My husband woke up in the middle of the night and asked,"Who are you? At first I thought he was kidding but he truly was bewildered. In the morning he did not recall this and seemed to recognized me. He has been wanting to just sleep all day. I used to get him out in the afternoons for a walk (me pushing him in the wheelchair) or take small steps with his walker. I see him just staring off into space and sometimes he appears to be trying to talk to someone. He has always had a good appetite but lately becomes full very quickly or refuses to eat. I feel guilty letting him sleep so much but it is like waking a newborn if I do. He has stopped moaning as much as he used to for which I am grateful. But sleeps with his mouth wide open. At this point he seems to be retreating and I am afraid that it I do not do something-anything I will lose him completely. Is this the beginning of the end?
Losing interest.: My husband woke up in the... - PSP Association
Losing interest.
He can still speak and walk a bit. That is good. My husband can't. C stares into space because he can't move his eyes, blink or move his head. His eyes are either staring or closed for long periods. He also sleeps with his mouth open. If I let him, he would appear to be asleep most of the day but I know he is sometimes awake and thinking inside. When I speak to him and get no response I ask if he is answering me in his head and his thumb goes up. Today we went to church for the first time for months as I had a night carer last night so didn't feel exhausted in the morning( a one off on a Saturday night). He appeared asleep when I asked him if he wanted to go and I had no response until I said thumbs up if you want to go. Thumb went up so we walked ( wheelchair). We were greeted enthusiastically by many people but again no response from C until I said thumbs up to say hello when every time, the thumb went up. He gripped the hand of everyone who took hold of his. At the end of the service I asked him if he wanted coffee, again thumb up. I had taken his thickener and a straw and he emptied the mug but once finished, appeared asleep again. The service started at 10 am and as so many folk came and spoke to us, we left the church at 12.30. When I kissed him goodnight tonight, I asked him if he was pleased we went to church and the thumb went up again. I think every day is the beginning of the end but I don't know how long it will be until the end so will continue to take him out and invite people in, all the time I know C is still with me, thumbs go up and he is still able to sit in his wheel chair.
x
I am so glad you had a nice time a t church ! We went this morning and as usual, a nice man came out to help B walk to his seat. He even got out of his car after church and escorted B to our car. B often is in the same 'position' as C. Eyes are closed or fixed-gaze; looks like he is sleeping. Most of the day he wears his wrap around sun glasses. But though he looks asleep, I can ask him a question with an immediate answer......well not as immediate or clear as it used to be but it gets the job done....
AVB
Oh Nanna B, your reply warmed my heart and inspired me. Despite his agitation I got him up and dressed and put him in the chair (with dog in tow) and went to the local coffee shop. He wears wrap around dark glasses as well but I could see his head turning taking everything in as we passed by.
He was really tired when we got back but when I asked him if he liked getting out he gave me a 1 finger for yes. (We do 1 for yes 2 for no, but his therapist uses thumbs up and down as well. On days the carer comes I try to leave right away to get everything on my to do list done. But I am going to get him out to do something on days it is just us. Thank you for sharing.
xo JayneGC
I just reread your narrative of Colins day (well part of his day) . It was so heart warming to read how you help him to communicate. I just want to encourage you to keep on being a part of C's life. And I want to thank you for being such an encouragement to me. I love reading your messages; you help us see that there is still a positive. I don't know the right words except thank you. I learned how to hug online..... so heres a big one,{{{~}}}!
AVB
Thank you AVB and thank you for your encouragement and humour. That's what is so good about this site. We all have different personalities, different talents but at least one thing in common, PSP. I have wondered what we would all make of each other if we met in person. I've met two lovely ladies who post here and their PSP husbands at the "local" support group. Have you managed to meet anyone with PSP near you? Do you have a support group within driving distance?
Thanks for the hug. Here's one for you {{{~}}} 💐
He may be more cognizant than you know. NannB gave some good examples of how they continue to communicate and be active. This could be useful for you. B has suddenly fallen into a very low stage. But I want to attribute it to the Ambien. He still communicates if given enough time and is still mobile ....though I am wondering about the walker anymore.... I don't want to give up on B either...I am afraid of letting go too that it will slip him into a deeper pitch from which he will lose all independence....I am really scared. I am not helping you I am sorry. I do know what you are going through I am going thorough it too. He doesn't even want to go to gym, and when he does he falls on machines. He had more control but lately, I just don't know....Good luck
AVB
As B has fallen on the machines, he may be too embarrassed and lacking in confidence to want to go to the gym. C used to play bridge. A couple of weeks running, he tipped his chair over and had to be picked up. After the second time he said he didn't want to go any more. That's when I bought his first wheel chair. We would walk to the hall, him pushing it. When we arrived, I'd help him to sit down and wheel him to the table. At the end he would push it back home after I met him. He carried on playing for over a year before he became unable to concentrate on the game and by then I was having to push him most of the time. That doesn't help B but it may be that he hasn't lost interest but lost confidence.
