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.
Your blog is very interesting. Your sandwich carer situation is familiar to me. My Father had Alzheimer's in the midst of a number of other family situations. It certainly isn't an easy time. I understand your problem in dealing with a parent with dementia. It is a constantly changing situation. It is hard on you to see your Father slipping away and it's hard on your Mother to lose her husband little by little. Hopefully you can keep your sense of humour. Luckily, in my Father's case, his humour was one of the last things to go.
ReplyDeleteI hope you are in contact with others who have been through this. Every situation is different but it can give you an idea of where you are. Every bit of information helps. Good Luck.
http://www.cbc.ca/thesundayedition/documentaries/2013/07/14/redefining-dementia-in-denmark/index.html
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