PSP Association
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Grieving is so hard

Grieving is so hard

Hi folks. I am hoping that I can get some advice on coping. I lost my wonderful husband on 29 November 2017 and I am going through hell.

Les and I were sitting in his room at the nursing home during the summer. He asked me not to give up on him. I don't know where it came from as I never would. I promised him I would never give up on him.

This week has been so hard as I keep remembering him saying it so clearly. I feel so bad as I allowed the consultant to give him stronger medication knowing he was in pain and knowing it would ease the way for Les. I loved him so much and I have struggled this week as I feel I broke my promise to him. The conversion has played in my head all this week. I am crying as I write this and struggling to cope. I didn't want to lose him and miss him so much.

Has anybody on this site had a similar experience or am I the only person feeling guilty and responsible for the man I loved dying. Our son and daughter-in-law and daughter have told me that I did everything possible but I feel as though I failed at the end. This is so hard.

I am showing this photograph taken roughly 10 years ago. He was my soul mate and I loved him so much.

Pat x

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Oh, Pat, yes. I am scoured by regret and grief all the time. I failed and failed, and sometimes wonder if my sweetheart might have been better off if I had not found him. What is the point of that thought? I know he loved me, and he knew I loved him, and that's the most important thing. You can only do your best in the moment, which I am sure you did. Grief is complicated and there are no good shortcuts through it, but please be kind to yourself. Les would not, I am sure, wish you to be in pain, right? Remember the love, and try to be comforted. Sending hugs, Sarah

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Thank you Sarah. This is punishing me so much. Only I have control of my thoughts but this hurts.

Thank you for your reassurance.

Love

Pat x

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You will get through this awful time, and you will cope, but we never truly get over this kind of loss, I don't think. Maybe I don't want to.

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It's not that you don't want to. I feel the same. When you love someone a much as you and I obviously did it is going to stay just under the surface and we have to try to be strong. I'm not succeeding with this very well though.

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It's too soon to talk about succeeding. The grief does remain under the surface forever, I think, but we just get better at coping with it.

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Boy howdy...that is the truth...but not letting it get out of control allows us to regain healthier thoughts.....right?

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Well said ec

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Sarah I forgot before sending my reply that there are many like us on this site and I feel that my remark may offend others. I hope it doesn't as it was never meant to sound selfish.

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Good heavens, no. Please don't think that. We are all in this together. I was going to suggest that perhaps your Les was looking for some comfort in the moment he spoke, not really trying to check your commitment. You provided what he needed then, yes? Hugs, s

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You could be right and I am thinking too much. I need to try to stop crying and in some way accept that Les no longer has to struggle and suffer.

Pat x

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Scream instead of cry ...i don't know why maybe just change the environment of your heart and mind...

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You're feeling guilty for feeling guilty....chick stop the madness ;)

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How can I stop the madness when it would appear to be part of me. Only joking.

You are probably right in what you say and in time I will see this for myself.

Thanks for your reply.

Love

Pat x

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I had to do the same in October for my husband knowing it would ease his pain but also take him away from me. Please don't think you gave up on him or feel guilty. It was the best thing we could have done for their sakes meaning we were with them to the end not giving up on them. Making that choice was definitely NOT giving up as it would have been cruel to make them stay and suffer.

Be happy knowing you didn't give up xxx you were very strong and very brave xxx

Big hugs brave lady xx

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Thank you. This is incredibly hard. My middle granddaughter Lakota is 5 and she is struggling. She asks things out of the blue about grandpa. She writes letters to him saying she loves him and wishes he was still here. It's heart breaking to see her little face but she loved him so much.

I guess I am going to struggle on, as we all do and hope that one day will eventually come when I don't cry or have silent tears escaping when I am trying to cope.

I don't feel very brave at the moment.

Pat x

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I know how you feel Pat I have a 3 yr old granddaughter who was the apple of his eye she and my daughter live with me and I've had a canvas picture of grandad and put it on the wall at her height she can go cuddle it kiss it and talk to her grandad anytime she wants to anyone else coming into the house will think it's too low. But if that's what it takes for her to get through this then so be it.

Take care Pat big hugs

Pam x

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Thank you Pam.

Lakota has started to write letters to grandpa and draws pictures of the funeral that she understands it to have been. She was too young to come.

She asked for a photograph of grandpa and Igave her the card that was given at his funeral and watched her carefully put in her pencil case. It was very moving.

She stayed over with me on Friday and lay on the sitting room floor playing eye-spy. She said something beginning with C. I couldn't work it out so she looked at the lampshade and spelled out cobweb. I laughed so much. I don't mind her seeing cobwebs but spelling it was rubbing it in that I have not done a great deal of housework. From the mouth of babes.

I enjoyed having her so much as she has stayed overnight with us since she was tiny.

I like what you have done for your granddaughter as this loss is something we can't disguise and we need to work out a way to help them.

