PSP Association
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Update on Michael...CBD

Having read Cuttercut's post, I am tearfully moved to share. Today I signed the papers for the love of my life to be placed on hospice. CBD is not going to win. I pray he won't have the suffering it tries to inflict. I am shattered yet believe this is right. He probably has 1 to 2 weeks left with us. How quickly the time went in hindsight.

Are we ready to say goodbye? Not even close. How do you let go of the love of your life, the person who is closest to you, your partner and best friend? I am so afraid. My heart is just shattered. I want to hold on but I know how selfish that is and don't want him hurt anymore.

It was only yesterday that this wonderful man came into my life. He was a father raising 3 boys after his wife left, and I was raising a girl and a boy after my husband left. We blended this Brady Bunch together and raised them in a healthy home. The children learned all sorts of things living on a small farm. They learned that in the middle of the night when the cows got out, you went out into the fields together and rounded them up. They found that chickens laid eggs, not the grocery store, and, yes, the chickens would peck at your legs. We held baby piggies, sheep, cats and dogs. Michael taught us all of that. The children learned a good work ethic from their father.

Michael was a Navy man. After discharge he worked in the family business owning a tavern. After his parents passing, he and his sister ran it themselves until they decided to sell. During all those years in the bar, Michael came home from work and did all the farming, planting acres of produce and hay and took care of the animals. Because I was working very long hours in my business, he also cooked dinner for the family every week night. He was a marvelous example for our kids.

Michael is kind, generous and loving. He would give you the shirt off of his back even if he had none to wear himself. His disease can't be cured but he chose to donate his brain so that maybe the next person might be saved. That's him, my wonderful husband. How do I say goodbye?

He taught me what true love is, what respect for each other feels like, what it's like to be unconditionally loved. We are blessed to have this relationship and are very grateful. How do I let go?

I don't know how to get through the coming weeks and months, but I know it will include you. Thanks for letting me share parts of this man with you. We are all people with a story, not just a disease and it doesn't have to define us.

Love you guys,

Liz

PS. I'd post a picture but don't know how.

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Dear Liz,

Your post brought tears to my eyes - Michael sounds like the most wonderful man! It is so cruel and unfair how PSP & CBD take the best people we know and brutalize them :-(

Courage and strength to you over the coming weeks. We will keep a lookout for your posts and we will be here for you.

Big big Hugs XXX

Anne G.

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What a wonderful man you found! You and your blended family will have so many happy memories to fall back on together.

I hope that having him in Hospice care will mean his needs are met and that the stress on you will also be minimal. Have seen hospice working here and all is so peaceful and relaxed.

As Shakespeare said " Better to have loved and lost than never to have loved at all". We don't all find that "soul mate". You have and you will have that bond in peace through to the end.

My thoughts are with you. Big Hugs to you both.

Jen xxx

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This is just the most devastating disease.

It sounds like you two worked together to create a wonderful life .

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Tears in my eyes reading your post. You and your family have wonderful memories to recall, some of which will make you cry and many to make you laugh. Thinking of you. Love Jxx

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He sounds lovely. You were both lucky to have found each other, even though it feels too short.

I know the pain you are experiencing now and my thoughts are with you all.

There are still precious moments at this time.

Big hug from Jean xxx

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Sending hugs through the tears he sounds like a wonderful man xxx

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Dear Liz you are a wonderful courageous person, you like so many others don't deserve this, you are losing the love of your life and the next few weeks will be challenging.All i can say is be strong, remember the good happy times you had with Michael, God bless , Peter and Kathy

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Dear Liz, what a wonderful post, so full of love. In my experience these last days were the most precious of all, in our life together. Unfortunately we all have to die, and for all PSP's faults, it does provide a peaceful way out.

Now Michael is being cared for by others, you can go back to the most important thing, being his wife. Sit with him, hold his hand, tell him you love him, talk to him, tell him the things you have just told us. To let Michael depart this world in your arms, is the greatest gift you can possibly give. This knowledge and his love will help you over the coming months.

We will be here, to give support, pick you up when you fall, listen to your rants and hold you during the tears. As always, you are not alone, we have our arms around you, sending all the stength we can.

Sending big hug, lots of strength and much love.

Lots of love

Anne

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Hello Liz

I don't really know how to respond to such a beautiful and sad post.

