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

Thursday 26 May 2011

Time Out

I'm away from here in the morning for a week and I suppose that it is inevitable that I am feeling guilty about feeling glad. Not about seeing himself (although clearly I am) but just to have a proper break which isn't three days, two of which are spent on the M5/M6.

We went to the garden centre today, we needed bird food and I needed a cook shop fix. Bird food, new feeder and funky garlic press later we had lunch in the cafe. Ma wasn't hungry but managed to force down chicken and leek pie, chips, carrots, broccoli and peas. I had a piece of quiche (left the pastry, not being particularly virtuous just vile pastry) and salad. It was very busy in the cafe, seemingly the place to lunch for the over 60s in Ramsbottom.

Several times while we were there I'd turn to look for Ma and she'd be standing somewhere not really looking at anything. I think it should be called 'dementia demeanor'. It's not the same as someone standing waiting for another person to pole up, it's a combination of a particular posture and disconnection from her surroundings. I don't think she really likes the garden centre much, at least not the garden-y bits as she's never ever been a gardener of any description, but she does like the chips.

Living with Wincey

I've mentioned Ma's weather obsession before. I think that part of this is because it is something safe to talk about, but there's a definite theme which is sun = good and everything else = bad.

Today we have had frequent and heavy showers - roughly three an hour, each lasting for about 10 minutes. The conversation goes something like this:

'It's looking  very nasty over there'
'Terrible rain'
'Oh good, it's brightening up now'
'Lovely sunshine'

'It's looking very nasty over there...'


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Tomorrow she goes to spend a week with Peter while I go and look after a post-operative Cornishman. Plus ca change... 

Tuesday 24 May 2011

Toddlerhood revisited

It occurs to me that looking after someone with dementia (at this stage anyway) has so many similarities with looking after a toddler:

She likes routine
Choosing her own clothes can produce some startling combinations (today it was flowery pj trousers, a top encrusted with bugle beads and sequins and a shawl. Later in the day she added hiking socks and a fleece)
Being disagreed with leads to a major tantrum
Supermarkets are an opportunity to wander off and cause panic
An afternoon nap is a necessity
Food is refused as a matter of course
She has a very limited attention span - often ending a phone call abruptly without saying goodbye
Absolutely no hesitation in removing clothing or flashing her underwear
Personal hygiene needs to be closely monitored

Clearly having had four toddlers I am supremely qualified to deal with this...

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Today was a middling sort of affair. Not as serene as some and not as traumatic as others. We've had tears and sulks - but enough about me. She wasn't able to turn the shower on or off today, or understand that if she watches ITV (*if*... snorts with laughter) there will be ad breaks and whatever she was watching will be back in a minute. Waving at the house next door is still a favourite even though they cannot see her unless they hang out of the upstairs window.

I've floated the idea of a visit to the hairdresser before the party and it was taken quite well. Tomorrow I will book her an appointment. Rearrange the following into a well known phrase or saying - iron hot strike the while is.

I've found a top for this upcoming party. It's a glorious colour, somewhere between deep blue and purple, very plain but with sheer full length sleeves. I think that as it is a summer party and the dress code is comfortable I'm considering white slim leg jeans, sparkly sandals and some statement silver adornments. I don't do big earrings but will consider a necklace or ring. Or both.

Monday 23 May 2011

I do like Mondays

Much much better day today.

Despite the odd wrinkle (a short discussion about how to button a coat correctly so that you don't look like a mad old lady - and no it wasn't me...) we've had a good day.

I had a trip into town and bought Fitflops. The old plantar fasciitis is a nightmare. Toe posts though :( I'm hoping that I can reinvent my 11 year old self who had blisters between her toes for about a week and then laughed in the face of rubber foot strapping for the rest of the summer.

