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

Tuesday, 27 December 2011

Boxing Day and beyond

Yesterday we had a slow start, I was a little creaky after all the work on Christmas day so a quiet morning seemed essential.

We went up to have lunch with M&V at 1pm and of course they made us very welcome. We had a lovely buffet lunch and lots of laughter but Ma ate almost nothing and had had enough by 3.15pm so we headed back before we got to the pudding *sad face*. Ma went for a rest and didn't get up until about 9.30pm when she had a bowl of porridge and her tablets and went back to bed where she slept until 6ish. So clearly, although she ate almost nothing and didn't really seem to know what was going on, the last two days still tired her out.

Today I have been doing laundry and getting ready to set off for Cornwall. Jane came to see us which was great because I could get on with things without having to stop every two minutes. Jane also brought a lovely scented candle in a glass for Ma for Christmas which she duly admired thoroughly before trying to drink it...

I can't tell you how much I am looking forward to a week off even though it will take me several days to recover from the driving. I'm collecting the younger two of my lovely boys on the way down and I'm very excited about spending some time with them in Cornwall. Hopefully Peter will be here early doors tomorrow so that I can set off at a reasonable time - they were due to arrive back at the airport at 3pm today so am hoping for a phone call soon to let me know what is happening.

He is taking Ma to the respite home on Saturday and I will be collecting her next Thursday when normal service on here will resume. I am fairly sure I'll be posting the odd photo between now and then but I'd like to wish everyone who comes in here a wonderful New Year and hope it brings good things to us all.

Monday, 26 December 2011

Christmas Day

In the end I didn't get up until 6, so too late for a slow roasting of the turkey and too early for fast. Being obsessively compulsive about getting on with things I did a combination and it worked perfectly. Note to any Aga users: 7kg bird, top oven for two hours then bottom oven for three.

By 7.30 I was ready to drop something large and heavy in the kitchen if H didn't wake up. But climbing up the stairs in a noisy fashion did the trick and she was completely thrilled by her stocking presents. A lovely half an hour with a cup of tea and an 'Oh my God Mum' every couple of minutes.

Ma was a bit of a handful yesterday morning, probably because I was distracted with things in the kitchen and she didn't like it. Getting her into the shower was a patience testing 20 minutes with a soapy sponge in the face for my trouble. Still, we got through it and I dressed her in some suitably sparkly clothes and sat her in the living room with some porridge. Then I had to prise H out of her hat/gloves/socks and force her through the same routine. Then I shoved the Dyson round, stuck a duster in H's hand and went and got showered myself.

When I got back downstairs it transpired that Ma had secreted a KitKat in her trouser pocket. You would be amazed at how far that amount of chocolate can go. So a complete change of clothes just before the doorbell went. I was actually relieved when I realised it was chocolate tbh.

Mavis, Vic and Andrew were wonderful company and we had a really nice meal. The roast potatoes were a triumph even though at one point I thought I was going to have to find oven chips. Bloody King Edwards - not a Maris Piper to be found in Morrisons. 6 minutes par boil but when I drained them in the colander the sink half filled with mashed potato. Thank the Lord I have never knowingly under catered (and also have half an eye on the requirements for bubble and squeak on Boxing Day) so I was able to sift out more than enough in the end. Ma ate two carrot batons and spent the whole time wandering in and out of the room, trying the front door or going to bed. Everyone included her in the conversation if she was in the room and didn't bat an eyelid when she did some of her usual things.

We played several table games (Who am I?, Call my bluff etc.) which was a lot of fun, manged to set fire to two napkins and the indoor sparklers were a huge hit.

Ma went to bed as soon as the three Musketeers had gone, refusing to eat anything at all. H and I watched Dr Who then she disappeared and I watched Downton. A lovely end to a very nice day.

Sorry about the crappy photos - the camera on my phone isn't very good. Although it used to be ok, so not sure what that's all about.


Saturday, 24 December 2011

Christmas Eve

We had the usual start to the day, but I was determined to stay in bed at least until it was light seeing as it is Christmas Eve. When I got downstairs Ma had replaced her pyjama top with a t shirt which she was wearing slung around her neck, she also had on a big coat and one of H's boots. I made her some tea and straightened her up.

I decided to lay the table for tomorrow and then got on with the veg. Ma had been very restless from the get go and spent all morning trying to open the front door and changing into a selection of five or six different coats. Other things include another attempt to sit in the television, standing in the middle of places - rooms, doorways etc. and the most infuriating of all is responding to me when I'm talking to someone on the phone. I imagine it must be similar to what newsreaders and tv presenters have to deal with when they are talking to someone and getting messages from the director in their ear at the same time. Very disorienting and distracting. As I type this now we are watching carols from Kings and every time the reader pauses in his reading or the choir get to the end of a verse she's up and saying 'Right, are we going now?' Then gets really arsey when they carry on. Other conversation is making little or no sense and today she's having real difficulties finding the right words - often just making them up. Definitely makes deciphering what she's trying to say doubly difficult!

I read today about Marlene and her mother and their experiences with virgin coconut oil and how it has improved mother's cognitive abilities. I will definitely be trying this in the new year.

I've just got to sort the turkey in the morning and cook the veg. There's only going to be seven of us, so hardly anything more than a normal Sunday roast really. I must admit that the Aga comes into its own at this time of year and I'm debating between fast roast and slow roast, but think as I'm going to be up at death o'clock anyway it may as well be a slow roast.

Friday, 23 December 2011

Oh my days!

Well it's been quite a day.

Ma was up just after 4 shouting and yelling as usual and no amount of pleading would get her to stay in bed for any length of time so we spent the next couple of hours with her shouting hello (HeLLo? Helllooooo???) and me telling her to go back to bed. In revenge she removed most of her clothes.

I had an appointment at the hospital at 09:30 so we were both showered and dressed fairly smartish then H was prised out of bed to Nanny-sit and off I went. On the way back I went to collect the turkey which only involved a forty minute queue in the butchers *sigh*

After lunch and the small matter of a lost front door key and a locksmith, stopping Ma from trying to sit down in the television and then leaving her to rearrange the cushions and distribute a number of coats around the house (but not, naturally, the one she usually wears which went missing on Thursday), I cooked more things.

Then an incident in the bathroom meant that I was feeling quite tearful for a while, but I'm ok now.

We are currently watching the Sorcerer's Apprentice which is very surreal but highly amusing when accompanied by Ma commenting on the action and trying to engage Nicholas Cage in conversation...

Thursday, 22 December 2011

Last day at Grundy

Today was Ma's last day at the Grundy centre. She went off happily enough, even though we couldn't find the coat she was carrying around for most of yesterday, and returned grumpy and tearful as usual. Once again no sign of any sandwiches for her tea ('That's ok, I don't like them anyway') so I gave her some tinned pears and ice cream which she enjoyed. Her ex-cleaner, Emily, called round to say hello and that filled half an hour nicely.

I'ts 18:25 and she's just gone to bed. A bit sobby when we were putting on her pyjamas and I fully expect her to be up again in an hour or so, this is now the pattern. She is starting to sleep for only a couple of hours at a time at the most - sometimes far less. I know this is another common symptom of dementia and is possibly the one which will challenge my sanity the most.

H and I spent a lot of the day in town doing girly stuff - mainly buying some clothes and having lunch in Nando's. My mad magnet was working as usual and I managed to have three bizarre conversations with strangers, much to H's amusement.

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Just found the sandwiches down the back of the sofa.

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19:22 The bedroom door opens.

Wednesday, 21 December 2011

Getting ahead

04:20am HELLO?? HELLOOO?? IS ANYBODY THERE???

*sigh*

 Go back to bed Mum, it's still the middle of the night.

But I need to get a bar. And do the whatsername but I haven't done it yet. I'd rather have that, is that ok with you? And I've found this...

*sound of wrapping paper being torn*

>>Gives in and gets up<<

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So we've done some baking today. Well I've been baking to the soothing backgound sounds of Smooth Xmas on the wireless and the regular clunk and rattle of someone trying to open the front door roughly every two minutes.

Mince pies, sausage rolls, carrot cake, chestnut stuffing, pigs in pyjamas and a white chocolate dream tart done. Just a ham, bread sauce and veg prep to do on Christmas Eve - other stuffing, gravy and cranberry relish already done. Although I confess to blowing up the second carrot cake. I must remember to get the baking powder and bicarb quantities the right way round... And just nipped to Tesco to do Betsy's Christmas food shop for her where it was surprisingly easy to get a parking space and straight onto a till at the end. Clearly around 15:20 is a good time to go.

I think we might have a take away tonight - I'm shattered.

