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Spiersey
25th February 2019, 14:14
My husband was diagnosed in December 2018 aged 48, at which point he walked into the clinic. Just a few months later and his mobility needs are significantly impaired. He has completely lost the use of his left leg and has foot drop and is now getting weaker in his right leg and upper body. He walks very short distances with crutches and we use a borrrowed wheelchair for any distances. He no longer comes out shopping etc although we have bought a cheap mobility scooter which he occasionally uses to watch our childrenís football matches. We live in a private rented conventional house with a through lounge diner and downstairs wc. He is now unable to manage the stairs without me physically stood behind him pushing up each leg individually, which not only puts a lot of strain on me but if he fell he would absolutely take me with him which is rather worrying. It is likely we will be putting a bed in the dining area of the downstairs sometime soon but this is not ideal as he will lose all of his privacy and have no washing facilities. We have been very well supported by our physio and OT and have had some adaptations to help around the home including raised toilet seats and crutches and we have an appt in a couple of weeks with wheelchair services so cannot fault the services.

To add to our woes after approaching our landlord to see what adaptations he would be happy for us to make, and we were completely honest with him as to the situation he decided that he wanted to sell the house and he will therefore be giving us notice although we donít yet have a date :mad:

Knowing that my husband will soon be giving up work and potentially myself becoming his Carer and therefore cutting down my hours and not earning the same amount, we realistically will be unable to afford another private rent.

When you fill in application for housing association and the like and put in our salary we go straight to the bottom of the list as there is no box to fill in for changing circumstances.

We do not know when we will need to move or when his condition will change again and if so how, but we do know that things seem to be deteriorating very quickly and we cannot manage in our house for much longer but cannot find anyone to help with what are our options to move this forward.

Has anyone else found themselves in this situation or can advise who we can talk to, to get further advice please, Iím stuck in this rut and feel like I have the whole world on my shoulders not only coping with the MND but this as well :(

Any help appreciated

Claire

Newbie17
25th February 2019, 14:32
I’m so sorry Claire. That’s more than anyone should have to cope with
There are lots of very knowledgable people on this forum that I’m sure will be able to offer advice and points of contact.
Have you spoken to the mnda?
I hope you soon get the help and support that you so need.
Love and a big hug
Helen x

Kayleigh
25th February 2019, 16:28
Hi Claire,

I feel for you and your family. I was approx your husband's age when I was diagnosed last year, and there is enough for the family to come to terms with, without having to worry about housing and financial issues.

I cannot advise you from experience, but it might be possible for your husband's OT to support your housing application - perhaps with a letter recommending that you are made high priority for housing on medical grounds, and also because you are going to be made homeless and can no longer afford to rent in the private sector.

I think there are some people on this forum who have moved from renting privately into council or housing association accommodation, and they may be able to advise you from their experience.

If you havn't done so already, you could also phone the MND connect helpline and/or contact you local MND Regional Care Development Adviser for advice:-
https://www.mndassociation.org/getting-support/mnd-regional-care-development-advisers/#

I am sorry that you have got so much to deal with. Hopefully wheelchair services will provide your husband with an electric wheelchair, which could help with his mobility indoors as well as outside. It might also be possible for his physio to provide him with a rollator, which might be less tiring than using crutches.

Sometimes the MNDA can provide funding towards the rental of a stairlift, but I think an application for this funding would need to be made via your husband's OT.

Love and best wishes to you and your family.
Kayleigh xx

shrew
25th February 2019, 17:11
so sorry to hear of your predicament Claire. I too worry about the suitability of our house. we dont even have a downstairs loo. Im sure someone will be able to offer you some advice

Music man's wife
25th February 2019, 21:37
Hello Claire, I'm very sorry about the situation you are in, we were in that same predicament a couple of years ago.
We owned our own home but couldn't buy anywhere suitable as we live in a very expensive area. We got a very good letter from the OT and that sent us up the social housing list. We were offered the next suitable bungalow.
Could you phone social services as well? A few good letters wouldn't harm.

Music man's wife
25th February 2019, 22:50
Just thinking I should be more specific in my response. We live in Cumbria so had to apply online. I think the form was fairly simple. We then got a letter from the OT saying our house was not suitable and could not be adapted to be made suitable. We sent this letter off and a couple of days later phoned and checked they'd received it. We were deemed then to have a medical need.

All the housing associations here list available properties weekly, we had to apply for the one we thought was suitable. This was just ticking a box. They call it bidding but it doesn't involve money.
We were offered the first property we bid on. When the housing officer rang he said it was because we had a medical need. 28 other people bid on the bungalow we got.

From start to finish it took about 4 months, even though we were offered the property fairly quickly it had to be refurbished.

Anyway I hope you find something suitable. Good luck.

