cast all your anxiety on Him because he cares for you. I Peter 5:7

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Thanks Zeberdee.

A big Hug.

Luis

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My dad's funeral was on the same day as your hubby's, and we're in exactly the same daze of painful reflection that you describe. These comments are also helpful to me. Sending hugs. Sarah x

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Oh Sarah I am so sad or you too. Hugs Jxx

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A beautiful ceremony from a beautiful family. Hang on to each other.

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Without familybI would truly sink. Jxx

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So beautiful. I’m sure your husband was smiling from up above. Funerals can be so depressing, but when they are personalized, especially when family members participate, it makes it so much more special and meaningful. May God send comfort to you and your family during this difficult time.

Ketchupman

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My grateful thanks to you ketchupman. Jxx

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Prayers and hugs to you xx

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Thankyou daddyt. Jxx

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Sending you much love and strength xxx

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Many thanks spiralsparkle. Jxx

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God be with you as you go forword. Love Jenny

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Thankyou so much Jxx

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Dear Zebrrdee, my heartfelt condolences to you and your family.

It's a lot to process, but hopefully we will all come to terms with what life has brought us. Wishing you strength as you continue on your road.

Much love

Althea

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Thankyou Althea trying desperately to be strong. Love and hugs Jxx

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Thank you J, yes it a long road. Into our 8th year now. Thinking of you

Cheers Marg

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