Tuesday, 20 December 2011

Busy day

The day kicked off just after 4 as is now becoming the norm. At this time of day Ma's hallucinations are in full swing and she is quite verbal. I can't honestly say that I'm at my best at the time of day so I tend to let her ramble on, I make a pot of tea, surf the internet and deal with regular interruptions every couple of minutes or so.

Barry came this morning and Ma always enjoys seeing him. At least today she didn't walk off halfway though like last time! Ruth popped round from next door after lunch and chatted with Ma while I put up the Christmas tree (I really miss my own decorations). Then within five minutes of Ruth leaving Mavis and Vic turned up. So a busy day.

The main points of today... She still asks every few minutes if we are going yet, rattles the door handle and keeps wanting to kiss Harriet goodbye. Also standing is a favourite thing recently - sometimes in the middle of the room, often a foot away from me or the TV but mostly in the doorway to the living room. And the cushion obsession continues. If she's not playing cushion Tetris she's trying to give me (or Eamonn Holmes) a cushion.

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*nipped out to Morrisions*

Me: Well, that's the veg sorted for the Christmas meal

Ma: Oh lovely. When are we having that?

Me: On Christmas day.

Ma: Oh that'll make a nice change.

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Christmas tree (not a great pic and just noticed the cushion distribution)

Sunday, 18 December 2011

Sunday

I've had to add Sunday as a separate day because the photo in the last post buggered up the formatting for some reason.

Today has been more of the same but with the added frisson of going for a nap and taking the bedside light into bed with her along with a glass of water which naturally tipped over and soaked lamp, Ma and duvet. Thank goodness she didn't electrocute herself, I feel sick at the thought of what could've happened. So that's her bedside water glass removed from now on.

Tomorrow is the anniversary of Dad's death and I'm already very tearful. Now that Ma has gone to bed I can cry openly without distressing her. She doesn't understand of course, she thinks he died years ago which is incredibly distressing in itself.

I'm so glad that H is coming tomorrow as it will give me something else to focus on during the day. By the time I've gone to fetch her from Manchester, braved Primark to pad out the inevitable one pair of pants and a T shirt which will be stuffed into her suitcase (alongside the Wii, her graphics tablet, her 3DS and all her pencils, polychromos and other sundry art materials - you know, all the important things) then manhandled the Christmas tree inside and decorated it and fed her a chicken dinner, I shall be tired and hopefully not too emotional. There isn't a day that goes by where I don't miss him dreadfully but I hope that now this year of firsts has passed I can start to remember him without so many tears.

Someone asked on a forum the other day what the highs and lows of the last year had been and to be truthful there haven't been many highs - the birth of my granddaughter, a week in the Lake District and seeing my children in the summer are the main things. The lows have been many, varied and at times very very deep. I hope next year will be much lighter all round.

Friday, 16 December 2011

Another weekend 16/12

Friday

I'm finding Ma particularly difficult and exhausting to cope with today, being up since 4am doesn't help I suppose. Well, that and trying to follow a conversation which has no start, middle, end, subject or grounding in anything remotely close to reality. Add to that a multitude of repetitive behaviours, sobbing and physical nastiness and you have a fairly trying day. She's not the only one who feels like sobbing. I'm fighting to get her to eat something (at the moment anything would do - I'd buy her a bag of Haribo if that would work) and trying to keep her awake until at least 6pm. But it isn't looking like a battle I'm going to win.

I had a hospital appointment this morning so Ma came too of course. It wasn't really a problem other than her wishing to speak to every single person we passed in the corridors, queued with or sat next to. Most people are really nice and can usually see that she has mental health problems but you do get the odd one or two who can be a bit brusque. Then all the way through my consultation with the respiratory technician she kept up a constant chatter which was a wee bit distracting but I know my way around a CPAP machine so it was ok. If I'd been new to it though it would have been impossible to concentrate.

However, I have good news about the day centre, she starts at the new one on Jan 11th so next Thursday is her last day at Grundy. It would have been the 4th of Jan but she's in respite care until the 5th. The only downside is that they've ony offered her one day despite the consultant saying she needs two. Barry is visiting next week so I'll ask him about it then.

Hearing about everyone going off to Christmas lunches, drinks and parties is putting me in a fine sulk! I might step off the wagon tonight and order a takeaway too as compensation.

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We made it to 6:15 by dint of bribery, corruption and making a lot of noise. I am not having a takeaway, I've cooked instead. Just sitting here eating it (7:00) and in comes Ma all smiley saying she's had a lovely night's sleep. My suggestion that she might want to go back to bed because she was so tired earlier has fallen on stony ground.

Well, one of us will be in bed before long. My money is on me.

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Saturday

Another day, another 4am start and a bit of a rollercoaster day since then.

I managed to nip out to the butchers early doors and get the chipolatas, chestnuts and some sausagemeat so that I can do some more preparation for Christmas day - once I'd chipped the solid ice off my car that is! When I got back Ma was ready to get up so we did the usual morning things but she couldn't settle for long on the sofa and spent a large part of the day pacing, bundling etc. I do find it quite difficult to cope with the fact that she has to follow me everywhere. I know she needs the reassurance but sometimes I really feel the need to scream at not having any personal space.

This afternoon we've had a continual three-way 'conversation' between Ma, me and the TV, musical chairs, occasional sobbing and regular sojourns to the front door. I really do try to follow what she's saying but it is nigh on impossible. I can't even nod and play along because she expects me to answer and gets seriously angry when I don't provide the response she's expecting. I can't win!

Bundling








Thursday, 15 December 2011

Thursday

Ma was incredibly restless all day yesterday and by the time she went to bed I was exhausted and didn't feel like writing anything.

She is still set on 'going' somewhere. She tries each of the doors at least once very 10 minutes and cycles through a number of coats, shoes, hats, bags etc. So long as she isn't distressed I don't try and distract her and it does seem to be the most successful way to keep her occupied at the moment. Not even a visit from M & V managed to hold her attention for more than 10 minutes before she was kissing them goodbye and heading off to find a coat.

However it is 09:35 and she really will be going somewhere very shortly. Once she has gone I'm off into town to do some much needed Christmas shopping and possibly treat myself to my 'work's' Christmas lunch. If the bus arrives early enough there may well be a Christmas breakfast too...

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Late update:

When she got home it was the usual mix of 'I'm never going there again' 'The girls are lovely' and scurrilous gossip which I can't make head nor tail of. She ate some of her sandwiches and was nodding off on the sofa by 6pm so I got her into bed by half past.

She's been awake since 4am shouting and crying, wanting to 'go home' and calling for Peter. She looks/calls/asks for him everyday but can't remember that he stayed here for a couple of days a few weeks ago. She's back in bed at the moment and I hope that today will be as stress free as possible although she is coming to a hospital appointment with me this morning which could be interesting.

Tuesday, 13 December 2011

Recurring themes

 A current obsession is 'I'm going now'. It goes like this:

Right are you ready?

Where are you going?

I'm not sure. Up the road and then along.

I need to do this first Ma.

Oh right well I'm going now. (picks up coat/blanket/cushion. Goes to front door and tries to open it several times)

This isn't working. (returns to living room, puts coat/blanket/cushion down)

** three minutes later **

Right... are you ready...?

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Today we have had a recurring little boy. No idea who he is but she seems to like him. Read the following in any order and repeat at regular intervals:

Isn't he a lovely little boy?

I must find that boy some chocolate/a present.

Where did he go?

Hello??!? Are you upstairs??

He'll need this coat.

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She's still very restless and cannot settle for more than a minute or two. I dumped a pile of napkins in front of her to fold earlier (as someone suggested) but she just stirs them up a bit then walks away. The button box was even less successful. And Mavis and Vic can't keep her interest for much more than 15 minutes any longer without a real struggle.

She likes going out less and less - despite trying to open the front door every few minutes. It's odd actually. She is growing to really dislike going for a walk or into town but give her the opportunity to slope off in her socks without a coat and she'd be off in a flash.

I've taken the view that as long as she isn't distressed it's fine for her to keep rattling the door and pacing in and out, after all everything else I've tried to engage or distract her hasn't been terribly successful. And for the sake of my sanity I let her rattle on now and don't try to answer or make sense of everything she says. That way madness truly lies.

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This morning I discovered the futility of trying to get ahead and wrapping the Christmas presents early. More wrapping paper and selotape on the shopping list then.

Make that like living with a five foot tall, 81 year old toddler labrador puppy cross.

Monday, 12 December 2011

Mondays and migraines

Yesterday's difficulties didn't wane once bedtime arrived and Ma remained restless all night, calling, shouting and wandering all through until I 'got her up' at 7 this morning.

