Sleep and disease progression. - PSP Association

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Sleep and disease progression.

Karynleitner
Karynleitner

A few weeks ago Dan began sleeping more. It turned out he had a UTI . He was put on an anti-biotic and got better . Now he is sleeping over 1/2 of the day. It hard to get enough calories in him because of the time spent sleeping . He is definitely in the final stages of this awful disease I am wondering if this can just be due to disease progression, or should I be thinking he’s ill again I am watching closely for fever etc. Any experiences ?

Thanks

10 Replies
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Glad you caught the infection in time. His body may be finding it needs time and sleep to recover. Although you may be right about it being a further progression.

I remember hubby took a long time to recover from his first pneumonia bout and had another dose and antibiotic before it went away. He also developed sepsis in a knee - so watch in case some bug unrelated to the UTI takes hold.

Infection does take a toll on their tired body, and they are not always able to keep it at bay, especially if they dont eat much.

Find soft foods high in fats, calories, sugars to tempt him to stay awake long enough to eat. Check he is not getting dehydrated too.

Hope he brightens up.

Hugs

Jen xxx

Thanks. It is such a struggle lately. I’m waiting and watching concerned he has an infection brewing again . Some days getting enough liquid is a tough.

I like Jen's reply. Says it all. Our fridge had everything in it that was supposedly 'bad' for him/us but it worked. I also gave up completely on 'food' times so he had a little and often, even throughout the night. All the best

Alison xx

Hi

Well, disease progression can look like that. If his urine tests clear (test strips available at Amazon ans easy to use) and there is no temperature and his chest sounds OK... Then I would be for putting it down to the stage he's at.

Liz is at this point. So tired most of the time.

Warmly

Kevin

Karynleitner
Karynleitner in reply to Kevin_1

Thanks. Each change takes a some adjustment. I’m worried because this usually means he is ill. This disease keeps me on high-alert. I will order the test strips right away. Can I test urine from the catheter bag, or is that contaminated?

I’m sorry to hear Liz’s disease is progressing. I think sleep may be an escape for Dan at times. I don’t blame him. 💙

It could both reasons you sight, end stage of the disease and an infection. Go with your gut. It’s probably right.

Dan has had an exceptionally bad case if this disease. Reading your post over the last few years I was struck by how hard this hit him. He had just about everything it was possible to have.

I don’t know if you got home hospice involved with his care to date. If not you might want to have them in to help make him as comfortable as possible.

You have been given sound advice. I would add that due to the nature of the disease it may affect his normal body temperature regulation. This being said an infection may not necessarily trigger a fever. You may have to rely on other signs to detect an infection. UTIs...frequent bathroom trips, burning or pain when going, trouble initiating going. Chest...wheezing, shortness of breath, pale skin tone, coughing and/or racking noises.

These diseases take a toll on the body, it might be he is just sleeping more to help the body recover from his recent illness.

Ron

Thanks Ron. He is doubly incontinent and does not speak. He’s rigid etc. Therefore, it is sometimes difficult to figure out what’s going on.

Thanks again for your reply.

I’m thinking of you and Dan during this difficult time. I wish that I had some words of wisdom for you but I’m coming up empty. This is a tough and cruel disease. I can only hope that his body is trying to recover and the sleepiness is a phase that he’ll snap out of soon.

❤️ from I SewBears

I can not add much as new to this and Hubby only recently diagnosed with CBD but sending Hugs to you x

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