You know a bit about me, and a little bit about what I do. This time, I want to give you an insight into 24 hours in my life as as carer.
Are you sitting comfortably? Then I’ll begin. The alarm goes off at 8.30 but I am generally awake before then. I’ll have probably woken up at least an hour before it goes off. We expect care help to arrive ( usually from Maureen who works with us via an agency ) at 9.00 so I need to be up and about to let her in. The care is scheduled for the same time every morning so my wife has a routine. Maureen and I will go upstairs to get her out of bed. Our bedroom is the largest in the house and is in the converted loft. It has the most room for the size of bed we have which has one of those Tempur mattresses – it’s the only mattress my wife can sleep on. Anything else causes her a lot of pain, no matter how comfortable it’s advertised as.
My wife cannot bear weight on her legs and has greatly reduced upper body strength. So once she’s woken up, Maureen and I will swing her legs over the bed and sit her upright. My wife will take a few minutes more to get her equilibrium – she’s prone to black outs as her blood pressure can drop if she’s moved too quickly. Once ready, Maureen and I will lift her out of bed and onto a transfer chair – it’s not a wheelchair as you might recognise it, more like an aluminium office chair on 4 castors. By lifting I mean I’ll lift with my hands under my wife’s armpits while Maureen lifts with hers behind the knees. We’ll spin 180˚ and lower her gently onto the transfer chair. We’ll wheel the transfer chair to the stairs and lift her from transfer chair to the stairlift. ( Note: we have no hoists – we’ve been told that our home is not suitable for hoisting equipment. 1) it would be impossible to get one upstairs. 2) the downstairs bedroom doesn’t have the room. 3) our front room doesn’t have the room. Notwithstanding the fact that, for H&S purposes, TWO people are required to operate hoisting equipment – but never mind. ) Maureen and I will follow as my wife travels downstairs on the stairlift. At the bottom of the stairs, there’s no room for two people to lift her off the stairlift so I’m on my own for this one.
I have to perform a lot of these single-handed lifts during a day so I think it’s worth taking the time to describe them properly. My wife’s MS causes her leg muscles to spasm. In most cases ( but not all ) the spasm makes her legs bend involuntarily. Yet because she has no control over the muscles in her legs, I have to straighten her leg out manually to enable the muscles to relax. The spasms make it very difficult to straighten them. So, back to the lifting – whilst in a seated position, I have to manually manipulate my wife’s legs so that her feet are flat to the floor. This is because, in a seated position, the spasm will make her legs “fold back” under the seat. I’ll ensure her feet are on the floor and she’s in a normal seated position. I’ll ask her to put her arms around my neck while I grab the back of the waistband of her trousers with one hand, and one hand under her right thigh. I’ll ask her to lean forward as far as possible while I rock backwards, using my neck muscles to start the lift. I’ll then use my arms to secure the lift from their positions so I have one arm round her back and the other under her bum cheek ( biology wasn’t my strong subject! ). These lifts hurt her back. I hate causing her pain but I can’t think of another way of lifting her. No matter how many times we’ve described or demonstrated these lifts, we are not getting hoist equipment. Once I have her in a quasi-upright position, I’ll swing her round and gently lower her onto whichever seat she needs to be on next. Every lift causes my wife pain in her lower back while I’m lifting and pain in her legs and hips when I’m manually straightening her legs. It’s crap but it’s the best I’ve got.
If I were a teacher of languages I’d be asking you to write the above paragraph in your vocabulary books under the word “HOIST”. But I’ll settle for asking you to remember this description. When I’m referring to “hoisting” my wife, I’m not using mechanical equipment, I’m using some cobbled together manual lifting thing.
Getting back to the bottom of the stairs…. I’ll “hoist” my wife off the stairlift and onto an attendant wheelchair which Maureen will have positioned while I’m preparing the “hoist”. Maureen will wheel my wife into the bathroom where we’ll both take her pyjama bottoms and incontinence pants off, then lift her on to the toilet. This gives us time to catch breath and to fill the sink to wash the dishes.
After my wife’s been to the toilet, Maureen and I will get the shower ready. The shower is actually one of those mixer style tap and hose things above the bath. Running the water and making sure that the temperature is right, getting all of the towels ready, getting the battery-operated shower seat raised and ready with the non-slip mat on the seat. Maureen and I will lift my wife from the toilet directly onto the shower seat, and remove the rest of her clothes. Again, the spasm makes my wife’s legs fold underneath her so Maureen will keep her body still on the shower while I manipulate her legs and stop them getting trapped under the shower seat when it lowers into the bath. Once lowered, Maureen will shower her while I get on with making breakfast ( nothing complicated – just cereal, coffee and fruit juice ), washing the dishes and sorting the laundry ready to turn the machine on once the shower’s finished.
After the shower, Maureen and I will lift my wife from the shower seat ( once it’s been raised so it’s flush with the side of the bath ) onto the wheelchair. I’ll wheel her into the hallway to get dressed. Why the hallway? Because the hallway has the most space for us to dry her and get her dressed. So Maureen will dry her top half while I dry her legs and feet. We’ll both put my wife’s daytime incontinence pants on her and put her dressing-gown on. I’ll wheel her into the front room and “hoist” (did you remember the meaning?) her from the wheelchair to the reclining armchair that she uses for the bulk of the day. I’ll give my wife her first 11 tablets of the day ( including multi-vitamin ), and give her breakfast. Maureen will tidy the bathroom, the bedroom and the kitchen before she leaves for the day. Trust me, I – we – would be lost without the help we get from Maureen. She is amazing.
I think I’ve written enough for now. I don’t want to bore the crap out of you ( that is if anyone’s still reading this – and, if you are, thank you! ). The above paragraphs constitute just the first hour of the day but each day starts the same way. I’ll split the rest of the day into pieces and save them for future posts.
A Husband For A Carer 