On Thinking and Doing

The thing about being a mum who depends on others to fill in the gaps in my mothering is that I do the headwork while relying on them to do the legwork. It’s not an easy or comfortable, or natural division of labour. For any of us. And by “them” I mean mostly my mother or my husband, M. My nearest and dearest. Suddenly I’ve pinned it down: this is what sucks the most about being a mum with ME.

It was last week’s controversial ITV documentary by Paul Watson about a man’s deterioration and death from Alzheimer’s that got me thinking about this. In the early stages of his disease, his wife Barbara would complain she was already losing Malcolm. As the disease ate away little holes in his brain he would forget his words in mid-sentence, or forget where he was going. Like many PWME I can relate to that level of cognitive dysfunction. M tells me that when I’m succumbing to a relapse I become not only physically incapacitated but, just as frustratingly for him, I become a zombie too. A dull stare on my face replaces conversation at mealtimes. An indifference in the face of decision-making replaces my usual pro-active planning. I disengage with the urgent practical tasks of childcare that we share, at a mental as well as a physical level. And that’s what lets him down the most. I wish I had a link at hand to show it, but I do know that research has shown serious shortages of blood flow to the brain of PWME which would explain cognitive dysfunction probably on a similar scale, if not exact nature, to early Alzheimer’s Disease.

Yet that kind of mental detachment is the opposite of the image that I, and everyone else, has of me as a mother. I simply can’t allow my brain to let me down. It’s the best asset I’ve got. My physical limitations far outweigh my mental ones. I must have less than 10% of the muscular/aerobic endurance of a normal mum. I can’t lift, I can’t carry, I can’t walk more than a couple of hundred metres, I can’t stand more than 3 or 4 minutes, I can barely climb stairs. When I say can’t, I don’t mean it categorically. Rather that doing these things so depletes my body’s reserves that afterwards I’m severely incapacitated for the long recovery time needed to get my body back to baseline functioning.

So in compensation, if I want to be any kind of involved mum, my brain needs to work overtime in planning and co-ordinating the tasks of motherhood. My self-assigned role is to keep on top of things. The timing of Sofia’s feeding, changing, sleeping and playing as well as pacing my own requirements for regular nutrition and rest (It’s like they say on the aeroplane: “in case of emergency, fit your own oxygen mask before putting on your baby’s”). Because when we lose the thread we quickly face total family meltdown: Sofia in a hysterical tantrum, me gasping with exhaustion on the sofa in a low blood sugar crash, M feeling abandoned and alone.

So life has become one long time/motion study, like in a 1930s scientifically-managed factory regime. I separate the thinking and the doing of motherhood so as to make my doing as energy efficient as possible and plan which other bits of doing to delegate (sensitively, if possible) to those who pick up the pieces. So, for example, if I have to get up and go to the next room to get nappies I automatically scan my immediate environment for objects that need to go back in that room. That way I maximise the value of the trip (POD or Permanent Object Displacement being the chief activity of toddlers). And during our “nap” if Sofia is going out afterwards I use the quiet time to engrave a mental list of items needed in her bag, as well as a schema of which items are in which room, onto my brain. Then I can then pack the bag (drink, snack, nappies, wipes, plastic bags to contain accidents, spare knickers, suncream, sunhat, cardigan, books in case of boredom,) with the minimum legwork and try to surmount that classic ME mental-blank-when-I-enter-a-room-and-can’t-remember-why syndrome.

But no matter how carefully I ration my tiny battery of energy there’s always the unexpected poo in the pants, or grazed knee from a fall that demands immediate action when my fuel tank is empty. Sofia’s needs can’t be entirely programmed. I can’t be the dependable mum, scooping Sofia into my arms whenever she gets into a scrape, that I’d like to be. I’m too often beached in her times of need. I feel woefully inadequate when it happens. And so I try all the harder to compensate. I try to give extra love, attention and engagement from my default posting on the sofa. And I try even harder to pre-empt chaos next time through by rational thinking.

I go into over-drive on the thinking in order to compensate for my lack of doing. This is otherwise known as being a bossy control freak. It doesn’t endear me to my nearest and dearest. It doesn’t allow me to inhabit the sick role with grace as I sit there on the sofa giving orders while they others do the work. It doesn’t do much for my self-image.

I hate it. It’s not me. But is there an alternative to this division of thinking and doing? People tell me to chill out, stop thinking so much, accept that I need others' help. But then when my brain really does turn to pulp in a relapse and I lose the plot it feels to everyone, including me, that there is a void where mummy once was. It feels like the ultimate let-down to those around me. So I keep on thinking, planning and organising harder than the superest super-mum who runs her family like a company director. Despite the holes in my brain. Because that’s the only way I know for a sofamum to get by.