PSP Association

7,281 members • 9,889 posts

My Husband Lost his battle with PSP

Bob lost the battle with this hideous disease Monday Jan. 25th. I had put him in a nursing home just a week before because it was no longer possible to care for him at home. He was 6’4” and I am 5’3” so it took two people to lift him and change him, I didn’t always have another person here...

I am so so very sad. Since 3:00 Monday morning I have been in a complete fog trying to navigate all the things that I must. Thanks to my sons I have help that is so appreciated and some friends.

We will be putting his ashes next to one of our grandchildren under a beautiful huge Oak tree on our ranch....facing the east morning sunrise. What this disease has done to our whole family is indescribable. I will say this it did give everyone the opportunity to love on him and also to say goodbye. Bob and I got closer than we ever had been because it was just us, no distractions and we talked and talked while he still could. I am so happy he is free and in the arms of the Lord. He would tell me, for sure, to be happy for him and that we will meet again, I know this but am so lonely at the moment.

80 Replies

•

I am so sorry for you loss. <3

💔thank you

My heart breaks for you and your family. May you find peace in your memories of happier times together. God bless you..........

Thank you....we are getting on okay with love from friends

So very sorry for your loss x

Xxx thank you 💔

I am so sorry for your loss and send you lots of love and hugs. Grief is a very lonely journey and is very difficult especially in these strange times that we find ourselves in. Take your time and be kind to yourself and know that we are all here for you.Love Sarahxxx

Thank you Sarah....grief is a very lonely path, I know time heals all wounds but gosh this is a deep cut 💔

Sending deepest condolences to you. He is now free from this horrendous disease. It's now time to be kind to yourself, particularly in these strangest of times.Sending love and hugs from afar.

Anne

Thank you Anne, it’s so nice to have a place to come where people actually KNOW what your talking about when you mention PSP...

Bob put up a gallant fight, I am so glad he is free 💔

A big hug.Luis

Thank you 🙏🏻

Don't worry everyone have to lose their fight against life no matter healthy or suffering from a chronic disease

So true! I so treasure the time we had to talk about all we wanted to and to say goodbye 💔

I am so sorry . My husband died the day after Christmas , the 26th of December . I was with him , listening to songs .. he quietly took his last breath to Leonard Cohen singing Dance me to the end of love . He was such an extraordinary person and we are all deeply grateful to him . Like you my family are there for me , I’d be lost without them .

His ashes are with me in the living room , waiting for the chance both weather wise and covid wise for us all to take him up to the west Pennines moors where there’s a memorial woodland . We will plant a tree, drink some chablis and sing rebel songs .

Oh my goodness your goodbye with your husband is so touching!

Where you plan to take his ashes sounds amazing....and rebel songs....how awesome...💔💋💔

Good wishes and love from England

💋💋💔

So very sorry for your loss, sending love and hugs xx

I am receiving your hugs 💔💔

😀

Love and strength to you xxx

Thank you 🙏🏻💔

Thinking of you & wishing you strength, be kind to yourself. xxx

I am so grateful for y’all 💔💔 I think I might get a pedicure for the first time in two years...my sister insists

Sending big hug and much loveLots of love

Anne

I receive it 💔💔

So very sorry for your loss x

Thank you 🙏🏻

Sending gentle hugs... Granni B

💔💔

So sorry for your loss sending hugs and love and well done for looking after him for so long what a horrid disease it is at least he’s free of it now take care of yourself xx

I won’t pretend that at times caring for Bob was so so so very hard....but I am so glad I did, I will always treasure some of that time and our conversations

I hear you they are not the same person and we try to carry on as normal talk to them normal but nothing is normal is it ? Just Pysically and mentally draining and now this ! Please don’t beat yourself up like we all do my husband is still struggling and I know I will be feeing bad for what I could’ve done better but hey we did it we looked after them battled for them argued with professionals over them got up in the night for them lifted them cancelled our stuff for them

Now I believe it’s your time I know you will miss him but someone once said to me “ your husband is not the man you married anymore “ so true

Hugs my friend take care xx

Hey I hear you. I lost my husband to PSP back in September 2019l , still I often think what if I hadn't taken him to the hospital, I would have been able to feed him. I was in hospital for 10 days and they would not let me even give him water to drink. It was so hard to just watch him and not do anything for him, for 10 days he just lay there .It still hurts a lot when I think back. Just like you say he was not the same person , yet I would argue with the PSW 's on how to handle him and care for his needs. I am so sorry that you are going through this. take time for yourself too.

Thinking of you take care

Thank you your poor thing having to go through all of that at the end that’s why I am considering a nursing home and hoping the care will be better at the end Where do you live ? maybe the last 10 days he wasn’t aware a d hopefully he slept a lot

Take care

Irene

I am so very sorry for your loss. Hugs and prayers.

Tim

Thank you Daddy, hope your doing okay, believe it or not I think of you and your posts, they have given me strength at times 💔

I’m so so sorry. I know but no words can change anything. Prayers for you and your family.

Cuttercat

Yes, it has to be going forward and I will so miss not having Bob with me in the journey I have left 💔

So sorry for your loss. Hope he's in a better place.

Yes I am thankful Bob is in a much better place now 💔

So very sorry for your loss, but glad he is at peace now.

