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Upstairs or Downstairs, Lift or Stair Lift Advice

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    Upstairs or Downstairs, Lift or Stair Lift Advice

    Hi Everyone,

    I hope you are bearing up….the weather where I am is rather dull and rainy at the moment, which I never think helps!

    I am after some advice and I am afraid this is going to be a bit of an essay.

    I am new on this forum and I have to confess a forum virgin, so I do apologise. Additionally, I am not sure if I should be posting here, as I am after advice about adaptations, or in 'Life with MND' as I am also after people's experiences!

    Anyway,my husband was diagnosed with MND two years ago, symptoms of which started in his right foot. Although the condition is progressing we do realise that we are far more fortunate than others as two years down the line he can still, just about, walk. However, his balance is terrible and he has to crawl up the stairs.

    After having an assessment form the local council, we realised that our house would be very difficult to adapt as we have a large step that goes down into our kitchen and another that goes into our sitting room. As well as this, if we tried to convert the current playroom (we have two young children 6 and 9) into a room, we would have to extend it and then try and create a wet room. We don’t have any money to do these things and as my husband “earns too much”, we would not be eligible for any government grants. We were also advised that it would be difficult to convert the upstairs bathroom into something suitable and if we did have a through-floor lift it would take out our wardrobe space. We do not know how much longer my husband can work for, but when he stops I have no idea how we will be able to pay the mortgage.

    Owing to this scenario,we put our house on the market and after six months eventually went under offer (although for a lot less than the asking price!). We have since been trying to find something suitable, but there is very little coming onto the market and when we have found something we have then been out bid, once by £100k! We have even looked outside of our home town to no avail, and I have to confess that as we have a very good support network we would be reluctant to move too far. Our buyers now want to pull out as we would not be able to complete within the Stamp Duty Holiday timeframe.

    As a result of all of this, we now think we will have to stay where we are and somehow find the money to be able to adapt for what we need. Obviously we would still have the mortgage problem, but at least we have our wonderful neighbours.

    So…and this is the bit where I need advice….we are trying to figure out what adaptations we do need to do for now and the future and have had some contradictory advice. I do realise that everyone is different and that the disease progresses in different ways etc. We were thinking of getting a stair lift for now and although we know this would be a short-term solution it might buy us some time (18-24 months?) to work out what we do next. (Do we try and create better access upstairs, or create a sleeping space downstairs?).

    However we keep being told that this is a waste of money and that we may as well go for a through-floor lift. I suppose one of the reasons we were looking at a stair lift is because it wouldn’t change the house too much and would keep a sense of normality for a little longer. We also don’t want to install a through-floor lift if actually an upstairs sleeping arrangement doesn’t work in the long term. I am aware that some people find it isolating upstairs especially if they are having to have rest periods during the day. I have to confess that I do not know what to expect from the disease as it progresses….do you need to spend longer periods in bed during the day, or is it that the bedtime routine has to start earlier? Additionally, can you always use a through-floor lift, or does there come a point when this is no longer possible if you are having to recline in a wheelchair? We don’t want to install something very expensive that can only be of use temporarily (I realise that is a bit of a contradiction as I had mentioned a stair lift before!). If we were able to create a room downstairs (goodness knows how!), does that scenario have any issues? I was wondering that if you do need extended rest period, would being downstairs with two children in the house cause problems?

    I suppose I am trying to gather as much information as I can to help us make a decision.

    With regards to our internal steps, we have been told we can buy two step-down lifts. We did consider raising the floors, but would then have to reinstall the underfloor heating, change all the bi-fold doors, raise the patio and raise all of the kitchen units….so clearly not a cheap option! Due to the height of the steps and the layout of the rooms, we were advised that ramps would probably not work!

    I realise I have not discussed options for the wet room and have no idea where to start with that, but wanted to figure out the bedroom scenario first. I am sure that any responses will then lead to more questions, so I apologise in advance. I am getting very frustrated at the lack of advice from the OTs as they only want to deal with “the now”. I had asked them whether our sloping ceiling in our downstairs room would be an issue for any potential hoist, and was told that when my husband required a hoist they would then carry out an assessment. I have subsequently found out from a neighbour that your hoist does not need to be attached to a ceiling and that there are other options….that is what I needed to hear from the OT!

    Anyway, that is it for now; hope I haven’t bored you all too much.

    Many thanks, Sally

    A warm welcome to the Forum, Sally. Sorry that your life has been turned upside down by your husband's diagnosis and I hope he remains a slow progressor.

