I don’t find caring for my dad easy.
The word ‘carer’ slips out freely enough – I have worked with carers and in the field of mental health over many years and, just as I am not shy of admitting to having mental health problems, I am happy to identify myself as a carer. Sometimes this feels a little fraudulent, and I add the rider ‘long distance’ to the word carer. When people think of carers they tend to envisage someone who lives with the person they are caring for, or who lives locally. Someone who has everyday input – ‘hands on’ input involving helping with washing and dressing and meals. I care from a distance of 200 miles.
Of course there are frequently times when I visit and take on a ‘traditional’ caring role, but mostly I am managing, and organizing, and overseeing things. This may, on the surface, seem less stressful. However for me it resulted in a mental breakdown at the end of last year, involving, as it does, not only running my own house, life and affairs, but my dad’s too.
Long-distance caring involves setting up and running a care package, organizing lifts and a social life, dealing with agencies, and somehow keeping a check that the tasks I have asked someone to do have actually happened in reality. This is easier said than done. Try checking from 200 miles away that your father’s memory tablets have been given every day, or that the wheelie bin has been put at the bottom of the drive, or the reason why the bath aid is no longer working. My dad lives alone, bar his lovely westie, Isla. He can’t remember things such as where the medication box is kept (which is a safety blessing, of course) or even that I’ve asked him to go and look for it. He can’t see well enough to know if the tablets are still in their slots. A lot has to be left to trust, even though I know that things can, and frequently do, go wrong.
Equally, with finances, it is impossible to judge how things are going. Dad will swear blind that he manages and never leaves a bill unpaid, but we (his family) know different, having to trouble-shoot regularly when we discover unanswered letters from the personal alarm company, or building society, or house insurer. This is one of the saddest things for me – having to take on dad’s finances under power of attorney. Dad is a proud and meticulous man who never would leave a bill unpaid. In his head (and his heart) he is still that man. Part of the art of caring, it seems to me, is trying to avoid situations that mean I have to face my dad with these realities.
You will notice that I said ‘we (his family)’. I must mention here my two wonderful sisters. My sisters are my biggest support and without them I would sink without trace. Unfortunately they both took the last exit from the UK some years ago – one to Australia and the other to southern France. It’s amazing how much they do via email and phone – arranging occupational therapy assessments and even the installation of a stairlift – but they are not ‘on the ground’ or available to do the emergency dash when dad’s bladder cancer needs treatment or he has a fall.
Before I left my job to focus on caring for dad and my writing, I did a rough check of my input to dad’s affairs over the previous year. It amounted to many hours a week – nearly as many as my regular working week. Every day there are letters, and phone calls, and situations to respond to. Recently I came back from a three week stay which included no less than 13 medical appointments, hospital visits, POA meetings with the bank manager, and one-off practical tasks (including the installation of an induction hob to replace the less-safe gas one). This was time I could not have given whilst sustaining my employment. In their wisdom Dorset Social Services refused me a Carers Assessment – something I am entitled to under government guidelines. They said I do not provide substantial enough care. The fact that I have had to give up my job to care appears to have passed them by.
Fortunately for me, the brilliant Alzheimer’s Society came to my rescue in the form of a Carers’ Support Group near to where I live. Many of the members, who mainly care for their partners at home, find it strange to identify themselves as carers despite having the more traditional role. After all, it is natural to look after those who we love. But it was such a relief to find another long distance carer there. Being a carer from a distance is like The Loneliness of the Long Distance Runner, especially when you know you are likely to be running a marathon, and to find another person to run alongside has been an unexpected joy.
Sniffing my cat – and without sneezing! (Everyone else is allergic to him!!)
Being surprisingly moved by the Glen Ligon Encounters and Collisions exhibition at Nottingham Contemporary, with its focus on race issues and the civil rights struggles in America in the 1960s.
© Anne de Gruchy 2015