I've been a browser for while bu now I'm in a position where I need some words of advice and support. I'm sure others have been in this situation who may be able to tell me how they coped with it. Firstly my husband has MSA he first started showing signs about 7 years ago and was initially worried it might be MS because his mother and aunt both were diagnosed with it. Test and assessments confirmed Ataxia type C then gradually over the last two years with other symptoms manifesting he was diagnosed with suspected MSA. In December just before Christmas he was hospitalised with suspected pneumonia, he responded to treatment quickly and was home three days later in time for Christmas. Six weeks ago he was hospitalised for the second time with the same symptoms, responded to treatment and was home the next day. On Friday last week he was again hospitalised with shortness of breath and high temperature. The Covid test was negative and he's responded to treatment but much slower than before five days later and he's still in hospital, still weak and unable to do the things he normally can. I received a call from a Therapist today saying that they want him home as soon as possible to reduce the risk of exposure to Covid but when he comes home he is going to be bedridden. They've told me he needs a hospital bed which means I'm going to have to get rid of our King Size and buy myself a single. I'm not sure both beds will fit in the bedroom. We live in a small 2 bed apartment with my son in the second room. The open plan living/dining/kitchen is quite small and there is no room to put any of the bedroom furniture except the bedroom. This has been quite a blow and to make things worse I cannot talk to my husband about it properly as I'm not allowed to visit him and telephone conversations are really difficult. Gosh this is long, sorry. How have other partners adjusted to this huge change in living and lifestyle.
In need of some support: I've been a... - Multiple System A...
In need of some support
Hello IvyRose,
Welcome to HealthUnlocked, so sorry you need to be here and also sorry that the beast of MSA has turned it's screw on you at the moment.
I wish I had some experience of what you're talking about to help, but I haven't. All I know is that the beast makes life difficult when you can least manage it.
One thought, is that one of our members in the Three Counties Support Group, who is a regular contributor here, mentioned a bed that has a recliner on one side and is a standard bed on the other. He may reply to this post however if not I will text him and ask him to add something if he thinks it suitable.
The very best of luck, and take care, Ian
Hi IvyRose
Like you my husband has now got a hospital bed but in our case the lounge/dining room has now become his bedroom with quite a bit of furniture removal and rearranging. He can't get to the bathroom so the kitchen is the place I wash him. I know that this is no help for you but I never thought I would cope without being able to get him in the shower, but I do. I have found that when things have sounded impossible somehow we just seem to adjust and manage. So often I have been feeling despair at the changes in our lives but we get on doing the best we can and it works.
Hopefully either a bed like the one Yanno mentioned or a single for you will fit. I wish you all the best.
Jan
Thank you, I know we will manage I think it was such a shock receiving the call our apartment doesn't allow for us to have a bed in the living area unfortunately I'm going to research that bed though. As it turns out a call a few hours later has determined that he will be in rehab in the hospital for another two weeks. So plenty f time to adjust.
Hello IvyRose and sorry to have you here, but glad you are reaching out.
You are on the hardest part of the journey where the condition takes away all mobility and your husband will become totally self reliant on you and help.
Firstly accept all the help you can get as a bed bound sufferer is hard for one person to deal with physically.
This is the same journey I am on with my wife Sue with a hospital bed and multiple chest infections.
A hospital bed is very similar size to single bed so you should be able to put two singles in the room, but to move your husband about you may need lifting equipment which will need room.
You should get a visit from social services and an occupational therapist to best advise.
Also reach out to the MSA trust as they have support that are seeing this situation every day.
If you need more information you can message more on the board or ask for a direct connection.
Good luck, be safe, ask and accept all help.
Paul
Thank you so much for your reply. I received a call a few hours later to say that he was being kept in for two weeks in rehab so I've got some time to sort things out now. The room is arranged with lots of space on his side to get the wheelchair in and I can get rid of some of the clutter too. I think it will work, it was just a shock really I wasn't expecting it. When he had the chest infection February he was still very independent when he cam home, was able to get in and out of bed without assistance. We knew that this was coming but it's happened very suddenly. The hospital staff have been lovely but of course our biggest challenge is the lockdown, everything is being done over the phone but at least in hospital he will get face to face assessments.
Sorry to hear about your husband. I understand your worries about the changes that are happening. You might find that things have deterioted quickly because he is poorly at the moment. I know whenever my mum was ill her msa symptoms worsened. It is hard to adjust to change especially when the changes are not what you had planned. Hopefully you will get things sorted though and it will soon become the norm. My dad was so reluctant to have a hospital bed for my mum and put it off for as long as he could. But he struggled for a long time trying to get her in and out of bed and when I look back i realise how hard it was for him. Having the hospital bed and hoist made life so much easier for both of them in the long run. But difficult to except at the time. I hope you get things sorted xx
Hello, I remember my Mum and Dad having to adjust to the rearranging of the house, so I hear you when you say it is a shock. I guess he will understand you might need to make some quick decisions, without much discussion with him.