Pat x

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Oh Pat I am so sad for you. I have been the same this week. I thought I was doing well but the truth is I do for a while, and then it all comes flooding back.

We have all been through a terrible trauma. We would forgive our loved ones if things had been reversed? In fact we would probably thank them for letting us go? I recall my husband asking me if I would help him to die. I had to tell him I couldn't as I would end up in prison. If I could have done you know I think I would have. Although maybe not as I wouldn't have been brave enough, and I wanted him here for me. It is so very hard to let go of someone you love even if they are suffering. If it was a pet you would have it put to sleep? I think the law needs to be changed but we would still blame ourselves?

However this is all part of the grieving process. I don't know about you but I am feeling very alone. I miss my husband so much. Even though he was reading most if the evening when he could, and later he was sleeping.

Wouldn't it be good if we could all meet up as I am sure we are all feeling we have let our loved ones down even though we know deep down we haven't? We did our best and that's all we could do? At least we would understand what everyone else felt?

I don't think you ever get over this really but maybe you do come to terms with it? It is coming up to the first Anniversary of my husband's death next month and it's like a black cloud over my head. I so understand what you are feeling Pat.

Lots of love and a great big hug to you.

Marie x

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Thank you for your reply Marie. I didn't want to lose Les. After reading your reply, although I hate to think of anyone being sad, I realise I am not alone.

That doesn't make it better but my heart goes out to you coming up to the first anniversary. I have that to face

PSP is brutal in the way that it takes our loved ones. We are powerless to stop it and just have to watch it progress in the crulest way.

I am sending love and hugs back to you as you need them too.

Pat x

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Marie,

My father had PSP initially diagnosed as Parkinson's in 1989.

He was a widower living in Florida with my youngest brother and we moved them back to California as soon as we knew he was ill.

We started with assisted living, then board and care and finally a nursing home. It was hell to see his vibrant mind and personality trapped inside a body that no longer functioned. The last thing he was able to communicate in writing was "I want to die". We had three young daughters and were also raising my youngest brother (7 children in 13 years and then my mother had my brother when I was 20). If I could have helped my father in some way that would not have hurt my family I would have done so without question. When he went into the nursing home he was able to execute a DNR which also stipulated that he was not to be hospitalized for any reason. He contracted pneumonia in late January of 1991 and as hard as it was to see him struggle to breathe we knew he wanted to go. He hung on for 8 days, much longer than they expected. I went back to see him late in the evening on Sunday, alone with him for the first time. After telling him how much I loved him and didn't want to lose him, I finally said that I would always take care of my brother as if he were my own. I'd never come out and said that before because I thought he knew that I would. It is my belief that by saying it out loud to him he was able to let go. He passed about 5 hours after I left. He was 3 months shy of his 69th birthday.

It was a blessing for all of us. We knew he was no longer suffering and we could focus on the future and give my brother a family and a place to call home. My daughter's came up with a word to explain their relationship- he is their brunkle - brother unkle.

I periodically research PSP and was so moved by what I read on this site. I have experienced the loss of loved ones beginning with my mother who passed away suddenly on Christmas Eve of 1980 of heart disease. In 2013 I lost my youngest sister to liver disease at 49 nine weeks after diagnosis and later that year lost a brother to heart disease at 57. My older sister by 17 months passed away on December 27. She battled cancer for more than 6 years and while we understood she would never be cured we thought she would be with us much longer. My husband has been going through chemo and radiation for Oropharyngeal cancer since November. Tuesday will be his last treatment and then we will wait 3 months for a PET scan. I consider us very fortunate because this was a cancer we could fight and it has an 85% 5 year survival rate.

From this site I read many stories about PSP and can only hope that earlier diagnosis by doctors has also brought new medications and therapies that delay the progression and enhance quality of life. Over the years I've noticed PSP appear more often in obituaries- not because more people have it but because it is recognized more often. I try to keep up with the research out of a very selfish motivation. I want to know if it runs in families. The research I did in 1990 at the Stanford Health Library cited just one case with a familial connection- a mother and son in Canada.

Marie - your comment about helping your husband resonated with me and propeled me to write about my experience. If you are not already doing so I urge you to find a therapist or a grief counseling group to help you deal with your pain and loss. After losing my mother I became anorexic. I've always been slender but this was all about being able to control something in my life. I've had three serious bouts with anorexia in response to loss and stress and they have caused damage to my body. It was only after the loss of my sister 5 years ago and the therapy sessions provided by the hospice group that I was able to openly address my feelings and learn appropriate coping methods. Previously I had been the "rock" in my family, the one who dealt with all of the logistics of funeral planning, wrote the obituaries , informed extended family, coordinated hotels, held the wake and accomplished it by using tranquilizers and pushing my feelings deep down and caring for everyone else. I was stunned by the loss of my sister 3 weeks ago but this time I allowed myself to feel my feelings and grieve without medication. I'm still so very sad and I cry a lot but I know I'm doing what I need to do for me.

