Why Sandwich Carer ?
I am new to the world of blogging and tweeting but have been encouraged by friends to enter it. I would like to share my experience and knowledge as well as expand my horizons.
Why ‘sandwich carer’? For the past 30 years I have cared for my daughter Erica, who has profound and multiple impairments as well as some very complex health needs. She continues to live at home with my husband and me with a very good mix of support, which enables her to live a life with some independence. Now for the sandwich part. In the past few years I have taken on increasing responsibility for my parents who live about 10 miles away from me. This has included holding power of attorney for both financial matters and health and welfare decisions. My father has dementia – probably Alzheimer’s – and my mother is physically disabled.
I consider myself as having a lot of expertise in the disability field having lived with my daughter, but also as a freelance social worker/ consultant for the past 12 years working as a writer, researcher, trainer and consultant. I have been active as a campaigner both locally and nationally. However my entry into the world of dementia has made me feel totally inexperienced and at times very confused and inadequate. Although I know my way around the health and social care systems (if they would just stop re-organising them every few years) I don’t know my way around dementia.
I have struggled not to argue with my father when he insists that his parents, and even his grandparents, are alive. I have struggled not to lose my temper when he phones at 2am to ask if I will come and collect him to take him home (we don’t know where that is). I have heard others say ‘just go along with him’, ‘agree with what he says’. It just ain’t as easy as all that. As my mother’s arthritis progresses as she can do less around the house I struggle not to resent their reliance on me. Our roles have been reversed and I have become the parent to my parents whilst at the same time having care responsibilities for my daughter.
So what gets me through the day? Probably 3 things: humour, having ‘me time’, and enjoying my grandson! I try to see the funny side of situations or rephrase some to find a lighter side. My father insisted on having a Facebook page, and one day he informed me that he had signed up to a ‘thing’ so he could contact all his friends. I could not make head nor tail of what he meant, so I went onto Facebook to find at the age of 81 he had joined a ‘dating agency’! I sent him a message asking if he was intending to take my mother with him on his dates. Once a week I visit my grandson who lives about an hour away and I try to have at least half a day a week when I do things unrelated to caring and work.
I am looking for bloggers to follow and share with, tweeters to tweet and retweet with, so if you would like to comment I would be pleased to enter into conversation.