    For me, my priority was loo and shower access so, wherever that was, my bed would have to be on the same floor. I used my stair lift for 10+ years - from early on, I couldn't walk but my legs retained the ability to weight bear, meaning transfer on and off the stair lift didn't need much access space. So, before you think too much about a stair lift, you need to check where it would go and, if your husband were to need a wheelchair, is there enough space for it to get in close both upstairs and down?

    My children were also young so, for me, it felt important to sleep upstairs near them. I was lucky to get so long out of my stair lift and it was most definitely money well spent for us - they can be rented, if you just want a short-term option. We ended up moving to a bungalow, which is definitely easier on me. The kids were in secondary school by then so, although it wasn't our local school, my husband used to drop and collect them as it was near his office, meaning they didn't have to change schools (= deal breaker!)

    Have you checked to see if you have any form of Critical Illness policy attached to your mortgage or to his Life Insurance - luckily I had and our mortgage was paid off, woohoo!!

    It is so hard to try and plan but we knew a through-floor lift would not be an option. If I were in your house and had the means, I'd get those mini lifts so I could access all rooms where my family would be - life with MND is difficultenough without being isolated from your family in your own house...

    Nice to meet you Sally 🤗

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


      Hi Sally , been on my own journey of not being able to afford to move house and getting conflicting information.So we chose initially to have a second hand stair lift...I used it for a few months and then realised I would need a through floor lift.

      Several quotes later and advise from hospice OT was to buy the largest lift in case I need a wheelchair that is fairly large.Eventually after considering cost of new one was around £14,000 I went for a refurbished 2 nd hand through floor lift which cost about 6.500 with a years guarantee and service contract.

      Next we had to raise the floor in the upstairs bathroom to give me level access from bedroom to wetroom.
      We do have a large bathroom so had that converted to a wetroom..probably cost £10.000 with grab rails, washer / drier toilet
      I was diagnosed with MND 11 months ago and can walk a few metres still.I really didn’t want to sleep downstairs as bathroom is upstairs and nowhere to create a wet room downstairs.

      We had to pay for everything except the bio bidet washer / drier toilet seat which MND Association gave a grant towards
      Its a nightmare trying to sort any funding and I realised as we had some savings we just had to use it to get the best chance to remain at home.
      We found the hospice OT gave us sound advise on grab rails etc but like you have probably realised there is no pattern to the MND journey.There are various moving and handling aids, standing hoists etc that me considered before ever discussing ceiling track hoists.
      Presume you have looked at whether MND Association can assist financially.Also claimed any benefits your husband might be entitled too.I was lucky and got awarded some money by a charity set up by a former parishioner from our parish church which went towards the adaption but still made a hole in savings.

      I am sure others will share their experience in the hope it might offer some solutions to adapting your home.Property prices have rocketed where I live during covid times.
      For the moment I am satisfied myself and my hubby have done what we can to adapt our home..let’s hope it’s enough.
      Wishing you all the best during this stressful time.As I often say living with a disability is costly.


        Well hello Sally, I am unable to get get a stairlift fitted but as my arms still work a pair of hand rails provide me access to the amenities 🤗😀x
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


          Hi Sally,

          Like your husband I started off with my right foot and found going upstairs difficult. We got a second hand stair lift but you do have to be aware of how much space you have for getting on and off. However, as Ellie mentioned, toilet accessibility does need serious consideration. As you said that your toilet is upstairs, maybe that needs to be what other things revolve around?

          A few other things. There are 2 branches of OT (in London at least) One will look at your house and offer grab rails and ramps and the other branch looks at more practical things. I was told that we could have an adjustable bed and a chair that raises you (it is quite large though). Neither branch told me about the other - I made a mistake and phoned the wrong department in the first place! We don’t get any grants or anything but I was told these sort of things don’t depend on your income. Also, if you haven’t already registered for PIPS, do so straight away. (It gets backdated from the moment you register). A difficult form to fill out emotionally but again, it doesn’t get linked to any income and every penny counts!

          One final thing, as far as tiredness/sleeping goes, I’m sure everybody is different but I find that when I do ‘retire’ to my bed, I still like company so I have an open door policy. I’m sure with 2 young children that stairs and closed doors don’t always mean the same thing to them anyway!

          i hope this helps a little and well done for joining the forum! It is a mine of useful information!



