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

Friday 17 August 2012

<----------- Hear that??

.... that would be the sound of the door slamming behind me.

I'm taking H to Cornwall for 11 days, Ma is off to respite for a week then Peter is collecting her next Friday and staying over the bank holiday weekend.

If you follow me on Twitter or Facebook I'll see you there, otherwise I'll see you on here sometime around a week next Tuesday :)

Tuesday 14 August 2012

You couldn't make it up

Me: Right Ma ready? Let's go and get in the car.

Ma: Oh I don't think I want to go out there.

Me: Come on... it's day centre today, you love it there.

[reluctantly steps out onto the path]

[dog runs past me into the front garden]

Me: Oh flipping heck Lily, hurry up.

Ma:  Yes ok [starts walking faster]

Me: No! Not you Ma, the dog! Be careful, you'll fall.

Ma; Oh ok.

Me: [to dog] Come on inside!

Ma: [turns round] Yes ok.

Me: No Ma, the dog needs to come inside. Come on Lily, hurry up...

Ma: Yes ok. [starts walking quickly towards the house]

Repeat and fade.

Monday 13 August 2012

Laundry woes, egg mayo and a bite on the boob

It is really difficult to describe adequately how enervating it is to live with someone who spends the majority of the day on a 90 second loop. I regularly have people say to me that it must be like living with a toddler again. Well, no actually, for the majority of the time it isn't. Toddlers will sit and play for stretches of time, go for a nap and are generally cute and entertaining. Dementia patients are often unsettled and in a state of mild distress for long periods of time.

Mealtimes and tantrums are the most toddler-like behaviours I suppose. If you try and feed something that isn't liked it will be reappear rapidly and end up on the table/plate/chair or spat out. A lot of food is eaten with the fingers and you quickly learn not to give sandwiches with sloppy fillings, I had to resort to the emergency egg mayonnaise sandwich today and I've been regretting it ever since. Simple things like knowing how to pick up a sandwich the right way are lost and I paid dearly for a moment of inattention this lunchtime. Goodness me but it goes a long way...

Attempting to stop her from trying to sit down on the chair arm because I could see that she would miss by a mile and fall resulted in a ringing slap to my head and a bite on my boob. Sigh. The bite didn't really hurt, dentures make it difficult to get any real force behind it, but it wasn't nice to be bitten regardless of where it was and I hope this violent phase will pass quickly.

The 90 second loop goes something like this:

Sits down.
(10 seconds pass)
Deep breath.
Gets up.
Walks across the room, touches several things.
Walks back.
Sits down.
(10 seconds pass)
Deep breath.
Gets up.
Walks to the front door, tries to open it several times.
Comes back into the room.
Sits down.

Repeat.

I promise you that it feels a bit like water torture after a while. Nothing seems to stop it happening - she  absolutely will not be distracted from doing it. Even as you are saying 'Mum, come and help me with this' she will reply 'Yes yes ok' but resolutely heads for the door. I thought at first that she wanted to go outside but when I open the front door she will peer out but doesn't want to go over the threshold.

Then there's the continual moving things around habit. It used to be just the cushions but now it is anything and everything. Having nipped to the loo after doing a lot of ironing for our upcoming holiday/respite visit, I wasn't best pleased to find all the underwear sitting in the washing up bowl. With the washing up.

Four sleeps until Friday and really looking forward to it, I'm ready for a proper break.

Friday 10 August 2012

End of the week catch up

Thankfully after the dreadful attempt to go to IKEA we had two day centre days to recover. I did get a phone call asking if I would bring her wheelchair though because they have such a difficult job getting her off the bus. We've had several occasions when getting her down the steps at the front is a teamwork job involving distraction, persuasion, bossiness (me) and lightning fast intervention between her hands and anything she can grip. Plus it isn't pleasant to see Ma in such distress being virtually bundled off albeit for the best of reasons and with the best of intentions.

