This is written from my own experience of living and caring for a loved one with MND/ALS.
Adapting your house can be a daunting prospect.
It is so important to think about things like this early on, as soon as you get diagnosed. It’s easy not to really appreciate the need at the beginning when the symptoms are mild but because the progression is so quick before you know it you will be needing extra support and if you wait until it’s needed you will find the experience a lot more stressful. My advice is to get organised as early as possible.
When Craig was diagnosed and the full impact of what lay ahead became apparent, we started to think about our options. Our house as it was then was not suitable for a wheelchair user.
Our first thoughts were to buy a bungalow but realised that there were very few available in our area and that they would also need adapting to suit our needs. The other issue which quickly became apparent was time – it would take too long to sell our own house and buy a new one, even if we could find one we liked. I also didn’t want to move, not really, I would have done but I didn’t want to leave the house Craig and I had bought together and that held so many happy memories.
This is where access to good advice becomes crucial. We hadn’t really any clue as to what we might need or what our options were. Our Occupational Therapist (OT) was brilliant and gave us lots of good advice and also helped us get in touch with the right department at the local council. A representative from there along with our OT came to visit and assess the house.
The OT was independent so was a good sounding board for what was actually needed and what would be nice to have. We were going to have to pay for these adaptations ourselves so knowing what we did and didn’t need was useful and, in the end, saved us money.
A word of caution here though it is still a good idea to have someone else have a look to see whether all the things that they recommend are necessary, perhaps someone from the MND/ALS association. An example of this was that they said was we would have to widen our doorways to allow the wheelchair to move through easily. This would have been costly because it would have meant removing some of the wall and rebuilding the doorway, as well as the frame. I was sceptical and thought perhaps we could just remove the wooden surrounds (up to the midpoint) to give us more width. I asked one of Craigs friends to see if he thought this was possible. He knew a retired surveyor who kindly agreed to come and have a look. He said that to remove the wall would be a massive job and thought my option would work well.
In the end we didn’t need to widen anything as the wheelchair fitted through just fine. I was glad I had looked into it before I agreed to the work being down as it would have cost nearly twice as much and wasn’t necessary.
There are independent organisations, and charities who are happy to come out and look at your property and offer advice. This is a very good idea especially if you are funding the work yourself. It helps you focus on what is necessary to make your life easier. Or just discuss it with friends and family as they may think of something you haven’t. Sometimes it can become so over whelming that you just accept what you are told because you take their word for it as they are the professions but it’s always good to stand back and think about it for a bit before committing yourself to anything.
We had the bathroom upstairs turned into a wet room, which was designed to have room for a bathchair when we got to that stage. We also had a through floor lift fitted. This was not as easy as it sounds: firstly, this was still covid time so finding a company willing to come and fit the bathroom took ages. I rang several, some never bothered to ring me back. Only a few came and gave me quotes, which varied enormously. I had no idea how much it should cost but I was also up against the fact that some of them said they couldn’t do it for six months. This was too long to wait as we need it now. Craig was already struggling to use the shower we had. I was faced with the dilemma of paying more to get it done quicker or save money. In the end it was a no brainer we needed it done and that was the end of it.
This is when I reiterate again the need to get things like this organised at the start so you don’t have to worry about when they can be done, if they will be done in time etc. Hopefully you will find it easier without covid to contend with.
The through floor lift was as suggestion made by the OT something we didn’t even know was possible. We had mentioned it to her in passing that we were looking at moving to a more suitable property. The other options we discussed were adapting the garage into a bathroom and bedroom for Craig or even having a temporary structure like a cabin built in the garden. She agreed that either of these were feasible but would require quite a bit of work that’s when she suggested the through floor lift.
We were lucky that our property allowed us to have this. We have a long living room half of which we cleared out to accommodate the lift. We also had a spare room that the lift could go into which allowed easy access to the bedroom and wet room.
We contacted several companies again who varied massively in price. In the end we found a company that could fit a reconditioned lift, which was a cheaper option. Covid once more played a part in making this difficult. The through floor life was brilliant. We had to have a large one to accommodate the combined weight of Craig and his electric wheelchair. In reality he never actually went upstairs in the electric wheelchair he always transferred to a commode wheelchair which was easier to manoeuvre and it was lighter. We put a blanket on it so you couldn’t tell it was a commode chair.
Having the through floor lift meant that he could go upstairs to the study as well as to sleep and shower. After a while we moved the PC study areas downstairs to make it easier for him, giving him more room to manoeuvre and allowed me to help him whilst doing other things at the same time.
Before the through floor lift was fitted and Craig was finding it really hard to climb the stairs, we had a stair lift fitted. We used a local company who rented them. We could only rent a straight chair lift which meant Craig had to manage two steps. The company were brilliant they came quickly and fitted it the day after I agreed the contract. I think covid worked in our favour here as they didn’t have much work on. Unfortunately, after just four weeks Craig could no longer manage the two steps up to the chair. Luckily for us the through floor lift was now up and working so we didn’t need the chair lift any more. The company came and removed it straight away.
I was very glad I had got the lift fitted as soon as we realised it was possible as it took several months from the suggestion to actually getting it in and working. Another example really of how long things take and how important it is to be organised and not wait too long before getting these things in place.
If a lift hadn’t been possible, we would have had to look at the other options. We did also consider a bed in the living room, we thought we could curtain it off at night but then I would have had to have a bed downstairs too. Also, our downstairs toilet was too small to be adapted so we would have had to have built a wet room somewhere.
Other adaptations we made were to have ramp fitted at the front of the house for wheelchair access. We also had new patio doors fitted and the floor raised out the back. The current doors didn’t open enough to get the chair through and there was a big lip to get over. A friend bult a ramp out the back door so Craig could get into the garden and enjoy it. Being able to go outside lifts your spirits so this was something that was important to us.
One of the first things we did was to put grab rails everywhere, as you came into the house, at the bottom of the stairs, bathrooms, places that frankly I wouldn’t have thought of but turned out to be invaluable in allowing Craig to move around the house safely when he still could. Our OT once more was brilliant there as she advised us where to put them and obviously with her experience she knew where we would need them and she was right.
All of these adaptations made our life easier and allowed Craig to be able to stay in our home, where he was happiest. Having a plan of what adaptations are need when, helps you to focus on prioritising which to do first so that you are safe in the home.
Author: Anita Newton