I have never posted much on here but feel that everyone here will understand me,after my last post where George was very sleepy he gradually got worse,doctors nurses,and more doctors and tests showed no sign of infection,he didn't seem in pain. after a week my sons thought we should take him to a&e which was a nightmare,after spending night in cubicle I was told they didn't have a bed and as they could find nothing I decided to take George home.the next few days he didn't want to eat or drink and was hardly saying a word I was giving yoghurt and smoothies and any fluid I could,I asked if George could have iv drip or even nasel feeling tube but was told not possible,in desperation I asked hospice to please take him in just for couple of days just for fluid and was told they would call me next day,I finally got GP to call hospital at home who agreed to give George drip at home plus antibiotics. All this finally took it's toll and when hospital in the home arrived the next morning George was breathing heavily and was completely out of it,I could go on and on about it all but my Husband died that evening a week ago tomorrow.I am relieved for him,I am also devastated for me,he never complained so I feel guilty for moaning at him at times like struggling to clean him after toilet and so on,all these things that only others on here would understand ,we struggled with this terrible illness for 5 years,less than some I imagine,but it takes away all your life,all the thing's we wanted to do and couldn't do and now he has gone and I'm left behind at a complete loss a week before Xmas, I can honestly say I would not wish my lovely husband back to suffer anymore,and he did that in silence but I just want to say treasure the moments that you can be close because they are the times you will remember. Peace love and best wishes to you all,may you all keep up your inner strength wherever you get it from. Merry Christmas love lindy x
Goodbye to my darling husband George - PSP Association
Goodbye to my darling husband George
Hi Lindy21, Am so sorry for your loss.
Now you have time to think, you will see mistakes you think you made, and caring times where you fell short of your expectation. With time and hindsight, we all do! Don't dwell on them! You saw the journey through to the end and stayed by your man's side! You should be proud you have done this! It takes its toll afterwards!
We are all pioneers in this journey through PSP/CBD/MSA. No-one, except those of us here, really understands what we have been through.
I hope you can find the way to coast through Christmas this year, with help from friends and family.
We will be here when you need us! Take care of yourself now!
Big hug!
Jen xxx
Prayers for you. MERRY CHRISTMAS!
Dear Lindy, I am very sorry for your terrible loss. That you had to fight so hard for help is impossible to justify.
I know how you feel, as my man also never complained, and I was the moaner. But you and I were struggling, as you say, and we did manage to love and care despite it all. Try to remember the good you did, and the love you shared. Be kind to yourself and rest. Love and peace, ec
Lindy I am so sorry for your loss. I too have just lost my hubby and know all the feelings you are going through. There=is no good time to lose a loved one but at Christmas it seems just that bit worse. Thinking of you and all the BRAVE PSP suffers. Love Jxx
So sorry Lindy.
I feel all the things you describe. I think its inevitable when you have shared this journey that at first you remember all the difficult times. I hope it will get better and more in balance but Christmas first and you join many of us who are trying to locate their inner strength.
Love from Jean xx
I'm so sorry to hear that you lost your dear husband and just before Christmas makes it that bit more difficult. It sounds quite traumatic trying to get help for him but I'm sure you will find cmfort that he died peacefully at home in the end. My thoughts and love go out to you Lindy and hope that you are surrounded by family and friends to help you through your grieving. I hope your Christmas is the best it can be and that you will have quiet times to be with your thoughts.
Sending love and a virtual hug
Kate xxx
I'm so sorry for your loss 💔😢😢
So sorry to hear of his death. It is exhausting dealing with the disease. You did all you could. Time to take care of yourself.
Lindy I am so very sorry. You have been to hell and back. As so many others have been.
We all try our best and I know you did too. Nobody is perfect and we are all grumpy at times. Even with the person we love.
Please don't beat yourself up. Remember the good days. We all had those too. We just forget them in the mystery of losing our loved one.
God Bless and may George RIP. Take care of yourself and be kinder to yourself.
By the way having George die at home was the right thing to do. Believe me he wouldn't have been treated any better in hospital. My husband died in hospital and I wish with all my heart he hadn't.
God Bless and take care. May George RIP free of PSP. That is the real vilian here. Not you!
Marie x
Dear Lindy, I am so sorry to hear that George has passed away. May he rest in peace, finally free from this evil disease.
Of course you shouted at him, moaned when things got to hard to cope with. Hands up anyone that didn't!!! PSP did that to you, not George and certainly not you failing. I too, am so relieved that Steve is no longer suffering. Of course i am hurting, but watching him die, bit by bit for all those years, was cruel beyond measure, on both of us.
Time to put all your hard learnt caring skills, on yourself. Rest lots, be kind to yourself. Eventually, you will learn to smile again.
Lots of love
Anne
So many tragic losses because this horrible disease .