Throughout the morning she was weepy and aggressive so in the end I suggested a trip to Tesco for some veg and some lunch. She wasn't keen but I really wanted a change of scene and hoped that being in public would improve her mood. She did lighten up a little but was unable to find or fasten her seabelt (pulling at the buttons on her coat and nearly ripping off a pocket instead) or open/close the car door. In the shop she insisted on pushing the trolly but wouldn't stop for things to be put in it, so I spent most of the time grabbing things off the shelf and lobbing them at a moving target!! Lunch out was refused and her mood deteriorated once more.

Back home she didn't recognise the house for a long time and spent several hours calling for people and asking me every couple of minutes if we were going. Unfortunately I then started a migraine so its been a bit of a crappy afternoon. It's now 18:15, I'm slowly feeling a bit more human and we are having a cup of tea.

I haven't had to break out the latex gloves once today, for which I am eternally grateful, and I'm hoping for a better night tonight. We both need the sleep.

Friday, 9 December 2011

The weekend starts here 09/12

Friday

Another boilerless start meant keeping Ma in bed until I managed to get the blasted thing lit and the house warmed up. She had breakfast in bed - porridge - and stayed put until about 10:30 when she got up to watch This Morning but declined to get dressed all day. She was disappointed when she discovered it was Eamon today - not a fan it has to be said. I think the words bloody and idiot were employed on several occasions. I'm not a fan of Loose Women so went into the kitchen to do some prep for Christmas day (cranberry sauce, make-ahead gravy, that sort of thing). Turns out Ma isn't a fan either if I'm not in the room so followed me from Aga to sink to freezer to Aga etc. Not irritating in the slightest. No really.

We've had quite a few imaginary visitors this afternoon and one real one who called in for a cuppa and dropped off a bag of Bramleys and quinces. Thanks J!

Today has been a day of bundling things and trying the front door every five minutes. Very very quietly - I suspect that if the door wasn't locked she'd be off in a flash. In her pyjamas and socks and in the middle of one of the frequent snow/hail showers we've had on and off all day. If anyone thinks I'm horrible for keeping everywhere locked up tight, then that is why I do it. And why I have to do it.

One theme of today has been 'going for a nap'. This involves getting into bed and me getting her a hot water bottle and closing the curtains. 'Have a nice rest' 'Oh yes I will, I've been looking forward to this.'

Ninety seconds later:

Hello??!?
Are you there?
Shall I get up now?

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Repeat after me...

It's the television, it isn't real. I'm sorry you can't go in the car/hold the baby/buy that clock.

There's no one here except us. And the dog.

I'm not going anywhere.

No I don't want to get into bed with you, sorry!

He is a she (yes I know I should let it go but...)

You must eat some proper food. Celebrations don't count.

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Saturday

Interesting start to the day. Undressed Ma ready for her shower and five latex gloves fell out of her gusset...

Just been to the garden centre and bought a Christmas tree which will be delivered on Friday. This is a compromise between buying a tree now (before all the good ones go) and waiting until H arrives on the 19th. Because it won't be here until Friday I will probably be able to wait until Monday to decorate it.

This afternoon Ma has been very restless, carrying a blanket with her everywhere, trying the front door every three minutes or so and asking where Peter is every five. She's been shouting at the TV because no one will answer her and pacing, pacing, pacing. I think she wants to go and see Mavis but they are looking after their son who has bronchitis so have their hands full. Everytime I turn round she's wearing different clothes - sometimes mine, which are at least three sizes too big.

It takes a massive effort not to get annoyed and frustrated with the constant repetition. I know she's struggling to make sense of things but I struggle to make sense of her making sense as 90% of her conversation now is completely incomprehensible.

My brain needs some off duty time in front of crap television. Good job it's Saturday then.


Sunday

What sort of a mood are we in this morning?

Ahh...

That would be the grumpy glove-shoe mood then.

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I can't think of anything positive to say about today, sorry. I think I'll just draw a line under it and leave it there.

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Thursday, 8 December 2011

Midweek

Yesterday was a slow start mainly due to Ma not waking until half eight and then staying in bed for most of the morning because the boiler pilot light kept blowing out so it was cold in the house. I put both heaters on in the living room but because it is a big room it took a while for it to get warm enough for Ma. After lunch she went into a huge decline very quickly - almost like a switch being thrown - and we had some of the old behaviours: hair pulling, suicide threats, throwing things, pinching me etc. Luckily we were due up the road for tea and biscuits so I got her into her coat and off we went.

When we arrived Ma asked me who the house belonged to and when I got out of the car she asked me if I wanted her to get out too. This is a recurring thing at the moment. She doesn't recognise places she's known for 45 years or more including her own house.

Time spent with Mavis and Vic is always a pleasure and I enjoy a conversation that makes sense! We were there for about an hour, Ma was not very coherent but they take it in their stride, bless them. Back at home Ma refused to eat anything and was in bed by 5:30. I took her some hot chocolate and her meds just before 8 and she slept through the night.

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This morning was a much earlier start and I managed to get the boiler to stay lit long enough to get Ma up, through the shower and her breakfast and then dressed. She was barely dressed when the door bell went and the bus had arrived. A quick whirl into her coat and off she went quite happily with a new driver we haven't seen before.

I went off to the Trafford Centre and managed to get a couple of bits I needed before being completely reckless and going to the cinema. I've never done that on my own before but it was fine (despite the sound of the wind wailing over the soundtrack!) and I'll definitely do it again. Then back via the supermarket for some bits for Betsy.

Ma has just got back and seems to be in a reasonable mood although refusing to eat her sandwiches as usual. She does look tired and listening to her talking I think she'll be in bed before too long - good job I've already put a hot water bottle in there.

Tuesday, 6 December 2011

Carols and mince pies at the Dementia Café

Believe it or not I had to wake Ma at 08:30 this morning! A lovely start to the day, I managed to have a nice cup of tea and a tootle on the internet for a couple of hours before she got up.

Once up Ma had some porridge for breakfast and by the time she was showered, dressed etc. it was time for Phil and Holly on This Morning. So a nice gentle morning which didn't descend into tears until about 12:00. Thankfully we were due out at 12:45 for a mince pie and some carol singing at the Dementia Café so it didn't go on for very long. To be honest I was surprised at how easy it was to get her out of the house but it soon became clear that this was because she thought she was off to see Mavis, when we sailed right past she wasn't quite so cheerful...

We arrived at the Dementia Café and her mood improved a bit then she saw Anne and David and was able to sit with them and suddenly everything was ok. She had a coffee and a mince pie (thanks for the plate Rachel - I'll bring the Dyson next time!) then the singers turned up. That was the first time that Ma decided we were leaving. At the end of each song she looked across at me and asked if we were going and a couple of times I had to persuade her to sit down again, but we made it to 'We Wish You a Merry Christmas!' in the end. As soon as it was over though she was up and putting her coat on.

On the way home we dropped off the Vicar's Bible (left behind after Communion yesterday) and detoured via Morrisons for milk and bread. As I was carrying in the shopping Ma took her coat off and went to hang it up. Next thing I knew she was on the floor having fallen into the cupboard. She's fine, nothing broken, and once we managed to get her up off the floor she's had a cup of tea and a couple of biscuits to settle her down.

Watching her talking to the Hairy Bikers and listening to the complete lack of any sensible conversation I'd say that it could be a 6 o'clock bedtime tonight after all the excitement.

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Singing carols (or not!)

Monday, 5 December 2011

Back in harness

I had a lovely weekend away, although it was an awful lot of driving (I think from going to see my Aunt on Friday morning to this morning I've done around 800 miles) and got back here just after 10am.

Ma was pleased to see me and Peter said that she'd been fine all weekend, eating ok, no accidents and only the occasional disturbance overnight. He hadn't managed to get her into the shower though so that was the first thing I did.

Just after she was dressed and sitting in the living room the Vicar arrived to give her Communion and then he and I had a chat whereby he's has seconded me onto a project he is doing for next year (Queen's Jubilee) which will keep me busy for a bit during January typing stuff up for him.

Ma seems very wobbly today. Unsteady on her feet, and very confused. Of course she hasn't eaten anything much since I got back other than a bit of pudding and ice cream about an hour ago. It's now 18:50 and I'm battling to keep her awake until 19:00

Tomorrow is Dementia Cafe, with carols and mince pies and oh ar*e I've just remembered I'd promised to make some mince pies. I'll have to see if I can pass off Morrison's bakery dept ones as my own *looks shifty*

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And a pic of my beautiful granddaughter. Just because I can.

Saturday, 3 December 2011

Weekend Blog 03/12/11

Friday started quite early - around half five-ish with Ma doing the usual thing about having been in bed on her own all night. I suppose it makes a change from partying with the multitudes on the floor.

We set off to visit my Aunt in high spirits, Ma was really looking forward to it. It takes about an hour to get there depending on the traffic so about 20 minutes in she was getting anxious and naturally at the first set of lights on the East Lancs road she tried to get out of the car. It's funny how when we get in and out on the drive she can't operate her seatbelt or open the door but put us in the middle of fast moving traffic...