Michael and you sound like wonderful people. Such a tremendous life you have led together.

It will not end when he has gone, though it must seem unimaginable, living without him. My heart goes out to you both.

I wish you both the very best at this horrible time.

I will light a candle for you both.

Warmly

Kevin

xx

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You were lucky to have found each other and had the time you had together. Many people never have what you have. It will be a profound and unfortunately painful loss.

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Liz what a beautiful love letter to your man. You have paid him such a great tribute by sharing your life and that of your children with us all. It honestly sounds like a fairy story. I still believe in them even though I am too old to! I love how your family came together and how your children learnt that eggs don't come from shops but from chickens! So many kids grow up not knowing that! They grew up in a loving home with good role models. Who can ask for more?

This wonderful man doesn't deserve this but nobody does Liz. Goodness knows why all the people who cause such grief go on and on and some of the nicest and most decent people alive get these awful conditions? There is no rhyme or reason to it?

One thing I do know is he is so lucky to have you. As Heady said now is the time to let others do the caring and for you to be his wife. Cuddle him and tell him how much you love him. Thinking of you both with tears in my eyes here. I have been there too.

A great big hug to you Liz. We will always be here for you to help you through the bad times.

Marie x

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Such a heartfelt post.

Everyone has already said , more eloquently than I could, such supportive and comforting replies.

Thinking of you both and I hope that the remaining time you have is filled with love and peace and that you are able to be the love of his life until his journey ends.

X

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Dear Liz, I am so sorry.

I greatly appreciate the description of your husband when he was well. On this site, rightly so, we mostly share and read of what is happening in the illness. He sounds wonderful, and i'm glad, through your sharing, that I got a glimpse of him in health.

I lost my 55 year old son to PSP May 4, 2017. A year ago. I too live in the states....Los Angeles. My son was under Kaiser Permanente (ACA). He had lost his health insurance when he could no longer teach. Kaiser Hospice provided greater care than the palliative care was able.

For me, no matter how prepared I thought I was, when my son died I found I was NOT prepared. I believe that the grief is all part of PSP. I hope as time provides that you will share.

Prayers to you and your family

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Thinking of you in this difficult times.

Mx

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Many thanks to all of you for your supportive messages. This is the only place I can go where someone really understands what it's like to live with this disease. I'm sorry for those who do not know of it.

All of your shares were very comforting and I feel as though I have my own cheerleaders as I will cheer you on when you need it. In spite of never having met any of you, I feel as though you are my friends. THANK YOU!!

Liz

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I feel the same way Liz: This community are very special friends indeed :-)

Anne G.

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Oh Liz

What a beautiful letter and tribute to your wonderful man.

You will get the strength you need from your beautiful family and memories of happier times.

I mourn every evening for my lovely husband who has PSP and for the loss of my life companion.

Take heart, with love and prayers.

AnneandChris x

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I certainly understand those feelings. Thank you for sharing.

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You are so right. You have put it so simply , yet beautifully. I mourn the loss of my husband , yet he is sitting beside me. I also worry about what will comes next.

Peace , luck and prayers to you and love.

Karyn

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Your post has made me cry but what a wonderful life you have had. Unless your partner has this disease no one knows how hard it it to watch them lose their independence. I know how wonderful a Hospice is. Mikey could not have the care in a hospital. Just savour every hour with him and we are all thinking of you xx

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Thanks!

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when i read this i feel like we are talking about the same man it is hard no words can describe it i miss him so much still it is a cruel illness your path will be fill of heart ache but i find it helpfull when i talk about him and not look at the ilness my prayers will be with you and hope you and your family find peace not very good at words please if you ever need to talk im always here and i no that you will be ey his side on his journy

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Dear Liz,

Thanks for sharing such intimate feelings.

It is sad that a story of such beautiful and extraordinary coexistence is interrupted by a cruel illness. Some missionary friends in Africa told me that the important point is to do things with love and respect for others, that good actions endure and silently make a better world.

From your message it is clear that if you look back you can see that what you have both sown shines with its own light. It's great to be able to make that balance

.

A big hug.

Luis

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Such a lovely post, brought tears to my eyes what a wonderful person your husband is. Big hugs Yvonne xxxxx

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Wow. Thank you.

