Wheelchairs: you might think you need to pay for a wheelchair. You don't! Your local hospital probably has a Wheelchair Department. You can get one from there on free loan. Mind you, it can take a while to arrange. It is worth it as they will customise the chair, measuring the seat height and depth to get those absolutely right for you. Cushions are available to correct any slump. Gel pad arms are there for those of us at risk of pressure sores. You will even get an annual wheelchair service [probably].
Help From Chairities
In the short term you might want to borrow a wheelchair from the Red Cross, if you have a local branch. Foldable, portable chairs are about £100 if you buy one new online. I invested in one as I have no nearby Red Cross and, anyway, the weekly charge meant I would have paid more for hiring one for 10 weeks than buying one new. A memory foam pillow made the chair higher/ easier to sit in, and much more comfortable. And the washable pillow case meant it stayed clean. You can buy electric wheelchairs secondhand, for as little as 10% of the retail price, on ebay, if you cannot wait for one to be provided. Make sure they work, are not scruffy from overuse, and that the batteries do not need replacing. Try out the chair to make sure it fits you - but ask all your questions/ get measurements, etc., before you even think of driving miles to inspect it.
My local Wheelchair Department would not put me on the waiting list until I could not walk *at all* - not a single step - and then it took five and a half months to get my customised electric wheelchair. Luckily they had one in stock they could refurbish, and I had the full support of all concerned, or it would have taken rather longer... I had contacted them the previous year, knowing I had progressive MS and would need one eventually, but they refused to put me on the waiting list at that time as I could still stagger a few steps with walking sticks. [I was given two on loan, but then was deemed more dangerous, due to left-side tremor, with two. So they took one away again! [Lidl were stocking some for a fiver each, so I bought four and painted them in different bright colours with test pots of paint.]
My 'perching stool', also on free loan, was little use to me in the kitchen, as I cannot grip with my left hand to peel or chop with my right, but it was a real boon in my shower. Your OT might install a fold-down shower seat for you.
My wonderful 'riser' armchair, where I ended up sleeping when I could no longer get easily into or out of bed, was courtesy of a charity, contacted by a lovely OT on my behalf. The charity delivered nearly-new donations to those in need. Your GP may know of secondhand equipment. Ask your friends, too.
The OT also arranged for a sturdy bedside post, attached to the frame, to help me haul myself up and across the bed. Various special mattresses and bed frames are available on loan. Currently I have a hospital-style bed frame, controlled with electronic buttons, and an air mattress [my skin is fragile and susceptible to bed sores]. Sadly the electric controls need to be reset after each power cut [and we have quite a few of those in my village].
Help From Friends
A good friend loaned me an electric 'shopping trike' after her husband no longer needed it. This, eventually, became the only way I could get to the lavatory in my previous house. I used to stand by being pushed upright by my riser armchair, spin 180 degrees onto the seat of the electric shopper, drive 8 yards to the bathroom, fling myself onto the perching stool then onto the loo, then reverse all that to get back into my armchair. Finally the shopper became too low for me to get into or out of, but while I still had limited mobility it was sheer joy to be able to dismantle it to go into the car and then, rebuilt, to the shops.
On a cheaper [and thus easier to get hold of - from your OT or by paying for it yourself] level, I commend getting a wooden handrail or two for your stairs, and metal handles for your bathroom and other walls. The OT will arrange for them to be installed. [More expensively you might be able to acquire a ramp, to replace steps, so you can leave your house.]
"If, after treatment for cancer, you need a wig then please note these are only free if you order one while you are an in-patient. [As an outpatient the cost is getting on for £80] I then bought loads online in bright colours and different lengths. Almost all cost less than £10 from ebay, including delivery. They do boost my mood, and the mood of those around me!
Don't forget to get free advice and fire alarms from your local Fire Station. Look for your nearest here:- http://www.fireservice.co.uk/information/ukfrs
Also, if you have carers, you might be grateful for sheets that allow you to be slid up, down, or across your bed. And do not neglect the 'banana board', which is a slippery plastic crescent-shape which allows you to slide from, say, your bed onto a wheelchair. [Probably not gizmos which are useful or safe without the help of a carer, though.] My wheeled bedside table is on loan.