With this in mind we've tried using the lift at the back but she hates standing on it and I can't say I blame her, I think I'd be a bit pooky too. So for all involved, although she doesn't really need it when she's at the centre she will now travel back in her wheelchair again.

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Then... just when you think things are nicely on an even keel... I went to pick up a computer desk for H from Argos this afternoon. The plan was to pick up the desk then pootle back via the gym for a swim. But because Argos was full of people buying barbeques, no lie, 14th in the queue and every single person in front of me bought one - the slightest sniff of fine weather and the nation goes crazy for petrol flavoured food and insect hell, go figure - I ditched the idea of a trip to the gym. Thank goodness. Ma had taken the undressing thing to the extreme and H was half hiding in her room not wishing to see the results and I can't blame her for that.

I'm just thankful that the window cleaner didn't call for his money until after I got home.

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Now that the carers are no longer coming in the evenings we've had a more relaxed attitude towards bedtime. The interesting thing is that keeping Ma up later makes absolutely no difference to how often she gets up again before settling. Some nights she is asleep in minutes, others she is up 10/12/20 times.



Updates as and when over the weekend.

Monday 6 August 2012

Optimism

Either I'm far more of an optimist than my grumpy, cynical exterior shows or I'm a complete idiot. And don't all rush to answer that.

I thought a trip to IKEA might be a good idea - God alone knows why. We need some bits and pieces and they have nice sweeping aisles so the plan was to take the wheelchair, go for lunch and then have a mooch around. The plan started to fall apart 500 yards down the road when Ma (in the back with the child locks on) kept trying to hand me her seat belt. This continued all the way down the M66 and on to the M60 where she got bored with that plan and started poking me in the neck with a pencil she found in the back. I have to say that this probably had something to do with the fact that when we came off at junction 8 IKEA appeared to have vapourised. At that point I realised we actually should've been coming off the M62 not the M60. So a bit of a detour.

We pulled up outside the front of the store and got a disabled space. Lovely. Got the wheelchair out and attempted to get Ma into it. This wasn't a hugely popular move so as I was trying to get the safety belt fastened I was also being belted from here to next week around the head. This was accompanied by shouts for help and pleading arms etc. The fact that it was quite sunny and pleasant meant that all the benches and tables outside the store were full of families having a drink or something to eat. So not in the least bit mortifying at all. We made it into the foyer where I could see that there was a bit of a queue for the lift. I was just about to ask H if she fancied having some lunch first when Ma kicked off again. Without breaking stride we did an about turn and headed straight back to the car. Extracting Ma from the wheelchair and getting her back into the car was a repeat performance in reverse - much to the astonishment of all the hot dog scoffers - and away we went. Both H and I were shaking with distress and Ma was oblivious, calling us both darling...

As a direct result of that I went for a swim.

This is the point where I tell you that I've joined a local gym and I wait until the collective sound of jaws being winched off the floor has ceased.

So I've joined the local gym. It's very pleasant and not too huge but it does have two lovely sparklingly clean swimming pools, toning tables and more yoga and pilates classes than you can eat. I'm not terribly interested in the weights bit but hope to get on to the cardio machines at some point. H is happy to Ma sit for an hour or so on non-centre days or during the evening so with luck we can get into a bit of a routine. Going for a swim, steam, hydro-jet thingy and relax on a lounger for 10 mins was really great and I definitely feel much less stressed out than I did when we got back from the journey to hell on a stick.

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The evening carers are no more. The final straw was finding Ma, bed and bedding soaking wet less than an hour after she'd gone to bed. This was because the two carers had managed to fold her night time pad in half which obviously wasn't then able to do its job properly. I was extremely unimpressed. So we are now only having help in the morning. In all honesty I probably could (and have on several occasions) deal with the mornings too but it's nice to not have to and it allows my joints to get going at a gentle stroll rather than a full gallop.

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Very pleased with several blips from the last week or so. This this and this spring to mind :)