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
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
) 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
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