Healthy living Blog
Carer Diary
May 22, 2008: in everyone's way
Marianne Talbot, who cares with her mother who has Alzheimer's disease, chronicles their lives together in this warm and touching blog
Oh dear. The direct payments I thought were so marvellous might prove to be the final straw.
I am good with money. I was my dad’s Receiver for years. Have been mum’s attorney for even longer. Yet it took me three days to understand PAYE.
The Inland Revenue helpline is wonderful. But there are so many ifs and buts. And so much misleading information (mainly from social services).
Since November 2nd I have been paying Anita as self employed. I was told that was fine. But it’s not. Now I have to work out how much tax and national insurance Anita should have paid and claw it back. And I must pay my contribution.
I haven’t screwed up the courage even to look at this.
Then as none of my carers can work regular hours I must negotiate a new rota each week. First I ask one what she can do. Then I ring the other. Then I re-negotiate with the first. Each week there’s a different pattern to my own week as I fill different gaps.
But my life was packed to the gills before starting direct payments. I have never been so far behind with so many deadlines: I am constantly nagged by guilt.
I am also constantly in the way.
At 8.30 a carer arrives. So I must either be out or hiding in the study. Then I can’t return, or I must hide, until 6. My home is not my own.
Nor do I have a workplace to go to. I (supposedly) work from home. In fact I work from Café Nero. I used to enjoy this. But then it was a break from being at home. Now I’m there for 8 hours! Far too fattening and far too expensive.
I tried the library but kept ending up next to people who sniff (aaargh!).
And the domestic chores, instead of being a pleasant way of punctuating the working day, have become just another job. Now I have to do them during the evening or at weekends when I am supposed to be looking after mum! Or I have to do them before mum gets up or when she has gone to bed.
But I am so tired. I have no downtime. Everything revolves around mum and her needs. My needs don’t get a look in.
But nor, now, do I feel I am needed.
‘Nonsense!’, you might say. But there’s an important sense in which this is true. What mum needs now is stability and constant care. Who she gets it from is irrelevant so long as they are kind.
Mum is no longer getting any benefit from the fact that her main carer is me.
More from Marianne
More on caring
- Top tips for carers
- Saga long term care advice
- How to get a carer's allowance
- Chat to other carers at Saga Zone's caring forum
More on care homes
- Questions for care homes
- The nursing home survival guide
- Care homes in an ideal world
- Home time for dad: how one woman persuaded her father to give up his independence
- Advice on nursing homes and free care
Useful websites
Information on this site is for interest only and is not a substitute for professional medical advice. You should consult your own doctor about any specific health concerns.