I'd warned Auntie Peg that we probably wouldn't stay long so she wasn't unduly upset when Ma bolted down half a salmon sarnie and then asked if we were going. We'd been there less than half an hour and I'd barely had a bite of my cheese and tomato! We left at 10am, it's an hour each way and we were back for 12:30.

Peter arrived, I left and headed south west.

My granddaughter is adorable, my son performed in a show at the Landmark theatre in Ilfracombe tonight and I'm heading back again tomorrow.

Thursday, 1 December 2011

Day Centre Day

Thursdays are so much better than they used to be. She still says she doesn't want to go, but as she only realises she's going when the doorbell rings and her coat goes on there's not a lot of time to work herself up into a snit.

I woke her at 7.30 this morning, no dramas, no tears, no need to dash for the shower. Wonderful.

I've spent the day cleaning and running to the tip - not a silk flower or a Brixton Briefcase left in the building.

When she got home she was all set to start on the tears but I chivvied her out of it and she ate most of the tea she brought home with her (tinned salmon sandwiches *boak*) and has just gone to bed. No dramas.

I feel a bit disoriented!

I'm off to wrap a few Christmas presents and write Ma's Christmas cards.

Wednesday, 30 November 2011

Halfway through the week

We were up at 7 this morning. Ma needed a shower first off again then we had tea and she had porridge. The first half of the day was quiet and tear free - just Ma chatting to various imaginary people - and I got quite a few chores done but predictibly after lunch the atmosphere changed.

It started with Ma putting her coat on and trying the front door every couple of minutes then moving all the cushions off the sofas and putting them in odd places (behind the curtains, on the stairs, on top of the standard lamp...). She spent a while bundling up towels and her duvet in the bedroom before going back to trying the front door. Although we didn't really need much more than some milk I decided we needed to go out for a bit so we went and did a bit of shopping. I know we do a lot of 'going to Tesco' but trips to the park or going for walks haven't been successful, she's very unsteady on her feet and often ends up in a temper, it's better if we go to Tesco so that I can end up in a temper instead.

Since we got back the cushions have been a feature again such as waiting to give a cushion to Zoe Ball on It Takes Two about five minutes ago:


She got fed up and cross in the end because no one was listening to her.


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I'm holding out for a 7pm bedtime and it is looking like we will actually make it!

Tuesday, 29 November 2011

Permission to say ARRRGGHH!

Last night was fairly short in the end, we were home before half eight but I did buy myself a gorgeous tea caddy - one of the Williamson's Tea elephants - and won one of the flower arrangements from the demonstration in the raffle.

Today has been relatively quiet. The GP came at midday and is happy with the medication Ma is on at the moment. He's investigating a possible (but unlikely) urine infection due to the amount of hallucination but is of the opinion that it is probably a combination of the new drugs and another deterioration in her condition.

We had a trip out to get some Frontline for the dog (she will go chasing the mice in the rockery) and collected the now pristine duvet. This time without any attempt to rip my digits off or exit the car while it was moving.

She's eaten next to nothing today again, but believes that she has so it is really tricky.

We've been doing the 'I want to go to bed paso doble' since just after 4 this afternoon. She asked every three minutes if she could 'go yet' and when I asked her to try and stay up a bit longer she would close her eyes and try to sleep on the sofa. I managed to keep her up until 6:15 and then gave in.

Night mum

Night - what shall I do about this man in my bed?

There's no one in your bed mum look!

Yes I know there isn't *looks at me as if I've come up the Irwell on a bicycle*

Ok then goodnight, God bless, sleep well.

*turn off light*



45 mins later...


Morning!!!

Monday, 28 November 2011

In the press!

I did a little email interview for Tesco Online Magazine and it has appeared here:

http://www.tescomagazine.com/mum-of-the-year/your-world/caring-the-mother-daughter-circle.html

Anything to raise the profile of the role of carer is a good thing in my book.

My thanks to Liz Jarvis for asking me.

More Monday Tales

I'm writing this quickly because we are off to the garden centre in half an hour for a special 'Christmas' evening with mince pies etc.

Thankfully when I took in tea this morning she was still in bed, although she was crying. And continued to cry until approximately 3pm including during going to the supermarket for bits and bobs and then to the laundrette with the duvet. During the trip to the laundrette she did try to get out of the car three times (as it was moving - believe me I was very tempted to stop the car and let her on the third attempt) and at one point she came very very close to dislocating my thumb, but we managed to get there and back without any other dramas.

The hallucinations continue unabated as does the confusion re TV and reality.

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(Just pulled up on the drive)

Where's Peter?

He's not coming today

Oh! Isn't he?

No mum, not until Friday

Oh ok then

(10 steps to the front door)

*open front door*

Helllooooo?!?! Are you there??

Is who there?

Peter

*insert banging head on wall smiley*

Friday, 25 November 2011

The weekend blog 25/11

Ma started calling from 04:30 this morning, I called back regularly but clung to my mattress until 06:30. When I did eventually go downstairs she was fully dressed and extremely annoyed that she'd been on her own all night. I gave her the Friday tablet and took a cuppa upstairs to watch the news. The day started properly just after seven and she was soon washed, dressed and eating a poached egg on toast.

Her mood began to slide again at around 10:00 so I whisked her into the car and we went to the garden centre for bird food and other birdie treats for the winter. When she got out of the car she was very unsteady on her feet so I calmly suggested a wheelchair and she agreed. Much to my astonishment. This made for a very pleasant tootle around looking at Christmas decorations and bird seed, listening to some really heavy hail showers on the roof.

Back home for lunch then we had several hours of:

So are we going?

Not going anywhere Mum, we went out this morning

Oh so when is Peter getting here? (or 'is Peter upstairs?')

Peter isn't here until next Friday

[repeat every five minutes or so]


Every day at 16:00 we have been watching Ade in Britain, I thoroughly enjoy it, Ma gets very confused between the tv and reality. At the ad break I went to make a cup of tea. A few moments later Ma appeared in the kitchen in a dither with her coat on.

Hurry up!

What's the matter??

He's getting in the car! He'll go without us...

Waiting for Ade
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A bit of housework this morning. I mopped the parquet and the kitchen then hoovered. Ma dusted. Mostly the carpets it has to be said and it wasn't done particularly graciously as I kept finding the duster abandoned in odd places and returning it to her, but it filled an hour.

More tears again today. I'm at a loss really but the GP is coming on Tuesday, so maybe he can suggest something.

My ex-SIL Jane came this afternoon. Ma adores her so she's been all fluffy and lovely. Lots of standing closer to Jane because obviously I am the big baddie!

Just put her to bed and a sleeping tablet fell out of her pillow. That would explain why she was awake at half five. I'd taken her tablets in later than usual and woken her up thinking that this would mean a slightly later start for the weekend - foiled! Not tonight though. Rosa Klebb has nothing on me.

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Sunday Morning

I'm rather tearful this morning.

I went downstairs just before seven and could hear her talking. Made some tea and took it in to her. Or at least I tried to but I couldn't get the door open properly because she had taken the duvet off the bed and was once again lying on the floor. It was obvious that she really should've gone to the loo at some point so once I'd manage to get her off the floor (she's a dead weight and absolutely does not try to help) I got her straight into the shower - not before some got trampled into the carpet though. All her night clothes have had to go into the bin.

Showered, dressed and breakfasted she parked her self in the kitchen in the sunshine, chatting away to whoever is there and apparently listening to a radio. I got on with cleaning up and putting the bedding in to wash but I'll have to find a laundrette for the duvet unfortunately.

Its now 11:50 and I've just herded her out of the bathroom and re-dressed her for the third time. This looks to be the theme for today.


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The rest of the day has been fairly trying but nothing like as bad as this morning.

She's back to refusing food again, convinced she's only just eaten something. It's difficult to know how to tackle this one other than to offer tiny portions of things 'to taste' which sometimes works and sometimes doesn't. However she's just appeared with an empty box of Celebrations so that might explain things - no idea where it has come from though! Perhaps from the same place she's hidden her shoe.

The theme this afternoon has been the need to put a coat on. I think she's worn seven or eight different coats each time getting in a tangle puttin git on but refusing any help then finally sitting down for a while before taking it off and putting it away. Then doing it all over again with a different coat.

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Things I've said too may times to count today:


You've already had a shower, please put your clothes back on


It's the TV, it isn't real.


Peter isn't here/isnt going to be here/hasn't been here

There's nobody here, only us.


Did you flush the loo?


Are you talking to me?




Not a very long list but when you say most of them roughly every five minutes (and that's being a little generous I think) then there isn't room to talk about very much else.


I think I'm ready for some time off.

