Healthy living Blog

Carer Diary

April 16, 2008: time to start living again!

Marianne Talbot

Marianne Talbot's direct care payments kick in, and for the first time in years she can accept a dinner invitation knowing that her mother, who has Alzheimer's disease, is being cared for

My life is transformed. Suddenly I am almost a free agent. I can say ‘yes’ to invitations. I can do a full day’s work. I can do spontaneous. These direct payments are marvellous!

Tonight a friend is unexpectedly in town. He suggested we meet for an early supper before he goes back to London.

Two months ago I would have had to embark on a ring round to find someone willing to mum-sit. More likely, knowing the ghastliness of doing this (and the slim chances of success), I would have said ‘no’.

I was saying ‘no’ to a lot of invitations: not the way to avoid resentment.

Now, though, I can ring Carol or Anita and so long as one or the other is free I am off! Even if they’re not free I have other strings to my bow – money can undoubtedly buy some sorts of happiness.

I have a feeling this has come in the nick of time. Mum really is deteriorating. Yesterday, for example, we were hanging out washing. Two months ago she would have done it competently, albeit slowly, on her own. Yesterday she wasn’t sure what the pegs were for.

First she tried to attach a towel to the line without a peg. When I gave her a peg, she attached it to the line without the towel. When I demonstrated the use of the peg to attach the towel to the line she just didn’t get it.

But she knows she’s not getting it. And she obviously feels defensive. We all know and so, apparently, does mum, that the best form of defence is attack.

I find myself under attack often these days.

I ask mum if she wants to finish the cereal she’s obviously forgotten, for example, and she’ll round on me: ‘I am finishing it, she’ll say indignantly, ‘leave me alone’. Or if I make her get up after she’s got into bed with all her clothes on, she accuses me of persecuting her.

These are not the joky complaints she used to make. These are the heartfelt complaints of one who feels she is being made to do something she doesn’t see the point of.

Mum doesn’t go to daycare on Sunday or Monday. Until recently I have been on duty day and night for 48 hours. It is very isolating to be with someone who thinks you’re constantly getting at them. Especially when you’re actually trying to help. By Monday evening I have been at screaming pitch.

But now I can afford someone to relieve me for a few hours: I can go swimming or walking or I can shut myself in my bedroom to read a book…

Luxury!

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Reader comments

Marianne, you're wonderful and I'm so glad that at last you've got some space for yourself. My Mum is going down a similar track and the carrying of responsibility was starting to wear me down although I wasn't nearly as burdened as you have been. So I do have an inkling of your longsuffering and have been able to identify with much of your writing. My circumstances changed about 6 months ago and only now am I beginning to feel a real 'me' again. I trust you will feel more and more so as time goes on and do hope you will turn your blogs into a book to let other carers feel they are not the only ones going through this hard period of caring for those suffering such a cruel and sad disease. Your sense of humour and reality have been a real help. Thank you and may God bless you.

Posted by: Christine Seward | 17/04/2008 21:03:07

 

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