My apologies if I went off topic. I've never posted anything ever on any forum.

Carol

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Hi Carol, you have had a horrific time losing your family members. I can't imagine what it has done to you emotionally. To have coped with so much seems so unfair. You have taken on the role of organising so much it is not surprising that you are suffering illness yourself.

Thank you for posting your journey on this site. It has made me feel selfish to be so consumed by grief.

Take care of yourself and thanks again for showing your journey which has been so horrid.

I am sending love and hugs to you.

Pat x

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Carol thank you so much for your story. It has made me realise how lucky I am. You have had so many loved ones die and so young too?

Now you also have your husband to worry about in the midst of the grief you feel for all, but especially your sister who has recently died. How you are coping I don't know.

Thank you for replying and for your words. Your kindness has helped me.

Please feel free to post on here as we are all going through such pain and so are you. You also know only too well about PSP. If they find a treatment for it we will have a giant party on this site! I don't think they know much about PSP because (a) people have been misdiagnosed and still are!

(b) many people die from car crashes or other accidents and never appear in the stats.

(c) there is not enough money put into research.

I can recall at least two people who had members of their family die of PSP and they were people from this site. One had 2 members of their family diagnosed with it and one had 3. I remember saying that her family would be of interest to researchers but I don't know if she did anything about it.

So you are right to continue to see what research is going on. That applies to most of us with children/grandchildren? Not something you want to think of but maybe a reason to raise more money for research?

Take care Carol and a great big hug to you. I have cousins in CA by the way! Although I live in the UK but come from Ireland originally!

Lots of love to you and your husband, and indeed all the family.

Marie x

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Pat I am so glad to read your thoughts as like you I lost Liam on 15th November 2017 and I have been having a hard time thinking of allowing the doctors give Liam medication. Pat we have to understand our loved one needed medication to ease the pain. I know we didn't want to loose them but this horrible disease has no mercy and our loved ones need help. Like you I have been tormenting myself going over Liams final weeks in hospital. Should I have done anything different ? It's so hard to find peace and hope with time we can cope with everything. I too have grandchildren and the little things they say shows how much they loved their grandad and the lovely memories they have. Pat try and take care of yourself and remember to wonderful times you had with Les. Lovey photo very handsome man. All of us on this site who have lost our partners know how you feel. Big hugs Ronnie xxx

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Thank you Ronnie. Les was a handsome man and took pride on his appearance. I loved him so much. He was always there with a hug if I needed one and I needed quite a few. He was my life for 43 years, 41.5 of those we were married. I feel as though 50% of me is missing.

I can't get over him dying the way he did. PSP is an evil disease.

I will always love that man and pray for a medication to be found that will help those still living with PSP.

Sending you love and hugs

Pat x

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I lost my mum to PSP last February. It's so hard to accept and to move on because the pain and trauma is immense. i feel as if it's like some kind of post trumavtic stress as well as the sadness of grief, it's so incredibly hard to know how to deal with the emotions. And to try to explain to people it's hard. That's why this forum is so important.

My heart goes out to you all. It was terrible to loose my mum to this unforgiving illness but I can't imagine losing a partner to it.

Please don't feel guilty, try to focus on all the good times you spent together, the happy times before PSP.

The grief we feel is a testament to love we shared. Everyday I feel blessed to have been loved and cherished by my beautiful mum, and am blessed to have loved her so much. Take refuge in the love you shared and be kind to yourself.

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Thank you x

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Hi Baileyboo,

Like you, I lost my beloved husband to PSP, just around the same time that Marie lost her darling, so that 1 year anniversary is staring me in the face too.

The caregiver's guilt is a terrible, silent symptom of this awful disease. We all did the best we could, battling an uninformed medical fraternity, well meaning but 'unable to understand' friends and family members. And our own frailties too.

My husband admitted to me a few years into his illness that he had thought of committing suicide, just stepping into the road in front of a bus. It really shook me, as I really got an understanding of how devastated he was about his diagnosis. In the end I believe that he didn't do it because of me.

During his final weeks (he lasted 2 weeks from the last time he ate or drank anything), I battled with the process. When he developed a nasty bedsore and his body started to suffer, and we all told him repeatedly that he didn't have to hang on, that he could go, I was torn between releasing him from his poor PSP body, and him thinking I wanted him to go. Of course I didn't. Of course I wish that he'd never gotten ill and was with me still. I grieve his loss every single day and when I allow myself to feel the pain, it cuts as deeply today as it did 11 months ago. In the end, he passed peacefully at home, as I had promised. And yes, he was medicated, so he could be kept comfortable and pain free. And I don't feel guilty about that. I am grateful that modern medicine, that could do so little for him during his battle with PSP, could give him that gift, at the end.

