As regular readers of this blog know, I cared for my father for 19 years during his vascular dementia. For the majority of that time, however, I never considered myself a carer - just a daughter looking after her dad. As I said in my G8 Dementia Summit film, "You become a carer, but you don't realise you've become a carer."
For UK Carers Week 2014, I want to focus on questions carers often ask me, and indeed many questions I frequently asked myself during my father’s dementia.
Day 4 - Is it wrong to want something more for myself?
This is perhaps the one question carers, people who are often naturally more selfless than selfish, struggle with. I had huge battles with myself over balancing my dad’s needs with my own. It isn’t easy to be in your twenties and watch your friends furthering their education and beginning exciting careers and not doing the same yourself.
Choosing not to do what everyone else was doing had nothing to do with coming from a privileged background or not wanting to work - quite the opposite in fact. I just realised that dementia was a terminal disease and that I had limited time left with my dad. Spending as much time with him as possible had to be my priority.
There are huge and inescapable practical considerations for carers around finances, working and/or studying. Caring can be all-consuming, yet with a pitiful carer’s allowance and with many people finding trying to claim it impossible, it can make paying your bills a huge worry. For many people caring isn’t for a set period of time either, so trying to plan for future study or a career can be really difficult.
Respite care for your loved one is vital to give you some work or study options, but as we all know respite can be unavailable, expensive or unworkable for far too many families. By way of offering a bit of hope, however, I have known of carers who’ve made a success of home-based work solutions, started up their own enterprise with products or services that they’ve identified a need for, embarked on distance learning courses or managed to negotiate flexible study or work arrangements. There is no denying though that for most people this is difficult, if not impossible, until after their caring duties end, hence why my career only began at 31 after my father passed away.
Further reading:
D4Dementia: 'Caring for carers'
D4Dementia: 'Be inspired, be very inspired'
D4Dementia: 'The carer's job description'
External links:
Dementia Action Alliance Carers' Call to Action: http://www.dementiaaction.org.uk/carers
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