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

Thursday 26 July 2012

Decisions decisions

I'm seriously considering cancelling the evening care. There are a number of reasons for this. When Ma first came out of hospital her mobility was very very poor whereas now she is walks happily around the house without a frame and we only need the wheelchair when we go out. I know the company have sickness problems at the moment but having to interrupt her meal which she will then not eat because we've lost any momentum so that she can be made ready for bed at half past five or hanging around until 10pm trying to keep her awake because that last thing I want to do is get her revved up at that time of night after a three hour doze on the sofa does tend to irritate. With that point in mind I have been the one to get her ready for bed on a number of occasions recently and do not find it particularly arduous so am beginning to resent the constant 'she really needs two carers at night' comments. My reasoning is that I can manage the evening shift thus saving money for when we will really really need at a later date.

Later...

As the comment below says continuity is important and a very relevant point in favour of discontinuing the evening calls. On reflection I think this is why mornings are rarely a problem because we (usually) only see two girls, Kay for 12 days straight then Lisa on Kay's weekend off. In the evenings we have a random selection, often two carers where one will fill in the 'book' while the other one does the job but sometimes just one. It's a pick 'n' mix group of around 10 different carers and her bedtimes can vary by up to two hours.

The girl who came tonight is one of the ones who doesn't quite 'get' the best way to deal with Ma. So she's not settling at all. She's been up eight times in an hour already and I've just been punched in the face. Again. Between her and the cat, who is forever flipping my glasses off, it is a miracle I can see anything at all.

Off to blip something. No idea what though, inspiration is a bit lacking tonight.


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Managed to go for a nice walk with Lily yesterday.

Sunday 22 July 2012

Weekend Musings

It's interesting the way behaviours I thought had been and gone come back again. It has been months since Ma haunted the front door, trying the handle every 30 seconds or so, but now she is back to doing it again. I can ignore it for so long (about an hour or so) and then suddenly it's just so irritating and I go through the whole 'It's locked Ma, you can't open it' and she says 'Yes that's right.' and then tries to open it. This is repeated a number of times until the futility of it bludgeons me over the head and I return to ignoring mode. Albeit with slightly flatter teeth.

A current obsession is removing food from her plate and putting it somewhere else. Generally on the soft furnishings, but it can be anywhere. Vigilance is paramount here because had I missed the egg sandwich she put in a coat pocket in the cupboard we could have been searching for the source of the smell for weeks. I'm baffled as to how she decided that was where to put it but she clearly wanted to go there and in fact it was only her dogged determination that made me realise she was up to something.

As she has been re-referred back to the dietician I am battling with the whole feeding thing again and this is linked to the above. As I mentioned a while back, when she is at the day centre she uses cutlery and feeds herself so I have stepped back from assisting her and encourage her to do the same at home. The downside to this is that she eats far less than she would if I was helping and tends to move food around the house/feed the dog etc if I'm not closely monitoring her and that has the inevitable result of some weight loss. Everything I feed her is calorie-loaded as much as possible - Jersey milk on cereal plus cream, I put butter, cream and/or cheese in as many things as I can and keep up a steady drip feed of soft sweet things such as pieces of banana, breakfast bars, cakes etc. The only time she flatly refuses is when I offer food which I've added Complan to. And frankly I can't say I blame her, it's foul. At the same time if she refuses to eat there's not a great deal I can do about it. Yesterday was a refusal day, hopefully today will be a good one.

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Months ago I put my name down for a day retreat at Mirfield with the Vicar and others from church next Saturday but I am going to have to cancel. I hadn't realised that Peter would be in Spain and there isn't really anyone else I would ask to be with Ma all day, it's too much for anyone else to deal with. Hugh has offered to take me on a weekday when she's at the day centre which would be great, so we'll see how things go.

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Some nice blips recently. I think we might have a jolly jaunt in the car today (Ma in the back with the child locks on) and go looking for something nice to photograph. It'll make a change from things in the garden :)

Wednesday 18 July 2012

Success!

The Burglar Bill night time attire is working really well, since we started on this regime we haven't had a single 'incident'. Not had much success finding a suitable daytime version yet though. I may have to dig out the sewing machine after all.

Harriet had a lovely birthday weekend and Ma had a few days in respite. When we arrived she was eager to get inside the door and once I'd unpacked her clothes in her room I took her to the lounge where she sat very happily saying hello and chatting away, in fact chatting away so well she didn't acknowledge me leaving. What a difference to a year ago. She did come home with half her clothes missing (despite me labelling everything, including her socks and knickers) and half of someone else's clothes instead. Not the first time this has happened and I'm seriously considering buying her a 'respite' wardrobe of inexpensive clothes so that I don't get annoyed when things go missing. Mind you she did come home from the centre yesterday wearing a pair of men's trousers. Thankfully she didn't bring the owner too.

The home phoned me on Saturday night to say that as she had lost weight since her last visit they were referring her to the dietician. The fact that she's just been discharged from the same doesn't matter apparently. Nor does saying that she's been in hospital and had four weeks on an assessment bed since her last visit. So we will go round the houses again. I'm keeping a food diary this time because I can't see how I can get much more food inside her - especially if she refuses to eat it, and the stuff she refuses to eat is generally anything I've put Complan in as per the dietician's instructions. And can someone tell me what to do with four boxes of banana flavour? Where the hell do I put that? She's not keen on custard/mousse/cheesecake type things. Banana flavoured mashed potato isn't going to work.

