Just who is Living Well with Dementia?

Mum constantly asks for my help, but wants it as from a servant rather than a peer; unquestioning and on call.

A facebook friend recently wrote, “I have tended to the most personal needs of my late elderly father, and doing so only made me love him all the more – if that was possible.”

Here in the UK we have a ‘national government strategy entitled Living Well with Dementia that aims to promote “The practical things people with dementia can do to live well now and make plans for the future.”

I’m happy for my facebook friend, and glad that there is official awareness of what can only be a growing issue in our society. But…

My truth – which I can admit in the anonymity of a blog – is that I do NOT love my elderly mother more through caring for her in her infirmity. Her personality is crammed with interesting and admirable quirks – sociability, creativity, vigilence, determination, eccentricity – which, when magnified by physical infirmity and vascular dementia, become an inability to be alone, mad ideas, neurotic anxiety, bossy stubborness, illogical unreasonableness – and make her a total pain in the pants.

She constantly asks for my help, but wants it as from a servant rather than a peer; unquestioning and on call.

This morning she phoned – sounding puzzled – to say that her hall and living room were covered with ‘mess’ and that she had spent ages trying to clear it up but couldn’t manage it, so could I come down as soon as possible to sort it out. She reckoned a dog must have got into her house somehow and had ‘messed’ on the carpet. My heart sank as I feared that maybe she had had a bit of diarrhoea and had trailed it along the floor as she tried to reach the loo. So I rearranged my day, gathered some cleaning materials AND GLOVES! and headed off to do my duty.

What a relief when I discovered that the ‘mess’ was a trail of crumbs from a Choco Leibnitz biscuit that must have been in her lap when she stood up, fallen on the floor and been crushed underfoot.

While I was sweeping up the crumbs and hoovering, her friend from sewing club called to arrange to pick her up this afternoon; after a short conversation we agreed that I would take Mum to the sewing club today and the friend would bring her home. This was a good compromise as the friend was going out for lunch today and they do me a big favour every week by offering this lift.

Then I made a mistake: I should have left after cleaning up and gone back three hours later to give the lift, but (stupid Stupid STUPID) I stayed. By sewing club time I had found her glasses down the back of her bed, cleaned the bathroom floor, picked up all the beads from the string of beads she broke last night, made her a good quality lunch and – here’s where it all went wrong – discovered her folding up sheets of kitchen paper to wear as pads inside her pants.

Well, this is where my patience ran out. NOT because she has a continence problem; but because she won’t use the appropriate products. Does she have access to suitable products? Yes. Does she get them free on the NHS? Yes. Are they delivered to her door? Yes. (There is another potential blog post along these lines on the topic of Mum’s hearing aid.)

Four  years ago when she had a major stroke she started getting a supply of pads because although she is continent her extremely poor mobilisation means it takes her a very long time to get from her chair to the toilet, and as a result sometimes the wee comes out too soon. A few months ago she told me she had tried to reorder her pads but that they had told her she wasn’t on the list. She didn’t understand and asked me to find out how she could get her supply of pads. Let me repeat SHE ASKED ME TO FIND OUT.

[As an aside: I discovered that the local NHS Trust had changed its supplier and that, as Mum had not placed an order for more than six months, she had been taken off the list. The new supplier required her to be re-referred by her GP practice. This involved a complete waste of the district nurse’s time in doing a 3-day continence chart for Mum – which Mum was totally incapable of completing, but which needed two visits by the district nurse to deliver and pick up what was essentially a made up form. “Just put down plenty of ‘wets’, ” the nurse told me on the phone.]

The ensuing argument can be summarised as Mum assserting that the pads don’t stop the wet but two folded pieces of kitchen paper do, and that I am basically the worst daughter in the world.

What she really wants is a Lady-in-Waiting who has no identity of her own and whose opinions are never to be heard let alone given any consideration.