My mother was diagnosed with vascular dementia in 2010. This is a blog about coming to terms with her absent mind.

Monday 14 May 2012

An apology

I have to apologise for the lack of blogging lately. It's a combination of a serious attack of the glums, a feeling that I'm just whingeing about the same things all the time and falling out of the habit. So here we are again and I promise to try harder.

In a lot of ways it has been a bit of a challenging week. Ma has shaken off most of her care home ennui and is back to the restless, grumpy, strong-willed person she was - in truth this is much more heartening than the limp, passive shadow she had become. But it does come at a cost to my patience and sanity.

Our routine at the moment goes like this:

I go in to Ma and open the curtains at about eight then she stays in bed until the carer (usually Kay) arrives at around half eight. While Kay gets her up, washed and dressed I strip the bed and make her breakfast. She's wheeled into the living room and we tackle breakfast.  These days she has difficulty remembering how to do things so sometimes she needs more supervision than others but I try and get her to do as much as possible on her own because once she's lost a skill it is gone forever. With this in mind breakfast is often some sort of wholemeal sandwich because with encouragement she can hold a small square at a time. On bad days I feed her porridge or Weetabix. And some days she can operate a cup, other days she needs to be helped. I transfer her into the chair where she dozes on and off  for about half an hour while I shove the hoover round, hang out the washing, shove more in and generally tart about doing as much housework as I can fit into 30 mins.

If the weather is nice and we aren't expecting social services, the continence nurse, the dietician, an equipment delivery or visitors we will go out. These days we aren't out for long. Any car journey longer than 10 minutes becomes an ordeal (see here) so we tend to go locally for shopping or a flat out 15 minute whizz around the garden centre. Anything to get a bit of fresh air and a change of scene really.

In the afternoon Ma is often restless, getting up and walking from sofa to sofa to chair and back again. This is when she does quite a lot of talking back at the tv and moving things around - cushions, dog's toys, my shoes. The other day she put two footstools on one sofa, all the cushions on the other sofa, my Crocs on top of the standard lamp, her fleece blanket on the tv and poured a dish full of Aero bubbles down the side of the chair. I still can't find her other drinking cup or two pairs of my glasses.

She might doze again for a while then we watch Pointless before she has her tea and the ritual of the magical returning tablet begins. I've tried crushing it into things and wrapping it in other things but these are always vehemently rejected. So it just seems relatively easier to keep plugging away and putting it back in every time it pops out again. However it is achieved, the process takes a toll on both of us. She gets angry and I get upset. I feel like a big fat bully making her take it and she usually retaliates physically.

Once that is over with she will sit and shout at the news while I make up her bed and a hot water bottle, lay out her pjs and overnight stuff and make sure everything the carer needs is ready in the bathroom. The carer puts her straight to bed at around 7 and then I put her back again several times thereafter. She tends to fall asleep at around 9ish and then thankfully these days she does sleep through until I go in in the morning.

It might not sound like much but it can be utterly exhausting. Particularly the constant talking and questioning which is a challenge to decipher, something I rarely have much luck with any longer. The tv goes off regularly to stop the shouting but especially at mealtimes because she often can't see food held in front of her or remember what to do with it - difficult to explain and frustrating to deal with - and the distraction of the tv just makes that worse.

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In other news... H begins her final GCSEs today so the countdown begins :)

Managed to do some nice blips this week and the OU course is very enjoyable so far.






5 comments:

  1. Bee, please don't apologise. You're dealing with a tough situation. You have mine, and I'm sure many others, absolute admiration for what you are managing.

    Crumbs coming your way, plus a few thoughts to the big man up there. xxxx

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  2. It is hard, and it's difficult to keep the glums away when you know exactly how tomorrow is going to go, and the next. Do you have the possibility of repite care? When I was in your situation, it kept me sane! Finding the humour and putting it in your blog helps you too, not to mention all the other people looking down the same road.

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  3. Bee - I read this because it's always, always fascinating. There isn't any dementia - yet - in our family but your descriptions of daily life are so vivid and detailed that I almost feel it's required reading, future-proofing. And I wonder just how hard it is to provide this level of care for your mother, someone who once provided similar levels of care for you, with the added bonus that you would grow and develop. Have a big fat hug x

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  4. George Hencken14 May 2012 at 20:53

    As Orange99 said, "always fascinating".I read your blog because it's often funny, always engaging, and truly inspiring. That you continue to be creative in your writing and photography make you a truly remarkable woman. Your mum raised a fabulous daughter. X

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  5. Do you know what...I think the glums may be contagious, I haven't blogged for ages myself, I am hardly on twitter or fb and haven't cooked soup for a week or two.

    Or maybe we both have a little diversion? The OU course so far is good but a little time consuming is it not?

    Lets have 10 weeks of doing something for ourselves? Well as much as possible anyway :) xx

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