Four thousand five hundred and seventy-two. That’s the number of days I’ve been providing care for MW in some form or other. Right from the first symptoms of her MS: a bit of a limp and eyesight problems. Back then, it was just guiding her around as much as I could. There have been many stages of gradual progression of symptoms.
The first year following diagnosis: coping with blackouts and begging her to eat because she stopped eating, thinking she’d get fat from being immobile. Dealing with her continence issues, including stopping a London – Edinburgh train at Doncaster so I could take MW to the disabled toilet and change her clothes, as there was no disabled toilet on the train and she’d had hot coffee spilt on her. Her gradual loss of mobility: lifting her in and out of cars, on and off beds, chairs, etc. Feeding her for the first time: an unsaid but mutually acknowledged sense of a loss of dignity.
There have been good times post-MS. My 40th birthday year. The year we went on holiday to Europe. We met friends and had fun gadding about the continent’s fashion capitals. Getting giddy because we were ushered past the velvet rope in the Louvre to get that bit closer to the Mona Lisa (one of the few advantages of being a wheelchair user). Having a private tour guide to show us around the Vatican and Sistine Chapel. Shopping together in Milan and the hotel’s delicious chicken sandwiches. My eyes get a little more misty each time I look at the photos. Of how things were.
One. The first. Today was the first day I told someone official that I can’t cope any more: I can’t keep going to the well of strength because it’s almost dry. MW is in hospital after her swallow became compromised. I couldn’t tell if fluids were going down properly or not. There was no evident deliberate swallow. She’s due to have a PEG tube fitted and that operation has been brought forward. The risks involved are scary: more so given MW’s progression.
This hospital admission has been the most upsetting because she seems so weak now. I think I’ve cried every day bar one. Tonight was rough. Her breathing rate was a real cause for concern as it had got so low. Every conversation seems to have that sombre tone – do you want us to resuscitate in the event of…?; do you want us to ring you during the night if her breathing rate falls below…? I can’t even bring myself to type the words.
Those of you who know me already know that I lost my Dad to cancer two months before MW and I were married and five months before her symptoms began. What you may not know is what happened when he died. I was all set to go across from where we lived to my parents because the Macmillan nurse had said things were getting towards the end and I’d said I wanted to be there. I’d also started with panic and anxiety symptoms and had a doctor’s appointment that same day. I’d travel across the next morning.
You’re probably way ahead of me already. I did travel across the following morning, thanks to a lift from a friend of my Dad’s (now no longer with us. Brian was one of the kindest, most selfless men I’ve ever had the privilege of knowing). A journey of 110 miles, give or take a mile or six. Twelve miles from their home, my mobile rang. He’d gone. I’d not seen him at the end. I got to their house to see his body lying in a hospital bed in their front room. Shock, sweet tea, grief.
Looking back, I preferred it happen that way. I couldn’t watch him take his final breath and go. I know I will have to be there when MW takes hers, whenever that will be. I know she needs the comfort. I know she needs the reassurance and love that we – her family and I – will provide. I’m just not ready for this to happen now. This deterioration just seems so sudden. There seems to have been no time at all between listening to her giggle with her Mum and a carer and seeing her in hospital, reduced to being made up of hourly observations, fluid balance chart, IV fluid intake rate…
This pretty much all boils down to me saying that it’s not fair. She doesn’t deserve this. Why her? Why does this thing keep making her worse? Why is it going to take her from me? Screaming won’t change anything, I know that. I’m scared. I’m struggling. People keep telling me that if I wasn’t this way, I’d not be human. It means I care. That being with her despite this also means I have strength. Somewhere, I know this – I just wish that strength didn’t hurt so much.