I think a hospital bed is our next step. Sandy has not been able to sleep in our bed for a couple of months. He wakes up in pain (back, bum & feet) and has to move to the recliner in the living room. He's now been sleeping in the recliner for a couple of months thinking that he would return to our bed but that's not happening.
I am going to buy a hospital bed with a special mattress with a pump that will apparently "move" to help relieve pressure on his body. He has the beginning of a sore and I don't want to this to get out of hand. I know it can be dangerous. He doesn't feel ready for a hospital bed but I don't know of another solution.
Somehow a hospital bed in the house just seems like he's really got a disease - like there's no going back.
Any ideas out there?
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journeyofjoy
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Dad, CBD, used a hospital bed in the house for quite a while. The mattress you describe is to help prevent pressure sore, bed sores. A hoist device may be useful to help you get him in and out off bed. If your husband has been in the military he may qualify for some benefits through the VA, even though it's not combat related.
Thanks, Ron, for the tips. He is not a veteran so no help there and it's more expensive to go through Medicare than pay out of pocket. I think we're going ahead with this hospital bed. We both need to have a good night's rest and I want to do whatever I can to make life easier and keep him at home.
Hi, my husband (PSP) has used a hospital bed with a air mattress for 2-3 years now, he has been bedbound for 1-2 years, can’t no longer walk, has not yet had any problem with bed sores, so this type of mattress is a good idea.
Thank you, Helen. This gives me encouragement to go ahead and it's the only thing that makes sense at this point. How is your husband? Once he was bedbound, did he lose more strength? Hope you don't mind me asking.
Yes I suppose he has, as he can’t feed himself, or even hold a cup, so can’t do anything for himself anymore, he can still talk and swallow, I don’t know what next or how long.
He’s hanging in there, swallow starting to go, talks very quietly, bedbound, can’t move any limbs now. He just wants to die, he gets very fed up with just laying there. Thank you for asking xxxxx
Mum has a hospital bed (profiling) bed with a foam mattress but we've been told can change to an air pump one if sores become an issue. She has slept much better since getting this, She has a knee break put in to stop her sliding down the bed and the head raised, and sides (with bumper covers) up. I know someone who has got a very fancy one that actually moves to a chair position.
Have you got a pressure cushion or an air pump cushion for the recliner? Either would help with sores.
Make sure you get proper advice on how to treat the sore, they can get nasty very quickly.
Hi, hubby has had a hospital bed for a couple of years now, and an air mattress for the last 6 months , he is quite happy with it. In a morning we use the bed to help him stand up. He lifts the head part himself to a sitting position and then I swing his legs off the bed (he can occasinally stil do that himself but less and less), and then we use the walking frame for him to hold on and I raise the bed as high as it will go and he leans against it until his legs are ready to start moving. Sometimes we have breakfast in the kitchen when he can walk that far, and other times we stay in his room.
Good morning. I’ve just joined this forum seeking help for understanding and ideas in how Help mum look after dad during his latter stage of PSP. He was only disgnosed in February with it confirmed after kids of tests in May 19. Sadly his consultant has said he has never seen such a rapid decline in symptoms and over literally 8:10 weeks he has gone from a 72 year old walking on a stick and but wobbly to a wheelchair loss of speech unable to feed himself and unable to communicate.
Dad has PSP and we’ve gone it and got a medical bed complete with pressure sore mattress To be honest best thing we’ve ever done. Makes the physical handling of him so much safer for mum. She is his main carer and they are both in their early 70s. She was trying to lift and manoeuvres a man from a wheelchair to a stairlifts to a wheelchair upstairs to the bathroom into the toilet and then into bed. All with a man who can no longer walk. His left foot I can only describe as stuck to the floor it just won’t move !!! Anyway the bed for mum is a godsend. Being able to elevate head end foot end of even just raise the bed to a level that you can almost slowly slide dad into a standing position is brilliant. For a man with almost Zero mobility left and unable to even roll over in bed the mattress is already proving to prevent these sores at the moment. He’s also been given some inflatable foot cushions which apparently prevent the sores to the feet And heels
Hope this helps. God bless you on a journey none of us want to have endure but all willingly do for the ones we love 💕. Take each day as it comes. Take time out for yourself when you can even if it’s just a few minutes.
Capture the good days and hold them close and remember you at Never alone on this journey
Believe me that is the best for him, they are comfortable my brother has had one for a year now, we put healing cream on my brother back elbows, in side ankles any where where a pressure sore can start, he has never had one, we are going on 9 years with his psp, so have seen it all, wishing all the best for your hubby and you. Nettie
Thank you for your response. We had the bed delivered on Friday. The mattress is not what I expected so I am returning it and going to get the "super" mattress that automatically deflates and inflates. He has a tiny pressure sore starting and I don't want it to progress. Hope to have this in the next few days. It's interesting that you mention his heels. My husband has heel pain at night after being in bed for about five hours. In the recliner, his feet hang over so he doesn't have the pain.
Hi. Dad was given a set of blow up plastic heel protectors from OT team. They work really well for keeping heels healthy. They are also available to buy online
Hi there, thank you for getting back to me, the mattress we have is what you mentioned it keeps air running threw it so they don’t get pressure sores, well at this point my brother sleeps about 18 hours a day, we have a pole by his bed so when we get him up he hold the pole we bath him het him dressed sit him in his wheel chair then he eats his breakfast, it’s a struggle as he don’t grab his pole like before, but he is in bed a lot, we have the thumbs up for yes and no, when asked he likes his bed, I am so thankful he has never been in pain, this psp is is so horrible. Take careNettie
Hi there, reguarding a hospital bed , my brother did not one but things were getting so hard we did, we have a pole next to his bed he no longer can walk his legs are like concrete and his arms are bad to, it takes two of us to get him up but he grabs his pole can’t hardly do that either but he can stand holding the pole and we get him in his wheel chair for a couple hours in the morning and a hour outside for fresh air ,again in the late afternoon, thank goodness never a pressure sore , we watch him closely, we put healing cream every morning which I think has helped a lot, but at least with the bed he can stretch out, or if he is having a bad day can feed him in bed, I see a decline of course, and he is very thin, but still has a appetite, 9 years now, sorry to go on guess I just needed to talk about it ,I wish you well with the hospital bed, you will e glad so much easier. Take care. Nettie
We've had the hospital bed for a few months now - it's a good thing. He has a Sara Stedy as he can no longer stand with the pole. My husband also has an appetite but is very thin. Interesting that you mention his legs are like concrete - that's exactly the way to describe it.
My husband has a hard time sitting up straight enough to get onto the Sara Stedy. A trapeze is probably our next purchase. He tries to sit up, holds onto the stander pole, but then rolls right back over as if he had a round bottom, like getting an egg to stand on its large end.
Has it been nine years since his first symptoms or nine years since diagnosis? He's lucky he has a good family to care for him. Take care.
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