free at last

[daparose]

My beloved husband passed away at home in my arms in the early hours of Friday 5th December. It has been a long and painful journey that he bore with strength and dignity. I am happy that he is free at last and sad that he as left me behind.

[mrsfarringdon]

My thoughts and prayers are with you and your family at this sad time, god bless you all x

[jillannf6]

I a sorry thatyour. Husband has lost his fight but hope ucen reman strong iinthe Xmas period c & after

Doyou have family'.

Ll jill

[mombcd12343 in reply to jillannf6]

this is barbara. you were supposed to send me a letter?

[Didalju]

Wanted to express my sincere condolences, and to let you know that you are in my thoughts. Your husband's passing has freed him of his continual battle, and I pray for you that you can keep strong in this early stage. Please stay on the site and take comfort in all the loving support you have given your husband. God bless x

[daparose]

Thankyou for your kind thoughts and support it is a great comfort to know that you are thinking of me.

[Hidden]

So sorry to hear of your loss. As you say, your hubby is now free from the devastation of this disease. I'm sure he'll be greatly missed by you and family. Take care, and try and keep strong through your sadness and grief.

Tony

[laroux]

Sorry for your loss. prayers and hugs!

joan

[deew]

Sorry to hear of the loss of your dear husband.

Stay strong.

Deidre in BC

[lindsey48]

I am sorry for your loss and you are in my thoughts. Take care of yourself, Lindsey x

[littlesupermum]

Sorry for your loss. Thinking of you. Love Rachel x

[SharonAB]

Dear Daparose,

What a beautiful relationship you continued with your husband right to the end - Continue to hold the happy times with your husband in your heart. My thoughts are with you.

Regards, Alana - Western Australia

[marusela]

My father died last month, ( 84 years, 2 years PSP ) spent two months in the hospital by a brocoaspiracion and died without having been able to eat during that time. We donate his brain for a study of psp. Sorry lost yours

[jillannf6]

I am sorry that your husband fans gone from thos world but have u,family to help, Dover the difficukt e

Xmas period

Loljill

[Frosty]

Sorry for your loss and the emptyness you must feel. Thoughts and prayers are with you.

[Kathy]

Deepest and most heartfelt condolences xxx Words can't help - but the knowledge that we are all thinking of you might. Take care

Much love

Kathy xxx

[Hidden]

So sorry to hear your news. I wish you peace. Dianne x

[shasha]

i am so sorry to hear of your sad loss but know you take comfort in the fact that you were with him right through to the end - my love to you and yours

sharon

[Sharon637]

Sincere condolences for your loss. Thoughts and prayers are with you at this sad time xx

[wifemo]

My condolences also - keep strong and know that we are all thinking of you.

Mo

[groovychick]

Am thinking of you, and sending you a big hug and thoughts of peace and love. Hold onto those treasured memories tightly. He is finally free of PSP xxx

[Hidden]

To Daparose

I am thinking of you and of course your husband.

[Hidden]

Dear Daparose,

You darling girl, how sad you sound but as we all know the release from the suffering for our loved one is a huge comfort. How good that you were with him 'til the very end. We are all so powerless to do anything other than to accept, know that we have done our very best and then try to find the best way to carry on. Thinking of you. My Dad is now in hospital with aspirational sepsis and as I took him in my arms last night I thought, oh dear, how much more of this are you going to have to take. He has just been allowed to have thickened liquids but when I got to the ward his mouth was so dry as it was so hot there. I had in my pocket a soft jelly sweet and I bit him off the tiniest piece and offered it to him. It was orange flavoured. I said to him 'we are being very naughty!' He sucked it and it dissolved and he swallowed and he laughed and laughed, with great eye contact with me. It was wonderful! It was only the tiniest sliver of sweet. I gave him one more tiny, tiny bit and left him to sleep and happy.

[mombcd12343]

I am sorry to hear about your husband. I have a husband who says he only has to live one day longer than me. he does every thing for me. I don't know what I would do without him.

[shasha in reply to mombcd12343]

my husband is the same he does everything for me and i love him so very much

[easterncedar]

Dear Daparose, I wish you the comfort of the memories of the love you shared, and in knowing how much you gave your husband through the end of his life, also in knowing how many people are thinking of you today. Take care of yourself. Peace, Easterncedar

[NannaB]

You are in my thoughts and prayers at this sad time. May you know God's special peace at this difficult time. Big hugs.

Nanna B

[annielee1]

NannaB

I'm so sorry for your loss. I too lost my husband in Oct. he died peacefully in bed with me snuggled up to him. I too felt happy for him being able to finally rid himself of this terrible disease but I still miss him dearly. You are in my thoughts & prayers

annielee

[ultramodern]

my dear daparose...I think that your beloved hubby did win the battle with PSP...he got well rid of the dire disease

by going to a place of peace far away from the battleground he and you lived in for these past years.

Be strong, keep calm and try to carry on...despite Christmas coming along. So sorry. This is sadly the best and only present he could give his most loved and helping carer...finally allowing you some very well deserved respite if not a joyful one.

These Wintry months are going to be taking a toll amongst all those suffering PSP, I'm sure.

With you daparose in mind. My full sympathy.

best brian.

PS. I just want to thank marusla for her comment on her father's brain donation. Are there any other PSP Brain Bank donors in this loop?

[mrsbeenk in reply to ultramodern]

I think my dad and mom have discussed with Mayo in Rochester (MN, USA) to have my mom's donated. We are very rural and I'm sure she'll be with us another year. I hope the details work out! Such a horrid thing to suffer through!

