My husband is quickly losing his ability to support himself and we may be moving on to the next stage... using a Hoist Lift. The OT suggests we get a hospital bed to better accommodate the transfers and save the backs of the carers. I am not sure what to do? We currently have a king size bed with individual remotes to lift the head and foot of the bed on each side (my husband has to sleep with his upper torso lifted on an angle to keep feeling like his lungs are filling with water... if he lies flat he feels like he's drowning) and his feet elevated too... to keep the swelling down that occurs. The hoist is built into the ceiling... not a mobile one. So if we get a hospital bed... I would have to move out of the room and sleep in the 2nd bedroom. This would be an adjustment after 31 years of marriage! What arrangements to others have? Any suggestions?
Hospital Bed the next step? Other sl... - Multiple System A...
Hospital Bed the next step? Other sleeping arrangements? May need to use a Hoist in near future.
Hello heysunshine.
It's not easy is it moving on to the next step, is it too early, whats coming next and when is it coming.
We had a single hospital bed delivered for my wife a few weeks ago after 43 years in our double bed.
She now has just enough strength to stand for the commode, she can feed herself if it's cut up and that's about it,
Everything else is managed with assistance, dressing, washing etc etc.
I struggled to keep up with the washing due to continence issues and the hospital bed has helped a lot.
Our bedroom is big enough to put 2 single beds in so I purchased another one and it's now next to my wifes, perhaps you could do that and wheel in a hoist when it's required.
Must admit it is easier being in the same room as I can keep my eye on my wife during the night and if she needs the commode in the early hours that is also in the room with us.
We do not have any carers coming in but the lifting is beoming harder and we too may have to have a rethink soon.
We have tried various lifts and mobility aids but to be honest they are quite large and more suited to a nursing home, we just couldn't get them to fit in our home very well.
We need more money and a purpose built home........but who doesn't 
Keep smiling I'm sure you're doing the best you can heysunshine.
That's what I have to tell myself when things are not going to plan, " I'm doing the best I can " and let's be honest most of us have never done this before have we.
Thank you so much for your reply... The suggestion of buying another single bed is a good one and it may work. I will have to do some measuring to see how this can be accommodated due to the hoist being permanently secured to the ceiling. Maybe I could have the hoist tracks moved to accommodate both beds and room to get around the hospital bed if required.
Also, thanks for the pep talk... I am doing the best I can... like all of us, as you expressed.
Good morning (or whatever time it is when you read this)
I know how difficult I found this when I was in the same situation just a few months ago. Alan was admitted to hospital with pneumonia on April 3 and contracted Covid-19 whilst there. He spent 13 weeks in hospital and the need for a hospital bed and hoist and carers was evident. I too struggled , we live in a small 2 bed apartment, our son still lives with us. I couldn't see how I would get the bed in. We've been married for 35 years and have a Kingsize bed. I considered getting a single so that we could be in the same room as each other. Anyway our circumstances are perhaps slightly different, when the OT came out to assess the apartment she decided that the best place for the bed was the living room. We have an open plan arrangement, but the decision was made because the floor is hard wood. she said the carpet in the bedroom would make is more difficult to move the hoist and bed plus and 'spills' would be easier to clean up. We were both sad about this, however when we considered that for almost 4 months we weren't even in the same building the thought of separate bedrooms didn't seem so awful. As it turns out this arrangement has worked really well. All is virtually confined to bed and on the days he does get out he's usually only able to manage a couple of hours in his chair. If the bed had been in our bedroom we would be spending most of the day and evening in separate rooms. When visitors come he is able to be part of the group and isn't isolated. We have carers in four times a day to meet his personal needs, the hoist in mobile, although we own the apartment the leaseholder has refuse permission for a ceiling hoist. I moved the Kingsize bed up against the wall to make room for some of the living room furniture and even though there's a bed in the Living area it isn't crowed or cluttered. He has a lovely view out of the window onto the river and feels like he is part of the family. Sadly since the last bout of aspiration pneumonia he is now incontinent but already had a catheter fitted whilst he is in hospital.
We've set up an alarm system if he needs me in the night but the apartment is small and we have the doors of both living room and bedroom open, I heard him when he needed help a few weeks ago.
I hope you are able to work out what is right for you to be able to enjoy being together.
