For many years now I have been caught up in a cycle of stress and meltdowns trying to juggle life and work and my dad’s needs. This has been aggravated by the fact that my dad lives 200 miles away, and you will be familiar by now with my rants about the woes of long-distance caring. I spent several fruitless years trying to get support from the social care services where my dad lives. When I was close to a breakdown I asked his social worker for input and help with crisis planning, only to be told that I should pull out and ‘let your dad fail’ – only then would they be able to give some input. I wrote to ask for a Carer’s Assessment and was refused.
Over the following two years I took this battle on personally, creating a certain level of worry for my family and friends along the way. I asked for support from my GP with little success. I changed GP, again registering as a carer, and asked for help in appealing the refusal of the Carer’s Assessment, only to be told I should ‘park’ my expectations. But I’m a stubborn person when I believe in something, and I was feeling desperate and alone. I saw a different GP in the practice and now have some good support.
Then, at this very difficult time, a special man flitted in and then out of my life. I did not know whether the ‘out’ was permanent, and began to think about the reasons things fell apart – and the way that I tend to spend so much energy thinking about how other people are feeling that I don’t fully engage with, or acknowledge, my own needs. My special man would immediately recognize what I’m trying to put down in words – he had an uncanny ability to really ‘see’ me. It was something that brought us close, but that could also be a problem. Sometimes he wanted to get through that veneer – past the concerned/stressed/taking-on-other-people’s-problems me, to the ‘real’ (and more relaxed) person underneath.
This thinking spree proved to be timely. My helpful GP had written to social services in dad’s area asking them to reconsider giving me a Carer’s Assessment, and a few weeks later a big questionnaire plopped through my letterbox. I had hoped that the assessment might entail meeting with, or speaking to, an actual human being, so I telephoned the Carers’ Caseworker who had been assigned to me but was told that I needed to complete the paperwork before any face-to-face options could be considered – so I hunkered down with a supply of biros and a big mug of tea.
The Carer’s Assessment, like most things to do with carers, was not designed for those living long-distance. The questions were all about how your daily role of caring might prevent you doing certain things, and asked what a ‘typical’ day would look like. I have no typical day. If I’m at home it’s one thing – leading my own life but with time spent on phone calls, paperwork, finances, organization and crisis management for dad – and if I’m at dad’s it’s 24/7 supporting dad with no ability to lead my own life or to go to work at all.
But a magical thing happened as I began to fill in the details – I started to realize that this was all about me and not dad. I began to see that the ‘taking-on-other-people’s-problems’ me actually needed to start doing a bit less rather than a bit more, and that dad, too, stood to gain if I could find the more relaxed me underneath.
Dad is clear about what he wants. He wants to stay at home, independently, for as long as possible. We – his family – want to support him to do this. However it comes at a cost, and increasingly there are risks and issues of safety to consider as his Alzheimer’s progresses and his eyesight deteriorates further. But what I see more clearly now is that one of the biggest barriers for dad is me being realistic about what I can do. I know I need to give care lovingly if I am to do it at all – and moving from paid employment to self-employment has facilitated this – but I am still the person who takes other people’s problems too much to heart.
I have decided to try to regain a bit more of ‘me’ – to actually visit dad less often, but give him more quality time and attention; to work with my sisters to simplify his affairs; to make space again for spiritual things and not setting an alarm at the weekend. I hope to meet my Carer’s Caseworker face-to-face, but I am going to try to be my own support, too – to take responsibility for managing myself as well as dad.
Flapping around trying to prevent dad from setting himself alight at the candlelit Midnight Mass on Christmas Eve. I was only partially successful – he has a nice brown singe mark on his jacket sleeve. He was by no means the only one flirting with fire in the aisle that night!
The response of my wonderful ‘old’ friend to my recent depression – texting me every day and making me feel cared for and supported at a very dark time.
© Anne de Gruchy