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It's Ma's 82nd birthday today so we are just about to set off for the day centre laden with cookies, chocolate roll, millionaire's shortbread, mini doughnuts and brownies (for 50). I hope they all enjoy it :)

'Happy Birthday Mum!!'

'Yes probably.'

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I reached my 200th Blip without a gap on Sunday. Quite an achievement! Roy is proving to be a popular subject in and amongst everything else :)

Wednesday 11 July 2012

Fun and Games

The biggest issue I've had to deal with over recent weeks has been one of 'containment', particularly first thing in the morning, and four times in the last 6 days is apparently the tipping point. Without being overly coy or going into graphic detail it has meant washing everything in sight, starting with Ma and working outwards via the bed, bedding, soft furnishings, walls, floor etc. Ma gets distressed when she is put in the shower but unfortunately it is the only way to deal with the situation. Or it was... I think I may have come up with a solution.

It occurred to me that if I could remove access (as it were) then 90% of the problem would be sorted. So a bit of brainstorming later and she now goes to bed in long cycling shorts to keep the pad and net knickers arrangement snugly in place and then over the top she wears an all-in-one pyjama effort. These are not dissimilar to old fashioned long johns, the twist is that I put them on backwards so that the fastenings are out of reach. We are now on day three of this new regime and so far it's been 100% successful. One bonus I hadn't anticipated is that she appears to be much warmer in bed and the knock on effect of that has been that she sleeps more soundly and hasn't been up wandering about quite so much at 0 dark hundred hours.

Now I need to find some way of replicating this for daytime to stop the disrobing issue. Plain onesies without a pattern would do the trick but I'm not having much luck finding any small enough. If you happen to see any please let me know - the ones I have bought are sized for 13 year olds.

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Phoned the surgery this morning because Ma had a skin tear on her leg at some point overnight. The appointment was for 10.30 which was fine, I would take her on to day care afterwards and rang them to say she would be late otherwise her lunch would be in danger of being cancelled. I thought it would be a quick in and out then off to the day centre with barely a blip. Silly moi.

We did eventually get in to see the GP but only after a 50 minute wait because she had 3 appointments run over. Ma was teasey and shouty after 15 minutes so you can imagine how stressy it was. Not surprised that GP was running over though, I went in just wanting to know if it should be dressing on or off, if antibiotics on stand by should be used or not and when to call if things deteriorated. I'm not lacking in intelligence but some of the situations I am now dealing with are new territory so I needed a quick precis on what to do coupled with reassurance that what I am already doing is fine. The GP gave me a full 15 minute run down on how the wound had probably happened, how it would likely heal, what to put on it etc. I have to say that in some ways she deserves a gold star, talking about something so minor for 15 minutes is a skill. She really needs to edit.

Thinking about the way the skin tear happened, I suspect it was the onesie wot did it. They all have a ribbed cuff at the bottom of the leg which is joined to the main body of the garment with some fairly robust stitching. So today I have been removing said cuffs off all the onesies and hemming up the softer jersey cotton. Hopefully this will stop any further injury. I really should have anticipated that though. Sigh.

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Thistle blip today


Friday 6 July 2012

This week

Well, the doll has arrived and has been a bit of a non-event although it's early days. She can be persuaded to hold it for a while but then puts it down again, I'm hoping it will become more accepted over the next few weeks. Thank goodness it isn't a real baby though. So far it's been stuffed down the back of the sofa, slapped face first onto the table and carried by the leg. Poor thing. Mood-wise we've had a reasonably stable week with the odd blip here and there as usual, I think the meds are better this way.

H is now firmly ensconced here having been for a college interview on Monday and been offered a place on the strength of her art work alone. Predicted grades and her personal statement were brushed aside. So so proud of her, roll on September.

We have been hampered by the weather this week so not been out and about too much although Mavis (God love her) stepped into the breach on Monday when we had to go for the interview. The thought of taking Ma in her wheelchair to that was daunting to say the least and would have been very unfair on H. Day centre Tues and Weds and I baked for the Dementia Café on Tuesday. That was quite a feat due to the Aga not working so had to use the table top oven. Cue a mad couple of hours of swapping tins in and out and using the desk fan to cool things down quickly so that the icing could go on. Thankfully the Aga is now lit again so next time it shouldn't be such a trial.

The rest of this week has been taken up with trying to get my EMA finished for submission to the OU. It's not an easy task to concentrate with Ma disrobing at every turn, needing cleaning up. talking to me non-stop, standing very very close and/or constantly moving things about. However, I am about 75% of the way there now, just have to choose my 10 photos (whittled it down to about 14 now) and finish off the written bit. I've stuck the photos in a set on Flickr and should anyone would like to comment, offer feedback or help me choose I'd be most grateful.

As I type the washer is on, the bed re-made, it is hammering down with rain, Ma has had a shower and her breakfast and is now half dozing half talking to her friends, H is drawing and I am about to do the hoovering marathon. I hope it stays this peaceful :)

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I liked yesterday's blip along with a few others recently. Looking at the weather, today's might be a challenge...