Thank you IvyRose64! My husband's mobility has become very limited (pivoting to get into his wheelchair or powerlift chair only). He had a suprapubic catheter inserted on Friday and we are also learning all about that! But this allows him to sleep throughout the night without having to wake up (and get me up) an be toileted. It also allows him to be up watching TV without having to transfer every 2 hours to use the washroom, which was becoming very difficult for him (mobility wise).
If we end up in separate rooms, maybe I will get a "baby monitor" so that I can hear him when he needs me.
He requires assistance with everything now, so I am also going to look at increasing the hours that a PSW caregiver comes in too.
Thanks for your feed back... very helpful to me!
Hi. We are at the stage of enlarging a room into the garage and creating a wet room so my husband can sleep downstairs. We have a system similar to his alarm system whereby he can alert me if he needs me. This was provided by the alarm company. The only problem with a baby monitor is if the patient has active, noisy dreams you can hear them. Hope this helps.
Heysunshine,
Unfortunately this is something that Sue and I had to face after 35 years of marriage and we had the same bed also before.
It is a wrench but also the best thing we did to give each other some good sleep as I was "listening" to sue and waking up each few hours to make sure she was ok.
I now have a separate room and have a video baby monitor to watch over her.
If you do not make this transition it would be certain that you will injure one or both of you....
It's a hard thing to do but just chat about it and set up some new rules to assure each other.
This condition robs you of everything, all you can do is talk and adapt.
Be strong and loving.
Paul & Sue
Paul, your words and experience are immensely helpful and reassuring. Thank you for making me feel better about the next steps to be taken.
With this forum... I know that I am not alone on this journey!
Blessings.
hello
my dad moved into the spare room as he used to wave his arms around in the night and my mum was worried he might hit her by mistake , the rooms were very close , so she could hear him if any problems , she then got him a hospital bed , which was good as it had a rail to stop him falling out
it was very hard for them as being married for 60 years , hardly ever spending a night apart
i hope you find a resolution
sending love x
elaine
Thanks Elaine,
As read through the replies, I am feeling better about the transition. Your comments help me process this next step.
❤️❤️
I feel your pain. The gentleman I looked after got a hospital bed with a remote control and an air mattress this was with FloCare. You’re OT or the CQC should be able to help you with this matter, and if not I’d even try through here the MSA trust.
My patient had to always be at a angle if not he’d have fits. His partner used to have a single moveable bed and sleep next to him in the early stages then when he passed on to having 24/7 care and she went back to work they decided that she could no longer sleep with him.
I hope this helps. We’re here to help you And stay strong 💪🏻 x
Trying to stay strong and pragmatic! This disease just takes so much out of you.
thank you for your encouragement.
We are approaching the same problem as well so I will be interested in the replies although this is no help to you
Let's be glad we found this forum! Their words of hope, help and encouragement, not to mention real solutions is invaluable!
We moved into our small downstairs bedroom when the profiling bed arrived. I bought a small single adjustable bed to go alongside it. With the power chair, there was no room left for hoists or swinging cats, but I managed to make it work, and we did at least sleep under the same duvet! No regrets.
"Making it work" is my new mantra!
It reminds of the song by the Rolling Stones... ' You can't always get what you want' ... but if you try sometimes, you just might find you get what you need...
Hi. We had a ceiling hoist over our king size bed. It wasn’t an electric bed but the OT arranged a variator to lift the head end, and raisers to make it a bit higher, but my husband was able to sleep comfortably on his side right to the end. The care agency would have preferred us to have a hospital type bed, but as I did most of the care alone they didn’t insist.
I do feel for you having to make this decision if there isn’t enough room for 2 beds in the same room, there would have been Space in my bedroom if it had come to it.
All these little losses of normality are so hard, try to keep finding something to smile about every day.
Diane.
Hi Diane,
I am going to try to see how the ceiling hoist works for us for a while and if it can accommodate my husband with our existing bed. My main concern is for his comfort and care. Emotionally, I am just not ready... but everyone's personal experience and input helps me alot.
Hi,
My parents had the same problem once dad needed to have equipment to transfer. It was heartbreaking for them to lose this little bit of normality after having to adapt to many of dads symptoms.
Dad did have a profiling hospital bed and mum had a single bed next to him. There was room for the equipment also alongside luckily. It's amazing how much room it all takes up.