The fact that you grieve and feel guilty is natural. It's because you loved him so much and wanted to do your best for him. And I'm sure that you did.

There is no easy way forward. People talk about grief as a process to get through. But I don't think that. Losing someone so special to you changes you. Your life will forever be divided into Before and After.

My only advice is to rest. Don't underestimate how much all of this has taken out of you. Don't think that you have to feel or be some way according to some process or formula. Your life is unique and so too, your journey now is as it must be. Be kind to yourself and remember the better times. He knew that you loved him and did your best for him.

Sending you a big hug xx

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Thank you Sawa

This is the most emotionally exhausting time. To love a person so much that they become part of your being is such a wonderful thing. The losing of that person is heart breaking and I feel as though I am existing only 50%. Sounds silly but it is so true.

Thankfully this site has people like you on it and you all understand the emptiness when a loved one leaves.

I am struggling with memories of Les's journey with this vile disease. He was everything to me.

My employer made me redundant on 4 January and the person I always went to for comfort wasn't there.

I was shocked that my employer took this stance because I spent time with my husband when he needed me most. I am fighting his decision so perhaps it is a good thing to occupy me.

Basically Les needed me and now because I didn't want to leave his side I have become unemployed. Life is horrid. I can hopefully beat this decision as it is very unfair.

Thank you for your reply and insight into your grief.

Take care

Love

Pat x

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Oh Pat, how terrible of your employer! It hardly seems fair but so few companies today seem to have any heart left.

I'm not sure if it's the same for anyone else, but over time memories of Jonathan's illness have receded somewhat. I can still think of the times he was ill, but they feel less emotional. And I remember him more now from before he was ill. I hope it's the same for you and that the Les you fell in love with comes back to you in time.

xx

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Thank you so much Sawa x

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Pat, I too became unemployed (I quit) when I had to become a full time caregiver. Now I face the demons that say that I can't do this - work my occupation let alone anything else....

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Amen SAWA

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Just about all of us go through this and continue to reflect on it from time to time, but good friends will always remind us that we did the best we could and that our loved one is in a far better place and no longer suffering with this evil disease.

My wife was in the hospital during her final 4 days of life, due to aspiration pneumonia. Her right lung was totally clogged and unresponsive to medications. They could have done surgery, but the doctors didn’t recommend it, due to her advanced stage of the disease. They said it would be a painful recovery, she may not survive it, and we’d probably be right back to this situation in a matter of weeks. So they convinced me to not consider surgery. Instead they administered drugs to keep her comfortable. We’re pretty sure during her last 2 days of life she was in a coma, as her oxygen levels had dropped so low, it would of affected her brain. But she would still show signs of discomfort at times, so I would ask the nurse to give another dose of morphine or Ativan. On the night she died, the nurse could tell she could use suctioning of the mouth and throat, but I told them to let her be. That was one of the hardest things I did in my life. I bet I suctioned my wife with our portable suction machine a 10,000 times during the past 3 years. To watch the flashing monitors and buzzers going off, while her oxygen and heart rate went to zero was one of those experiences you never forget. I had called our children about an hour prior and they got there about 15 minutes before she passed. We all got to say our goodbyes and it was actually peaceful. No struggling. No wincing. Ready to see her Lord Jesus Christ. I just wasn’t ready to let her go after 35 wonderful years of marriage.

My sweet Kim: 09/01/61 - 07/09/16

Ketchupman

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Hey Dan, good to here from you. Though readign your post invoked alot of painful memories. How can it not. B was surrounded by his children . Though they were asleep, He and I shared the exact moment together by ourselves....perhaps that was selfish of me but I needed those last few minutes alone with him.

How are you getting along?

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I’m doing ok. Hate this weather. I’m back up here in Louisville for awhile tending to my dad who came down with shingles last week. Really want him to come South and stay with me for awhile at the beach. Hope you’re doing well.

DAN

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Oh the shingles....ouch! Well I hope he finds that visiting you or living with you is a good thing for him.... The beach has it been as cold as the Carolina's. Have a friend who teaches. school has been sort of loaded with snow days.....

As for us, cold dry air so that it shrivels one up and blows them away! Humididty level in the teens the last few weeks, up to 60% today now my bones ache....never pleased...hahah

I wake up and I need to give my eyes a drink of water before I even have coffee...thank you Thera Tears....hahaha

((HUGS))

Andrea

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I am reading these posts with tears in my eyes because they All reflect my own feelings.Particularly feelings of shortcomings on my part during his last days. He spent his last 6 weeks in hospital and nursing home and I so dearly wish I could have brought him home. He was fighting to get well enough to come home.The medical community has so little understanding of PSP. I hope someday it will be different.

We were married for 53 years,and.having spent so much time together,I also feel that part of me is missing.I just hope and pray that he knew how much he meant to me.I wish I had said it to him more. I will be glad when the time comes that the good memories will drown out the pain.