Here are some practical thoughts: In our area the GP surgery supplies hospital beds with standard pressure mattresses, but I would press for an airflow type one, that plugs in, as they are even better for pressure relief. I imagine he will currently be assessed by a hospital occupational therapist and physiotherapist. They should be assessing things like if it might require 2 people to turn him in bed etc, and if he might require a care package on discharge.
I would make sure the OT has initiated a referral for you to a community OT (that works for the local authority) to give you ongoing support on these practical arrangements/hoists etc, once he is home. They can help with measuring clearance for wheelchairs, and much more. Ask for a contact number for them, and if they don't contact you, feel free to call them.
You are in a good position to negotiate with the rehab/discharge team (sorry that you might even need to) about care, as people who are being discharged from hospital tend to be given priority consideration for care packages. Where we are, the rehab team has a community follow up team that pops in twice a day once the person is discharged, until they are rehabilitated or a care package is found. I would expect them to have a proper conversation with you about this, and what you and your son could/couldn't physically manage, given any health conditions, or not being around because of work etc. I'm sorry that this will probably feel like another quite challenging thing to be considering. I remember it did feel a bit overwhelming at times, as its a huge adjustment. I think we just got on with things when we felt strong, and took a bit of time out when we didn't. I hope this helps a bit.
I'm so glad to see people who have not posted before on here now doing so.
Kx
Thank you for your reply and some points you raised that I hadn't thought of. It looks like he's going o be in hospital for another two weeks while they assess him, they've already realised that in his current condition I will not be able to provide the support he needs, especially as due to the lockdown carers may not come in. We already had a community OT who is very good. Kind regards.
Hi. I am sorry that you have found yourself in this situation and not being able to visit your husband to see how he really is must be frustrating. In my experience whenever Geoff had been in hospital he was far less able than before he went in. With all the best will they have to deal with the acute illness but can’t necessarily give the time to minute by minute care like you would. I always found that Geoff improved slowly once he was home and we dealt with things day by day trying to do what he could do , with the equipment supplied, to sit in his chair or on the shower/toilet chair.
Hopefully the time in rehab will help to improve his ability to sit up which will make such a difference.
I have more space, so things were easier for us and we managed to keep our king size bed because I was able to do most of the care. If we had needed regular carers then I would have had to change and had had many hours wondering how to arrange the bedroom and how I could keep/store the bed with a hospital bed as well. I did think about the bed with one side which adjusts, but do be sure that the carers would be able to get to both sides of your husband for his care.
Wishing you all the help and support you need to make your home a happy and safe place for you both in this next stage.
Diane
Thank you, I hadn't thought about carers needing to get on both sides of the bed thanks for pointing that out. I'm hoping that he will be able to come back to our bed on release from the hospital so we can talk through this together. Kind regards
Hi Ivy Rose
this must be incredibly tough for you just now.. Are you connected to the District Nurses? They ordered Gills hospital bed and i'm so glad they did.. it was definite the answer for us. i then popped and small single bed at 90 degrees and it all seemed to work ok but of course it will be different in every room. there is a need to move the hospital bed to gain access from both sides so there has to be a bit of extra space or turning room. The bed was next to the window and because of the elevation function i could lift gill up high enough to see out onto the garden or what was happening on the street.
you may need to engage with the Occupational therapy folk to discuss lifting needs now and going forward.. they were incredibly helpful for us.
wishing you the every best of luck.!! please continue to use this site .. you'll get lots of support as things change and difficulties arise
hello. Welcome to the page. Myhubby is not as bad as yours (yet) but the OT has suggested different beds for us which we both have said no. She said she would try to funding for us, but sent me links to specialist beds, where one side is medical and the other is normal? Mabye that is something for you to consider?
Theraposture and Laybrooks are the the companies she mentioned. However they are not cheap, but a double bed is still a must for us too!
Thank you, he is adamant that we still share the same bed but logistically although I've worked away to make space for the bed Ir realise that as we're on a third floor apartment logistically they won't get it into the apartment anyway, no-one's going to want to carry a hospital bed up three flights of stairs.
The community profiling beds are modular and built in situ, so the 3rd floor aspect may not be so significant...
We made it work in the smallest of downstairs guest rooms with a 2ft6in adjustable single alongside the community bed. There was no cat-swinging allowed for, but it worked for us. Still shared the same duvet!
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