Before all of this they had just purchased a lovely king size electric bed but although the head and foot area were adjustable, the height wasn't and they needed that to assist moving dad in bed and with transfers. It also assisted the carers greatly. Dad also needed rails otherwise he was in danger of falling out of the bed.
I hope you manage to find something that works for you both.
My heart goes out to you as this condition is not easy to manage.
Helen xx
You have explained exactly the stage we are in and the conundrum with the adjustable head & foot but not height! I forgot about how the rails would keep him safe too.
Honestly, I am probably in denial about just how much care he requires and is going to require once he really has to rely on a hoist for transferring. I am not even sure that he will be able to use his power lift chair in the living room because there is no hoist there unless we also buy a mobile one? So many decisions to make...
We did buy a separate Mobile hoist downstairs for getting in and out of the recliner chair. They are quite hard to manoeuvre on carpet but getting a system where the hoist is directly in front of the chair and then a straight push when your husband is in the hoist does work. We bought a folding one that would go into the car (wheelchair adapted vehicle) to Go away on holiday.
I think that after the diagnosis phase, this is the hardest bit when your husbands symptoms are changing quite quickly And they are making big changes to your way of life. I found that we did get to a point where things settled as he could no longer do anything for himself but with the hoists, wheelchair, WAV and we also had a through-floor lift then we got a way of life that wasn’t what you would choose, but became a kind of normal for us.
Diane
Hi. Sadly I too have to sleep in another room. In our case it started when Alan became quite violent in his sleep due to acting out his dreams (I think there is a name for it but can't remember). He also suffers from sleep apnea so I often spent my nights nudging him to start breathing. I usually knew when he was going to thrash out because his body would start jerking but sometimes I missed waking up till it was too late and I'd been hit!! He is such a kind gentle man that gives completely the wrong impression. Anyway he then moved on to a frame that went under the mattress and raised and lowered both ends so I moved to the spare room after 46 years of sharing the same bed, so sad. Soon after this I could no longer get him up and down the stairs so a hospital bed was fitted in the living room and that is where he still is. I have tried using one of the baby alarms but his shouting and snoring while sleeping are so much that the alarm kept me awake most of the night so I had to give that up! He does have an alarm that he used to wear like a watch that rings a company if he fell over (which he used to do a lot) and now he uses it in the night if he needs me because by pressing it it sets the telephone off and that wakes me up 🤣. Luckily we have a downstairs loo which is tiny but I can just about manoeuvre him in there when he is on the commode and I wash him in the kitchen. It is a long way from ideal and way back I used to think that I would always get him showered every day even if I carried him up there but reality strikes and now I just do my best. The council were/are supposed to be making alterations to our house but everything has come to a halt due to Covid. My next hurdle is getting a better wheelchair for him as he finds it very hard to sit up and leans forward and sideways really badly now - I pack cushions round him in the chair but he still slips down. If we do get a bigger and better wheelchair I'm thinking I won't be able to get that in and out of the boot of the car so that is my next problem. But anyway it's a performance setting up three ramps just to get him out of the front door and then I can't get him out of the wheelchair and into the car because he is too heavy for me to lift so Covid has given me an excuse to keep him in. I often pass by bungalows and look at them with great envy but I find that as each change comes along and MSA progresses we adapt and cope. Best wishes to all who read this and are on the same journey.
Jan
Hi Jan,
I feel for you... truly... you seem to go through the same feelings and ups & downs that I have been experiencing.
My husband Carl also has REM Sleep Behaviour Disorder (the acting out of vivid dreams with hitting, kicking and shouting). He also has sleep apnea... so I know of what you speak when you say you were waking up frequently to give him a nudge!
Fortunately, we have been able to acquire state of the art wheelchair, power lift chair etc. that he has required. But we recently realized that he cannot do transfers into and out of the SUV any longer due to his decreased ability to support his own weight making transferring difficult and pushing him in a transfer wheelchair difficult for me too. So now we only use Handi-Taxi or DARTS (handicap accessible transit) to get him out to appointments etc. Luckily we also have a system which allows us to purchase discounted Taxi coupons each month and the DARTS is subsidized too. Life sure changes quickly. But we had to go through the exercise of trying to get him in and out of the car before he was willing to admit that he couldn't do it any longer and that it was way too much work for me to try to get him in and out (at least twice each trip you take anywhere). I have to decide if I will keep my existing vehicle or down size to a smaller vehicle to get about town (more cost effective). Just another decision to make because he will no longer share any car trips with me! The thought of doing all the things in life without him being included just sucks!