Thursday, 24 November 2011

Yesterday and today

Thankfully Ma was still in bed when I took her some tea yesterday morning. She was crying mind you, but that's par for the course. I dispensed tea and tablets matter-of-factly and left her to herself for half an hour or so. She cried all the way through her shower and getting dressed then went and sat in the living room. By the time I appeared with her porridge she was bright and smiley and enjoyed every scrap.

We went off for a cuppa with M&V mid-morning and by dint of each of us telling her at various times to sit down and relax, we managed to stay there for just over an hour. I was very glad of the chance to have a normal conversation for a change and although Ma can't settle she does love to see them.

Barry came in the afternoon and we discussed Ma's impending change of day centre. I am now confident that things will move on apace and as soon as a space is available she should be in. He has also done an assessment for respite care at New Year to cover the shortfall due to Peter's holiday starting in the middle of mine. Naturally halfway through Barry's visit Ma took herself off to bed.

Soup and bread and butter for tea and in bed for half six. Not a bad day all round really.

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This morning she wasn't crying but was very grumpy. She seems to have a sore wrist but I can't see any swelling or bruising. She's been angling to go and see the doctor for the last few days so maybe it has something to do with that. When I ask her why she wants to go she just says that she thinks 'she ought to' because she hasn't seen him. I'm not sure if that is considered a good enough reason to make an appointment...!

Her grumpiness meant that I avoided any mention of the day centre until the bus had actually arrived. In the 90 seconds it took to get her coat on and hand her over she did manage to object a little but Lee is quite adept at this sort of thing and she was off before she knew it.

I'm just waiting for the bus to arrive.

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Well there you go. The day centre is 'absolutely lovely' and she 'really enjoys it'. Apparently the only fly in the ointment is Lee, the bus driver. He is horrible because he stops the bus and tells her off everytime she takes her seatbelt off to go and talk to the other people on the bus.

Funny that.

She's absolutely shattered and is now in bed. Getting her there before she fell asleep was a bit of a challenge as she tried to lie down on every sofa, surface and step between the living room and her bedroom. Pyjamas were impossible so she's in her thermals. Night time pills ended up all over the floor but have been retrieved and taken. I hope she sleeps through until the morning.

Tuesday, 22 November 2011

Well it seemed like a good start...

For the first time ever since I've been here my alarm woke me this morning. Cue minor panic as I thrashed my way out of the bedclothes and stumbled downstairs. Ma's bedroom door was still closed and there wasn't a sound so I went and made some tea before going in.

Just before I opened the door I could hear her talking so I knew she was awake, but didn't really expect to see her lying on the floor with her head cushioned on a rolled up carpet. Cue second panic of the morning, this time not so minor.

What are you doing on the floor??!? Did you fall out of bed? Fall over in the night?? Are you hurt?

Oh no don't worry. All these people *gestures* told me to lie down here with them.

Oh good. Thank you everyone. Getting her off the floor was a hell of a challenge because she makes absolutely no attempt to get herself up. I did consider calling for an ambulance but finally managed to get her up by sliding her along the floor until her feet were up against the skirtingboard then using the wall as a fulcrum. (that probably isn't the correct terminology but you get the idea...)

She decided she wanted to get back into bed (not surprised after lying on the parquet floor for goodness knows how long) and I thought we could leave on the two pairs of trousers, skirt, upside down fleece and chiffon scarf until later. I took her toast and tea with her tablets and she dozed until nearly 11am.

The rest of the day has been relatively quiet other than Ma's continual chatter which does, at times, drive me to the brink of insanity.

Other than that Barry tells me the paperwork for the new day centre has not been submitted yet so it looks like the battle to get her on the bus will continue at least until Christmas.

Monday, 21 November 2011

This just about sums up my day...

Would you like some tea?

No thanks I'd like some tea

Right ok, I'll make you a cup of tea then

Oh no I don't want any thank you

Saturday, 19 November 2011

Weekend 19/11

I could hear Ma talking to her imaginary friends from about 5am and they've been with us on and off throughout the day. I think it is probably the increase in medication and hopefully she will acclimatise, if not I'm speaking to the doctor early in the week so I will ask then. She's also been very difficult to understand today, absolutely nothing makes any sense and when you try to unravel things she goes off on a different tangent. Very frustrating and headache inducing.

The only really difficult time was in the shower this morning. She has suddenly forgotten how to wash herself so I had to do it. She took exception to me asking her to turn around so that we could wash the soap off and threw a soapy sponge into my face. But other than that (once my eyes were back to normal!) we haven't had the huge mood swings.

We had a trip to Morrisons for some milk and bread. We could've gone to the Coop but I thought it would fill a bit more time if we went a bit further. Unfortunately she is a bit of a menace in a busy supermarket because she tends to stand in the most in-the-way places annoying all and sundry.

Just before I dropped her off to see Mavis this afternoon she was working up to a crying session but when I mentioned where she was going the tears disappeared and she managed to stay there without me for 45 minutes.

Otherwise, a quiet day with not a lot to report. In bed at 6 after picking the middle out of a fish finger sandwich and eating half an egg custard tart. Nearly 100% more than she ate yesterday though.

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Some days are just not destined to be good ones. Today was one of them. There's nothing I can really put my finger on other than I missed out on a big party in Cheltenham last night (which made me feel hard done by) and Ma has been incredibly incoherent for days now, which is just so exhausting.

What would you like for tea?

Not much

Yes I know, but not much of what?

Not much of perfect.

This afternoon she couldn't remember that I'm her daughter, asked me if my father was coming to collect me and very slowly read and re-read the front of the Woman and Home Christmas magazine at least seven times. I went into the kitchen to get away from it. She followed me and brought the magazine with her...

Eventually I just had to go into the garden and have a bit of a moment. The dog came with me and sat stoically by my side while I sobbed for a few minutes then we both went back in and I made us both a cup of tea. She went to bed at half six but I've only got one sleeping tablet left so it might not be such a quiet night tonight.

'Perfect' turned out to be cheese and biscuits.

I am about to wallow in crap television for a few hours.

Friday, 18 November 2011

Visiting the new day centre

I'm viewing the increased dose in sleeping tablets with cautious optimism - it was a 6am start today which is a vast improvement on 3am!

However, her mood hasn't picked up yet and we had another day of tears and moods. She spent most of this morning lying on, across or in her bed, refusing tea/coffee/chocolate hobnobs or chocolate mini rolls. So after lunch I suggested we went to look at the new day centre. She suggested we went to see Mavis. Seeing as I was driving, I won.

The centre is very nice - light and airy and not too big. When we arrived they had just finished tea and cake and everyone was sitting around. Apart from the two who were on a permanent loop involving heading for the door and being gently herded back into the room of course. Several ladies said hello to Ma and she is always convinced that whoever she meets she's met before so this often causes confusion - especially when the other person also has dementia. But the visit was relatively successful after a shaky start when we were left in the foyer for a few minutes while Emma (senior carer) resolved a problem. One lady was very abrupt with Ma when she said she thought they'd met before:

I think I know you. We've met before.

I don't think so! I'm a Nurse. I know more about these people than you do. (turns back)

In times past Ma would've said something but these days she's not really making conversation and actually isn't interested in what anyone else has to say.

She made it to 6pm (admittedly with a face on) after having egg and chips and is now in bed. I told her it's Saturday tomorrow and we can have a nice lie in. I even managed to say it without a trace of irony.

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When we got back I took the laundry out of the washing machine and Ma offered to help. So I put up the clothes maiden and left her to it.



I think I'll be decorating the Christmas tree.

Thursday, 17 November 2011

Wake up Sleepyhead!

So last night we did double dibs on the sleeping tablets and tucked her up in bed. I was so tired I couldn't even stay awake for Frozen Planet so we were both in bed early.

Not a peep from Ma until two minutes past seven when I heard her bedroom door open and she went to the loo. I did the usual with the meds and tea and took mine upstairs to ring the children and wake up properly. When I came back down she was asleep again so I left her to it, had a shower, dried my hair and then woke her up at half eight - I was worried we'd run out of time before the bus arrived!

After her shower and breakfast she started to slide into a morose and weepy mood saying that she wanted to die and that she never saw anyone or went anywhere... Well she did sort of hand it to me on a plate, so I said brightly that the bus was due to arrive and time to get her coat on.

Just as her coat was fastened the bus arrived with a different driver so there wasn't the usual 'Oh God it's HIM!'

I'm not sure what poor Lee has done but as is often the case with dementia sufferers, they never forget the most bizarre things and cannot remember the oft repeated everyday and mundane. So off she went without a backward glance, dinner money in her pocket.

I ran away and played with some shops.

