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#26 (In Topic #23)
Site director

admin2 in the usergroup ‘Administrators’

Caring for Christine

'Personal Assistant Required.  24 hour a day commitment, seven days per week.  Holidays: nil.  Duties: everything.  Salary: maximum £59.75 per week carer's allowance'

Interested in applying?  Probably not, but the above summarises my role for significant periods during the last 5 to 10 years of my partner Christine's life.  And I won't be alone - many others caring voluntarily for partners or family members will be in a very similar situation.

Some carers find themselves suddenly thrust into the role following an illness or accident.  For others like me caring for someone with a progressive condition the role sneaks up on you, sometimes over many years.

Until Christine died last year my role as a carer was a journey that lasted the best part of 25 years, nearly as long as my 'real' job as a teacher before that.  The latter part of the journey was pretty stressful as health issues and crises became more frequent and serious.  But overall, from the point when Christine was diagnosed with multiple sclerosis in 1983 we did both manage to live remarkably positive and varied lives.  But it doesn't happen by accident!

By 1993 Christine's condition had reached the point where she had to stop working, and I was able to take early retirement aged 50 the following year, at which time my role as a full-time carer began.  Knowledge equalled power in this new situation and Christine in her usual methodical and focused manner set about identifying the personal and financial support to which we might be entitled.  

The importance of doing this thoroughly (and collecting evidence to back up your case) rapidly became clear as we came to recognise - surprise surprise - that social service and NHS professionals didn't always know what they were talking about!  But to their credit they were usually prepared to recognise that Christine had a more complete overview and to do their best to ensure we had access to the resources that we needed.  Ultimately, this included a funding package (direct payment) to employ personal assistants for part of the week, plus a range of increasingly sophisticated equipment needed to make caring for Christine at home possible.  We were also prepared to spend our own funds to make adaptations to our home, buy a wheelchair accessible vehicle etc.

Now that neither of us had the demands of employment to get us out of the house it might have been very easy to find the challenges so overwhelming that it would be easier not to try.  It's not something that I remember making a conscious decision about but in practice the new flexibility gave us the opportunity to develop new and different careers.  Christine in particular became very involved with disability issues and began to undertake some fairly high profile (and often, paid) roles.  I was her driver and personal assistant when it came to managing her papers in meetings, and her helper during trips to London when we stayed overnight in hotels.

Caring for Christine actually opened up a whole new range of experiences and interests for me.  In my role as Christine's carer, I have been lucky enough to meet some interesting and influential people, been to Buckingham Palace twice, stayed in some very nice hotels at no expense to ourselves, and eaten oysters on the terrace at the House of Lords!

As Christine's new career developed and I became more familiar with the issues and challenges faced by disabled people, my new career also took shape.  A chance conversation with a disabled friend raised the issue of how difficult it was for disabled people to find suitable housing.  I remember remarking that what was needed was a website that only advertised property with wheelchair access.  And so the Accessible Property Register was born.

For a carer, running a website is ideal because it can be fitted round the demands of caring.  I think I would be lost if I didn't have something in my life that was work-related, and maybe that is even more true now that Christine is no longer with me.

I know I've been lucky and probably not that many carers get to eat oysters at the House of Lords!  But to some extent, you make your own luck and there are choices that need to be made, for example about whether to give up work or not, and looking after your own health, friendships, and social life.  I remember meeting one carer who told me that her husband, 'Won't accept care from anyone else' - and in the next breath that her way of coping was to go into the kitchen, grip a carving knife very tightly and say under her breath, 'One day… One day..!'  That's dangerous - no one should have to feel like that.

Who cares for the carers?  Carers do.  We have a responsibility to care for ourselves because in many cases, we are the only people who can.  But where they are able, the person you are caring for has responsibility too.  At some cost to herself, Christine always tried to make sure that I got time off, evenings to go to the pub, a couple of nights a month to go away.  I know she felt less safe when I wasn't there, but it did matter, and I'm enormously grateful to her for the support that she gave me and the sacrifices she made.

So to suggest that my caring role occupied 24 hours a day seven days a week isn't strictly accurate.  Christine's wonderful assistants covered most weekdays and some nights, but I was always aware that the buck stopped with me.  Holidays, illness, whatever I had planned had to be set aside and in the last couple of years at least, caring really could be a 24-hour business.

Those last couple of years were really pretty hellish for both of us as increasingly regular and complex health crises threatened to overwhelm us.  We both saw far too much of the inside of hospitals.  Professionals do try, but there are ridiculous shortcomings, like being asked by a major spinal injuries unit if we could bring our own pressure relieving mattress when Christine was admitted for an operation!

I have to admit that there were times in those last months and years when I desperately wanted it to stop, and finally it did, very quietly on a Sunday morning last March.  

My life is very different now, everything I thought I wished for - endless time and space to do exactly what I want - can seem rather empty and pointless.  However difficult things were and however much I resented the relentless drain on my time and emotional resources, I could never doubt that what I did mattered.  I doubt I will ever do anything that important again and, although it was hard, I'm immensely glad I could be there for the whole journey.  So thank you Christine for everything - especially those oysters!

Last edit: by admin2
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