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I think all of us who have lost our mate feel like you.

Chris died in October and my experience was so lucky in many ways but I still have the feelings you describe. Chris was home and made the decision to stop eating or drinking. I made the decision to accept this and not to give him anti-biotics. He had no pain and died within three days. In theory I agreed with all this but , when the time came I found it so hard to let him go. After 53 years I wasn't ready. I also wish I had told him more that I loved him. Every one says how well I did and how loving but it never seems enough.

This is how it is after a long time caring.

Like you I find myself crying a lot.

Big hug, Pat. We have survived so much and will survive this. We will not forget them but become accustomed to their physical absence.

love from Jean xx

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Thank you Jean. I hope that is true as the memories are punishing at the moment.

Pat x

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Find the good ones as well !

x

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I lost my husband a year ago on Christmas Eve. This past year has been filled with grief and it is probably never going to end, really. It does ease and the bouts are spaced further apart. It becomes easier to cope, I promise you.

When someone is so helpless and depends upon you, there will no doubt be guilt involved because there is something inside of us that believes we should’ve been able to save them. . That is, by far, the hardest thing I am dealing with. The guilt. The times I lost my temper, the times I first thought of myself instead of him, so many instances that have run through my mind.

It was just so hard, and really we suffer from the disease as well. That’s something you have to realize. You both had the disease.

When you gave up on your husband, or at least thought you did, you were really just giving up on the disease, not him. And I know in his heart he knew that. Unfortunately, PSP always wins in the end.

Be kind to yourself, forgive yourself, and know it is true. You did the best you could! There’s no way you could have saved him, and he knew that.

You’ll suffer post dramatic stress, most likely. Please get help if you think you need to. Going through what we’ve been through is no small thing, and most people just don’t understand how all encompassing and horrific it has been.

I hope your heart will find peace.

Hugs,

Horsegirl

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Thank you Horsegirl. It's true that we go through so much.

I made Les laugh on one occassion when I told him "the in sickness and I health" part of our vows did not cover PSP.

Those memories will last for ever.

Pat x

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Hi Pat, sorry I am late on patrol here, but something must be in the wind. I too, have been feeling low. So went to my ever loving sister for some TLC.

I know exactly how you feel. Steve died on my watch as well. I was his wife, I should have been able to stop PSP taking over him, stopped the way it took him away from me, bit by painful bit. I didn't, because none of us can. You didn't give Les this evil disease and the professionals have barely heard of it, much less found a cure yet.

PSP is a life limiting illness, which means the person is going to die from it. How can you or any of the rest of us feel guilty , because we can't do anything to cure our loved ones. You did not give upon Les, you gave permission for the doctor to administer drugs to keep him from being in pain. If you hadn't of done that, Les would have suffered, his death would not have been peaceful. That would have been letting him down, big style!!!

You are going through grief, unfortunately, it's very slow and long, there are no shortcuts, believe me I have searched high and low for some. At the moment you are coming out of the numb phase, everything is becoming very real. In walks the guilt with the pain. How can you be guilty, you cared and loved your husband until the end, what on earth is wrong with that??? I suggest the things you could be guilty of, is caring too much, loving too much, not telling him you loved him enough times.

PSP has taken a lot out of you personally. I am now just into my second year with out Steve and I still can feel the tiredness and exhaustion of caring. That's just the physical side. Mentally, well that's going to take years to sort. On top of that there is the grief.

Please don't beat yourself up with all this guilt, I know it is part and parcel of the grief process. You did your very best, I know that, everyone else does, I bet all our loved ones are up there comparing us, each saying they had the best carer that anyone could wish for. Les will be part of that conversation.

When I am low, I often remember how I wished I could have taken some of what PSP threw at Steve, to take his pain away. I am doing that now. I am suffering the pain, so he no longer needs to. I am proud of how I care for him, I am glad he doesn't suffer from PSP anymore. AND yes, just like you, my heart is broken, because I miss him so much.

Time is not the great healer everyone says it is, you just get use to feeling this way. That will happen eventually, not sure how long you have to wait, but life is slowly getting easier for me. It will for you as well.

One day at a time! One day at a time.

Sending big hug and much love

Lots of love

Anne

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Thank you Anne. This is so punishing for all of us who have lost loved ones.

I feel that some may think I am wallowing in self-pity. That isn't true I just loved him with every fibre of my being and I am struggling.

PSP has certainly taken a huge chunk out of our lives and after losing Les I feel rock bottom. I know life goes on and all of that, I just don't know when. I know you are right Anne;, I will find a way at some point. I'll let you all know when and if it happens.

Everything seems negative at the moment.

It has been snowing here today and I made an enormous pan of ham and vegetable broth. It was always a favourite with Les. I only had to half the amount of dumplings and that hurt too.