I also bought a few Hello Kitty bits for Jem. Honestly and truly I should not be allowed within 50m of anything Hello Kitty related. She has a small pile of fabby things (and it is small, trust me) but yeesh! I swear the entire Japanese nation see me coming. However... Hello?!? Magnetic HK earrings?? SO cool :D

Ma has eaten really well today - porridge, fish/new pots/sprouts (current fave) and then sliced peaches, ice cream and bread and butter for tea. She's now having a glass of wine and watching Corrie.

And talking of which - Anna and Owen?? Do we think??

Sunday 22 May 2011

Sunday

Well, we were up quite early as I thought we would be but not unbearably so. The only downside was Ma sitting in her coat for quite a while waiting to leave for church, after she has also gone looking for money for the collection. So there she sat all buttoned up and clutching a 5p for about an hour.

Unfortunately she did have a fall in church this morning, but thankfully didn't hurt herself too badly. It happened on the way back from the altar because she no longer waits for me to finish taking communion before going off like a flash. As she becomes ever more unsteady on her feet I suppose it was only a matter of time before something like this happened. The jury is out on whether is was a trip over a rumpled carpet (her explanation) or her ricocheting off the radiator (what I saw). At least there was no need for stitches or hospitals this time - and plenty of people to help pick her up! Of course she says that something like this hasn't happened to her for years...

For a while after church she was in unkind mode and said some things which are best not repeated but did get to me a little. I know I have to learn to let it go but goodness me it is so difficult to do. She will have forgotten what she said by the end of the day and I guess I will have to learn how to do likewise.

I'm trying a different tack with the food issue this week and seeing if eating a 'main meal' at lunchtime and something light in the evening will suit her better. So as I write she's just eaten a modest amount of pie, chips and peas and is fast asleep in front of Colombo. Perhaps just some tinned fruit and bread and butter later.

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I think I might treat myself to a pedicure this week. I'm useless at doing one myself but do love the results so think it is money well spent. Maybe even have my nails done too *gasp* #livingontheedge

Only other thing on the agenda is looking for self catering for two in France in early September. My biggest problem is deciding which bit of France...

Saturday 21 May 2011

And.... back in the room

So Ma has had three lovely days with Jo and Ian. She's eaten everything that was put in front of her, went to bed at about 9 o'clock and slept like a log.

She tells me that Jo has told her she shouldn't take her tablets on an empty stomach. (insert hair pulling out smiley here) So naturally she refused to eat any tea this evening saying she'd had a chocolate biscuit. Well she had. At three o'clock. We had a short and somewhat firm discussion about this and then she ate a small amount of food before going to bed at 6:30. That'll be an early start tomorrow then. And I'm buggered if I'm roasting a chicken just for me.

Thursday 19 May 2011

Oops

I embarrassed my daughter dreadfully by starting a blog for her art so now she refuses to share anything with me....

However, if you are interested in seeing some of her stuff she does post art work on here: http://harrie5.deviantart.com/

Most of it is drawn with a graphics tablet or mouse but there are some scanned images of other things she has drawn using more traditional materials and also a few animations.

I am never anything less than awed by her ability and so very proud of her.

But don't tell her I've posted this, she'll never forgive me!

Wednesday 18 May 2011

Reflections

Things that shouldn't matter but do tend to frustrate me and how I'm dealing with it.

Complete refusal to go to the hairdresser. My mother has gone to the hairdresser every single week for my entire life so seeing her with unkempt hair is unsettling. She also insists on wearing a bizarre assortment of ancient hair clips/slides/bands in unusual ways. It's a minefield trying to ensure she leaves the house looking relatively ok without annoying her. I've started buying new hair bits and bobs and dug out my hairdressing scissors in the hope that she'll let me 'trim off the ends'. She's flatly refused so far but there's a big family party coming up so I live in hope.

Rinsing dishes under a running tap and believing they are clean. Everything goes in the dishwasher now, that way I'm not seen to be re-doing the washing up all the time.

Still not managed to get her to have a look at a day centre. Every time we plan it she finds an excuse not to go. Perhaps I should arrange to visit without saying anything and we'll drop in 'unexpectedly' when we're off to Tesco or simlar.

