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In Meeting this morning, a Quaker friend shared her response to, and feelings about, being a Befriender to people living with dementia. She sounded sad as she wondered about how much of a role, say, and dignity we allow people with dementia to have in their lives.

This chimed strongly with me, and with a challenge about language that was posed to me by another Quaker friend earlier in the week.

My friend questioned me about my use of the phrase ‘I have to…’, which I often fall into, especially in relation to things I do for my father. ‘I have to go down for his hospital appointment’, ‘I have to ring him’, ‘I have to reply to this letter from the bank’. My friend’s point was that we never ‘have’ to do anything – we may choose to, but we don’t ‘have’ to.

My friend is 80 and often challenges any references I make to ageing (and I feel like I’ve done a lot of this lately!). When she does this it helps me to put on my father’s shoes, and see how it must feel for him. I know how much I’d hate it if my son talked, in weary tones, about things he ‘had’ to do for me. It makes me remember the times I made dad unhappy because he doesn’t want to ‘be a burden’. How awful! What a monster I feel like when I think about it. And that’s another thing my friend has noticed – my tendancy to blame, and mostly blaming myself.

I look back now, with sadness and sometimes even horror – no, not too strong a word – at how I treated, thought and spoke about both my parents as they began their dementia journeys, the kind of things I tried to face them with. Whilst some of these responses came from stress and a sense of losing control, I realize now how negative the ‘have to’ words I used were, as well as being untrue. I can see, now that I am further along the journey myself and more able to cope, how they must have sounded to the person receiving them.

When I am honest with myself, I realize that after my mum died and the need to arrange input and support for dad became clear, I did resent this. I felt morally bound to help, I did not feel like I had the choice to say ‘no’. I was very close to my mum and missed her terribly, and was left caring for a father who I did not really know. So I ended up unhappy, and niggly, and impatient, and critical. It must have been awful for my father, who, as anyone would, wanted to keep his independence. To some extent it was a two-way street – dad resenting and getting angry at the family’s interference. Mostly, though, he simply lacked the awareness and understanding that he was no longer coping or keeping on top of things. I had to remind myself constantly of this and we gradually found a new equilibrium in our relationship.

Recently, something has triggered a bit of a U-turn in my thinking. Maybe it is just that I am more relaxed now that I have given up the struggle to hold down a job as well as dealing with dad’s needs. It got to the point that something had to give. Friends who have been supportive and positive about my efforts helped me to reframe things and to see that is actually a good thing to be someone who wants to care and take responsibility. My dad and I have got to know each other, and he tells me he loves me, which is wonderful. I have the blessing of being able to spend some time with him doing things that we both enjoy. I used to feel that somehow I had sacrificed my life and health for dad to be able to stay at home, but, in fact, I have been given something new and enriching.

Now I just need to try to change that ‘have to’ language to match!

© Anne de Gruchy