adaptations: My husband has recently... - Multiple System A...

Multiple System Atrophy Trust

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adaptations

Tanya2015 profile image
14 Replies

My husband has recently been diagnosed with MSA-p, we live in a house with 3 flights of stairs. We have been told that a chair lift will not be suitable for him so are looking to get a lift installed which on inspection does seem possible.

It’s a huge outlay of money and there’s also stipulations that you can’t sell your house for 10 years after it has been installed unless you pay back the 80%. The council pay 80% and we pay 20%. Has anyone else had this done? Would you recommend it? Is there something else we could do that wouldn’t be such a high cost. We own our home too.

My head is spinning with all the changes that are happening and don’t want to make a quick decision on something and later regret it.

Thanks in advance

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Tanya2015 profile image
Tanya2015
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14 Replies
Meg5824 profile image
Meg5824

Hi Tanya, have you considered downstairs living for your partner?

Tanya2015 profile image
Tanya2015 in reply toMeg5824

Unfortunately I live in a split level house so the only floor that has both a room and toilet accessible is the 3rd floor. This is where my husband is just now. He is just managing the stairs if he comes to the livingroom but I just don’t know how much time we have for this to continue

Tanya2015 profile image
Tanya2015 in reply toTanya2015

My only other thought was to convert our garage. This has access from the house. I’m not sure time frame for this to happen though

Meg5824 profile image
Meg5824 in reply toTanya2015

Can you get an Occupational Therapist in to advise? Converting the garage could be an option. There are also Washpods that can be installed. These are accessible wetrooms that can be installed anywhere in the house. Some companies rent them, or they can be bought. The good thing about them is they can be easily rigged up to existing plumbing and are space saving. The negative - ugly.

It may be worth exploring different options.

Tanya2015 profile image
Tanya2015 in reply toMeg5824

I have OT involved, that’s who I’m in discussion with about the lift

JJAJJ profile image
JJAJJ

Hello Tanya,, I am so sorry to hear of your husband’s diagnosis. I wanted to keep things ‘normal’ as long as possible . We were advised to have my husbands bed downstairs. We ignored the advice and bought a stair lift. Twelve months later we transferred his bed downstairs. It was impossible to have a bathroom downstairs so I rigged a ‘shower’ up in the kitchen.

Derkie54 profile image
Derkie54

Hello,

Sorry to hear about your husband and the choices you have to make.

Things can change quickly so I think you're right not to make quick decisions.

My wife was also diagnosed with MSA-P and at the time we were living in a house. We then sold up and moved to a bungalow. We've had many changes as her condition declined and now she has no mobility at all and needs help with every task.

She has her bed in the lounge now so she is not isolated on her own. We have a hoist to transfer from bed to wheelchair.

Looking back I think we could have come to this final solution earlier but this terrible MSA proceeds at different rates for everyone, who knows what the timeline will be.

Take care

Derek

Clayton2020 profile image
Clayton2020 in reply toDerkie54

Good morning what type of hoist do you have?

Derkie54 profile image
Derkie54 in reply toClayton2020

Hello,

We have a System Romedic EVA450EE

Very pleased with it, I charge it up every 2/3 days and it takes away most of the heavy lifting I was doing.

More importantly my wife feels safe in it and is happy to use it.

directhealthcaregroup.com/p...

Regards

Derek

GreenJo profile image
GreenJo

Hi Tanya - yes it's so difficult to make decisions with so many unknown quantities. We were in a similar position to you - living in a duplex upside down apt with living space and kitchen upstairs. We had added complications that 1st flight of stairs communal so not allowed to do anything re that re lift etc. We decided to move. We moved into a ground floor flat which already had a large ensuite. We then started the process of getting it changed into a wetroom - this took 7 months from start to finish. I'd imagine a lift might be same as have to get building regs approval. I'd take time it realistically takes to get lift installed into your considerations. Moving was the best option for us but you can only do your best with information you have. All the best x

mandg profile image
mandg

Hi Tanya, ~We had a Stiltz lift fitted and it was the best thing we did. It meant we didn`t have to disrupt downstairs living, and as we had loads of room and facilities upstairs, it made sense. We did not have any help off the council and paid for this ourselves, no it wasn`t cheap, but worth it to try and keep things as normal as possible with the use of our bedroom and rest of the house. The lift was fitted in about 7 days, and it could be taken out if not needed. PS we had the larger lift that would accommodate a wheelchair, which was needed quite quickly.

Tanya2015 profile image
Tanya2015 in reply tomandg

Could I ask what price range your talking? I understand if you would rather not

mandg profile image
mandg

Not a problem. It was it was just over £20000!!

A lot of money, but we were lucky to be able to do it, and a lot less mess that converting rooms to wet rooms etc.

Craft7 profile image
Craft7

Hiya totally understand why you head is spinning . MSA is ever changing so my advice would be seek advice - Katie from MSA has proven invaluable to us as advice given three years ago is still helping us as we get set to adapt house layout yet again .

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