Ten years of perfectly behaved dog undone in two months. I fear the only way to deal with this one is to be completely firm on how the dog is expected to behave (and everytime I turn my back she's being encouraged up onto the chair and fed biscuits arrggghh)

I can't join a creative writing course until September. There are online ones but part of the reason for doing it is to get out for a few hours. I'll just have to keep plugging away in here for now then...

Tuesday 17 May 2011

You have to laugh

Two and a half weeks of asking me when she's going to Jo and Ian's.

This morning...

'When are you leaving?'

'Not until you've gone mum'

'Why? Where am I going?'



I'm away from here until the weekend. Enjoy the rest of your week.

Monday 16 May 2011

Answers on a Postcard (II)

'I'll have my ear tips now please'

Even I struggled with this one.

Monday morning Aarrgghs

Yesterday I invited Ma's closest friends round for Sunday lunch. They are some of my favourite people and have been so good to Ma over the last five months. Plus we 'owe' them several meals and seeing as the Aga is working again I thought it was the perfect opportunity to test it out!

I did slow roast shoulder of lamb with roast potatoes, new potatoes, cabbage, carrot and turnip, cauli, blue cheesy leeks, yorkshire puddings and gravy with homemade mint sauce. For pudding I made a chocolate mousse and served it with amaretti biscuits. It was a very pleasant afternoon, we chatted about the old days when we children were small and the parents were party animals :)

Simon left at about 5, Mavis and Vic left at about half five and Ma went to bed at 7 (uneasy look...)

Ma woke me at 05:30 fully dressed wanting to know where everyone was. I got up and made her some toast and tea, gave her  her tablets and started packing her suitcase for tomorrow. It is now 09:10 and she has been crying for a solid two hours saying that I ignored her all yesterday and spoke only to Mavis and that I have been utterly unfair to her.  She is now huddled in the bedroom in a chair refusing to speak to me or sit near the fire in the living room.

I have to go out in half an hour. I'm now worried about leaving her, but also feeling highly aggrieved. These two emotions do not sit easily together...

Friday 13 May 2011

Bah!

Yesterday's post has completely disappeared. Annoyed.

Edit: And now it has magically reappeared!

Thursday 12 May 2011

A better day

Much better day today, no food arguments at all and everything offered or suggested has been eaten and enjoyed. I think she's completely lost the ability to turn on the shower now as this will be the fourth day on the trot that she's told me it's broken. She's still very confused about when she's going to stay with Jo and Ian (and I'm going to Devon) so asks roughly every hour or so to make sure she has enough pills before I leave. In future I will definitely keep any arrangements to myself until the last minute.

The Aga has been fixed (hurrah!) and the gas hob disabled so we won't get a repeat of yesterday where I found Ma doing a poached egg with all four gas rings going but only one of them lit. Scary.

Other than that, a quiet day for both of us. I'm feeling mildly blue but that is probably due to the weather, my hormones or being on the wagon.

Or all of the above. 

Wednesday 11 May 2011

Am I wrong?

Ma has a history of falling. She spent several days in hospital recently with a stitched up eyebrow because of this and has fallen several times since.

She is due to go out to a Ladies' Evening tonight but is completely refusing to eat anything beforehand. She's eaten one poached egg (another scary story) and toast today so I made her a tiny sandwich - two slices of Hovis from the smallest loaf with the crusts cut off, so four inch square pieces. She says she doesn't want it, she's eaten plenty today.

I feel I should cancel her going out. Empty stomach + sherry + history of falling.  Not to mention taking her tablets on an empty stomach later.

I've also just remembered that last time she went she ended up with a monster egg on her head from 'bumping into something'.

So am I wrong?

Monday 9 May 2011

We disagree

We've had a bit of a falling out about eating. She really hasn't eaten much today but thinks she has so refused to eat anything for tea. I maintain that she must eat a little something because she shouldn't take her meds on an empty stomach.