Now I intend starting the week more positively. It won't happen but sounds good. I will do my best to think nice things and some of the lovely memories we made together.

Thank you for replying Anne I don't know what I would do without the advice I receive from this site.

Love and hugs

Pat x

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Cooking....still haven't modified it to my needs.....I eat crackers...hahahah

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Nor do I, Pat!

Lots of love

Anne

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Anne,

I am so glad you can feel good about your care taking of Steve. You are an example to those who are still caring for their loved ones on this site.

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I worked my fingers to the bone for Steve. Got all the wrinkles and grey hair to prove it. I have nothing to reproach myself for, except................................................

Lots of love

Anne

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.....Now I'll be sitting on the edge of my seat waiting for your answer....

....oh who we fooling you were a great wife !

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Thank you for making me smile Andrea. It will be too uncomfortable to sit on the edge of your seat.

I tried to be the best wife I was able to and I know Les would be angry with me for all this self-doubt.

This week I will try not to wish I had done something or other differently. It's a challenge but I will give it a try.

Love and hugs to you

Pat x

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Using this site as a guide, especially Kevin and Liz, I had the talk(about what's probably coming) with my husband yesterday. We kept it on the light side. Not that there is one. We didn't go weepy, tho😐 One of the things we explored was him liking our life - he does and looks forward to the day. Yeah! The only thing he dosen't like and the thing that upsets him the most is when I get upset and blame myself for not being Ontop of everything - like forgetting the spoon for the cereal or turning my head for that critical second that results in a fall. He is forever gratefull and could never be disappointed with anything I do or judgement I make. I think he loves me. Today was a better day and I will try to give myself a break and maybe love me - He is NOT by any means judging me. The "being judged" is in my head from my deeply ingrained Catholic or any religious upbringing - I am the only judge that matters in my life and I'm judging myself pretty darn Great!!!! I don't want my husband to get upset by thinking otherwise!!!!

AliciaMaria☃️

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Good for you Alicia! How often it is our husbands just want us to be happy - and that makes THEM happy. Even the illness doesn't change that....

I hope you and hubby have still many happy moments together :-)

Anne G.

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Its true, Alicia. All my husband wanted was for me to smile and he was happy, although his life was so diminished. The criticism is all in our head !

x

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I am re giving you my post ( dated 2 months ago "My wonderful husband") when you lost your husband....

No matter how prepared we get, we are never ready for the inevitable. I am so sorry the love of your life has gone on, Pat. You both had less time with this disease, than did Bruce and I . One day or a thousands years , it's still sheer hell on everyone.

You will find the strength to start a new journey. ..Just ask most of us who have lost their loved ones in the last 19 months or so. As you take on these new days remember to let go of all guilt and "what ifs"...they will consume you til there is nothing left. Instead, take hold of the lovely memories before PSP and even ones that made your relationship more poignant during your daily care of Les. Now it's time (whenever that time may be) to make new and happy memories and a life full of joy....

Dear Les you must have been a great man to have such a wonderful wife. The last few moments as she held you close, gave you comfort to go on. And you gave her the comfort and courage to take on anything this life has to throw at us. Good bye my fellow brother in PSP Remember this world is not our home . we're just a passin' through.

Remember Pat that we are still hear for you and even better, God is still here for you....call on us .....

Do Well

AVB (Andrea)

Fear not for I am with you: be not dismayed; for I am thy God. I will strengthen thee, I will help thee; Yea I will uphold thee with the right hand of my righteousness. ..........Isaiah 41:10

Casting all your care upon Him , for He cares for you. I Peter 5:7

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Thank you Andrea. I guess we all eventually find a way to cope. Perhaps it is a little early for me as it is only weeks since Les left me. He didn't leave me in a good place as I loved him so much. I know neither of us wanted to let go but we did. It is so hard knowing when life gets a bit tough he isn't there to give me a reassuring hug.

I received a gift in the post last week and immediately said to our daughter "I wonder what dad will think of this" and sobbed. For a moment I forgot he is no longer here. This is where I find difficulty in coping. Physically Les is not here but I try to take comfort from believing he is here in spirit.

PSP comes through the door and normality leaves immediately. It takes its unrelenting toll on all of us.

I will eventually find a way of coping somewhere.

Thank you for you lovely words.

Pat x

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Pat,

I sent you my post that I wrote to you upon Les's passing. It may do you well to reread it. What you are feeling rihgt now rings so true with me. Infact for the first 5 months after Bruce's death, I was running on all burners trying to keep my chin up to the public. But I have crashed . I do not feel guilty, I just miss him sooo much.....The other day I verbalized to myself things that I knew in my cognitive mind but perhaps still denied in my heart. I want you to know that it is normal what ou are feeling....but PLEASE don't let guilt play a part of your memories.

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Thank you it's so difficult to not think of 'if only or 'what if'. I have to try and cope a little better and I am sure I will in time.

