Dan had a low grade fever on and off you 2 1/2 days. I brought him into the EMergency Room because his breathing seemed also fast and labored. It turns out he has a UTI. They admitted him to the hospital and are treating him with intervenous anti- biotics . He is sleeping 1/2 the day, and looks miserable. They have him in an actual adult diaper. It makes me want to cry to see him like this. They also found he has a pressure sore on his bum. They have been very kind and can’t believe I have been caring for him myself. His decline has got me worried about the changes in his care. I am also concerned about moving him during the night. I am anxious and once I wake I cannot go back to sleep. I really cannot get up every two hours to reposition him.
I’ll figure out a solution . I may have to put him on one side when I go to bed and turn him early in the morning. Any ideas?
They recommend a tilt wheelchair for part of the day . I will have to use a hoyer to move him. Hopefully, I’ll get the hang of it.
Thanks all. Any ideas or thoughts are welcome .
Karyn
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Karynleitner
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Karyn, I've heard (on this site) of hospital beds that do the turning automatically? I can't imagine what they cost..! Is it time to have a night care aide in for him? I don't know how people manage on their own when the patient becomes so immobile - and it isn't right to make yourself sick to look after him.
Thank you. We are hoping to get a small bit of help. We are in the US and night Aid is only available through private pay. Very expensive. They are getting him an air mattresss. They feel that will be better. He will go home tomorrow. I am happy to have him going home, but worried and exhausted.
I started to type something but it sounded politically incorrect...Instead I'll wonder if there isn't a way, in your country and mine, for unskilled or not-yet-certified-in-this-country workers to be given on-the-job training by us and for a low wage to simply look after someone at night. Real basics like observing and getting you if there's real trouble; turning them, just being there and being kind... Even a few nights a week...that would give you the sleep and sanity-restoring break you need to take over the rest of the care. I don't need a two-year-trained practical nurse or care aide to do this at night...particularly when agencies take their cut and charge so much.
I'm so sorry it seems to be one thing after another for you guys at the moment.
You need your sleep! An exhausted carer does not last too long.
From my limited understanding you will need a hospital type bed with an air mattress for pressure sores. The air inflates one part of the mattress then another to stop any one part of the body being under constant pressure. It dos the turning for you.
Who's going to treat the pressure sore? Can the hospital give you advice on this?
Another hot tip. Buy some urine testing strips on Amazon or wherever. They come with instructions and are easy to use. That way any concerns at all just do a quick test. No waiting for medics.
Thanks Kevin. He is scheduled to go home tomorrow . Yesterday was good, today he’s not quite as good.
He is on the type of mattress you described in the hospital. Not sure what we’ll be able to get for home use.
Reducing all pressure on the area seems to be the only treatment for the sore. It truly seems they came with the fever. Perhaps he moved less, the urine was strong on his skin, or the added warmth. Maybe not. He does not have a catheter. We have to address a way to keep him dryer. I have heard of a new pad that is folded a bit and provides a cup type effect. Maybe we’ll try a condom catheter .
For a few weeks we will have a nurse coming in once or twice a week to check on him. His breathing is still fast and a little labored, especially with much movement . Nobody seems to know why. An aid will also come in to help bathe him twice a week and a physical therapist.
This made me see how quickly things can change. They said he could of easily gotten sepsis from this. Very scary, because I really had no idea he was so sick. This is the first time he has been in the hospital since diagnosed with PSP. It is a terrible milestone .
Thanks for the information regarding test strips. Great idea🌟. That will be both helpful and comforting. I’m ordering them today,
So sorry, Karyn, I've been in that position and know the stress. I also couldn't manage without sleep and couldn't get back to sleep once really awake.
In the UK I was able to say I needed support and before he came home from hospital we had a air-pressure mattress and a care plan. I couldn't have turned him myself. Trained nurses did all the care. I was lucky because he slept through the night. I am ok with early mornings. You need nurses that know how to avoid sores and 24 hour telephone support. The stress of having to decide is overwhelming.
Ben also had hospital bed and pressure mattress provided, I bought a gel foot pad for his heels and gel armbands along with sheepskin arm rests. Bottom has 'pro shield' applied regularly and his recliner is designed to help prevent sores. So far so good.
This is our experience that I hope and wish will be useful:
We have not had problems with bedshores so far. The preventive treatment we are following is:
1) Physiotherapy. Various active and passive exercises every day for 2 to 3 hours.
2) Anti-bedsore cushions for the metal wheelchair and the sofa (our anti-bedsores cushion came from JAY - Sunrise Medical Ltd brand).
Expensive but effective.
3) In situations where the patient spend a lot of time in bed (for instance: more than 16 hours a day) or is sitting for a long time, we preventively apply a bit of an oily spray, which in Spain is called "Corpitol" ((Hyperoxygenated glycerides of essential fatty acids (linoleic, linolenic, palmitic and stearic) and Tocopherol (vitamin E). (20ml around14 €)) This product is also used to treat bedsores but we have not experienced it. Our experience for prevention is: works.
4) We have no experience in anti-bedsore mattresses.
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Tube feeding, choking or deep sedation/euthanasia? Your thoughts would help so much, we are quite lost about dad's late PSP stage. 
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