Hello everyone ! I'm a newbie and am seeking advice on behalf of my brother Rod. He had an accident in April 2014 resulting in a C4/5 injury. He is virtually paralysed from the shoulders down, despite physio for the past 15 months he has been unable to regain any use of his hands/legs (although he can raise his arms a bit). After a very serious chest infection, during which he was re ventilated in intensive care, he has an ongoing big risk of infections, so he is not being permitted to lie flat at night (or any time!) due to mucus on his chest. He has just been transferred from hospital to a very nice nursing home but he is distraught about having to permanently lie on an air mattress. He knows, healthwise, that he cannot lie flat, but he wants a new more comfy sprung mattress which he thinks will enable him to sleep better at night. I mentioned this to the doctors but they say he already has the best bed going! So, can anyone advise me what to do for him, please? His health is now very brittle, he loves watching TV, but he's so depressed about getting no sleep! Thank you for reading. Kami
Hello everyone ! I'm a newbie and am seeking advice on behalf of my brother Rod. He had an accident in April 2014 resulting in a C4/5 injury. He is virtually paralysed from the shoulders down, despite physio for the past 15 months he has been unable to regain any use of his hands/legs (although he can raise his arms a bit). After a very serious chest infection, during which he was re ventilated in intensive care, he has an ongoing big risk of infections, so he is not being permitted to lie flat at night (or any time!) due to mucus on his chest. He has just been transferred from hospital to a very nice nursing home but he is distraught about having to permanently lie on an air mattress. He knows, healthwise, that he cannot lie flat, but he wants a new more comfy sprung mattress which he thinks will enable him to sleep better at night. I mentioned this to the doctors but they say he already has the best bed going! So, can anyone advise me what to do for him, please? His health is now very brittle, he loves watching TV, but he's so depressed about getting no sleep! Thank you for reading. Kami
Welcome to the forum kami, It sounds like your brother is having difficulties for sure...The air mattress may be to help prevent pressure sores which is also a very serious health risk. In regards to the bed, can you request/push/make a noise for a hospital bed? Can he be raised at his chest level with pillows to help with his breathing and is does he need the mucus clearing for him? If so is it carried out on a regular basis?
Also, how often is he out of the bed? He can be transferred into a power chair ?
Welcome kami! Sorry to hear about your brother, accidents suck!
In regards to the mattress, I think an air mattress is the best for him. He might have to sacrifice comfort but it's worth doing so to prevent pressure sores. I have a foam mattress which also helps prevent pressure sore and I find it comfortable. Maybe he can give that a try but a regular spring mattress is probably not a good long term idea.
Thank you Lara and DJ. It's been a hard year for my brother for sure but he hasn't been the most co-operative of patients, more often than not refusing to let the staff get him into a chair because of the pain! So 90 percent of the time he has been/is lying on his back in bed. However, I've found out today that the previous mattress he had in hospital was an air one, the same as he has now, and he was happy with that. So I think the real problem is that where he is now they won't let him lie flat and this is hindering his sleep. I've also read that turning a patient regularly to prevent pressure sores is preferable to leaving them on an air mattress, and that there is a 'turning bed' called the Nexus, which has a foam mattress and the actual mattress can be turned rather than the patient. Do you know anything about this? Kami.
Where is he being looked after kami? If he is in bed 90% of the time, it isnt good and if they know their job, they should also be knowing to turn him...what country are you in?
In the UK. It's meant to be a really good nursing home, and the staff are really nice, I don't know whether they turn him or not , I was just quoting the article I read! But it was upsetting when the first thing my brother said yesterday was "you've got to get me out of here". Sleep - or lack of it - has become a major issue with him and I'm trying to find the best way to help him. There aren't that many places which can give him the level of care which he needs in the UK and we've waited a long time to get him into this one, now he wants to leave! They've taken him off sleeping pills too because they were bad for his breathing!