Love

Pat x

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Sorry about the repeat of this msg. I looked up when I was writing it, and it was gone! so I started over.....or I have dementia...yah why not throw that in as well...

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Pat I want you to know that what you are feeling is unfortunately so very normal. I held my chin up to the public since about October and then have crashed. The other day I said verbally to myself something that I had only kept in my cognitive my , but not my heart. I'ts been sooo harddd I really miss him but I must say I feel no guilt or remorse toward my care for him . I did my best , just like everyone else here did for their loved ones; just like you did for Les. It was not a bad thing to give him a medicine that eased his pain; you did not give up on him, he needed you and you were there for him; you eased his pain. Isn't that what we do with those we love , keep them as safe and comfortable as they can possibly be. Would you have really rathered him go to the great beyond in full ensconcement of pain....wouldn't his last question to you then be, where were you?...

Pat, rewrite your self chastisement to a celebration, ....."I eased his pain"......

Do well friend....no guilt; let it go.

Here is an assignment for you:

Andrea

for every negative thing you think of that you "caused" on your husband, write down as many positive things you did for your husband.

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Thank you

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Dearest Pat,

Don't know it this post was received, I don't see it.

So I send again.

journals.lww.com/neurologyn...

Please read and let me know you received it.

Much love,

Cuttercat

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I will read it a bit later as I have a Drs appt and have to rush.

Pat x

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Hi Cuttercat

What a true and realistic insight into grief. It takes different forms but is always there. Thank you for sending it, it shows that I might be a bit stupid but I'm not mad.

My work in every direction changed as my boss of 10 years made me redundant so my plan of losing some of my grief through work isn't going to happen. There are a few things he didn't look into and as I have I am going to win (I hope) a case for unfair dismissal. It will keep me occupied for a while. I had only been back from 2 January and made redundant on 4 January. His timing was horrid. I will do my best to make him pay.

Thank you again for the link it is so true.

Love and hugs to you

Pat x

PS it looks ad though I need surgery for my shoulder. Life gets better by the day.

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Yes, Pat that happened to me. Work gone and this is my full time job. Alas but we keep going.

Glad it was able to help a little bit.

Take care

Cuttercat

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Thank you

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Glad you got it dear one. Take care of yourself first.

Cuttercat

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I'm late into this one as I have been off the site for a few days mostly, but like so many have said, feeling that you did things wrong, or didn't do enough is a part of the grieving process.

I have felt so awful about some of the things I did or didn't do for David, and I know that I can't do anything about it, and it keeps coming back to haunt me again and again. But I also know that I can't change anything, and that I did what I could at the time.

You will come through it, it will take time, and it isn't easy, but there are so many of us on this site in different stages of the grieving process that you only to have to ask if you need advice, or shout out when you are having a bad day.

It's such a horrid disease, being so rare and so aggressive it tries to take both the sufferer and the carer with it, you are no doubt exhausted and need to take time to recover. It's been almost five months for me, and I'm still very tired, and my body is doing weird things, I think it's the exhaustion of the time spent caring now able to come out, along with the stress and emotion. You are probably suffering the same way. Keep smiling when you can, and keep going!

Hugs

Derek

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Thank you so much Derek. This site and the people on it are so caring.

I loved Les so much it hurts. I know I did as much as I could it just doesn't seem enough. The only positive I get from this is that Les is not suffering now. I so want him back but minus PSP.

My dear boss of 10 years decided to make me redundant on 4 January. The timing is so horrible. The reason he statedin an email is that I was off so much. Covered by sicknotes but he didn't think I should spend so much time with Les. He even asked me if the consultant knew what day would be the last. Takes some beating for the most callous remark.

I know my place was with Les and that was all I wanted to do. I don't have regrets in that I lost my job as I am suing him for unfair dismissal through redundancy. I desperately missed Les when this happened as he was the person I always went to when things went wrong.

I now have something to occupy my mind but it doesn't stop me remembering my husband.

Sorry for ranting on. This is the worst pain I will ever feel. I hope Les is just a whisper away now as I need him. He won't be far and I will alwaus talk to him.

Thank you for your reply it's a real comfort to talk here as I don't feel so alone.

Pat x

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Nothing in life hurts so much as these moments.

It does slowly start to get better but there is no set Timetable, we do it at our own pace.

But I promise, time does help you to learn to deal with things.

A wise person on this site told me soon after I lost David that "You don't get over the loss, you learn to live with it"

It's very true, and not as frightening as it sounds. Actually it's quite a sensible way to look at it.

Keep fighting the good fight 👍

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That is a good way to look at it.

I can't specify a time it will take as long as it takes.

I can't imagine what life has set out for me but I wish I still had my soul mate to comfort me when the going gets tough.

Thank you for your advice.

Love and hugs

Pat x

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Sorry to hear about your job. It seems so cruel of him. Can you find another one easily ? What about the others you worked with ?

