Caring for the Carers; putting one foot in front of the other. Part 5: Putting Family First

I know I’m stating the obvious when I say that just as each person’s mental illness is different, so the experience and circumstances of each carer varies hugely. When I took on roles of part time carer first for my father, then for my grandmother, I tried to adopt an approach whereby the needs of my children still came first. It wasn’t always possible or even desirable to stick to this in practice, especially when situations arose very suddenly and needed my immediate response. However, as a general rule, I found it useful in working out the balancing act required. Like many carers, I balance roles of worker, parent and partner with the caring I’ve found myself undertaking as daughter and grand daughter. One of the problems for carers  can be a feeling of failure - that we haven’t done enough. And oh what hard, hard lessons they are to learn: to prioritise and when to say, ‘Enough! I’ve done enough for today.’ I did learn to set boundaries on the time I was able to give to caring of my dad and of my grandma and such boundaries were necessary for me to ensure that my close family were also getting the attention they needed.

However, when the person requiring full time care is your partner, for me - my husband, this radically moves the goalposts. This was a whole new, entirely unexpected situation, and it was playing out in our home and in our immediate family life.

I’ve learned that in order to simply cope, to keep the role of caring manageable, I have to aim to keep a balance. One mantra that helps me to do this is: keep it in the moment. Whatever has to be done only has to be done a moment at a time. Another part of maintaining balance is something I’ve mentioned before: keep as much as possible as normal as possible; just get on with the next task. This was my primary aim, driven not by thoughts of how it might help my husband but by thoughts of how it might provide stability for our children and for me in the changed landscape of home.  Doing ‘all the usual stuff’ was a self-care survival strategy, as was spending MORE time doing things with our children, not less. I started playing card games with our 11 year old son most evenings and we did jigsaws together too. It sounds rather like a 1950s vision of family pastimes! But talk comes more easily when two heads are bent over a pile of jigsaw pieces or when hands and gaze are occupied with shuffling cards. I chatted at length with our 16 year old daughter about college, clothes and world events. I explained to both of them, at different times, what was happening with dad (as well as what was happening physically in his brain) and kept it fairly brief, leaving space for questions. I answered questions as honestly as possible, but within a frame of what I thought was appropriate for each. It felt important for them to know enough to understand the nature of the illness and to express how they felt, but on the other hand I didn’t want them to take on feelings of responsibility. They could be caring and loving of their dad and of me, but I didn’t want them to become carers.

Thank goodness for school, friends, their own interests and social activities that kept them looking outwards and fixed into all the routines they were used to. No matter what the day might have brought, when they arrived home, it was business as usual as far as possible - though I did of course ask them to help out more with domestic tasks.

One other way I put myself and my family first might sound odd, but I told only close friends  what was happening. Why? We live in a small, rural community. I decided not to talk more widely about my husband’s illness not because I was ashamed or afraid of stigma or even because I wanted to protect him. It was because I wanted to keep my own identity. I didn’t want other people to begin to relate to me and to define me by his illness and by my role in caring for him. When I was with my husband, I had my figurative ‘carer’ hat on; when I managed to get out of the house, I was me, just as I’ve always been. It was simply what worked for the way I am. Perhaps it would not have continued to work if his depression had lasted longer than 8 months before the first signs of recovery. And now that he continues in an ever-stronger process of recovery (due, finally - when we’d given up hope - to finding a combination of medications that worked to lift the depression sufficiently for him to be able to engage with therapy and other means of him taking back responsibility and control), I’m more than happy to tell others about what happened and how things are presently. I’m able to look back and I do know, oh my goodness - I really do know - how fortunate that makes me/him/us.

I try to focus just on today. So, today I’ve returned from doing a care plan review with the staff looking after my 94 year old grandma in the nursing home she is now in; this evening I’ll plan the visit we’ll make as a family to celebrate my dad’s birthday in the residential home he lives in. I feel no guilt whatsoever that both are in separate care settings as both are cared for far better than I ever managed and their needs are being met. My husband is working with a verve and vigour that is astonishing and last night we booked a family holiday.

Today… is a good day.

by Polly