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

Thursday, 24 May 2012

Ready for a break

A week today I'm disappearing for a few days and my brother is stepping into the breach, it's fair to say that I am ready for some time off.

Sunday was a lovely day, with Jon, Fran and the girls. Ma enjoyed it too I think although she will insist on referring to both of the girls as 'he', luckily they are both young enough not to care.

Monday we had a visit from the dietician. She is pleased that Ma has put on weight and has decided to close her file. This means that we are once again at the whim of the GP regarding the prescription of Fresubin drinks and we all know what that means don't we? It beggars belief really as those drinks have been instumental in getting her weight up and keeping it there.

Tuesday I took Ma to day centre, pootled round a bit then took Mavis to the doctors. While she was in the surgery I wandered down the old railway line which is now a cycle/footpath and just across from the surgery where I picked some wild flowers to photograph. Dropped Mave off back home and before I knew it Ma was outside in the day centre bus refusing to get off. She didn't want much of her tea and was pleased to get to bed when the carer arrived.

Wednesday I took Ma to the day centre and had a cuppa with everyone as they were highlighting dementia awareness week. I sat next to Ma in the lovely sunny main room where there was a baby doll in a growbag - I know it's not called a growbag, but that's what I always called them and can't remember the proper name... one of those stretchy towelling suits with feet in - on the table. Ma immediately picked it up and sat it on her knee. This reminded me that I was going to get one at some point but have forgotten to do so (if anyone has one their child no longer needs I'd be grateful).  One of the staff told me that the doll is very popular with a lot of the ladies and sometimes there's an unseemly scuffle to claim ownership which is then jealously guarded.

Home via Morrisons for some photo frames to put some of my photos in as a raffle prize for the sponsored walk/Dementia Café event on Saturday. So some poor buggers who get one of the last three tickets drawn will have to pick one of my photos. Eh well, life's a bitch. Oooh unless they put all of them together as one prize... That would be really cruel!

So after farting about with photo paper and the printer, swearing appallingly but with deeply satisfying and vicious alliteration and failing to print anything I gave up and ordered prints online via Jessops. Actually a very good and reasonably priced service. They should arrive tomorrow.

I then unwrapped a photo frame and noticed it was damaged. Arse. Two pics for the raffle then. Or in fact, after inspection it appeared that all the frames were broken. Sigh. Back to Morrisons it is then.

After that relaxing half hour I went to collect Mavis and take her to a tea dance organised for Dementia Awareness week and involving some of the Café crew and patrons. We had a really lovely time watching all the dancing (and a fair bit of showboating, highly entertaining), discussing Strictly and scoffing cake.

Today we had a visit from both the physio team and the district nurse. Once that was done and dusted we went to Morrisons to return the photo frames. Yesterday it was a breeze in and out. Today it was a nightmare of monstrous proportions involving Ma, who wouldn't get in/out of the car or wheelchair and then once inside Morrisons via the underground car park and lift having her calling 'Help!! Please!?!' and grabbing onto nearly everyone we passed. Many of whom were understandably less than pleased because despite being the size of a pea, Ma has a grip like you would not believe. Interestingly the service till lady told me that the frames I paid £4 each for yesterday are now reduced to 48p. I wonder why.

Call me a glutton for punishment but as we were out already and I needed replacement photo frames, we went to Matalan on the way back. I know I know. Perhaps seeing Ma banging on the car window when I walked six feet away to get a ticket should've been a bit of an indicator. Then Matalan (like Primark) has one of those winding queue things to the till lined with danglies such as socks, umbrellas, mugs, hankies... It is fair to say that our trip out this afternoon was utter hell on a stick.

I can't honestly say that it improved a great deal once we were home but she is now in bed and appears to be settled so let's hope she stays that way. She must be exhausted, I know I am.


Blip catch up here if you're interested.

Saturday, 19 May 2012

Quite a week

Tuesday was a good day - day centre for Ma, Avengers Assemble with the fabulous Mandi for me. This was after a review meeting at the day centre where we talked about how Ma was getting on etc. They say that she has settled in well and I agreed that she seemed a lot happier than she had at Grundy. I was shocked to hear that although she does need a lot of encouragement and reminding, she will feed herself when she is there. The monkey. So from Tuesday tea time onwards I've refused to spoon feed her and eventually she gets on with it (albeit after sitting there like a baby bird with her mouth open at first). Isn't that great?

I've also decided to drive her to the day centre. This is partly because I will get roughly an hour longer during the day but also because it makes me get out of the house instead of sogging about wasting the day away. So I drove her to the centre on Weds morning and was home via Tesco by half ten when I would normally just be handing her onto the bus. She wasn't in the best mood when she came home so refused to eat anything much and it took some persuading to get her to stay in bed.

Thursday was an extremely difficult day. Ma was a level 14 on the Skipton Scale, very very restless and agitated, tearful and aggressive. This manifested itself by her constantly removing all her clothes, as fast as I got her re-dressed and turned round she was down to her pants again. She has since had a bit of an upset tummy so I suspect that that was probably the cause of the behaviour. She also broke the camera which sent me into high distress mode but thankfully I had arranged insurance for it so once I'd remembered that (only took me an hour *eyeroll*) I was a lot calmer about the whole thing. The insurance company couldn't have been more helpful - Square Trade via Amazon, highly recommended for any hi tech stuff.

Friday was spent dealing with said tummy upset. Plus the excitement of the 16 week bulk delivery from the continence service. I really need to get a grip. Or some time off.