            Hello Sarah, my experience is based around our bungalow. Its probably about 30 years old and we bought it 15 years ago, of course the dreaded MND words never even registered with us as Hey ho as you get older living in a bungalow will be great,NO, not necessarily

            I'm not knocking it and wouldn't ever want to live in a house again BUT absolutely everything has been wrong with it. Building regs change so much and continue to do so. Steps were too high, doors not wide enough, plumbing in the bathroom to accommodate a wet room not suitable as we solid floors, lip on the patio doors too high, between the bungalow and garage - Albert's way in and out - it's a tight squeeze for his scooter/wheelchair, so what I am saying is to buy another dwelling will probably have some of these pitfalls unless its bang up to date with the regs.

            Someone from the local council came and did an assessment and told us what we needed to do to get compliant, mostly helped with the cost too.

            Best wishes

            Husband Albert diagnosed PMA Feb 21


              Hello Sally, a warm welcome to the forum. I really feel for you because it sounds as if your OT needs a bit of a talking to. How on earth are you expected to plan if you don’t know the art of the possible.

              The first thing I would say is please don’t rush into spending £1000’s.

              I think it would be really useful for you to make contact with your local MNDA branch. It should be possible for them to buddy you up with an Association Visitor ( AV ) who will be in a position to spend quality time listening to all your concerns and help prioritise the actions. They can also help with engaging the right people within your medical team and much much more.

              If you need any help with this please feel free to PM.

              Take Care..Phil


                Hi Sally I too think that the OT who came to your house needs further training. My OT told the Council plumber to site the loo with regard to an over the loo thing to be able to be used by me later on. She also looked at our bedroom and discussed the pros and cons of different hoists. I don’t need hoisting yet. She’s helpful in any future planning. Good luck with getting all needs sorted out, even if that’s a house move. Love Lynne x
                ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                I'm staying positive and taking each day as it comes.


                  Hi again, having found so much useful info and support on this forum I thought I would take my opportunity to give some feedback, positive at that.

                  Firstly the critical illness post that I asked about. Paul (son in law) didnt exactly match the criteria as although he does have paralysis in two limbs -
                  (part of the criteria as MND not on his ancient policy) it also says 'unable to take on ANY work situ) and he is still working , although this is getting increasingly harder. Well, having had several conversations with the special disabilities section of Aviva - they had a meeting and having got the DS1500 from the Royal National which was sent to them (I got that info about the ds1500 here ) they made a special exception to pay him out !!! Also, he has a £60,.000 private pension, but thats all, no work pension etc - and during my 'research' found out that if you have the DS1500 you can take out the whole of your pension without paying the 40% tax on 75% of it, which is the norm. It has to be paid out and referred to DWP as 'serious illness payout' this will enable them to pay off the mortgage which has been so stressful for them. I also wrote to the Mortgage company and they have agreed to enable the payment outside the five year fixed plan without penalty (again in these circumstances with the DS1500). Hope as a general post some of this will be helpful at least some of it. I'll be back!!! thanks everyone


                    lindylou1422 Some definite positives there, especially on that burdensome mortgage, thanks in no small part to your determination and hard work.

                    The Saga continues...
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


                      thanks Ellie - you are right, you have to fight for the right information, I do it as they have enough to think about!! I really feel for you Sally - what you thought was a regular life has been turned on its head and is costly. Like you, my son in law and daughter were getting on with life in a normal way and the diagnosis has changed so many things, money not being the least of it. I think the dfg grant works differently in different areas although it is something local councils receive from the Govt. and they distribute it differently. In our area if you are on any sort of Universal Credit - even if a small top-up you get everything done for free ie wet room, lifts etc. if you are not then you do not - as simple as that. Tho they have little savings (except the pension that will be used to pay off the mortgage) they do not warrant any help with major adaptations. I believe that local councils via the OTs do provide smaller adaptations providing they cost less than £1,000. tho again, this might be area specific as to how they use their grants. Also if your husband does decide to sleep downstairs, you should be eligible for a council tax reduction, usually 25%. These are all the things I have spent a lot of time trying to find out, as most of us only have limited financial resources. Also pensions are counted as assets should you ever be in a situation to need to claim any universal credit, but I have investigated a lot as nobody was able to give us a definitive answer to whether it would be considered 'deprivation of savings' to pay off the mortgage, but came closest to being told in these situations it would not (by CB Wales MND) and that has greatly reduced some of the stress associated with the worry of paying it when he is not working and still unable to claim benefits as my daughter works and is over the claim threshhold. My best wishes to you, I know how stressful things can be, but finding out how


                        sorry, finding out how things work and how to get information does give you the feeling of getting some control back. I should have said Citizens Advice Bureau MND . Glad you are seeking advice before you start spending your money - as the adaptations sound very costly. Best wishes - hope you let us know how you are getting on - this is a great place to get support and advice . Lindy