Yes , he will tell me No I can't....and I have to remind him that he was just doing it yesterday...whatever IT might be. without the spirit the rest soon to fall.
AVB
he had a much better day to day... I do notice that he becomes more hunch backed as the day wears on. This posture really wreaks havoc on the core and balance!
Yes, C is 5' 11" . I'm 5' 4". When he gets out of bed in the morning he is taller than me as we transfer him to his shower chair. When our son's come, we try to get him up to walk a bit but then he is so hunched up, his head is level with my waist.
X
My husband takes Ambien. What side effects are you seeing that is showing up in your husband?
Lynn O
Bruce is more loopy than usual. Everything he si doing is what he has been doing only with more impact. He is really pitching forward even more than usual in his walker. . His feet are stuck or frozen to the ground . he seems weak. When he falls he doesn't seem to have the physical or skill capacity to get up. AVB
Is Ambien new to him? My husband has been taking it off and on for a really long time. Sometimes it helps him sleep and sometimes is doesn't. lately he's been complaining about being way dizzier than normal. Sounds a little different than your husband changes. He has started taking Carbidopa/levodopa which he's been taking for about a month and his dizziness just started. so not sure if it's PSP or a combo of medications.
Thanks for your response.
LynnO
abirke,
Already followed her advice. I understand about the gym. He does not want anything to do with it anymore. At first I had someone take him and work out with him as the staff said he was a liability. He would not use a walker there-too proud. Once he was in the chair he stopped going. Sad because he had a lot of friends there. I have weights at home but he wants nothing to do with them. He has a therapist come once a week and she has him use the walker. I bought a wide belt with handle all around that I use when I walk with him but he has been leaning to one side and my arm is getting strained. Leaving that to the therapist now. He used to take Ambien before his diagnosis but now that he does not have to get up to go to the bathroom constantly (as was the case before he gave into wearing the pants) he sleeps better. Now the throat clearing wakes him (and me) up. Maybe you could change the sleeping pill. It is known to have strange side effects even in healthy people. And just writing back IS helping me.
Take care,
Hugs Jayne GC
Does your husband know that the wt. machines can move their own seating out of the way to house personal wheelchairs?....I think all of the machines have that capacity.....and I know what it feels like for pride...but if he knew that wheelchair usage is so common that even the wt machines morph into wheelchair friendly machines....maybe he would gain the confidence to realize no one is judging him errantly.
Just a Thought,
AVB
Oh and yes its weird about the Ambien, B doesn't complain about it....He is still up 2 or 3 times And last nights hacking was more of part of a dream or vision he was having of being on the moon....he said it was quite pleasant! Got up in middle of night to have cereal said he hadn't slept in hours. I felt sorry for him and in my stoop-er got up and made him tea and cereal. We both got back to bed and he slept like a baby....I'm still in the stoop-er..Just asked if he wants to stay on it..."Yes, I like it"....now what? Maybe I have to change my behavior or desires....you know like sleep....hahah
AVB
So sorry to hear of your situation- it's just another facet of this dreadful ailment. My Dad had a similar incident last month.. He was taken to ER and quickly administered some glucose intravenous infusion along with sedatives and was back to normal after he woke up from his sleep ( though he took a long time to fall asleep). This is his second episode- the first was a year ago. Watch out for a pattern- My Dad was very restless and was not sleeping well prior to both these episodes. Stay strong.. much love and hugs
Hi the loss of memory short or long term does not seem to be affecting M. The other symptoms are very similar, long periods during day of either sleep or inattention, open mouth breathing through wide gape, night time moaning - how she does it without getting sore throat or dry mouth heaven knows. Cannot comment on appetite as she has a PEG. Her eyes are now very red as no blink so may contribute to closed eyes. Can walk about house only on my hip. Wheelchair for all outdoor expeditions though her interest in going out is reducing as she complains of cold even when wrapped up like an Eskimo.
I do not or will not accept these are the end game of this horrid condition as long as she can complain or make her feelings known through non verbal means. Even if her thumb up and down motions are now confused when she can get me to ask the correct question she is positive.
I believe that the end game starts when the sufferer gives up and we as carers will know when that occurs but (we) I think I fight to maintain the moral and stubbornness of my partner to fight the PSP. Though tired and frustrated I think it is better than watching passively: Adapting Dylan Thomas: Go not gentle Rage against PSP.
Best wishes and do not give up on your husband he is still fighting.
Tim
Tim, I like that. Maybe we should have T-shirts printed up! I am not ready to give up on him, I just cannot let him give in to the disease because then he may as well give up.
Don't think he is ready to do that yet but I will try to follow his lead when ever that does happen. Though I know I will have a hard time with it. He does not want a PEG tube put in. Was vehement about that from the get go. So just have to keep him eating and moving around for now.
Keep up the good work-you sound like you are taking good care of her.
Best Jayne
CBD
Happy delusions
Psp
My Dad is now at peace