Spiersey
26th February 2019, 09:47
Thank you for such great advice, we have the OT coming out next week to assess the house and hopefully write a report which we can add to our housing application so fingers crossed this may help although bungalows in our area are few and far between? I will try Social Servicees as well, as you say more letters cannot harm. Fingers crossed x

Spiersey
26th February 2019, 09:48
Thank you Helen, much appreciated x

Spiersey
26th February 2019, 09:50
Hi Kayleigh,

Thanks for all your advice I will contact the MNDA advice line to see if they have any further suggestions.
Will wheelchair services opt for an electric chair straight away in your experience?
Claire

Kayleigh
26th February 2019, 10:19
Hi Claire
Sometimes a manual wheelchair is issued first. I expect it depends on what your local wheelchair services assessment criteria is. Your husband's physio or OT might be able to advise you about this.
Love,
Kayleigh x

Deb
26th February 2019, 16:06
Hello Claire,

I am so sorry that you have such alot to cope with... it's too much!
The early days after diagnosis are such a shock and it is so scary when you know your home is not suitable or safe for you. Hopefully your OT will be really proactive in helping you get suitable housing, which should be such a relief for you. Before we moved my husband used to lift my feet on the stairs . Looking back now that was so dangerous and he was strong enough to lift me.. I couldn't have done it if it was the other way round.

It might be different in other area but our wheelchair services will provide one manual and one electric wheelchair. The electric one is a heavy neuro chair so you would need an adapted car to go out with it. We funded a lightweight folding electric wheelchair for me to use in the house and to get in and out of the car quickly.

I am so sorry because everything must seem so overwhelming at the moment. I know it's easier said then done but do try to take one day at a time. Like your husband I have had periods of progression and then times when there is a plateau.

Take care of yourself too because that is so important. I hope you have love and support around you.
Love Debbie x

Lynne K
26th February 2019, 16:46
Kayleigh is right. I got a light weight portable manual wheelchair first. Getting my powered wheelchair was hard. You have to prove that you need it indoors and outside. My OT got them to get me one to cut down my falls inside. The guy who came to assess said that they wouldn't usually have given it if I can still use a walker indoors. But because my OT had stressed about my falls he reluctantly let me have it. Lynne

Barry52
26th February 2019, 23:24
It is so wrong that the wheelchair assessment is based on your ability or not to be mobile in your own home. We all know (me especially) that falls are our worst enemy and we should not have to endure injuries to prove this.
There is a huge disconnect between wheelchair services and the MNDA.

Barry

Spiersey
27th February 2019, 09:49
Hello Claire,

I am so sorry that you have such alot to cope with... it's too much!
The early days after diagnosis are such a shock and it is so scary when you know your home is not suitable or safe for you. Hopefully your OT will be really proactive in helping you get suitable housing, which should be such a relief for you. Before we moved my husband used to lift my feet on the stairs . Looking back now that was so dangerous and he was strong enough to lift me.. I couldn't have done it if it was the other way round.

It might be different in other area but our wheelchair services will provide one manual and one electric wheelchair. The electric one is a heavy neuro chair so you would need an adapted car to go out with it. We funded a lightweight folding electric wheelchair for me to use in the house and to get in and out of the car quickly.

I am so sorry because everything must seem so overwhelming at the moment. I know it's easier said then done but do try to take one day at a time. Like your husband I have had periods of progression and then times when there is a plateau.

Take care of yourself too because that is so important. I hope you have love and support around you.
Love Debbie x


Thanks Debbie,

I am blessed with family and friends who want to help and support x

Thank you for your kind reply xx
Claire x

Streetwise
27th February 2019, 10:25
how strong is your husbands grip? if he couldn't operate an electric wheelchair it will be a waste of time ,our application for housing was fast tracked !after !!!!the occupational therapist (Who was very helpful) had assessed my mother, she was offered a bungalow but by then a bedroom it been built with a disabled shower, which she couldn't use, I wish I'd had more assertiveness!! as it took a long time to get the wheelchair !but it's hard to feel assertive !!when you're watching the person you love suffer !!!!!!.

MNDConnect
27th February 2019, 13:13
Hello Claire,
I am so very sorry to hear about your husbandís diagnosis of MND and the subsequent struggles that you and your family are facing as a result of his deteriorating health. Please know that we are there for you and your family.
As you have raised several issues and concerns, I think that it would be helpful to talk to you in order to explore ways in which we could support you all.
With regards to housing, I was so sorry to learn that your private landlord is now looking to sell your home and as such I wondered if we could give you some direction in relation to housing options and in addition we could, if appropriate, write a letter of support should you wish to consider either council or housing association accommodation.
We could also discuss benefits and entitlements that you and your husband may be eligible to claim.
Please do get in contact with us and we will do all we can to support you all. We are available on 0808 8026262, Monday to Friday 9am to 5pm.
Kindest regards
Ruth
MND Connect

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