I tried to ring the day centre many times during the day but there was no reply. This, it turned out, is because the number given in the carer's handbook is for a group who meet at the centre so I'd been ringing a private number all day. Once I'd found the right number via Google I told the lady on the other end of the phone that Ma's dinner money was in her coat pocket...

Oh we asked her if she had any money and she said no.

Well... umm... she would say that. She has dementia and wouldn't remember.

Oh has she?

..........

Wednesday, 16 November 2011

Decision time

Enough already.

Another early start - although not as early as the other day thank goodness. I heard her moving around at about 6am and when I went into her bedroom she was already lying across the bed sobbing and hasn't really picked up from there all day. I carried on as normal - doling out meds, making tea, turned on the shower and she went through all of the morning routine still sobbing. The recurring theme today has been wanting to go 'home' and wanting her 'brother' who could be either my dad, her brother or my brother. At one point she was going to walk all the way to Liverpool.

She was due at the hairdressers at 2pm but flatly refused to go. At that point I phoned the GP and spoke to a lovely lady doctor (she sounded about 12) who has increased both the anti-depressant and the sleeping tablets, she will also ring me again on Friday to check on how the sleeping is going and as a consequence, if her mood has improved. She gave the usual advice about suicide threats and I assured her I would ring if I feared for her safety at any time.

Shelia popped round for half an hour just after I came off the phone which was great because another recurring theme has been that no one comes to see her. Clearly Ma doesn't include Shelia in this because ten minutes in she walked off and went to bed. Shelia is lovely though and didn't bat an eyelid, just chatted to me instead.

I have offered poached salmon for tea and she's agreed. I hope she eats it because she's definitely off food again at the moment.

'We' appear to have lost one of her new black shoes today, along with the bank card and a necklace. I've searched high and low but no luck so far...

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Will you remember those things for me?

What things Ma?

I can't remember.

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Day Centre tomorrow. I won't tell her until the last possible minute, assuming that she's in a reasonable mood. If she's like she is today I don't hold out much hope of getting her on the bus. Although I did manage it last week despite the awful start we had. Here's hoping.

I'm in need of some modest retail therapy.

Tuesday, 15 November 2011

A new week starts

Yesterday was a bit of a trial.

It started at 03:15 and pretty much went downhill from there. We were in Morrisons when they opened to pick up supplies then back home where I promptly started a migraine and spent the rest of the day was spent trying (and failing) to have some time in a horizontal position in a quiet, darkened room without interruptions.

Last night was a lottery win with a full night of sleep. Ma was up just after 6 and in a very fluffy mood - doing silly dances and putting her pants on her head. We were in town for half 9 so that I could put some cash in the bank and when we got back she rang Mavis who said come round after lunch. This was the start of the mood slide because she asked me every five minutes from then on if we were going (this was 10:30)  and culminated in a full blown meltdown when she thought I was talking about her on the phone when in fact Betty rang to ask me if I'd collect her pension for her. No amount of reassurance that I wasn't talking about her made any difference nor did trying to explain that 'after lunch' actually meant, well, after having some lunch. And no matter how much she wanted to go at that moment, Mavis would be out until after lunch.

So she sat on the stairs in her coat for several hours, keening for my dad etc. and refusing to eat a thing until I said it was time to go. I dropped her off, picked up Betty's pension and was back home within ten minutes. Mavis rang to say she was ready to go home 10 minutes after that. She was waiting at the door when I got there and since we got home she's been dozing on the sofa. I hope she eats something for tea.

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Hairdressers tomorrow which is good. Hopefully they'll be able to remove the black streaks she's put in her hair - not sure if it's marker pen or mascara.

Saturday, 12 November 2011

Weekends

Weekends are always a lot quieter in here, less views etc. So I think in future I'll just run one blog post for the whole weekend and add bits to it as and when.

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Another disturbed night last night. She went to bed in pjs and pink socks but by the time I took her tea in this morning she was wearing two pink socks on one foot, two black ones on the other. A black shoe and a purple slipper, two pairs of trousers, three tops (all on backwards) and a pinstriped jacket. Otherwise though she was quite happy. After a shower and breakfast she had a bit of a mood for a while rattling doors and trying to climb out of her bedroom window. Then she calmed down and decided she wanted to go to the garden centre for lunch. We got there are about half one and we were back in the car by one thirty five because she didn't like it and didn't want any lunch and how dare I think that she did etc. She then suggested we go to see Mavis... I said no because it's lunchtime - naturally normal societal conventions mean nothing and she was of the opinion that they wouldn't mind. I persuaded her otherwise by suggesting she phoned them when we got back and ask them over for afternoon tea.

So I made some mince pies and five minutes before M & V arrived Ma said she was going to bed.

Once they arrived she did get up again and they stayed for nearly two hours, bless them. Halfway through Ma was going off to bed again but they talked her out of it and basically said the same things to her that I do about going to bed too early. They left just before five and I battled and battled but she is now in bed (18:00). However there are some massive fireworks going off so there's a good chance she'll be up in a minute.

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New behaviours recently include separation anxiety, hiding things and an obsession with her bank card.

Separation anxiety means that showering or going to the loo are no longer private affairs. And yes, it does get a bit wearing. I thought it was bad when the children did it but this is a whole other ball game. At least toddlers don't comment on what is happening.

Lots of things have been going missing recently - hairbrush, bits of jewellery, lipsticks etc. Some of it I've found wrapped in lots and lots of tissues and then bundled into a nightdress or jumper in the drawer, but some things have yet to come to light. She does have a habit of putting things down the loo at the moment which is slightly concerning. Plus she has suddenly expressed a need to have her bank card. Luckily I have an old one of hers which has expired so she carries this around with her all the time, she puts it in her pocket and then clutches the pocket to her and often says she would like to 'fasten it in there'. I think this card thing is linked to Dad, almost like a precious photo, because she always mentions him when she's fretting about where the card is. Tonight she was doing the tissue and nightie thing with it which is fine if it makes her feel that it is safe for a while, but it doesn't last for long before she moves it to another safe place. My fear is that she will do this in the dark hours of the morning and I won't have a clue where it is resulting in a major meltdown if we can't find it. Hmm... I wonder if any of my loyalty cards would sub in an emergency? Hmm maybe not Morrisons Miles though.

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Mince pies - these have a frangipane topping. My favourite!



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Sunday has been a lot calmer mood-wise although her behaviour continues to be incredibly erratic.

She was a bit moody first thing, although nothing like in recent days, and adamantly refused my help getting dressed. I was just making her a cup of tea when I heard her fall. She'd put both legs down one trouser leg and pitched to the floor. Thankfully the only damage seems to be a bit of a bruised coccyx which will be painful for a few days but isn't a broken hip.

Clothes have been a major factor all day, she's changed everything at least 5 times and worn multiple items together, inside out and upside down. The last change of clothes which she's just exchanged for pyjamas included a pair of my father's trousers.

Today's obsession has been carrying around a letter (from the Carers Centre to me so not important), a top off a Bic pen, a lipstick, her bank card and a pair of nail clippers in a tissue box which emptied regularly and checked she'd got everything. But she's hardly eaten anything at all.

Other things: trying to eat with just a knife, cleaning her teeth with her finger (and hot water), thinking that every phone conversation is directed at her and answering accordingly - very confusing and not a little irritating! Especially as she likes to be no more than 6 feet away from me all the time.

Friday, 11 November 2011

Frisky Friday

I got home at 10:45 last night after a really fabulous evening with the carer's posse - chilli, tiramisu, cheese, birthday cake, wine and a lot of huge laughs... thanks girls!

Betty was fine when I got back and hadn't seen sight nor sound of Ma all night. I whispered good night to her and listened for her front door closing then locked ours. At that point Ma appeared in the hall and from then on in was up and down all night.

Once again this morning we had a very difficult few hours from about half 5 but gradually she came round, had some breakfast and then we went off to Tesco.

The shopping went remarkably well, Ma was happily looking at things and chose some smoked haddock for her tea and we bumped into several people we know so that pleased her. There was a slight hiatus at 11am when everyone but Ma stopped talking and I had to quietly explain why we were being silent. Then I had to hang onto her arm to stop her continuing out of the store. Then of course at about a minute and 40 seconds she complained quite loudly that it was taking forever. I now think Mandi's idea of a huge sash indicating that I'm caring for someone with dementia is a great idea... (that or a large klaxon on her head which declares 'Warning! Dementia!')

When we got back Ma was very tired and said she wanted a rest so I helped her into bed, closed the curtains and by the time I left the room she was already asleep. I went upstairs to my room and had a toot on the internet.

Twenty minutes later the doorbell rang. When I got downstairs Ma was on the doorstep with Ruth from next door. She had gone out through the integral garage door, rolled up the big garage door a couple of feet and got out underneath it. I genuinely did not hear a thing, she was SO quiet. I hadn't realised that the roller door was unlocked but it was my fault that the integral door was because I'd put some shopping in the freezer. Another mistake I won't be making, both now locked. Thank God Ruth was in.

