Today it really felt like the dreaded holiday depression has arrived. So now we head into the cold windy season, without my love to keep me warm. And I find myself weeping as my husband (PSP seven years) is in another room having an incoherent conversation with himself and his hallucinated friends. He is trying painfully to explain one of his books, a complicated study that he wrote years ago. And to hear him struggling, in this hallucinated conversation started me crying. Sometimes I can't stand the grief of losing him this way. To see what has become of this man now and how many more years this will continue. I fear that I will forget the man he was and only see him as what he is now and even worse who I've become in relationship to him. Will I forget that we loved each other. And it keeps getting worse and worse and worse in the slow relentless manner of a science fiction horror film where some alien thing has come and taken over your partner's soul and only you know.
So into Thanksgiving, Christmas, our forty-sixth wedding anniversary, and New Years. There is no easy way around this; he is severely demented, bent over, shrunken, shuffling , wild-eyed, befuddled, 100% dependent, in distress, anxious, miserable all of the time, confused, tense, worried, inappropriate, and all the rest. This isn't a question type of post, just a reaching out to those who understand the painful loneliness of the holidays this year. Happy Holidays ( somehow).
Jill
Costa Rica
Written by
zjillian
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Faced with the same fear you describe, in my case that I would lose sight of the woman I married 44 years ago, I found 20 photos of Roisin - not portraits but pictures of her taken over the years on holidays or when friends visited etc - and had them enlarged. One of them, showing her with the wind in her hair on a yacht, I placed on her coffin at the funeral service last Wednesday. I am looking at them now and can easily imagine that in a very short time these are the images that will replace the more recent ones as she struggled with PSP. Frequently in the past year I would come downstairs from helping her to bed and just gaze at her lovely face in the photos. It really helped to dull the pain.
Hi Chris...after 10 years my home is full of Madeline,s photos and much enlarged photos.,we worked away from our original home and came back 5 years ago for the peace and quiet and the many many memories of when we started our voyage together in high school,I and I ...,we ,do not bother with holidays except in thoughts and prayers,regardless of all that she has lost and the many tears one cries we have to pray to be able to get through...best wishes,Rollie
I want the carers, who come in daily, to see how beautiful my wife was when younger, running the family, carrying the children on to planes and ferries, preparing them birthday meals. Not the shaking, anxiety ridden woman, in the hospital bed here at home I just leave the occasional photograph of those bygone times lying on the table with her medications, creams etc. so they can see the Sandra we all once had ... and to remind me.
what a wonderful surprise this morning when I opened my mail. So many of you took time to answer me. This made me cry but for love and joy and community and life. I have saved all of your messages. I want to send them also to the PSP association in US and wonderful thoughts and memories. Thank you all,
Oh Jill, I unfortunately know exactly what you mean! Not even reached the place you are both in, so dreaded how I will feel then.
What can I say to both of us........... Not a lot, bar hang in there, somewhere in his confused state is the man you love,. As for the holiday season, well they are always going to be a reminder. I think you have to adopt the attitude, this may be his last, therefore I must make it the best ever, for both your sakes. At least then on that dreaded first one alone, you have the knowledge, no time was ever wasted. Don't let this evil, evil disease take that from you, as well as everything else it eats up!
what a wonderful surprise this morning when I opened my mail. So many of you took time to answer me. This made me cry but for love and joy and community and life. I have saved all of your messages. I want to send them also to the PSP association in US and wonderful thoughts and memories. Thank you all,
I think a group hug is the order of the day. When I think Brian used to drive coaches up to and thru london. Then possibly a sight seeing tour either round london or further afield. Meeting hundreds of people a day never seeming to worry about very much. Time was just that nothing you could do to change it. Now strange people make him quake strange places make him shake and time has to be observed down to each tick of the clock.
good idea abiut the photos I have a one on the table in between our beds. He is standing tall and proud in his smart uniform. Nothing like the man who sits the side of me now.
