Following in Dad's footsteps

It’s Carers’ Week and I’ve been thinking about our dad, who looked after our mum as her illness got worse, and never had a tenth of the support I have had with Nick.

I‘m not sure that he would have liked to think of himself as “a carer” but that’s exactly what he was, and one who set a gold standard for the role.
This is a little excerpt from my book about Huntington’s and our family, thinking of all the things Dad did for our mum. Realising how much I’m following in his footsteps – just as many generations of HD families have done before us.

"I look back and wish I could talk to Dad about all this. I wish that with the wisdom and experience I have now, I could take the load off him a little - or a lot. Now that I have become my brother’s carer, I understand so much more about the duties of love.

We would have very different experiences of the caring role: so different. Ma lived at home with Dad and never had carers the way Nick does; all the bathing and dressing and bed-making and bum-wiping was down to him. The shopping and the cooking, the careful preparation of fork-mashable foods and the patient spoon-feeding.
The washing of clothes and body and clipping torn fingernails and the constant bloody bed-making. I do all these things too, but with help. He did all that on his own, day in, day out, while still somehow going to work. There was no slack, no respite.

It seems unbelievable now that Nick and I didn’t force him to get away, go away for the weekend while we held the fort, but none of us knew how to break up the terrible dance he and Ma were locked in to together, like one of those Depression era marathons – dependent on each other and almost dead on their feet but unable to let go. We did try but Ma’s panic at the thought of losing sight of him was so pitiful and he just couldn’t bring himself to do it.

So he was on his own. While I have a partner who can take over some of the legwork on those evenings when I’m just too shattered to move, he rarely had any help. No sympathetic ear to sound off to last thing at night, no hope of a gear change, no-one to give him a hug and tell him it would all be fine. No-one really who could possibly understand, not even his own family. I can’t begin to imagine how lonely that must have been.

Then again, he had worked like a Trojan all his life and had become a senior partner at his practice with a good salary and pension ahead. He and Ma could have a comfortable life and didn’t need to worry about money too much, while I wake up fretting at 5am because Nick’s DLA has not come through and the bills are mounting up.

Dad didn’t have to wring his hands over all the daily peccadilloes of council-outsourced care workers not really invested in the role, or navigate the stormy seas of the benefits system. He didn’t have to spend hours on hold on the phone waiting to talk to someone about PIP, or try to make sense of financial chaos from a time when Ma had lived independently, or try to retrieve her lost password for paperless billing from a broadband company still taking money out of an account she’d forgotten to cancel. He didn’t have to juggle child maintenance payments and mortgage for the life she had had before, now there wasn’t enough money coming in to cover them. He didn’t have to try to co-ordinate two households (badly) like me, and he didn’t have to buy and then hide a week’s worth of wine and dole out an agreed ration each day to an alcoholic. And all that is lonely work too.

The “which tablets for which hour of the day” was perhaps not so complicated for Dad. Nick was already taking medications for other health issues so he positively rattles with all the different things he is taking, while for Mum it was just heavy-duty tranquilisers. The main treatment for Huntington’s Disease at the time seemed to be Valium and Diazepam, so by the late 1980s she was spending a lot of her time in bed.
Medical appointments? I think for Ma these were gentler times where the local GP would have known you for years and would come in with your next consignment of pills on the way home from morning surgery, and sit on the end of your bed for a chat.

She didn’t half thump around but she was a petite, 8 stone woman, she didn’t have anything like Nick’s weight and super-strength, and although she couldn’t walk very well or far, she never needed a wheelchair. They visited me in London only a few months before she died and she somehow managed to stagger up the rickety iron stairway of an East London warehouse to see my artists’ studio.
The solid, high-backed orthopaedic chair we bought her soon became stained and scuffed but lasted for years after her death; I had it re-covered and it made a great nursing and reading chair when my son was tiny. It lived happily in our bedroom for a long time, then, when Nick began to need some more comfortable seating, I took it up to him in the north east. It lasted six weeks.

I wish I could talk with Dad and tell him I understand, and how terribly sorry I am for not doing more to help at the time. We could help a bit, but he wouldn't ever let us step into his shoes; he knew that either Nick or I were likely to inherit the same condition and he wanted to protect us from seeing too far into the future. 
There’s no real comparison between our lives except both of us trying to live with the fall-out of this horrible illness, seeing someone we love gradually lose everything. And knowingly making the sacrifice to try to ease things for that person as much as we can, or could. Whatever it takes.

It used to mystify dad that people would say, “Oh you’re so good to Mary, looking after her like this”, as if there was any question of doing otherwise. What else was he going to do – put her in a care home and visit at weekends? Though admittedly it could have been an option.

I have the same thing with Nick. People tell me I’m wonderful for doing so much for my brother for having such an active role in his care, but honestly I don’t see any alternative. If you’re reading this, you probably know that social care is in crisis and frankly, there are days that I do consider residential care except that there simply isn’t any.
Like dad, I am not always doing it because I want to, and certainly not out of any sense of “duty”. Well, it depends on your definition of duty. Obligation, no - loyalty and commitment, yes.

He’s my brother, my blood, and whether or not he would do the same for me, this is how it is.
It’s not a question of being wonderful or good or brave, it’s just doing what you do for someone you love. Even when it doesn’t feel like love as we know it, when you feel that you could actually strangle the person, that loyalty and commitment carry you through to keep going. So don’t tell me that you wouldn’t do the same, because you just don’t know what you are going to do until it happens to you."

Excerpt, “Days of Wine and No Roses”