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Liz, that you for sharing your beautiful post. You and your family will be in my thoughts and prayers.

Ketchupman

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Don't say goodbye because he is never going to leave you nor you him , just au revoir will do .

Georgepa

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Lovely message Liz . This site will help regards Jo x

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We're here for you xx

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My heart breaks for you. Your story brought me to tears. I'm sorry your family has to endure this type of pain. What a great man he must be. Hopefully with his generosity of donating his brain we'll be one step closer to finding a cure or a cause so maybe we can find ways of preventing it. Hugs and prayers to you all.

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I pray for new discoveries regarding these diseases. Would be so welcome to beat it!

Thanks to everyone for your posts. If I didn't respond, pls know I appreciate every word written.

Hugs,

Liz

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Aw Mikey,

I am so sorry and understand completely! The respect part of love is the greatest and the unconditional love we will lose is the hardest. But I keep telling myself, I will live on memories and his love for me. It's what's keeping me going, and my faith.

Michael sounds like Charles, giving, loving and capable. Always working hard for his family. He is still worried about me and wants to help in any way he can. I think Michael is like that as well.

I'm teary-eyed now so I'll sign off, but keep posting, we'll get through this!

Cuttercat

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We will...together. So sorry you are going through this as well. Can not even imagine the months to come. Thanks for being here, one hour at a time.

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I have no words to help you face this trial. But please know that you and Michael are in my prayers. At some point, I will be at the same place you are now. I hope I will have your strength.

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I can hardly see what I am writing with eyes filled with tears. Such a beautifully written post. I can feel such deep love and loss. It is all so sad with our loved ones and we are never ready for the inevitable. We are here for you. Nancyxxx

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I am so, so sorry that you have reached this horrible stage in a horrible, horrible disease. A beautiful story of true, unconditional love. I have gone through it with my dear wife Liz and it is painful, but we somehow find the strength to go on. It is so lonely without her but I am surrounded by photographs of happy times and they keep me going. Do not say goodbye to him, for he will be with you forever. I will offer prayers that you receive strength and courage to face these final days. Sending a big hug to you. God Bless you all. George

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Thank you, George. I'll put up pictures of happy times.

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Absolutely brilliant words, I am still going through similar. Leon deteriorates daily, I honestly do not know how he keeps on keeping on, Hugs and thoughts are with you Marg H from Australia

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And with you Marg. One hour or minute at a time is all we can do.

Big hug back. Liz

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Thinking of you daily, Liz.

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Thanks. 💕

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Hi Liz

I cry right alongside with you

To see our beautiful healthy life loving husbands/wives go through this rotten horrible debilitating disease just shatters me to my core..

Stay strong and enjoy your limited but treasured time with your man and give him a cuddle from us Barry and Kim xxx

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Thanks. Will do. Prayers for you and Kim. This is awful.

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As with everyone else who has replied to your post it moved me enormously. There is no doubt at all that your husband knows how much you love him and all you can do is keep loving him in these next days and weeks. My heart breaks for you but you will find a way through. I lost my Mum to PSP a few days ago and I can reassure you that the end is peaceful and dignified. This caring community is so important to everyone on here. We all know how cruel and difficult it is to care for and cope with everything PSP and CBD throws. Much love to you and your remarkable family. Love Steph xxxx

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Am just so sorry and sad for you. I have PSP and am often irritable with my lovely husband. Having read your post at least twice, I have resolved to take into consideration how he must be feeling.

If I succeed, your lovely, but desperately sad post will have achieved something. Thank you

Ann

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My hearts aches and breaks for you - both. xx

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Liz- My sister recently Passed from CBD. Up until the last days she was fighting to stay with us - but she was struggling so much just to breathe. Once her daughters were by her side we all decided to hold her hand and tell her that it was 'ok' to go. We told her we loved her and that we would never forget her. We told her that we would always remember the great times and hold her memory close to our heart. We said all these things with a brave face but tears rolling down our face. We know she understood us... because before she died, tears flowed from her eyes too. Yes we told her she needed to go - to stop suffering- but it was so very difficult for us to let her go. It is still hard to believe she is gone. The picture of us was taken just one year prior to her death.

Liz - You will have to be strong - I know you will be. You story about Mike and your life together tells me that you both are strong. Thank you for sharing it with everyone on this site and know that we are all going through what you are going through.