what a wonderful surprise this morning when I opened my mail. So many of you took time to answer me. This made me cry but for love and joy and community and life. I have saved all of your messages. I want to send them also to the PSP association in US and wonderful thoughts and memories. Thank you all,
Dear Jill, a big hug for you! It must so so hard. I lost my dad to psp 18 years ago but I still think of him every day and memories of him are of the strong, energetic and intelligent man and not what the disease did to him. To get through these trying days, might I suggest what my mom used to do: have fresh flowers in a vase, place photographs of happy times and memories, light fragrant candles and play soft music, cook favourite meals and purée them for my dad - even if he managed just a few teaspoons. All this may seem trivial little tips but it all helped. Please look after yourself, eat well and hang in there. Monika
what a wonderful surprise this morning when I opened my mail. So many of you took time to answer me. This made me cry but for love and joy and community and life. I have saved all of your messages. I want to send them also to the PSP association in US and wonderful thoughts and memories. Thank you all,
So many people on the same cruel journey . a friend once told me to compare it to I am going up stairs while my husband is going down , or while I am am swimming he is sinking ,. My head tells m this is so but my heart is trying to keep us together .
Please excuse the type , cannot go back and correct without undoing the type
Another big hug for you all . I can feel your love .
what a wonderful surprise this morning when I opened my mail. So many of you took time to answer me. This made me cry but for love and joy and community and life. I have saved all of your messages. I want to send them also to the PSP association in US and wonderful thoughts and memories. Thank you all,
Jill my heart goes out to you- I fear me and my wife are travelling down the same path but not quite so far along it as you. It is so strange being with someone who you have known intimately and loved for so many years and then to feel you are with a stranger. Just sometimes I can still reach the person who I married all those years ago but the times are becoming less frequent as this horrible illness progresses .In the end I guess we are all just left with our memories- hold onto those . George
what a wonderful surprise this morning when I opened my mail. So many of you took time to answer me. This made me cry but for love and joy and community and life. I have saved all of your messages. I want to send them also to the PSP association in US and wonderful thoughts and memories. Thank you all,
Hi Jill....paste your home with memorie photos etc,memories are the scrapbook of our lives,.you will forget psp because it is a terrible illness but your memories of the love you have for your dear husband will cover never die ,we cry out of loneliness and for the loss we live with daily....love Rollie...PS forget the holidays,it,s just another day in the caregiver,s world,love
what a wonderful surprise this morning when I opened my mail. So many of you took time to answer me. This made me cry but for love and joy and community and life. I have saved all of your messages. I want to send them also to the PSP association in US and wonderful thoughts and memories. Thank you all,
Jill, I'm with you on how tough the holiday season will be. I think it will help to relive other Thanksgiving Days, Christmas Eves, Christmas Days, and New Years celebrations. You know, the fun ones you both had. The silly things that happened on those days. Remember that time when while putting up the Christmas tree he/I.....................? Remember that dinner when .......................... happened?
I was wondering what meds your hubby is on. Hallucinations can often be the result of meds or the combination of meds being taken and not by PSP itself.
My thoughts and prayers are with you and all the others who will be struggling during the holidays, including me. hugs! Jimbo
what a wonderful surprise this morning when I opened my mail. So many of you took time to answer me. This made me cry but for love and joy and community and life. I have saved all of your messages. I want to send them also to the PSP association in US and wonderful thoughts and memories. Thank you all,
what a wonderful surprise this morning when I opened my mail. So many of you took time to answer me. This made me cry but for love and joy and community and life. I have saved all of your messages. I want to send them also to the PSP association in US and wonderful thoughts and memories. Thank you all,
I'm sure you will be inundated with suggestions and people reaching out to you and quite rightly so.
A very wise friend of mine has told me that I need to protect the memories of my Mum so I'm starting a scrapbook of photos, cards, song lyrics that mean something to us and any memories that come to mind. Sometimes it's a painful experience as is can amplify the loss but ultimately it reminds me of the amazing person that is my Mum, the love she has bestowed on me all my life and how lucky I am to have had her as my Mum.
I'm so sorry that you are so sad, we are just starting this Rocky road, at the moment, we still can talk and reminisce, but each day brings new problems and I am so aware of his memory fading, this is such a good place to share our fears and thoughts and it really does help. Big hug from me xxx
Thank you for the hug which is gratefully received this rainy Sunday afternoon. This is a wonderful group of people who will be there to support you throughout this horrible disease. Big hug in return,
Your words are so touching. You put my feelings down exactly, especially the fear of not remembering what he used to be. My husband has CBD, very similar to PSP. Big hugs from New Mexico.
Your words are so touching. You put my feelings down exactly, especially the fear of not remembering what he used to be. My husband has CBD, very similar to PSP. Big hugs from New Mexico.
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Holiday and CHC
Since our holiday in Devon
Happy Holidays to you all! 