I made her a ham sandwich and we went up to see M & V. She's been agitating to go for a day or so but they've been busy so I hoped this would settle her a little. We'd barely been there 45 minutes (I still had half a mug of tea to finish) when she was up and putting her coat on wanting to go home.

She is now in bed after requesting smoked haddock, a poached egg, bread and butter for her tea. Of which she ate the poached egg only, naturally.

I know she will be up in the night so I've told her she's not having her meds until later in the hopes that the sleeping tablet might help but I don't hold out much hope as it doesn't appear to do much. The phone is unplugged and my fingers are crossed!

She is really quite agitated all the time just at the moment and I can only think that it is the new medication. I'll leave it another week but if there's no improvement I will phone the clinic. If anyone can give me any corroboration on this, I'd be grateful.

Thursday, 10 November 2011

Oh boy...

Was I in trouble this morning! I had the temerity to sleep all night and not get up until 7am. However, I was awake from 5 and she didn't start calling me until 7 so I'm not sure why I was so in the dog house. It was as if she'd got up in exactly the same mood as when she went to bed.

The upshot of this was that she was out of one of the patio doors as quick as a flash and had the gates not been there (and padlocked) she would have been off. As it was she stood at the bottom hedge calling for the neighbours, telling me not to come anywhere near her and generally being quite a handful. I eventually managed to get her back inside out of the rain and talked her round bit by bit so that by 10 o'clock she was waiting at the door for the bus to arrive, telling me she was 'really looking forward to it'. Roller coaster.

She got back at 5 after a 'horrible day - I hate that place', has eaten a poached egg on toast, a chocolate mini roll and is in bed after a bit of a meltdown over getting undressed and into pyjamas. I think she's very tired because she was talking absolute nonsense and was clearly on target for another huge mood swing. I hope she stays asleep because Betty is coming to Ma sit and I am going out. I haven't been out after dark here for 7 months!

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I did have a bit of a lightbulb moment talking to Glenys earlier - it's likely that the sodium valproate is causing her moods to worsen before beginning to level them out. It is mentioned as one of the side effects on the leaflet (which I neglected to read until this morning) so there's light at the end of the tunnel hopefully.

Wednesday, 9 November 2011

Bathroom flooring and birthdays

So... how long does it take for sodium valproate to kick in? It's been nearly two weeks and we've just had one of the worst sundowners yet.

Overnight was very much an up and downer culminating in me giving up at 5am. However I managed to keep her out of the shower until just after 7. Seeing as we were up bright and early (insert brightly smiling face) I thought it was a good day to nip into Ramsbottom and organise some new bathroom flooring. That done we picked up a few bits in Morrisons and then over to The Lounge for a coffee. Ma decided she was a bit peckish so ordered some toast. I had tea and spent the next 30 minutes assuring Ma that no I didn't want a few chips. Although I suspect that she did...

We hadn't been home for more than 10 minutes when some flowers arrived for me. A huge surprise and all the more lovely for it.

This afternoon I took Ma to the hairdressers for a wash and blow dry then home via a brief stop at Mave and Vic's. The restlessness started at about half 2 and by 4 she was in full flood with all the usual stuff. It is now 17:37 and she's just coming out of it. She's in bed with a ham sandwich and a cup of tea. I am utterly wrung out.

However the wine is just open and I'm off to enjoy the utterly underwhelming #hippyquiz and the rest of my birthday. Cheers m'dears!

Tuesday, 8 November 2011

More Tuesday stuff

We've had a major sundowning this afternoon. It lasted for well over two hours and hadn't really ended when I finally helped her to bed at 6. The desire to go to bed gets earlier and earlier too, today it started at 14:10 which is just not going to happen. I've struggled with a dodgy tum for a couple of days so really didn't fancy going out anywhere today. Although, it doesn't seem to make any difference. Days when we do go out and days when we don't, appear to have a similar effect on her behaviour later in the day. Plus 'wearing her out' by taking her places often makes things worse not better, these days she really can't cope with trips which take longer than a couple of hours at most, including travelling to and from.

On a good note, her appetite seems to be fairly stable at the moment. Not huge by any means but I do generally manage to get a range of foods inside her every day. I'd be happier if she drank a bit more but compared to how she was when she came out of hospital, it's much improved.

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

Take your trousers/pyjamas off before putting your pyjamas/trousers on.

It's the television. It isn't real.

Peter isn't coming this week.

Which 'thing' is that?

It's the television, it isn't real.

No you can't have alcohol at 8/9/10/11 am.

Why is this here? ('this' varies as does 'here' ie incontinence pad in the fridge/slipper under the pillow)

No I don't want to get into bed with you, thank you.

Please try and focus on the happy times you had together.

It's the television, it isn't real.

If you go to bed this early you will be up in the night. Yes you do. Regularly.

Well that made me laugh (sorry Barry!)

We've been watching tv this morning, negotiating away from news bulletins has meant a fair amount of turning to the jewellery channel for soothing views of incredibly naff cheap-but-bigging-it-up jewellery.

Half past ten brings This Morning which is very popular - she's especially amused by Gino for some reason and doesn't find him the least bit annoying. Most bizarre. Anyway one of the items today was a couple who have adjusted to Neil becoming Nicola after 20 years of marriage. I'm not about to comment on that (I don't have a problem with it, for the record. Each to his/her own is my motto) but about halfway through Ma became convinced that Neil/Nicola was, in fact, her social worker Barry. No amount of telling her he wasn't made a jot of difference, so I'm posting this to prepare Barry for the moment when Ma asks him why he isn't wearing a dress...

Monday, 7 November 2011

Back on Planet Bizarre

Hello - we're back. I've had a lovely weekend away and got back just before 11.

Ma was pleased to see me but the minute my brother had driven off we were back to normal - she wanted to phone Mavis. Luckily, because I'd spoken to Mavis about this last week, she was expecting to have Ma this afternoon because I was due at the hospital this afternoon. So after Ma put the phone down I only had to put up with 'Are we going now?' for an hour before dropping her off. I wasn't sure if I'd managed to lay to rest her fears for my safety having to drive all of 4 miles to the hospital, because of all the news footage of the horrific crash on the M5, but I did my best.

I went to my appointment and did a bit of emergency shopping and was back at Mavis's exactly one hour later.

I could tell from Mave's face that Ma had been worrying all the time she was there and in fact when we got home there was an answerphone message from her saying (clearly in front of Ma) 'Hello, you are going to think I'm bonkers because I know where you are but your Mum is convinced you will be there so hence the reason for this call...' So pretty much as soon as I arrived back Ma wanted to go home.

It's now 16:55 and I've spent the last 45 mins telling Ma she really can't go to bed yet. She's sitting under the heated throw which is on at full tilt with a bit of a face on her and I'll consider it a victory if we make it to 18:00 but hoping to pull my trump card and offer sticky toffee pudding and custard in about 10 minutes time...

Back to reality with a bang then!

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A couple of photos from my weekend:




Early morning November sunshine


New hair cut

Friday, 4 November 2011

Time Out again

How lucky am I? Another weekend off.

Normal service resumes on Monday - be good and enjoy your weekend!

Thursday, 3 November 2011

Eh well

So much for mood improvement.

She was not happy about going to the day centre this morning, admittedly not as bad as she has been in the past but there was some sobbing into hands etc. I was getting a bit anxious as 10:15 came and went without any sign of the bus and was beginning to think that she'd been dropped from the list on account of the switch to a different centre in the near future, but at about 10:25 it arrived. Lee apologised and on seeing Ma's mood said cheerfully that he'd had a morning of it already and that's why he was late. It must be near to the full moon then.

I didnt do much all day - a bit of shopping, a bit of cleaning, a bit of ironing, a bit of snoozing, pickled some eggs... that sort of thing.

When she got back this evening she said she would not be going again. When I said that she probably (ahem) would be going next week refused to eat any of her tea, sat with her arms crossed and her eyes closed for about 20 minutes and then went to bed just after 5.30. I helped her into her pyjamas but she refused to clean her teeth or say goodnight.

This could now go one of two ways - she will sleep through because she is tired and clearly upset, or she'll be up a lot because she is tired and clearly upset. I'm hoping the new meds will keep her in bed but there's no guarantee. This morning she wanted to know where everyone was - everyone being all the people who had been sitting on her bed during the night having a chat. Either she was dreaming or hallucinating or the house is far more haunted than I realised. Then as we were watching Daybreak declared that the 'girl over there' would be going with her to the day centre.

I'm sure Theresa May had more pressing engagements this morning.