~Elizabeth

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Thank you for sharing this, Elizabeth. Michael has no breathing problems, but isn't swallowing much. He did take 6 oz of fluid today but no food for 3 days. I think I tell you this because I want to think he isn't at the end.

I am afraid to tell him it's ok to go. I don't want him to think I've given up hope because I don't think he has. If I said it and he cried too, I don't think I could handle that. I would drive myself crazy trying to figure out his thoughts. I'm already trying to make words out of his sounds. He was adamantly "speaking" today but I couldn't decipher anything.

I'm so scared to lose him. My blood pressure is up, heart rhythm is erratic and I already have a heart problem. Started seeing a therapist to deal with grief and loss. And on top of this, Michael was given last rites today. I guess I am holding on by my fingernails. Just lost.

Sorry to dump on you.

So sorry about your sister.

Hugs, Liz

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Thats exactly how I felt, Liz.

Big hug from me. Its a horrible place.

Jean xxx

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My sister started having problem swolling in late February. We mananged to get about 6-8 oz of nutritional supplement drinks in her by way of a syringe. She would sometimes be successful with a ripe banana- but only a few bites. She was loosing weight fast- she only weighed about 70 pounds when she passed. Then on aptil 29th she was so exhausted she could not support her weight and i had to carry her to bed... up to this date she was still sitting in a chair for a few hours a day listening to music- and could walk with someone supporting her. It was on this date that she started to breathe very shallowly through her mouth . I could not get any food in her from this point on. I knew we only had days - and brought the family together... when melissa could talk early in her diagnosis- she wanted to talk about what would happen at the end- but i only said "melissa we have not crossed that bridge yet--- we need to focus on living"

Liz- i am crying right now for what you are going through and what my family has just experienced- it is still so hard. I hope by sharing Melissa's last days will give you a hint at the signs to know where you and mike are at this point.

Elizabeth (people call me Liz too)

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Thank you, Liz. Michael hasn't begun shallow breathing yet, so I'll watch for that. It's so hard to just sit and watch for signs but it seems all I can do. This is day 4 without food and only 6 oz yesterday if the aide is correct.

It's helpful to read what others experienced at the end so I can be aware of things More. I'll keep you posted.

Hugs, Liz

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My dear Liz, please don’t beat yourself up about it. Like you, I was devastated, having to admit that after years of caring for my lovely husband, I had to have him admitted to a nursing home, as his needs and pain control were no longer within my capabilities.

In retrospect, it was a very good thing. I could concentrate in just being there with him, talking or reading to him, sitting holding his hand, telling him how much I loved him, or just listening to the radio or TV together. The nurses dealt with all his medical needs, treating him with respect and in a very friendly way. My husband and I spent more time together than we did at home, as I had nothing to do but to be with him. I spent many days at his side, not worrying about medications, washing, feeding etc. We just relaxed together.

There were lots of visitors. More than we had at home. People would pop in to see us while they were out and about. When B. was at home , they were courteous enough to ring first, as they knew how busy I was. Some, just rang to see how things were, as they didn’t want to put more pressure on me by visiting. When he was in the home, they felt free to pop in at any time. Often getting a cup of tea by the friendly staff.

Savour these last few weeks. Enjoy your time together. The inevitable will happen and although you have been expecting it, you will find it difficult to grasp when it does. You will want him back, but would not want him back suffering as he did. Even though you will have already been grieving the loss of the husband you married, as his illness has progressed, you will continue to grieve after he has gone. Make some good memories now to remember, even if it is just stroking his hand talking about the good times, telling him how much you love him.

One thing that I had done before B. was in the final stages of PSP, was to put up a selection of our wedding pictures in a frame. It had a therapeutic effect, as it made me realise that time had not flown, that we had had a full and rich married life together. We were in our 50th year, this year. He died in January.

So concentrate on the here and now, Li z. You obviously love one another greatly. You grieve because you have loved. I know it’s a cliche, but in my opinion, it really is better to have loved and lost, than never to have loved at all.

I still talk to B. every day. I believe he is waiting for me, when it is my turn to go, it’s a great consolation to me. I hope it will be to you too.

Much love. You are doing the best that you can, as you have always done, dealing with this very difficult situation. I wish I could be there to give you a big hug.

Love and God bless. Rx

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