[jimandsharynp]

I feel you pain. Now your caregiving duties are NOT over. Your caregiving needs to be focused on yourself in the days ahead. After all, that is what he would wish. Bless you.

Jimbo

[Peter3]

I'm so sorry hear your news, my thoughts and prayers are with you at this sad time.

Have strength to cope with the weeks to come and take Jimbo's advice and give some care to yourself.

Peter3.

[Hidden]

Dear Ultramodern,

Yes, we are registered for brain and spinal chord donation and anything else that they may want for PSP research. We are in the UK. Where are you? We are with Queen Square Brain Bank for Neurological Disorders, Institute of Neurology,London.

[summergirlx476]

Dear Daparose

I'm so sorry to hear of your great loss. Keep your memories close and heal yourself. We will all be here to help you through any difficulties, we are good listeners. I hope you have family to share sadness. Thinking of you you over the holidays.

Sending you love and light

Linda

[cawbird59]

I'm always so sad for the families that lose their loved one to this dreadful disease. If I may, I would like to ask a question to anyone who knows the answer.... How does one actually die from this disease? I was under the impression that it wasn't a terminal disease and that you die from complications due to pneumonia? My mother has PSP and is in the final stages. Not sure what to expect, would really appreciate knowing. Thank you.

[stitchandknit in reply to cawbird59]

We have just lost my dearest mother/mother in law, and she has been as well as could be expected for over 6 years, and just over the last couple of weeks she was severely constipated, and was unable to feed properly, via a peg, and she was chocking on her own saliva, we didn't have an autopsy, but the doctor said that it was probably due to pneumonia. Take care and hope your mother stays well. xx

[Springm]

Dear Daparose

So sorry to hear of your loss. Your courage and strength is an inspiration ! God bless you in the days ahead.

Mary

[Hidden]

Dear Cawbird59,

It sounds like your mother is round about the same stage as my father who is at the moment in hospital with aspirational sepsis. He has been under palliative care for 2 years but I cannot actually work out what this is supposed to 'look like' in terms of care. He has been in a nursing home and received no different care from anyone else and been allowed to suffer pain from dystonia and cramps an infinitum, ie with acceptance by care staff and social workers. I too have read that one does not die of the disease, but usually of some invasive infection like pneumonia or from starvation effects because they reach a stage when they cannot eat enough to keep them alive. I too do not know what to expect, and so it is difficult to prepare oneself. But my father is extremely tired and exhausted by it all, so maybe he will simply become too weak to swallow and the end will come like that , he will simply sleep and never wake up. He still has the swallowing reflex function but not strong and not reliably so. I do not think anyone can tell us what or how the end will show itself as it can be and is different for everyone. Complications arise also when the kidneys start to fail, if say for instance they have been on drugs for years, like my father or if the heart is weak. Sorry, not much help, struggling with it myself. I suppose dehydration could also play a part, and too, what parts of the brain become affected by the spread of the disease in the brain tissue areas which control the different body functions.

[cawbird59 in reply to Hidden]

Thank you Nader. What you have written is helpful, my mom has been under Hospice care for 18 months and they have been beyond wonderful to her... she also has a bad heart to make matters worse and is surviving with a pig valve replacement that has hung on since 1999... the longevity of a pig valve is maximum 10 years, it's pretty amazing. She has been "pocketing" food... does anyone know if that is because she fears swallowing it? It's as if she can feel that swallowing could be difficult so she pockets the food rather than risk choking... it's just so awful.

[Hidden]

Dear Cawbird59, Just a quick one as off to hospital to see Dad now. My Dad has what the consultant called a spastic tongue, which means he cannot actually move the food in his mouth like we do and sometimes food gets pouched between his cheeks and jaw bone inside his mouth. Could your Mum be having a similar problem?

[cawbird59 in reply to Hidden]

Hmmm.... this is quite possibly what is going on with her. The most recent problem in her mouth is Thrush. She has it pretty badly, have your dad ever experienced this?

[Hidden in reply to cawbird59]

Dear Cawbird59, If you can 'bring up' the posting from 6.12.13 'Are eye problems common?' from Manitoba, you will see that I have written a little bit on Thrush (candida or candidiasis). Yes, my dad did suffer from oral thrush too and it actually makes the mouth etc really sore and they feel really poorly with it

[CJ4466]

Daparose, so sorry for your loss. Thoughts are with you and your family x

[JoJo-K]

So sorry to hear your very sad news. I lost my lovely Mum 6th September, so still very raw for me with a lot of conflicting emotions. Please know you are in my thoughts. Please take care of yourself.

Warmest Regards

JoJo xxx

[nansh6]

I am so very sorry to hear about the loss of your husband. He is at peace now. I hope you too can find peace at this sad time xx

[thecatpebbles]

I am so very sorry to hear about the loss of your husband.

[daparose]

Thankyou to everyone that replied it as been a great comfort to know that people have been thinking about me. It was Jims funeral on Friday 13th everything went well. Today as been hard and I feel so sad but glad for Jim to be released from the terrible time he had. I have put up the Christmas Tree because I have grandchildren but it felt very strange to be putting up the tree without Jim here. I guess time will heal but right now everything feels very surreal. Thanks to you all once again.

[buttercup01 in reply to daparose]

I am so sorry for your loss keep strong.

[capsey31]

Deepest sympathy to you and your family. Try and take comfort from the fact that he is no longer battling this horrendous disease. God bless you all. x