Do you live in a caravan? Unless you do, or you stay in one for holidays, then you may find this hard to understand. My bedroom is everything, except the kitchen, in our house. When I came out of hospital into this house in Wellington, the OT wanted to know if my bedroom was accessible. It’s upstairs and a stair-lift, would not be possible. The stairs are too narrow, the angles too tight and the corridor to my bedroom too long and narrow. There are also 3 turns from downstairs to head towards my bedroom. Therefore, only the lounge was suitable as a bedroom for me. No other downstairs room is big enough for my hospital (community) bed, at least not if there were to be any room around it for carers to access me and for my wheelchair to come alongside.
Our lounge, in common with most peoples, is the heart of our house. It has the sofas, TV, in our case a piano and it is literally in the middle of the house. You must pass through it to get anywhere, upstairs, the kitchen, toilet or outside. This is the room that has become my bedroom, ‘Grand Central Station’, the seats for our guests, ‘crossroads’, the only place Mary can play her piano, the biggest area of floor for cutting out material when Mary does sewing, TV room, I think you get the picture. But this is also my bedroom, toilet, dining room, reading room, where I can write or watch TV, where I need to rest in the day etc. These two functions do not readily mix.
The quick witted among you will notice I mentioned other downstairs rooms. There are two, both are conservatories and therefore cold in winter and hot in summer. One serves as a craft room come guest room. The other is only big enough as an entrance lobby and utility room, although it does have a sofa in it. One of the sofas my bed replaced in the front room, the other had to be given away. But the sofa in the front lobby is only about a foot and half from the front wall/windows in that room. You can’t easily sit and chat to someone in there. It does serve as a room for people to go to if I am in a collapse. But it doesn’t replace the lounge.
I would rather have a room I can be alone in when we have visitors for a day or a weekend and then choose when to join people. The problem of having visitors for a day or a weekend is that my bedroom is my toilet, all day! It is also where my carers get me washed and dressed in the morning and get me ready for bed at night. That means coordinating timings so that guests pass through my bedroom to the kitchen or bathroom before I use the commode or get dressed. If I need to use a urine bottle in the day, I must ask everyone to leave the room. I don’t find any of that easy, because I don’t like to inconvenience people.
You may get the impression that I don’t like having visitors. That’s totally untrue, I love to see people, although I do have to work within my physical limits. I just find the situation limiting and frustrating. I would think anyone would.
Ideally, we need a property that has a suitable bedroom for me, separate to the lounge. A property that I can easily move around in while in my wheelchair. Of course, when we find such a property, we will be looking for one with a wet room I can access, so that I can have a shower. Bed baths get you clean, but they are not the same as running water.
We keep looking for suitable properties, but accessible properties in our price bracket are not easy to find. In fact, I find it’s very difficult to search for accessible properties at all. Most house sales sites say that you can search for accessible properties, but they don’t break that down into type of accessible property. When you look at the results you can only wonder at their criteria. I have had two floor houses (no lift) come up in searches for accessible houses. Second floor flats (no lift) have also been in the results. Then there are all the properties that look OK on the outside, but when you study the floor plan you can see they would not suit a full-time wheelchair user. I have yet to find a way to search for properties for full-time wheelchair users of power chairs. There is a gap in the market, but I guess it’s a small market.
My bedroom is our everything except cooking room, and that needs to change. Our house is bigger than a caravan, but the concept of everything happening in one area is the same. Next time you are on holiday in a caravan think of me. Of course, you will have the choice to get up and go outside if things become noisy or you need a bit of space to yourself, whereas I can’t. You will also be able to nip to the toilet when you need to, without needing to announce it to everyone. Oh, the joys of disability it just keeps on giving.
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