Because I disagreed with her she got annoyed and went off to sit in the lounge with an old photo of my dad. Where she cried a lot and told him how horrible I was. After a while I explained again that she mustn't take her tablets on an empty stomach so she said she would make herself some cheese on toast.

I thought it wise to 'empty the dishwasher' while she was in the kitchen.  I found the bread, spread and cheese for her and she put a slice in the toaster. I made her a cup of tea and heard the toaster go down again but didn't think anything of it until the smoke started pouring out. As I'm fishing out the molten sludge that had been thick slices of cheddar she'd put into the toaster to melt I turn round and catch her spooning grapefruit and orange segments onto the toast because the dish happened to be on the side at the time.

Question is do I let her do stuff under close supervision and deal with the fact that she gets so defensive and aggressive with me when I do but it could possibly help to retain some skills for a little longer. Or for safety's sake continue to do it all and not let her near. My worry is that I've noticed food disappearing and think she may be getting up in the night for a snack. I'm now going to really think about unplugging things before bed otherwise I'll be in contant fear of burning down with the house in the early hours.


Grapefruit, Flora and melted cheese.... ick.

Sunday 8 May 2011

Sunday

I need to learn to keep arrangements to myself until the last possible moment.

We had planned a trip to see Auntie Peg today which meant Ma was up at half five getting ready. And then asked me every five minutes if it was time to leave until we did in fact leave. At 11:30.

Lovely lovely lunch with Auntie Peg and then saw my cousin Sue for an hour or so. Serious catching up time.

Today's observation:

When we are driving along she obsesses about road signs. Reading off every single road number and destination. I've begun to realise that this isn't control freakery (well not entirely! Old habits and all that...) but more about trying to understand where she is because she no longer recognises routes she has driven for 44 years. Not that it really helps, sadly.  This realisation has stopped me getting wound up to the point of madness at being told how to get to places I have also known for 44 years.

I'm not saying it won't irritate me, just that I can let it go a bit.

Small but important realisation.

Which way?

Directions to my Aunt's house via Planet Audrey:

We go along, then over the ring and past the naughty boys place...

Saturday 7 May 2011

Things I must not get annoyed about

1. Listening to a continual conversation with whatever tv programme is on - not with me, with the tv

2. Finding absolutely anything which involves small children or animals cute and amusing and having to point it out

3. Watching 89% of any tv programme. How can you watch Lewis for an hour and fifty minutes and then declare that you are off to bed?

4. Sticking her head in the way when I'm driving and checking left - I was taught that the driver decides when it is ok to pull out (this really really gets to me)

5. Eating half or less of anything I put in front of her.
 
Clearly I'm no saint. I have to work on my tolerance levels.

Yummm....

The fridge freezer died overnight. New one arrives on Monday so fridge contents are being stored in a variety of cool bags. Just spent 10 minutes looking for the salad.

'Any idea where I put the salad mum?'

'I put it in the other thing in the garage'

That would be the freezer.

Chicken tikka and baked beans it is then.

Friday 6 May 2011

Dementia 101

If you were to bump into the pair of us having lunch at the garden centre or wandering around Tesco you'd probably think that Ma occasionally struggles to remember things but can hold a conversation fairly well. However, holding a conversation isn't all that challenging at this stage, it's the other things which show quite clearly how she cannot be left to fend for herself.

All of the following have happened over the last few weeks, sometimes more than once or twice. The concern is always about safety but also about helping her to be as independent as possible.

Unable to:

Turn on the shower
Dial a telephone
Use the TV remote
Use the microwave or oven
Turn off the gas on the hob
Use the vacuum cleaner
Wash up (ugh.. don't get me started)

Other things....

She dressed herself perfectly well but put everything on inside-out
Couldn't work out how to get into the doctor's surgery despite being next to the door
Tries to open the car door using the wing mirror or the electric window buttons
Has no concept of time - made an appt at the dentist this morning for 14:15 She was ready and waiting (coat on, handbag clutched) from 10:00 and became ever more annoyed when I had to tell her over and over that it was still several hours until we needed to leave.

