Bed Advice

[Sue1]

Hello,
We have just had an extension built for my husband Mark, who has FTD MND, as I wanted to create a downstairs bedroom, wetroom and larger kitchen/living room. Its nearly completed and I need to sort a new bed now.

At the moment Mark is physically doing very well and manages in a conventional bed. I say conventional but we've always had a waterbed, which isn't really very conventional is it?!!..lol (Its so comfortable to sleep on and is always warm which i really like). My dilemma is I'm trying to fight the idea of having a hospital bed as I've nursed several family members over the last few years and the thought of NRS bringing one into our home upsets me terribly. He definitely doesn't need a special bed yet but for how long he will stay well enough without is anyones guess isn't it.

Ive been looking at options and I've seen one company called Theraposture who make a bed for various disabilities/illnesses, MND being one of them. What I like about it is that it doesn't look like a hospital bed, and can be any size required, so I would like us to sleep in the same bed whilst we can.

Can I ask if anyone has any thoughts on different bed options or has heard of Theraposture please. At the end of the day I do realise that Mark's comfort is obviously the most important thing to consider, but I want to keep things as "normal" as I can for him for as long as I can. His FTD (Frontal Lobe Dementia) means that he is not able to help me make a decision on this, so I want to be able to make the best decision for him.
Stay Safe
Sue xx

[Ellie]

Hi Sue,

I had a quick look at Theraposture beds and the single bed frames are very similar to my 'hospital bed', but maybe you're talking about the double beds?

I'll give you the pros of a using a profiling bed from my perspective, including how my carers use it, to give you an idea of how it's used in practice - bear in mind though that I am late stage ALS/MND, have no use of my arms, cannot turn in bed so am at high risk of developing pressure sores, have breathing difficulties and have overnight pump feeds through my feeding tube several times per week.

- The bed is lowered for me to get into the bed safely (my husband put me to bed)
- The bed is then highered so my husband's back isn't strained, night after night.
- The head of the bed is raised to help with my breathing (I use Niv) and if feeding in bed, it's dangerous to lie flat due to risk of aspiration.
- The foot of the bed is raised, which is better for me than a flat bed.
- I have an alternating air mattress which protects my skin and it's really comfy.
- In the morning, 2 carers get me out of bed by raising the back of the bed to sitting position. One goes either side of the bed and removes pillows before swinging my legs out and putting the legs of the standing hoist under the bed, lowering the bed slightly and taking me out of bed with the hoist.

Of course it's entirely your choice as to whether to buy a bed or take one from Mark's Community Nurse - I guess there's no harm in asking what's available in the community - but do bear in mind what functionality he may need.

The water bed sounds very cool!!

Love Ellie.

[miranda]

I go through exactly the same procedure for getting in and out of my profiling bed as Ellie. In addition I raise the foot end when my feet become swollen - as they always do when the weather is hot (not due to MND). I also have side rails which enable me to turn myself. During the day the bed has a nice throw and cushions which mean it doesn’t look at all like a hospital bed. Hope you find something that is suitable for now and the future.

[Sue1]

Hello Ellie,
Thank you for your reply and for looking at the Theraposture website. Its the rotaflex I was looking at which actually rotates the user round in the bed so they are ready to come to standing position with the aid of the carer or by themselves whilst they are able i guess. This bed is expensive so I value your advice.

http://www.theraposture.co.uk/adjustable-beds/rotoflex/rotoflex-dual-bed/

Thank you for explaining all the parts of the bed that you need though Ellie, this is very helpful. You are obviously the font of all knowledge and very happy to share your journey with others which is very kind of you.

Hello Miranda,
Thank you for adding your comments. I am sure you have managed to make your beds look lovely with throws and cushions. I am letting my emotions come into my decision making, and thats not always the best idea is it!!... Im not sure how long this company has been making their beds for medical conditions but if nobody on this site has looked into them or brought one Im not sure they can be as good as they say they are.

Take care
Sue xx

[Ellie]

It's a lovely bed Sue, I can see why you like it. I hope the following details don't cause you upset but you write very pragmatically in your posts...

It wouldn't work for me, or for many others with MND, as frequently our neck and core/trunk muscles are affected, making us slump and unable to support ourselves in an upright/sitting position. So if I were in that bed, I'd need two people to get me out of the bed which wouldn't be easy. If you can remember how Stephen Hawking sat in his wheelchair, well that's me. So, picture a person who can't hold her head up nor sit up 'normally' in that bed and not the fit looking man or woman on the website, you might get an idea of what the reality is...

I'm sorry to give you a potential view into Mark's future, but if he were to need a full hoist at some stage, that needs carer access from each side of the bed, making any double bed impractical.

Sorry for being so blunt but, as you say, it's an expensive purchase but as ever it's completely your decision. I hated my hospital bed at first - well, not the bed itself, just the thought of it - but I soon grew to love it, it's just so convenient. Yeah, I get the aesthetics and the meaning of having a dreaded hospital bed, but...

Take care.

Love Ellie.

[Sue1]

Hello Ellie

Thank you for your further advice its very kind of you to take the time to write to me.

Take care

Sue xx

[Ellie]

Sue, have a look at Laybrook Beds for ideas on 'Dual Beds' https://www.laybrook.com/# It's essentially linked twin beds which can separate if/when needed.

I know nothing about them, btw, except that they exist!

Love Ellie.

[Sue1]

Hello Ellie,
Thank you for that link, ill take a look. I actually think Theraposture do dual beds that can be turned into singles when/if necessary. So thats a good point.

I think the fact that no one else has commented on this post about their experiences of different bed options, I think I may be going off at a bit of a tangent! Trust me! lol

Take care
Sue x

[Hayls]

Hubby and I have gone for HSL attachable adjustable beds, I have a free stand overhead hoist that is in place over our beds (6ft wide the beds together plus room for my transfer chair) so I can be hoisted straight out of bed and remain supported at my core, speak to your community OT or local Hospice OT they organised mine, it works so well and hubby and me can stay close to each other while we can, bare in mind FTD he might in the future start to wonder, my dad would get up in the night wouldn’t realise why everyone was sleeping, hope you find some suitable for you both, rainbow hugs xx

[Sue1]

Hello Hayls,

Thank you so much for the idea of the HSL beds. I will take a look at their website. When everyones on the same journey (don't like that word! lol) I knew it must be a well trodden route looking into beds, so I was hoping folk on this forum would tell me what choices they've made.

Take care Hayls
Sue x

[slp]

Hi Sue

I know exactly how you feel and it is a tricky one. When I was first diagnosed the community team threw everything at us and I think that they do that is because everyone takes a different path with this illness. I found it all quite frightening and hated my hospital bed. We dressed it up and it wasn't until we went away for a few nights and had a double bed that I realised that I really missed sharing a bed with my husband. So the bed went back and eight years later I am still in our normal bed because I am fortunate and my illness has progressed slowly.

What I am trying to say is there are no wrongs or rights. Do what makes you happiest and that makes your lives easier but keep an open mind

Take care and stay safe
Sarah xx

[Sue1]

Hello Sarah,

Lovely to hear from you.

Yes thats why the decisions are so difficult as you don't know how things will progress. Im pleased to hear your symptoms are very slow and you still manage to share a "normal" bed.

with best wishes
take care
Sue x