We asked Marianne Talbot, who wrote a weekly blog about caring for her mother who had Alzheimer's disease, for her top tips.
Saga have asked me to list my tips for carers but I hate the usual anodyne tips - I’d happily ‘take a break’ and ‘avoid stress’, but how? So I’ll break the mould by offering just one tip, but six steps to help you achieve it:
Tip: identify what’s needed to make you YOU and make damn sure you get it!
Here’s my guide to acting on it:
Step One: list everything you’d really like to do daily, weekly, monthly and yearly
My ideal life includes a daily twenty minute walk, a thrice-weekly swim, a weekly outing with friends, regular theatre visits, occasional weekends away, a week’s walking in the Lakes and two weeks somewhere hot.
Without these things I’d become resentful and irritable. Mum would feel vulnerable and I would feel guilty. Result: crisis.
But I work full-time and mum, who has advanced Alzheimer’s, lives with me. How achieve any of these things, never mind all?
Your wish list may be very different from mine. And writing it won’t be easy if, like many carers, you can’t remember who YOU are. Think about your 19-year-old dreams: then revive them!
Don’t dwell on the barriers – if you do you won’t get anywhere.
Step Two: for each listed item, say what you need to achieve it
For my wish list I need: day care, respite care, time, willpower, substitute carers, hard-heartedness, extra funding, organisational skills, and persuasive powers.
Day care will account for the walking and swimming, but only if I exercise willpower to make time for myself. This is probably true for you too. If so, then get time and willpower on your list.
For evenings out, the theatre and weekends away I need substitute carers and a hard heart. The last is non-negotiable. Mum gets clingy when I go out. But should I stay in, it would be to invite resentment. Unless you are naturally hard-hearted it should be on your list.
You might be able to pay for substitute carers without extra funding. Even so you might prefer to rely on people who do it for love (or at least guilt).
But then, like me, you will need organisational skills and persuasive powers, the former to decide when people are needed, the latter to get them on board.
The final part of working out what you need involves constructing a timetable.
Do you have exact dates when you'll want substitute care? Is anything entirely open (your walk?), fairly flexible (your swim, walking holidays?) or open until arrangements are made (outings with friends, theatre trips, weekends away)?
Make your timetable of needs as precise as possible.
Step Three: brainstorm ways of getting what you need
Some things on your list will be things you have to be. If you have trouble with willpower, prioritising your needs, organisation, persuasion or hardening your heart, then you need to work on yourself.
You could take classes (try your local carers’ centre), read self-help books (try your library) or have coffee with friends and ask for tips.
Challenge any belief to the effect that you can’t change – why can’t you?
Getting substitute care will probably involve asking for help. This may hurt. I like to think of myself as superwoman and hate asking for help. But for carers self-sufficiency is not where it's at.
List everyone who might provide substitute care. Include family, friends and neighbours, but be creative: try the guides, the church, local charities. Might your local sixth form help as part of community service? Ask them.
Order your list according to people’s moral responsibility. Not so you can blackmail those at the top (though it’s worth a try), but so you can send a complete list, however rough, of when you need help, thereby giving a choice of dates and times.
This makes it easy for anyone who’d like to help, and difficult for anyone who doesn’t. Anyone claiming to be unable to do any of your dates or times should be scrubbed off your Christmas card list.
Extra funding is available: the Alzheimer’s society gave me £400, Age Concern provided a ‘flexible friend’, and my carers’ centre gave 12 hours’ free care. You won’t get anything unless you ask. So ask.
You are entitled by law to day and respite care. Do not be put off, as I was, by a council employee’s telling you a carers’ assessment is useless because there’s no money. Exercise your rights!
Step Four: make an action plan
If you were working to my plan you’d need to visit the library, ring the carers’ centre and arrange coffee with assertive friends.
You’d also have to contact family and friends, speak to neighbours and approach your local guides/church/school.
In chasing funds you will be ringing many of those already listed: do not make two calls when one will do.
One of your first calls should be to your council to sort out entitlements.
List everything you need to do, together with dates for doing it.
Step Five: implement the plan
This one is easy – get on that phone!
Step Six: check your progress
Every week I check my progress over a congratulatory glass of wine: I am, after all, looking after myself as well as my mum and that is a good thing
Step Seven: don't panic when things go wrong
Sometimes people get flu, trains are late, and crises occur. Sometimes your piglet will refuse to play ball. Even the hardest heart has to melt sometimes.
The trick is to reflect on what’s gone wrong, and on whether and how it can be righted. If it can be righted, plan and implement your strategy.
If it can’t then just forget it...
...after all if, having acted on my tip, you are living roughly the life you want to live, then missing one treat is not the disaster it would be otherwise.
I hope this works as well for you as it does for me!