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My friend Jon who blogs at http://weneedtoothpaste.blogspot.com/ about caring for his mum who has dementia has been interviewed for his local paper:

http://yfrog.com/z/od1swnj

He is working so hard to raise awareness for carers and dementia and deserves more followers on his blog. Please go along and have a read :)

Wednesday, 2 November 2011

A pondering sort of Hmm

I think the new meds might be slowly kicking in, today is the first day on morning and night.

I can't honestly say that her behaviour has been greatly improved (sorry!) but there are glimmers that it may well do so over the next few days. No doubt just in time for Peter when he takes over on Friday evening.

We've had less tears and I'd put her behaviour at about a 7 on the Skipton scale, unlike the other day when it was an 11. She gets very involved with any tv programme which isn't really a problem other than I can't always tell if she's talking about real people or soap characters. Not that this is any different to a large percentage of the population now I come to think about it...

The biggest problem today has been me! The GP has put me on amitriptyline for my pain problems and I'm not dealing with it very well - today I've been so sleepy it has been a real struggle to keep my eyes open. No fun. It's wearing off now but I don't think I'll be taking any more, I doubt I could drive into town never mind 150 miles down the motorway on Friday if I feel like this. I'll stick with the tramadol and paracetamol double dip and deal with it for the time being and maybe reconsider next week.

Tomorrow is day centre day. I'm hoping she will go without too much drama and trauma, but go she will come hell or highwater. I have plans which involve pjs, Food Network and dozing in my new bed.

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I've been pootling in the kitchen again. A spot of pickled red cabbage and an attempt at creating a low-carb souffle. The souffle turned out rather well, if I do say so myself. I used quark instead of making a panada, adding cooked, pureed cauliflower, mustard powder, cayenne, s&p, grated cheddar, crumbled gorgonzola and three egg yolks. Folded in the egg whites whisked to stiff peaks and cooked in a bain-marie for about 55 minutes in the top oven of the Aga. It didn't rise quite as much as a classic souffle but it did look the part. It was very light and fluffy and quite delicious. A keeper. Will try it with other veg purees in future.

Cauliflower cheese souffle

Pickled red cabbage

Tuesday, 1 November 2011

Much Improved (for a while)

A far better day today although there were tears first thing. I told her we didn't have time for tears today and it seemed to work!

First thing I wanted to make some pickled courgettes (last lot - red cabbage - tomorrow) but needed some mustard seeds so scooped her off in the car to Tesco. We were only out for about 20 minutes but it did seem to perk her up a bit. Then I made the pickled courgettes and some snowflake biscuits for the dementia cafe. Annoyed I used a Nigella recipe though - I swear any sweet baking recipe of hers is always a cock-up. This time I need to add more flour to make a pliable dough instead of something resembling cake batter. And when I say more flour, it was very nearly twice as much as the recipe stated. However, the biscuits were very pretty, especially after I sprinkled them with edible glitter.

All that done we set off after a ham and cheese toastie for the dementia cafe. Ma had a great time chatting away, the biscuits were eaten and I got an invite to a girls' chilli night. Then off to the hairdressers where Ma was transformed and looks so much better.

Back at home she requested chips for tea, which I have duly made and while I was in the kitchen I had to make a couple of phone calls.

Ma now sitting opposite from me refusing to eat her chips, hand over her eyes, dry sobbing because she thinks I was talking about her on the phone (in fact I was talking to Tesco online about the food delivery for the children which is due this evening) and because she 'doesn't know where anyone is' ie she hasn't had any visitors. Any second now she will tell me she's going to bed.

It's a shame because we've had a lovely day compared to yesterday.

Courgette pickle

Snowflakes

Monday, 31 October 2011

Awful day

It has been a truly awful day today. Constant crying, accusations, allegations, threats of suicide, calling for my dad, crying over and kissing his photograph etc.

I dont really feel like posting anything else. Sorry.

I just hope the medication starts working soon.

Ah well

Ma was up in the night and had a fall. I nearly broke my neck running downstairs. I managed to get her up and she was fine.

This morning she remembers falling but doesn't remember me picking her up. She is in a foul mood and there have been lots of tears. I am gradually realising just how much damage I did to myself - I appear to have sprained three fingers, thumb and wrist on left hand, sprained my right ankle and my back and neck are really stiffening up. Bugger.

Made some piccalilli though :) (I always forget just what a very messy job it is)
 

 Piccalilli
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Sunday, 30 October 2011

Morning All

We had a really good night. Ma slept through until 7 (which is effectively 8 for Ma) and my new bed is bliss on a stick.

However this morning... after giving her porridge in bed I started the shower going and she followed me into the bathroom. That was when I noticed she was wearing the wrappers from two incontinence pads on her feet. When I asked why (I know I know, but it's a normal reaction to ask these things) she said she wanted to 'keep my little feet ok in bed'. My suggestion that perhaps if she'd kept on the socks she went to bed in it would've been more effective was met with a blank stare. Then in the shower she wasn't able to wet the flannel and use the soap, just stood to the side of the water and rubbing away with a dry flannel. Instructions such as 'stand under the water mum' lead to her looking around but ignoring the raging torrent two inches to her left. Without physically manhandling her under the water it is very frustrating to deal with and I'm not about to start pushing her around. Apart from anything else, that leads to violence from her and I have to say that I would hate to be pushed around too so completely understand that reaction. Eventually we managed to get her under the water and using the soap and flannel properly but then teeth cleaning proved to be a challenge when you use the wrong end of the brush, then putting on her clothes etc.

We are now sitting in the lounge and have just started the daily ritual of who might be coming to visit. We've done both Peter and Simon at least 15 times already but now started on any and every person she can think of - quite a few of them don't have names and all appear to live 'up the road' or 'you go along then down and round'. Saying that it's Sunday and people usually have plans is a waste of breath. I've suggested going out for lunch but that's not good enough she wants visitors. I'm not ignoring her exactly but neither am I responding very much in the hopes that she will move onto something else eventually.

I think we will go to the supermarket shortly, I want to make some more chilli jelly and perhaps do some piccalilli so a pootle for supplies would be nice. Then while we are out perhaps we shall have some lunch somewhere.

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We've had a maudlin day today with an awful lot of tears - glory but it gets a bit wearing at times. Lunch out was vetoed so I cooked a small roast dinner which she did actually eat, much to my surprise, but she's been trying to go to bed since 2pm. This is mainly because no one has visited and therefore the tv is boring, music is too loud and I had the temerity to make chilli jelly in the kitchen. (she was with me in the kitchen of course but I was still doing it on purpose).

It is now ten past six and she's just had a small crustless ham sandwich and her night time meds. She's about to put on her pyjamas (on her own - could be interesting) then I hope she'll watch a bit of tv before going to bed.

** Just checked and no she hadn't put her pyjamas on, she was in bed fully dressed - including shoes. When I made her get up and sort herself out she couldn't take off her trousers, tried to put her pj top on her legs...

Tomorrow I'm making piccalilli. Makes a note to wear a wetsuit. Last year all the turmeric and mustard powder ruined my clothes - I'm a very messy cook.

Chilli Jelly

Saturday, 29 October 2011

Meh...

Some days it is really hard to fire up the blogging fingers. Sometimes I feel that there isn't much to say, you've heard it all before or I'm just feeling overwhelmed by everything and can't put fingers to keyboard because it will just be another whinge about how difficult Ma is and how I deal with her. I really hope that that isn't why people follow this blog. I try to pick out the best bits of the day, good or bad, to highlight the way it is.

Today's post will be a mish mash.

So today has been a day of trial and trial, but all in the little things of life. Ma knew I had a bed being delivered today (on account of the fact that we looked at them yesterday and I couldn't get her off the one I picked!). From 8am she was already thinking the delivery service was rubbish because it hadn't arrived added to the usual thing about when Peter is coming (NEXT WEEK again every 10 or 15 minutes) meant for a slightly teeth grinding morning.

Getting dressed and showered is a list of instructions. Some are followed, most are not. It is a constant battle between enabling (sp?) and taking over.

The bed arrived at midday. I was slightly disconcerted that the £39 delivery charge included me helping the delivery man shove the mattress up the stairs and definitely means that I will be in a lot of pain tomorrow. Even typing this hurts. Sigh. EDS is crap. But I have a lovely bed, the bed of beds.

Ma has been in a clingy mood today which means loo visits etc. are accompanied. It really is like having a 5ft tall, 81 year old toddler.

I made chilli jelly tonight and it looks so beautiful. I think I will have to make some more. I must admit that I've just realised that I can do some serious chutney/preserving stuff now that I'm unemployed. I did some when the children were small, but now I have the time and could preserve the entire country. Blissful smile.

Ma is on the new meds from tonight. I hope I hope she will sleep through but I fear I will be up at 0 Dark Hundred Hours because the clocks go back tonight.

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More later possibly.