Social Services Can Help
Similarly, Social Services will fund and install a hoist [fixed to the ceiling or stand-alone], a stair lift, or even a through-the-ceiling lift. The hoist should be free for everyone, [it certainly is in Surrey] but the other equipment will probably be dependent upon your income/savings. I'm told that only certain places will pay for a stair lift., but if you have a good case for one then you must ask.
~You might also need a 'key safe' - a small waterproof cupboard holding the front door key, which opens if the right code is pressed. This allows trusted callers such as carers [in which case Social Services will fund it] access to your home, without you having to get to the door to answer it. Ensure that the box is installed low enough for a wheelchair user to access it [mine was screwed way too high up on the wall for me to reach!]. The authorities might also pay for an intercom so that you can know who is at the door, without moving, and might even install a device to release the door catch by remote control - if you can show a need.
A wristband or necklace with a pushbutton can be hired so that you can call for help if you need it. It is often, but not always, called Care-Link [currently it costs just over £20 a month in Surrey]. If you have one of these, wear it. Yes, I know that sounds obvious, but it is no use putting it on top of the mantlepiece when you go to bed, then falling out of bed, and finding you cannot reach it to call for help. You can also ask for a waterproof button to be permanently fitted in your bathroom. And you might find a phone which can be taken around the house with you more useful than a fixed handset.
Sometimes the rules depend on the District Council, rather than the County, with some DCs taking the enlightened view that allowing you to stay in your home -by providing essential equipment - costs them far less than paying for you to go into a nursing home. But most will still look at things like the provision of a disabled-friendly wet room, or kitchen, as something only for those with low income/ no savings.
Incidentally I met somebody locally who'd been provided with both of those. His advice is to be very specific indeed about what you need, and to double check that the designer has understood. His new bathroom turned out to be completely inaccessible - until they found him a narrower shower commode [luckily he is not a large man!]. His new kitchen was designed and installed with a microwave on top of the built-in oven [completely and pointlessly out of his reach from the wheelchair] and with a corner cupboard that could not be reached until they sawed a substantial corner off the brand-new work surface!
And my District Council told me that it would take 11 to 13 months [yes, MONTHS!] to design me a kitchen. So start asking now if you want one. My alternative was to get a large used kitchen from ebay, have half installed at a worktop height suitable for wheelchairs - including the hob and sink - and to have a special 'pull-down shelf unit' [found one in Howdens] fitted inside one low top cupboard, and an unenclosed carousel under one corner [for cans, spices, etc.]. I also had a special pull-out shelf made from a drawer so that hot items could be pulled from the microwave and left on that shelf rather than them falling onto my lap!
If you have the money, or the funding, you can get some very fancy things - such as work surfaces which move up and down at the touch of a button. With a grabber stick [I bought two strong ones from Amazon, so that i can pick one up with the other if I drop it] I can use the standard washing machine, tumble dryer, and American-style fridge-freezer.
Help Around the Home
I am not safe to use a kettle these days, or even to pick up a hot drink, but you can get frames for kettles which allow them to tip, but stop them spilling boiling water. Your OT will also be able to provide large foam handles and specially-shaped cutlery if your grip is poor. I wouldn't be able to manage washing myself without the long-handled sponges in my wet-room. They were ordered cheaply from n on-line catalogue. One is specially shaped to wash my feet and between my toes, the other allows me to wash my back. And I have a new, lightweight, micro-fleece towel, as I cannot lift a normal towel when it is wet. Also a 'turban' in the same material to dry my hair. It is almost immediate.
My biggest indulgence has been electric tracks so that I can open and close my curtains with a remote control. In fact I searched hard and found a supplier on Amazon which charged me less than a pair of new curtains would have cost - and I found patio-length curtains secondhand on ebay for just £15 to balance out my extravagance!
On my wish list: I saw one American wet room which had a wonderful rubber 'dam' at the door, a couple of centimetres [an inch or so] in height, to stop water flooding out of the room, but which allowed a commode/ wheelchair to be driven over it before it bounced back again. I have also seen hoists which allow the user to travel between rooms, and even a wheelchair which gently boosted the user to stand. My dream is to buy a wheelchair-accessible car. You can lease these from Motability, but not at low cost. I suspect these are outside of most budgets.
And, though I have never seen them, I do think my wheelchair driving might benefit from a pair of reversing mirrors!
If you have a useful gadget, please tell me so we can all get one....
Click here to read part 1