So sorry for your loss. May you find peace in the memories and comfort from those around you as you grieve. The loneliness is surely uncomfortable and a strange place to find yourself after years of caring for your husband. Take your time, it will help you heal in days ahead. Be kind to yourself knowing that you cared for Bob with love and did all you could to help him cope with this life changing disease. Your description of his final resting place sounds amazing, I hope your find comfort in that. Hugs!!

I DO have some precious memories!

I love where we laid him, it’s beautiful and peaceful

I am so sorry for him, and for your loss. It is a painful time. How beautiful that his ashes can remain on the ranch that you both loved. Marilyn

Yes it is very peaceful

So sorry for your loss. Sending you warm healing hugs!

Thank you thank you 🙏🏻

So sorry for your loss. 🤗🙏

💔💔

So sorry for your loss. And may the memories give you happiness. X x

Lots and lots of memories 💔

I’m so so sorry for your loss . It’s nice to think you appreciated the time you had together. I plan to enjoy everyday now as life is special and precious. I will keep up and your family in my prayers

This disease is so awful because the mind is still there, it’s just not cooperating with the body, Bob knew what was going on but couldn’t change it, so I decided to treasure the time we had....I am no Angel, there were definitely times I was frustrated, exhausted and angry at the turn of events....but in the end I look at that time and am grateful

Sorry for your loss

Thank you 🙏🏻

It's a personal loss,but at the same time he is in a better place, than the suffering he indurad.

I am so thankful he is no longer suffering

endured. I have a question, he seemed so healthy. It took four years for the disease to progress? I was diagnosed five years. I'm told by my neurologist that I'm in my early to mid stages of the disease. I am truly sorry for the personal loss. As I said earlier (before I accidentally pressed the wrong button and two messages were sent), he is at peace.

Many blessings to you and your family.

😇

Thank you...

My sons and I were talking and we think there might have been small signs of the disease as much as 7 years ago....so strange. It was really only in the past 3 years that it got considerably worse and the last 6 months were really tough

♥️♥️♥️

Hi, I am so sorry this terrible disease was inflicted on Bob , you and the family. From the photo I can see he was a handsome gentleman. His resting place sounds lovely and he is now at peace, whole again. Grief is different for everyone, so deal with it in your own way and in your own time as there is no right or wrong way. Just be kind to yourself and take one day at a time.

Sending much love, Nanny857xx

Hi, i really dont think he/she meant it to sound as bad as it came out. Language can let us all down at times of stress but all farooq's posts have been about caring. If we are on this forum we are probably going through hell.

So so true....proof reading might help....I am a bit raw at the moment to say the least....

God love you. Thank heaven you have support. Xx

I wrote of my husband, my sons and our lose, we are devastated, I shared with this community because everyone on here has given me strength and love albeit from afar......what EVER you found insensitive is beyond my comprehension.....so all I have to say is as you probably already KNOW I would see your post and it would not be ignored amongst all the other sweet well wishes I have received.....so FORGIVE ME but screw you!

Yes I am lonely however having two wonderful sons has been such a comfort.....thank you for your post ❤️

I don't know what I'm ding wrong, but this is my 5th attempt to reply to your post. I realize that I replied to someone else!!!

I can only imagine the loneliness you must feel. From what you're describing it sounds like you had a caring and loving relationship.

Having your sons as a support is very important. A support from caring and loving people, is what everyone needs.

Sending warm hugs. May you begin your journey to healing, knowing that you're husband is looking down on you with loving and caring thoughts

Thank you 🙏🏻 💔💔

No doubt its a huge loss, but this was a way to give her the courage to withstand his loss and tell that life itself (even without PSP) is unreliable

So sorry for your loss. Sending you much love and hugs, Sarah xxx

Sending you my condolences, so happy you have your sons children are a lifesaver, grieve in your own way and time. Yvonne xxxx

I am so sorry for your loss....may you find peace knowing he is now free from PSP ❤️

so very sorry for your lost....stay strongMy wife passed from PSP on 11/06/2020

I posted her "final stage" problems...I got many replies & appears that the final stage varies among patients

Yes it does seem so, my husband’s vitals were really good an hour before he passed.

I had put him in a nursing home, he had only been there 10 days....I feel sad he was not home when it happened...

He could not feed himself and had started eating very little and of course could do nothing but talk very softly....it took such a toll on him

I am so sorry for your loss. Cherish the memories

So Very Sorry for your loss..Prayers all around.

Very sorry for your loss. Now is the time to care for yourself xx

My sincere condolences. My husband, also Bob, just passed on Jan 24th of PSP. I found myself grieving of my husband before. I miss his presence. I will not grieve for he is no longer suffering. I pray to meet his old self when it's my turn to leave.I pray for your comfort and peace. We are care sisters of this horrible disease.XO

Thank you so much 💔

PSP Association

Home

About

Posts

Members

My Husband Lost his battle with PSP

You may also like...

I lost my husband on April 5th after a 4 year battle with the horible, cruel disease that is PSP.

MY HUSBAND JUST DIAGNOSED WITH PSP

My husbands battle

just lost my mum to PSP

My husband won’t stay in his chair.

Related Posts

Supporting the community

Popular Posts

My Husband Lost his battle with PSP - PSP Association

PSP Association

Not what you're looking for?

You may also like...

Related Posts

Supporting the community

Popular Posts