Thank you Lara and DJ. It's been a hard year for my brother for sure but he hasn't been the most co-operative of patients, more often than not refusing to let the staff get him into a chair because of the pain! So 90 percent of the time he has been/is lying on his back in bed. However, I've found out today that the previous mattress he had in hospital was an air one, the same as he has now, and he was happy with that. So I think the real problem is that where he is now they won't let him lie flat and this is hindering his sleep. I've also read that turning a patient regularly to prevent pressure sores is preferable to leaving them on an air mattress, and that there is a 'turning bed' called the Nexus, which has a foam mattress and the actual mattress can be turned rather than the patient. Do you know anything about this? Kami.
Yeah I know patients from rehab who use the "auto turning" bed and liked it. It's probably really expensive but worth it. Also, it's very important that your brother gets in his chair and does some activity. Do you know where his pain is located? Is he complete or incomplete?
Sorry too hear about your brother! Been there myself! If your brother is in bed most of the time, the staff need too turn him at least every 4 hours! Also see if they can provide him with a S pillow it's like a big long flexi plopped which they can put between his legs and under is neck! But must turn him regular! Regarding chair I had similar problems but pain relief help! Too maintain sitting a little week by week! I hope your brother gets better!
When I was in rehab, I was turned every two hours. The airbed was essential to avoid skin breakdown, and was mounted on a bed that allowed for enough elevation to avoid gagging on your own fluids. When spinal shock wore off and I had more return of function, then I was allowed to go flatter (but not flat) because I was moving more and had less congestion. Fixing skin breakdown is far harder and less successful if you are not repositioned often enough. Air mattresses are hot to lie on, so a cotton pad is often added for maintaining cooler body temperature.
wavewolf I had an air mattress while I was at rehab and not that you mention it, they do get hot! That could also be why your brother doesn't like it kami. Maybe he should try a foam mattress like I have!
Thanks for all your replies. Right from the beginning I believe my brother's situation was made worse from when the police found him lying at the bottom of his stairs and tried to make him walk with what was later found to be a broken neck. They phoned me and said he had a bad gash on his head and was having problems walking so they called an ambulance, but that otherwise he was ok! Lara, he was in Stanmore Rehab Centre for a few weeks after months getting him stable in various hospitals, but they eventually decided they could do no more for him and they wanted his bed for others less infirm so they shipped him out to a nursing home miles away from family/friends. Whilst he was there he got a very bad chest infection and almost died but he was taken to intensive care unit in a hospital, re ventilated, and recovered, although since then he has been much weaker than before. Now he's closer to home but docs now say that if he became so sick again, or if he suffered a heart attack, they will not transfer him to a hospital any more as, even if he recovered, he would be far worse than he is now, which isn't good anyway! So he has it in his notes DO NOT RESSUCITATE. All his family and friends can do now is try to keep him as comfy and happy as possible, and a good bed is key to that. Originally he was getting terrible pains in his shoulders which even with pain killers was too much for him to want to make the effort to get out of bed. I firmly believe that he hasn't had the best treatment over the past 15 months but unfortunately this is partly his own fault for not always complying with doctor's wishes, like getting into a chair, and patient's charter is that they cannot force any treatment if he doesn't want it. So he's just got weaker and weaker because all he wants to do now is sleep and watch TV. At one time he was able to hold a pen and faintly sign his name, I was there and saw him do it, but the docs never believed me and I think they just gave up on trying. Thanks for the info about the turning bed, and also the special pillow, I'll investigate both further.
Right from the beginning I believe my brother's situation was made worse from when the police found him lying at the bottom of his stairs and tried to make him walk with what was later found to be a broken neck. They phoned me and said he had a bad gash on his head and was having problems walking so they called an ambulance, but that otherwise he was ok!
Well that's quite stupid of them
Hopefully your family can talk him into sitting up and getting a little more active, it'll definitely help!
kami, sounds as if your brother's situation is complicated and quite sad. You are a good sister to be trying to help him find a more reasonable path back to a better life.