I’ve been meaning to write this post for a long time now. Every time we’re contacted by others affected by MND I feel terrible for not concentrating on it sooner!
MND can move so fast that the services find it difficult to keep up with providing equipment. It’s not only tempting but often necessary to just spend money to solve problems. Sooner or later, you find yourself living on benefits in this situation, it’s impossible for either of you to carry on working, so I wanted to show our list of good money spent versus bad. We also bought a lot of things that I consider to be creative solutions to our problems so I wanted to publish this in the hope that it will help others cope. I’m sure a lot of these things can be borrowed. I’ll try not to bore everyone with too much explanation!
Good money spent
So, in no particular order (cause that would take me all night), good money spent…
Wall Calendar – very important, many services to coordinate (and friends!)
Suction Pull Handles – we live in a rented house now, so we couldn’t drill pull handles in to the walls. Social services are not allowed to give you the suction ones cause of health and safety red tape so we found them in Argos [a well-known online and high street retailer in the UK – Ed.]. They were OK, but you do need to check them regularly, Neil had a nasty fall in the shower once and I got the fright of my life. They were good up to the point he had to start putting his whole weight on them.
Pee Bottle – I bought it, hid it, and waited for him to ask for it.
Lanyards – Neil used to hang his phone and other stuff around his neck.
Bum Bag – used for carrying things around the house when he had crutches.
Loo Seat Raiser – Social Services couldn’t seem to find one that fit our toilet… we found one at Argos and it also had a lid, which the SS ones don’t have.
Camel Pack – easier to carry a drink around in with a wheelchair (Oscar kept nicking it though!)
Sound Asleep Pillow – plays MP3 through the pillow so nobody else can hear, good for night sitters, you can get it as a neck support pillow (around £30) or a normal pillow (around £20).
Bean-Bag Tray – I searched for one that wasn’t geriatric looking! It’s slightly less depressing!
Coloured Towels – this might sound a bit odd but all my towels were matching and white. It gets very confusing when all of a sudden you constantly need extra people in your house, nurses are doing a bed bath every day, and three different people are trying to keep on top of the laundry. You need to come up with a towel system! (Getting people to bring their own stuff is another good tip!) If I’d thought about it earlier, getting different colours of sheets for Neil would have been a good idea as it’s nice to keep clean sheets on a bed for someone who’s in it a lot of the day. With different people doing the chores all the time it would have been something I could coordinate on the calendar. But stupidly when we got the single beds, I bought white again!
Coloured Wash Cloths – I know it sounds like I’m going on about this but the reason for coloured wash cloths is that they work up the body with a bed bath and you kind of want to know it’s a different one by the time they get to your face!
Walking Stick – we got a telescopic one from Argos as we were a bit wet around the ears when it came to finding mobility gear at the time! Couldn’t think of where else to get one.
Blow-Up Beds – I slept on one in the living room for a long time before reality hit and I moved in to the spare room permanently. We still use them a lot for all the friends that so generally give us their time.
Play Pen – I guess this is more specific to our situation. I didn’t really have time to think what my view on play pens was, I just had to get one for safety sake. There was a while back there when all I could do was throw Oscar in it and run to help Neil. So to me it was invaluable.
Child’s Step Stool – there was a point between walking with crutches and the wheelchair where there was a lot of falls. The last time it happened it took us about 20 minutes to figure out how we were going to get him up off the floor. (Oscar was in the play pen.) We realised that if it happened any further down the line it would be a serious problem so I bought the stool as a makeshift solution. At least I could try to drag him up in stages. I don’t think we even used it, but money well spent for piece of mind, and I now use it for Oz. By the way, the official advice in this situation is to call an ambulance, though it’s not classed as an emergency so you could be on the deck a while!
More TVs – everyone deserves the right to chill out with as much privacy as they can get in a situation like this.
Dust Buster and Flushable Antiseptic Wipes – if you can cut any corners with house work you need to do it. It’s very important to keep the house as clean and hygienic as possible with a terminally ill man and a baby in the house. This is made very difficult by the extra traffic. I even had to ban dogs from visiting and our own cat now lives with my parents. This was very upsetting but it was too much extra work.
Two Way Radios – we used these a lot till Neil could no longer press the call button.
2nd Baby monitor – after the two way radios we had to start using Oscar’s baby monitor. I eventually bought a second one just for Neil the last time he was in the hospice as they use a help buzzer system that Neil couldn’t press like other patients. I could have tried giving up with the monitor on Oscar, he’s well old enough now, but I have to protect whatever piece of mind I have left in order to get some sleep, so two monitors it was!
Voice Recognition Software and Stand Alone Microphone – not as expensive as you might think and invaluable to Neil. What it gives him above the obvious is privacy. Combined with the baby monitor it means he can be in a room by himself and write his thoughts. If you look back in the posts there was an acceleration of honesty showing through when he started using it for the blog. He no longer had to dictate to someone and it gives him a modicum of freedom back. The software comes with a headset to speak into which he couldn’t use with the ventilator mask so eventually we thought to get the separate microphone.
Folding Door – when you’re using a standing hoist to manoeuvre your husband on and of the toilet the bathroom door getting in the way is easy fixed by the Argos £9.99 folding door! One of our best buys!
Door Bell with Twin Bell – after a couple of choking incidents where no one could hear me shouting for help over CBeebies [the BBC's channel for small children – Ed.] I decided to rig up a door bell that I could ring from the bedroom. This one (Argos!) has two bells to one button so if I press it it can be heard in the kitchen and the lounge.
Last but by far one of the best… the Nintendo Wii! – I think this should be given to every one who is sick! For a long time Neil had been nagging for one of these and then shortly after he was diagnosed I decided we needed to have a ‘good’ day for a change so took him straight from work to buy his Wii. Had I known how much it would give us some fun back in our lives, just for a bit, I would have got one earlier. It meant that we could get our friends round and still ‘have a bowling night’, ‘play drunk tennis’, play ‘golf’, Neil could ‘drive’ his Super Mario Cart when he could no longer drive. Then there was the addiction to Lego Star Wars which took his mind away to a different place for most of the day. Sadly, he can no longer use it, but just for that short while, when he still could use his arms, it was great. Well worth racking up the credit card!
Bad money spent
So just quickly … bad money spent… there’s not a lot of items but they probably equal the good money spent financially.
New Bed – we spent a lot of money on a divan (cause they’re higher) and a memory foam topped thick mattress. It was two weeks before we had to get our old bed frame back, cause the hoist needed to get under it, and we raised it with blocks. Then it was another three weeks before we had to store the expensive mattress to make way for the profiling hospital bed and I was out shopping again for a cheap single and all the related bedding.
Gym Equipment – The thinking was to preserve a much muscle strength as possible, but once MND takes hold, you can’t fight back. We bought an air walker and an exercise bike, both of which went onto eBay within a couple of months.
Coxsics Cushion – just did nothing to relieve any pain.
Massage Chair – again, nothing.
Office Chair – this was something that we could have spent a lot of money on trying to improve comfort and I’m so glad we didn’t. The one we got was around £60 but again it was only a couple of weeks before he needed to be in a recliner chair. The swivelling action was just a hazard too.
Foot Spa – more bother than it’s worth!
So, I hope that this will help others out there. Believe me, this is the edited version! To those of you who read our blog and are not directly in contact with MND, I hope that it will help paint a better picture of the last year.
Lastly….. Hi Neil, love you, see you in the morning, sleep well, look at the memories x
Many comments came in once this post was published, mainly asking how I found the time to write it.... I had the time because Neil was in the hospice! – Louise (2013)