I really don't want to go to this Thanksgiving dinner thing. My husband (PSP) Bob is having a toilet crisis today which means, mess, confusion, no clothes, confusion, and did I mention..mess. I am supposed to bring something to the dinner and I really don't want to. Don't know half of the people, never good at parties, never too good at Thanksgiving anyhow. BUT, there seems no way to avoid this forced merriment. If we don't go...many hurt feelings, (they really don't understand); and just because my husband's social persona seems to be hardwired and deeply instilled by years of severe training by his polite WASP mother, they seem to think Bob is just fine when he smiles and says "Hello".
Bah humbug, sorry for the bad spirit but this I don't need,
Jill
Costa Rica
Written by
zjillian
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Since PSP I've decided if It's not to do with Colin's health, and I don't want to do it, I don't and Oh the freedom I feel when I so "No". I've spent most of my adult life doing things for other people and of course I will continue to do all I can for Colin but now, if I want to I will, if I don't I won't. You are in a tough situation so I wouldn't worry about hurting other's feelings. If they don't understand it's their problem not yours. There is always too much food when several people get together so I they won't starve without your contribution. I don't know what you will do, but I send my apologies, breathe a sigh of relief and sit down with a cup of tea or glass of wine, depending on the time, and pray the toilet crisis is finished for the day.
You are a lifesaver NannaB..!!!! I really needed to hear what you said. I had called a friend and she was all sympathetic but weird and there I was being strange Jill again. So I've been all mopey..and then I read your reply..Thank you!!!!!!!!!!!!!!!!!!!!!!!!!! You really helped me. I do want to be alone today. The last thing I want to do is drag Bob to this party thing and try to control him and it would have been bad. It is their problem if they don't understand..they need to give thanks for their health and the partner's health and forgive those who can't be terribly thankful today.
I've just looked up the time difference in Costa Rica and it's now just past noon for you so I hope you have a lovely peaceful rest of the day with Bob. Thanks for your kind words.
I did just that today. I stayed home with Bob and he was weird and confused totally all day but not agitated (a blessing). Played with all my toys, including my dogs, baked a coffee cake and ate it, played on the computer and now will read (Bob's in bed) all alone...which I love. Thank you again, Sweet dreams,
SP SORR JILL IN CR THAT U R HAVING A DIFFICULT TIME WIHT BOB AND WITH YOURSELF OF COURSE
I DO KNWO THAT IT IS DIFFICULT AT PARTY TIMES 2 DO THE RIGH THTIGN AND GO TO THEM - I LVOE PARTIE SAND GET TOGETHERS BUT DO NTO ORGANISE THEM ANY MORE AND WE ARE JUST LEF T TO OURSELVES IN THE APARTMENT
BUT THAT IS NO BAD HTING EITHER.. A HAPPY MEDIUM WOUDL BE NICE BTU NOT ALWYAS POSSIBLE
I agree with nanna B . Glad to hear you looked after yourself. I have also reached the stage of giving myself permission to be selfish, apart from Chris' needs. Remember if we go under it all collapses! So it makes sense. Love, Jean
Too late to help, other than just agree with the others. I live in the USA, and my mom invited us for dinner. I told her that "b" would not be able to handle the commotion of the excited kids. Sends him into a panic/anxiety attack. Which then magnifies all his symptoms. She was understanding, although sometimes I think she thinks it's just an excuse not to go. Not worth the pain it puts "b" through or the stress for me. I've explained the disease and symptoms to my family. For the most part they understand.
The two of you are your first priority. I'm glad that Bob can still smile and say hello!!
It is such a strange time. He is alive but no longer the man I knew for all of my adult life. Without "we" I don't know who I am. I grieve for the man who is sitting next to me. I don't think it is possible for anyone to understand unless they are in the same situation. From the outside it seems just about management but the emotions along with all of that are all over the place and create this little bubble in which I feel lonely and separated from others no matter how kind and well meaning they are. Holidays are the hardest. I wish it was January already..so we could just move on.
