Downhill slide

[Baytalon]

Hello my friends. I haven't posted much because my husband has, up until now, been independent. Although he still is able to take care of himself, for which we are grateful. However, his ability to walk has greatly diminished and his speech is becoming difficult to understand. Over the past 5 days, he has begun to sleep much more. I don't know if I should try to keep him awake and engaged or should I let him sleep. I know this is symptomatic of PSP, but should I try to keep him awake and engaged?

[bsilverman]

Hi Baytalon

I suspect my husband is at a similar stage to yours. I’ve been told that because their brains have to work extra hard for things that come easy for most of us, they do seem to need more rest. I push my husband a bit just to make sure he isn’t resting out of boredom but I also let it go pretty easily if he seems intent on a rest. I find he can often rally for a while if there are engaging activities but he could also remove himself to go to bed even when we have visitors who have come to see him. I actually welcome the times he is resting as it offers a bit of respite for me.

Not sure if this helped. Of course, everyone is different. I suspect you just have to try things out. Good luck.

[Baytalon in reply to bsilverman]

Thank you, bsilverman. It does sound like our husbands are at a similar place in this tangled web.

[raincitygirl]

Hi Baytalon,

My response to hubby's increasing fatigue and dozing was same as B. Silverman's

The only thing I "pushed" for, was a bit of physical exercise every day and a bit of communication. I had asked his specialists about sleep and they all said it's good for him.

He used to go to bed quite a bit ahead of me, but when I came in he would wake up. He would keep his eyes closed, but because it was dark and quiet and no other stimuli, he was able to verbally communicate better. If we needed more than a "yes/no" conversation, that was the time to have it!

The step-downs are inevitable: nothing is going to stop them or cure it. The thing is helping him live as comfortably and even occasionally happily, as possible until the end.

Love and Hugs XXX

Anne G.

[Baytalon in reply to raincitygirl]

Thank you, Anne G. I like your suggestions on communication.

[doglington]

When Chris slept I couldn't wake him anyway. He often slept at the day centre as well.

When he was awake I tried to fit in some movement routine.

Its sad.

Jean x

[Baytalon in reply to doglington]

Yes, Jean, this is a vicious disease.

[Dadshelper]

I engaged with Dad much as possible during the day but when I could see he was really getting tired I let him nap. Right before he went full time into a wheelchair his O/T (occupational therapist) said he was probably spending about as much energy trying walk 3-4 steps (with a walker) as a healthy person would running a short race. I know that massive energy use continues into even the smallest activities now. Dad gets tired from just chewing a few bites of nearly puree'd food and always naps after he eats.

Ron

[Baytalon in reply to Dadshelper]

I never thought of it that way, Ron. I must be a tremendous expenditure of energy. Thanks for the comparison.

[honjen43]

My love was similar and he had CBD. There were times when he could sleep heavily during the day for 2-3 hours, and still go to bed for the night a few hours later. It was difficult at times to keep him well nourished.

I could link a slight downturn in mental activity with an increase in sleep needs immediately. Sleep pattern increased as the disease progressed towards the end.

Let him sleep, but make sure he is getting something to eat and drink each day. Give him favourites! Let him enjoy what he eats. You may find he recovers and sleeps less after a few days, and it may happen again a week later.

Sadly, I found it an indication of a crisis of some sort, and that the end might be closer than before.

Take care!

Hugs

Jen xxx

[Baytalon in reply to honjen43]

Thank you, Jen. This is a sad place to find ourselves.

[Katiebow]

I just let Ben sleep when he wanted to sleep ensuring that he did have food and drink of his choice. The physio had explained about the tremendous amount of energy it took to do even the simplest of tasks and that the rigidity was also using lots of energy because muscles are constantly engaged. I was of the school to just go with it and let him enjoy whatever he wanted to do, Radio 4 was a godsend for him as listening to topical radio was something he could enjoy. Such a wicked disease.

Love Kate xx

[AnneandChris]

Hello there

I suspect my Chris is at a similar stage. For the last week he has been in respite In a local nursing home. He'd had a double infection and we both needed a break. The change of surroundings and activities in the afternoon have stimulated him and he has picked up from where he was 10 days ago.

So plenty of sleep and some stimulation seem to help.

Hope this helps.

Keep on keeping on

Anne