My hearts go out to you and your family. Do hope your heart heals in time.
Hugs
Dear Lindy,
My condolences on the loss of your George. You sound like a wonderful mate who was there doing everything possible for him until the last moment. Although he was unfortunate in his disease, he was fortunate to have a loving committed spouse. Bless you over Christmas and hope you find peace.
Anne G.
Goodbye George, suffering in silence not only describes the man , but describes the disease. However, your loved ones may have been screaming! Now it is silent . You are where you need to be. We will take care of your lovely lindy....we will be here for her. I know you must have been a good husband to have such a caring wife; and your family who dropped everything to be with you proves you probably did and would have done the same for them....beautiful man.
Dear Lindy, thank you for sharing the last struggle for George. You have been a strong wife, you knew what he needed, and made sure he received it, even at the expense of your own needs....beautiful wife. Now comes the journey to become that beautiful woman that all of us (women) need . remember that we are hear for you but more importantly , remember that God is here for you . If you don't feel like typing (or even if you do), then just start talkin' to Him and He will get you through this. I am not going to tell you this new journey is easy, but I will tell you it is doable.... pray scream cry, write to us, ask your children for support whatever it takes; take it , do it , feel it,
Love , Andrea
God is our refuge and strength, a very present help in trouble. Psalm 46:1
When my spirit was overwhelmed within me , thou knew my path. Psalm 14:23
For You are my lamp O Lord; and the Lord will lighten my darkness. II Samuel 22:29
Oh Lindy I am so sorry for your loss. I know how it feels (its only 5 weeks since I lost Liz) but rest assured he loved you for all the care and love you gave him. I was more fortunate than you in that I had more and more help and support from the medical professionals but it does not make the devastation any less. Lets be thankful that our loved ones are no longer suffering this evil illness and are now at peace. Time to think of yourself now so keep all the good memories uppermost in your mind. I pray you can have a peaceful Christmas. Take care and may God Bless you.
Peace and love to you.
Your post has really choked me up...I'm sorry you had such a fight to get support in the last week. I hope some comfort that he was at home when he passed.
Thinking of you and may happy memories fill your mind in time to come. You did the absolute best you could. Time to now give yourself lots of tlc
X
Sharing a tear with you -- I'm so sorry for your loss.
I'm so very sorry for your heart to be broken here at Christmas!! George however is no longer in the grip of this horid condition! Hoping for a smooth transition for you into your next phase of life! It's my Brother who is affected by this disease so I know it's not quite the same as a spouse, but I'm hoping that he won't suffer for an extended period. It would be different if the prognosis was hopeful with this condition, but we've faced it, it's just not! I'm focused on doing my very best for him now and knowing that as the end approaches I'll do what's best for him without thinking of myself for his nightmare of this illness to be over!! Bless you for doing all you could for George and Please take comfort in knowing that he is finally free!! Try your best to have a good Xmas, your life must go on!!!
Hi Lindy. So sorry for your loss it's so hard to come to terms with it all. PSP is such a terrible disease and the fight we all have to take care and get treatment for our loved ones. I am sure your feeling are all over the place, glad he is not suffering, yet wanting him with you. Liam died 15th Nov in hospital and he struggled so much in the end. For their sake we must try and move on but it's going to be very hard as our whole life for years was taking care of them. Big hugs and take care. Ronnie xx
Thanks to everyone who replied to my post,it really means a lot to have people to talk to who really understand how awful Psp is because nobody else understands,I pray for all suffering these kind of illnesses and pray that one day soon a cure is found,God bless you all,hope everyone can have a happy and peaceful Christmas love Lindy .
Such a sad time and your email was so poignant. I know the guilt of the times we have to do things we don't want to but you did everything the right way. PSP is the culprit. I have a new PSP anacronimn "Pretty Sad Predicament"
Bless you
Cuttercat
Dear Lindy so sorry to hear that you have lost your dear husband but be comforted to know he no longer has to suffer. There seems to have been many of the sufferers who have finally given up the fight at the end of this year. It will be a difficult time for you, take time to grieve and I am sending love and support your way as many others have done. Be kind to yourself.
Love kate xxx
Lindy21, you have my sympathy. I'm going on 1 month tomorrow that I lost my husband. I can relate to the feelings of guilt, wishing I wouldn't have gotten upset with him at times. Deep down I knew he couldn't help it but I was so burnt out from taking care of him, it seems like I would take it out of him. So many regrets now that he's gone, but I have to keep telling myself I did my best! I'm spending Christmas Eve by myself and had a very emotional day today. Oh my heart just aches!
Hugs and love sent to you.
A mirror of so many on this site,I do hope your heart will heal in time.
(((Hugs)))
Dee
Missing my hubby
My darling husband is now at rest
Goodbye my love
