Hello am new here and need help with a bed please

[Memory Creator]

Hello I am caring for my husband who first showed symptoms a year ago, was diagnosed in August and now can barely walk or use his arms. We are doing OK all things considered, take each day as it comes and keep asking "What is possible here now?" We are cared for by a Macmillan team who are fab but their advice appears limited by NHS funds. My husband finds sleeping very uncomfortable as his hospital profiling bed is too narrow for him to be able to turn from side to side. He cannot shift his torso from one side of the bed to the other and so needs a wider bed to be able to do so. We would really appreciate your thoughts on the best and most comfortable beds and mattresses as a good night's sleep will make all the difference I am sure. Really appreciate you reading this. Thank you. Stay strong.

[Ellie]

Hi Marion and welcome to the Forum.

Can you push for a bariatric bed on safety grounds? I'm not suggesting your husband is large, but the profile beds, at only 90cm wide, can be too narrow for someone with mobility issues to be able to turn comfortably and safely.

If they won't give him a wider bed, side bars, though unsightly both physically and psychologically, can be useful as a grab rail and for safety. But I'd push for a wider bed first - whoever orders equipment has some duty of care that it is fit for purpose.

What type of mattress is your husband currently using and what problems is it causing? There are numerous types of mattressess out there and it's a case of finding one which matches his requirements. Really his OT or nurse should have assessed him and ordered an appropriate one.

Good luck.

Love Ellie.

[Deb]

Hi Marion and a very warm welcome to the forum. It's the right place for emotional and practical support from people who really understand.

I just wanted to welcome you. I have no experience of hospital beds, although I am sure others on here will have more practical advice. My legs are effected but I have still enough strength in my arms to use them to lift my legs to turn. I have a rail by the bed to help me and I have to take the duvet off when I turn . I go back to sleep but it wakes my hubby !! The OT gave me a bed frame to lift the duvet and some slippy sheets . I am not keen but it might help your husband.

Wishing you both all the best,
Love Debbie x

[Kayleigh]

Hi Marion,

Welcome to the forum.

I am sorry to hear that your husband doesn't find his bed comfortable. It should be the case that we are supplied with a bed and mattress that is appropriate for our needs. We shouldn't have to pay for these - but perhaps it is a bit of a 'postcode lottery' concerning the type of beds/mattresses that can be supplied for us free of charge. Hopefully your husband's OT or nurse will be able to source something more suitable for him.

If you haven't done so already, it might be worth contacting your MND Regional Care Development Adviser, because she/he will probably know what should be provided free of charge for MND patients in your region. The RCDAs are very friendly and knowledgeable, and they are great people to contact for support and advice. For further info and contact details, please click on the link below:-

http://https://www.mndassociation.org/getting-support/mnd-regional-care-development-advisers/

A gentleman on this forum recently recommended an 'active mattress' as being very comfortable. He uses it with his profile bed and I think it was provided free of charge for him via his local hospice.

Very best wishes to you and your husband,
Kayleigh

[Lynne K]

Hi Marion. Welcome to the forum. I too am sorry about your husband not being comfy and not being able to turn in his profile bed. Good luck with finding a solution. Lynne x

[Guest]

Hi Marion we had the same problem we bought our own bed from bensons as you get the VAT back as it’s for medical needs we got the beds that move and got separate single mattresses as my partner moved himself with the remote several times a night you can get a super king bed if you need more room for your husband plus you still get to share a bed and feel close to each other xx

[nunhead_man]

Hi Louise

Just jumping into this thread because it's interesting for us too - strangely because I'm still fairly early on in the disease but my wife has a bad back and we need to buy new bed having had the existing one for at least 15 years and just wondering what might work for both of us over the lifetime (say 10 years) of a bed.

Who is it best to get advice from team do you think?

Best

Andy