I have to be as level and unruffled as possible. Those who know me well will be chuckling at this point - I have been known very occasionally to be a slightly less than 'level' so a steep learning curve for me.

Thursday 5 May 2011

Rollercoaster ride

Bit of a white knuckle ride today.

It started with the usual cup of tea but the not so usual naked body which was a bit of a shock when she threw the bedclothes back.  She'd got too hot in the night and removed her pj's. This is fine but I could do with a bit of warning!

We've arranged to see my fabulous Auntie Peg on Sunday (dad's cousin's widow) which cheered Ma up no end and we had a lovely chat about where we would go for lunch etc. Obviously this has thrown up the constant questioning about when we are going but that's ok, at least she's looking forward to it.

After lunch she suddenly went into a steep decline. I know this will sound a bit daft but I think it was because the lovely people next door weren't at the window to wave at her. There were lots and lots of tears and walking around stroking things (photo/pillow/wellingtons[?]) but things are slowly improving now. The thing I find hardest to take is the unfettered unkindness that appears at times like this, it's a hard thing to take without reacting.

She's refusing to eat but I'm afraid she's only having that glass of wine on the understanding that she has to have something! I'm not forcing her to eat a Tudor banquet, just some cheese and biscuits or a bit of soup - I do understand that her appetite is crap, especially after such a draining afternoon.

Footnote: I've bought a mattress topper. It is fab. However, the bed is fairly high to start with and now with another 15cm on top I feel a bit like the Princess and the Pea. Just as long as I don't fall off... 

Wednesday 4 May 2011

Strange Day

A bit of an odd day today. Ma was clearly on a mission a couple of times but lost focus halfway through.

Mission 1: Walk up (alone) to see her BFF Mavis for a cup of tea. Three different neighbours were graced with her presence but not Mavis. Came back in time for:

Mission 2: Organise flowers to go on Dad's headstone. We went to the garden centre and ended up buying silk flowers. Is this unspeakably naff? Ma was definitely happier with the silk versions rather than something which appears to be green now and is too impatient to wait for the flowers. I figure that the only thing that really matters is what she wants to do.

From the moment she got up 'we' were planning a trip to the garden centre to get the flowers. Once we had them I suggested going up to the church but was rebuffed. It will do another time apparently.

Lunch at the garden centre was a hit. She chose chicken and ham pie (with chips! Glenys will love that :D) and ate the best part of it. Obviously she wasn't terribly hungry this evening so we agreed on tinned peaches and carnation milk for her. Takes me back to Saturday teas and a trolley laden with sandwiches, cakes, tinned fruit, old fashioned salad and a huge pot of tea. In front of Dr Who.

Happy days.

Things I say at least ten times a day (this week)

I don't drink coffee

He is a she (dog)

Yes it was a lovely wedding

I don't drink coffee

It's just a cloud

She's got to do another year at school

A week on Tuesday (staying with friends)

I don't watch Emmerdale

No thanks, I don't drink coffee

Afternoon Tea

A friend has called round so I've put together a tea tray for them.

'Shall I pour Mum?'

'No it's ok'

Perhaps I should replace the milk seeing as she's just offered Barbara the milk jug topped up with tea...

Tuesday 3 May 2011

Back in the room

Hello again :)

Collected Ma from Peter's this morning and got back around lunchtime via a trip to Tesco. The entire journey was taken up with commenting on the weather, everytime the sun went in it was 'looking horrible' and then as it came out 'looking brighter'. As the clouds were tanking along at a brisk speed this became quite tiresome very quickly.

The only other topic of interest was the wedding and Ma's main recollection is of them 'kissing all the time'. I think we were watching two different weddings. She is currently happily ensconced in the Hello! wedding special I've just bought for her so I'll just nip off and get some laundry on the go.

Back later...