Love and a big hug from Jean xx

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Hi Jean. I worked for a very small company. My boss translated legal documents from French into English and I typed them. There is one other person who does the admin. Peter is still going to send my work out to 2 other typists. Who work as freelancers. Fortunately he put that in writing and it shows that I was unfairly dismissed through redundancy. I am fighting it through ACAS. I hope it will get somewhere. The job still exists and is therefore not redundant. His excuse for this is that I took time off to be with Les. I would not change a minute of the time I was with Les who was far more important. I will keep you posted.

I am taking the opportunity to relax and spend time with my family which is lovely. We are all missing Les and talking openly about losing him which I hope is helping us all. Who knows. It's still early days.

Thank you so much for your reply. It means a lot to me. Everyone one this amazing site have been so supportive. This is the joy of being a member.

Love and hugs

Pat x

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Thats true. Chris died 3 months ago and I still look on here as these folk understand completely.

My lovely family also talk openly about Chris. We laugh and cry. Its our way of coming used to his absence.

love, Jean xx

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My love hasnt passed yet but I feel we are very close. I am really going to try to only focus on how lucky I was to have had him in my life as long as I did. How grateful I am for all that he taught me and how I loved his humor. I hope to remember all of the sights we saw and how happy he made me. The lists goes on. I can’t bear to think of him any other way.

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Nobody can advise you at this point. Just love him while he is with you. Nothing else matters.

I am so sorry that I can't say anything to help you. It is only 8 weeks since I lost my husband and soul mate. He was the most precious person and I shared 43 years with him. The first 18 months we were getting to know each other. As long as I live I will love him.

PSP is a cruel and vile disease that we can't stop taking our loved ones. Bit by bit it takes them. At the end I hated losing Les but he no longer had discomfort or pain. For this I am truly grateful but I hate not having him with me.

Make the most of your time together now.

My thoughts will be with you.

I am sending love and hugs

Pat x

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Pat, I was wondering g how you are doing. Hope you are taking care of yourself. I lost Larry two weeks ago. I am a mess but am trying to find a way get through the days better. Any advice? I am so sad for all of us here.

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I am so sorry to hear that Larry has passed. I know the pain of losing him will be so hard for you.

If only I could give you advice I would. It's just over 4 months since Les left me and each day is incredibly difficult. My doctor asked how he could help me and would I like to talk to someone. My reply was "I don't have anything to say and conversation is beyond me". I am in a bubble that protects me somehow. It would have been our 42nd wedding anniversary on 3rd April and I had a complete meltdown. It is the most horrendous feeling that is totally beyond anything I have had to deal with.

I am still grieving myself and I can't help you in any way. I know how helpless you will be feeling. How when people visit you will put on a brave face until they leave. You will get through it day by day. I am still in that phase and will be thinking of you. I have suffered with chest infections and can't understand when I have never been ill. It could be that I am no longer running around to be with Les and all the viruses have caught up with me.

You must look after yourself. I know that is difficult too but you need to. I am so sorry I haven't any advice as if I could help I would be so happy to pass it on to you. Take a day at a time is the only advice.

Larry would hate to think of you hurting so much. Which isn't any comfort but I know Les would be angry with me.

My heart goes out to you.

I am sending love and hugs to you and will be thinking of you as we both tread this horrid path.

Pat x

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Echo what you say, Pat. I just feel bereft. Like you I put on a good face but I am grieving and thats ok.

Big hug, Pat. Jean xx

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Thank you for the hug Jean I don't get those very much. Saying that my friend who lives opposite me gives me a hug when I see her.

I always knew I would get a hug from Les and on the Monday before he died he gave me the longest hug. Only with one arm but it was priceless. He died on the Wednesday.

Bereft is a strange word as it doesn't even cover what we are going through. To love someone as we have all loved our partners just doesn't describe how we feel.

We will plod on trying to cope with a brave face. Tough but necessary. Nobody can see how we have crumbled inside.

I am sending you a massive hug.

Take care of yourself

Love

Pat x

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Thank you, Pat.

Today I have been out with my son and his children. I can't tell them but I find it really hard because Chris was always such a " gentleman ". He held my hand and cared for me and I find I really miss him when out with them. I will have to get used to it I know but the future seems so empty, doesn't it ?

Love, Jean xxx

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It does Jean. I feel that 50% of me is missing. No matter what I feel alone and so lonely.

My son was taken into hospital on Sunday as his nose wouldn't stop bleeding. He has just come out of hospital today and everything is fine.

I have had 5 grandchildren staying we me ranging from 14 to 2 year old twins. The two little ones constantly look at photographs of Les and say that's Papa. Or they talk to me about him. It does dig deeply as we always looked after them but now it is just me. There's always that feeling of being alone.

It is going to be a tough journey that we all face when losing our partners.

Love and hugs

Pat x

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I know xxxxx

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