But as was said earlier... we cope & manage to do the best we can...
Hello there again. Yes Al has REM sleep disorder and sleep apnea, we've got a Cpap machine that helps that. I had forgotten that he used to keep me awake with this, Oh and I've been hit, kicked and had my hair pulled on occasions when he's been acting out dreams. We applied for and got the higher level DLA for mobility over a year ago and have a WAV through motorbility. It's a lovely vehicle with an electric hoist and ramp which Al controls to get in the back of the car. I don't drive so my daughter has the car which she loves as she would never be able to afford a brand new car and she loves taking her dad out with the grandchildren. I feel a bit envious sometimes when they've done stuff that I can't do because I'm at work. LOL. Before that we used taxi's all the time but in our area they are quite hard to find and most companies use them for school runs so if we needed one around 3 O'clock in the afternoon we were stuck. We used the bus a few times for the short trip into the nearby town centre but Alan didn't like this as he didn't;t feel secure, plus we had a bad experience of a rather rude lady complaining that she's been waiting at the front of the queue for ages and we shouldn't be allowed to get on first.!
Our alarm system is quite simple, we have Alexa and Alan just needs to shout Alexa help and it rings the house phone which is next to my bed, and one by my son's bed so both myself and he would be woken by it.
HiJan,We are facing the same issues. Our alarm company provided a mobile alarm system as well as the central one. If I am outside or sleeping in another room I can be alerted without alerting the call centre.
It is really hard giving up sharing a bed. We both miss the bodily closeness but I know the hospital bed and sleeping downstairs is the answer for Tony.
Hi Heysunshine,
Here's the perspective of an MSA-sufferer. I caught a chest infection about 9 months ago and could no longer get up the stairs to bed,so OT quickly arranged for a hospital bed downstairs.
Now they're back to install a hoist and commode as my strength in my legs is going. I'm only 55 this year! Good luck for the future to you both.
Thanks for your perspective! I guess we just gotta do what we gotta do. No point lamenting it any longer. My main goal is just to make life as comfortable for my husband as possible.
We had a hospital bed for wife it prevented Bed saws
And it was easy to life her out of bed
And it might make your husband more comfortable because bottom middle top
Lifts up with button
Good luck
With the arrival of the hospital bed we had to sleep in different rooms. I had a baby monitor but it was very disturbing. The best part about hosp beds that hasn't been mentioned thus far is the ability to raise the bed in order to change pads, put on sling for ceiling hoist, dress etc. Towards the end my husband was unable to stand or even sit by himself. Enormous help in saving your and the carers backs. I have fibromyalgia and find bending over very painful. It is best to be prepared for any eventuality and to do it sooner rather than later as almost everything takes a huge amount of time. OTs are your best friends!
Enjoy every minute if possible because even though you know the inevitable outcome when they are gone it is absolutely overwhelming. I cannot write this without crying! My thoughts are with you all. Courage.
♥️
Hi there.I’ve been reading through the forum and stumbled across yours and all the wonderful support you received.
Can I ask what you decided to do and how it worked out for you and your husband?
We are currently looking at the electric beds but the comment about height was interesting.
I’d be grateful to hear xxx
Hi Kaye31,I never had to make an decision. As AMBD noted in the previous reply, my husband was at the point where he could no longer support himself... and within weeks just passed away.
It was not unexpected... at some later date... so it seemed quite sudden!
His decline was very rapid from losing almost all mobility (barely able to transfer from bed-to-wheelchair or transferring to the toilet) and use of limbs and almost not being able to speak to just passing away.
So I can only echo AMBD's sentiments about savouring every minute because when the inevitable happens, it is most overwhelming.
💔🖤
I’m so so sorry xxx thank you xxx
Overwhelming is the word. It is now just over two months since I lost my lovely husband and I still can't stop crying. Have a doc telephone appointment next week. I reiterate, make the most of every moment. Love and strength to all. Alex
When we reached the hospital bed stage, it was before the hoist was needed (and as we live in a cottage, a ceiling hoist was never an option). I went out and bought an adjustable 2’6” single bed and put it alongside, ensuring that we slept under the same duvet! The hospital bed will have wheels and the single bed could be pushed out of the way. When the HB was lowered completely, they were at the same level.
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