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Dee cares for her husband who has Huntington's Disease. Huntington's Disease is a hereditary disorder of the central nervous system and can cause a wide range of physical, mental and emotional symptons. They have four children aged 19, 16, 7 and 4. Until recently Dee was a teacher, but she had to give up work when her husband's condition reached a crisis.
Dee writes a 'blog' (a diary published on the Internet) detailing the ups and downs of her life as a carer. As someone who is new to being a carer, Dee has really struggled to adjust and writes frankly about her problems. She hopes that by being honest and sharing her feelings online other carers will feel less guilty and less alone.
Here she tells us why she is a reluctant carer.
When I was a little girl, I used to dream about being an adult and felt excited by the many career choices. As I grew older, I refined these down to teaching or writing. At secondary school, we had visits from career advisors who discussed 'appropriate choices' and 'financial considerations'. Now, at the age of 42, I find myself in the role of 'carer'. I feel as if I am in a strange land; it's not one of the jobs I was told about at school or even considered at any point in my life. It certainly doesn't come under 'appropriate choices', because I haven't had a choice in this...and as for 'financial considerations', well I can hear you laughing as you read that.
Quite frankly, the term 'carer' scares me. I associate it with duty, self-sacrifice and patience. I am woefully lacking in patience and as for 'duty' and 'self-sacrifice', I think of them only in connection with battle. Then there is the image which 'carer' conjures up. I apologise in advance to all you cardigan-wearers out there, but I always imagined a carer was someone wearing a shabby cardigan, standing by a wheelchair and smiling indulgently and angelically at their loved one. I've got my share of shabby cardigans but as for 'angelic'...well, now I hear my friends snorting. I already feel that I have failed the first hurdle - no smile and no acceptance of my new job. I suppose you could call me a reluctant carer, or even at times an 'uncarer'.
So, have I been dragged to this point kicking and screaming? Not really, to all appearances I have been quite compliant. But inwardly, my so-called caring has been accompanied by much moaning and resentment. I have lost two jobs, that of teacher and wife, in order to look after my partner who has Huntington's Disease. It is easy to define when and why I lost my career as a teacher: I was needed at home. But losing the second role, of wife, is harder to pinpoint. On paper and to outsiders, I am still his wife, yet I no longer feel like one. My husband relies on me to make all the decisions, and I am responsible for much of his personal care. After huffing and puffing to get him settled for the night, adjusting pillows and propping him in the middle of the bed, the last thing I feel like doing is the huffing and puffing of a romantic kind! The silence surrounding the change or even loss of sexual relations between carers and their partners must be a 'hot' topic, yet it's one that is rarely acknowledged. When I struggled in teaching, I had colleagues that I could discuss problems with; but carers are either saintly, long-suffering or just very reticent because I feel like a lone voice, shouting in a society that seems to largely ignore us.
Yes, I am a novice at this. At the moment, I am overwhelmed by loss and I have a sense of a long tunnel stretching endlessly ahead. Those of you who are further along the journey that I am just beginning, tell me that there are rewards and unexpected riches on the way. The resentment, and the guilt at resentment, may even ebb away. After all, no-one is forcing me to stay. As for the job of carer: well, all I can say at present, is that I care enough to stay today.
You can read Dee's blog at http://reluctantcarer.blogspot.com.