I understand what you are feeling! I too miss the man I married 48 yrs ago. Bob was diagnosed 4 years ago and the man I knew and loved has disappeared. I know he is still in there but he can no longer express himself. I dread the holidays but I know he wants to attend all the celebrations and really so do I. We have 9 young grandkids and I enjoy seeing them all together. It makes me sad to know that this is the only way they will remember their Papa. Bob loved kids and was a man who loved to play with his and other children. He only had a few normal years to enjoy the firstborn grandchildren but they were to young to remember him when he was normal. I hate to complain to my children about all the work and the lonely miserable life that has engulfed me. I don't want to be a burden, having a father with PSP is quite enough to handle. When we are at family gatherings I step aside and let my daughters look after their father. It is like a mini holiday for me.
Thank you for taking time to reply to my note. It is terribly hard to watch and terribly lonely. We have no children and I always thought it might be less lonely with family but I understand now that nothing really can help. It is so different when it is your partner from a long marriage. There are no words to describe the emotions of this process of tearing apart what had grown together. There is something about the person still being there and yet not there, that is impossible to grasp, especially by others. I find this site a big help; just to write to others makes me feel connected to something. You have my support long distance.
I feel the same way. My husband is not as far with this journey that yours is, but he is slowly slipping away.
I've been married to him since 19 years old (now 54). And I feel as though I'm slipping away with him. People can ask how's he's doing, or they see him on a "good" time and say...he's looking well and think everything is fine. But I know better. You get tired of trying to explain what's going on and the loneliness sets in. I am so sorry that we are all in this situation, but grateful for everyone on this site.
Oh yes, how to explain, even to myself. This love and the pain to watch your partner slowly changing. At times I am hating him and wondering how he used to be and remembering the bad times and at times the grief is too much. and then remembering the things we used to do together and how I was never alone and we were content to just be with each other and share everything. The combination of feelings and the self doubt and confusion. I feel that others must be stronger, or nicer, or more real, or more grateful. And most of the time I am low key and don't want to do anything and then I pull it together. But it is impossible to move on while I am still here with Bob and in the past. Doing things without him hurts so much that it is better to just stay at home with him.
I know when he has gotten worse because I find myself on the verge of tears and then I know something has changed again. This is a horrible disease, slow and fast, and slow again. And the loneliness, the boredom, the grief,. This time of year I think it is the worst...it is like watching a happy parade from a nearby apartment house window.
Forgive the self-pity storm. But Monday morning is a slow start. I married Bob when I was 22 and he was 26. I am now 68 and he is 72. We have no children because there really wasn't room in our marriage for anybody else but us. He was my best friend, my love, my brother, my twin, my teacher, my child..and now what is left?
Jill, I think we are exactly the same. What you discribe is how I feel! I'm not nice, certainly not strong and definitely have no patience!!!! I flounder around, S was the othe half of me, now I am broken and don't know what to do. Everyone says I am doing a brilliant job, my drama teacher would have been proud of me! But it gets me through to the next day, so something must be working, just like it is for you.
Like you, I'm suffering from That Tuesday morning feeling, having not much sleep on Monday night!!!
Tuesdayish...was always what I called the Tuesday morning feeling. A day neither here nor there...but Wednesday is coming and that always feels like a relief for some reason. The days have characteristics left over from childhood and Wednesdays were my father's day off and that was good.
I cried when I read this, for both of us. What is left?? I guess memories to hang on to, and I do believe somewhere deep inside of your Bob ( my husband's name is Bob too!) is the man you married. All the things that he was to you and you to him, are still there somewhere. I guess I just need to believe this to help with going from one day to the next. We have 3 adult children that we try to protect from this horrible disease as much as possible. We also have 3 grandchildren which it makes me so sad that the youngest 2 won't know their "PaPa" when he was fun and full of life. No need to forgive the self-pity, we all have plenty of it, it's a good way to get things out!
Woke up to freezing rain and sleet today...whoo hoo! I'll be glad when spring comes!
It's just two years now since Tony slipped away and I remember well those feelings of anger / grief / frustration / fatigue. We have one (very supportive) son but no grandchildren.
You will find in time that you have already done some of your grieving - my experience from the bereavement group is that for those who lose their partner suddenly and unexpectedly, it's much more difficult to come to terms with.
Thank you Mo for your thoughtful reply. I do believe that the grieving process is so slow and painful that is some ways we are better prepared for the loss. The feelings come and go with intensity. A am sorry for your loss. You have my love,
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New to this horrible disease 
Husband looking good considering!
Holiday causing changes?
complete loss of language