Today we drove to Southport to a craft fair organised by a cousin-in-law, raising funds for the local hospice. The fair was lovely and it was so nice to see Sascha and her mum but the drive in both directions was challenging to say the least. I don't think I will be attempting that length of journey again. Although the shouting down the air vent was mildly amusing.The carer said tonight that if she's been like that all day it must have been 'full on'. That might explain the tension headache and the flat teeth I guess.

People for lunch tomorrow which will be fabulous, I miss cooking properly. I often feel aggrieved on Sundays because everyone seems to be having a roast dinner somewhere and I can't see the point in doing it just for me. So a roast chook for us and a proper pudding of some description.


Some ok blips this week.

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.


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.

Tuesday, 8 May 2012

A new week

We had a quiet weekend - no phonecalls, no visitors. The only thing of note was the car journey I blogged about the other day. And watching the Sound of Music for the eleventeenth time this year.

There's a definite shift away from the institutionalised behaviour she was showing after being in respite. I've noticed a return of some of the old behaviours: shouting at the tv, constantly wanting to go 'somewhere' and unfortunately, some pinching and aggression. All of that I can cope with but the return of the night time wandering isn't so welcome. Not least because she can't really walk unaided but obviously thinks she can.

However, one of the most difficult things is getting her to swallow the night time tablet. Often just getting it into her mouth feels like a victory and I feel myself getting worked up about it in the hour or so before. She can then eat an entire sandwich and drink a whole cup of tea before spitting it out again. She generally ends up getting it down by default due to crunching it up and it must taste utterly foul, it's no wonder it is such a distressing thing for her. I got a punch in the eye tonight for my troubles.

On a positive note, there's an absolutely HUGE improvement in the amount she is eating. Breakfast, lunch and tea every day with a biscuit or cake and a cuppa a couple of times during the day. One trick that seems to be working quite well is having a small bowl on the table next to her chair with some small chocolates in it (Whispa Bites, chocolate buttons, that sort of thing). She'll have a few during the day almost without thinking about it.


I've realised that my attack of the glums is in some part related to the fact that H finishes school in a couple of weeks time. This is the end of an era and makes me feel really emotional despite being so delighted that she will be here to live with me very soon.

Daft really.

Saturday, 5 May 2012

It's a lovely day...

... I know, let's go for a drive.

Why don't we go this way and see what we can find?

Let go of your seatbelt Ma, that's not safe. *returns 7 feet of belt to the inertia reel*

If you pull your trousers up like that your legs will get cold


Let go of your seatbelt Ma...

[looking right before turning] YOU'RE ONCE, TWICE, THREE TI... Bloody hell! *turns radio off* Please don't touch the buttons Ma.

Your legs will get cold

Let go of your seatbelt, it's not safe


I think if we go right here we'll find CRASH! Ok please don't open the glove compartment

If you do that you'll break the zip and let go of your seatbelt please

We were only out for an hour and I'm shattered. I think a chimpanzee in the front seat would be less distracting.


A whole week of blips to flip back though. Lucky you.

Thursday, 3 May 2012

I'm not waving, I'm drowning

I know it's been just too long since the last blog. There are no excuses other than it's just been a week of overwhelming ennui coupled with Ma being a bit of a handful. Not the best really.

On Monday morning I went in to find Ma on the floor. Thankfully she wasn't injured at all and from the way she was lying it looked as though she'd got out of bed and then fallen, rather than having fallen out of bed. She wasn't cold, clammy or in any pain so once she was up and wrapped in a blanket with a hot water bottle in place she was fine, she ate some breakfast and then dozed. The fall clearly had an effect which made her quiet and sleepy all day.

Tuesday was day centre day no 1. She was quite grumpy when she came home and didn't like me at all. I gave her a cup of tea to go with her sandwiches but unfortunately most of it went over me and the chair and she wiped off the few drops on her face with an egg sandwich. Makes a change from a slipper.

Wednesday was day centre day no 2. When she came home she was so pleased to see me she was practically in tears. She refused to stand up for the carers when they came to do the night time stuff, lots of swearing, shouting and cursing from her so perhaps there was some physical trauma from her fall the day before.

.... 20 minutes later:

Bedroom door opens:

Hello?? Are you there??

She'd walked from the bed to the door... (about 10/12 steps)

Today. Foolishly I stated somewhere that Ma appeared to be ok, quiet, but ok. Oh how God laughs when you say these things. From about middy Ma has been on a mission to 'go somewhere'. This involves getting out of the chair (without any trouble) and striding off in a pushing sort of way with the nattily faux leather-topped nest of tables. Clearly using the walking frame would be just too sensible. I have been swapping out the said tables with her walking frame at every opportunity which really really annoyed the pants off her. Apparently I am 'nasty nasty nasty' for doing this. Eh well.

Just before Peter arrived we had a moment where she did some of the old stuff (spitting etc.) but once he was here it was fluffiness all round. We had a few hours together which was nice - he is a big twitcher and encourages me to enjoy birds too, particularly with my camera. So I bored him rigid with just the first thousand or so of my photos.

Unfortunately she doesn't seem to want to go to bed tonight, she's been up seven times already. There's no reason that I can see, Pete and I did wonder if she could hear us talking but he left two hours ago but she's been up more times since he left than she has in the last couple of weeks.

I know this reads slightly flat. It is really hard to post when you are in a bit of a slump. Apologies.