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

Thursday, 29 March 2012


I'd arranged to meet Glen and Lynne this morning to see Ma (it gets complicated but they are Ma's sister's daughters-in-law). Due to the the idiocy of the general public and my promise to do Betty's shopping, I got snagged in the Tesco petrol station grid-lock (not buying fuel, just couldn't get out!) so was a good 20 minutes late getting there.

Ma was definitely much much better than I've seen her for a while. She was 'chatting' with the three of us and was clearly comfortable and content.

However, speaking to the staff it transpires that she ate a WHOLE Weetabix for breakfast.

I know!!

She was in a quiet area without distractions and that has definitely helped. She is just too bloody nosey so tries to follow any movement and also hears other conversations and tries to contribute! Bernadette (manager) said that they would try the quiet area idea again and see if it works.

However she is clean, comfortable and content. I really can't ask for more than that.


Another birdy blip .... I do get a bit fixated on the things I blip, sorry! Makes a change from flowers though :)

Wednesday, 28 March 2012

Midweek Update

Not a lot to report really. Ma is 'fine' apparently although she looks desperately thin to me. She talks almost non-stop and one of the staff did comment that she might eat a bit more if she talked a bit less! Faint hope there I think.

Had lunch with Jon and Sarah yesterday. Jon writes the blog We Need Toothpaste where he talks about caring for his mum who also has vascular dementia. I fed them quiche and carrot cake and we had a really lovely afternoon.

One thing I did want to mention was how a comment made on here recently has made me think. Someone (hi Anne!) said that they were amazed that I manage to find the time to write this in and amongst everything else which goes on. Having pondered on this for a while it's clear to me that this isn't just a safety valve, it also forces me to order my thoughts into something digestible and makes me stand back sometimes so that I can view things with a small measure of emotional distance. However, the most important outcome from all of this is that I have a record of the last year because it is very easy to forget the details, little or large. I do read back over posts I've written occasionally and am frequently surprised at how much I have forgotten and often make myself laugh all over again in the process!

I'm really looking forward to a manicure tomorrow, I've not had one in a very long time and it is a favourite treat of mine.


A birdy blip today. He was very obliging and posed beautifully :)

Monday, 26 March 2012

Beautiful Monday

Such a glorious day today, the sort of day to make your heart sing. I managed some early morning dew spangled blips and enjoyed watching the birds and some truly enormous bees frolicking around - one bee was frolicking so hard it got its feet stuck in Ma's dralon curtains and had to be encouraged to get off.

Ma's tum is still a bit off unfortunately. I don't think this has anything to do with the difficulties the staff are having getting any food inside her, that is purely down to flat refusal and her habit of talking continuously (and/or constantly) whenever food approaches her mouth. I understand that the dietician has been called upon again so I will be very interested to hear the outcome of that assessment. Last week the advice I was given was to put Complan in her food. Which as I said at the time, would've been quite useful about 8 months ago. I'm not sure how else I can put across the fact that she simply does not want to eat.


I've been sent some fabulous old family photos by one of my cousins. He and his brother are happy for me to post a couple of them on here. Ma was such a glamour puss, it's no wonder Dad absolutely adored her. The second one must be circa 1971/2. It may not let me post any more so will save them for another day. If you click on the photo you will see a larger version.
Ma, Dad, Auntie Eileen. Peter in front.

Ma (centre front in purple mini dress), Pa (in brown suit to the right of her with something white in his hand), Auntie Anne (far right), Me (second from left aged about 12 in green suit thing between  Uncle John and Nana, Ma's mother), Peter (next to Ma, crouching - no idea), Uncle Ernie (Ma and Anne's brother, standing behind Auntie Anne, he also has late-stage dementia)

Saturday, 24 March 2012


Yesterday was a very sad day. Ma's older sister who has been on the dementia path for some years died in her sleep. It wasn't unexpected but it is deeply saddening all the same.

Seeing Ma today made me almost unbearably upset. Looking at her you can see that she is following in her sister's footsteps at an almost supersonic speed. She is incredibly thin due to not eating anything much really and no longer holds any sort of conversation which you can follow or understand. She does respond to you when you talk to her (in fact she's very verbal - some things never change!) but she may as well be speaking Icelandic for all the sense she makes. It's not even random words put together, more new words which don't mean anything. I'm not entirely sure that she recognises me all the time, I think she knows that I'm connected to her in some way but hasn't really got a clue who I am, but occasionally she will say my name so not all lost just yet. She has definitely deteriorated in the last 7 days though. Her preferred state is lying down, she clearly doesn't like sitting up and getting her to stand is an almost impossible task.

This new home is ok. Frankly none of them are fabulous but the staff seem caring enough and they do have Jessie, the home's own cat, who loves to be talked to and stroked. Her main carer told me today that they are having trouble getting anything into her (Ma that is, not the cat who is most rotund) and that doesn't surprise me in the least.

She was clearly in pain now and then and the carer (I think she's called Marta, must check that. Very rude of me) said that she's had a bit of an upset tummy. So that needs keeping an eye on.

I'm off to the Trafford Centre with J in the morning to sort out a sartorial problem - the intention is to do a ninja raid when it opens and be away before it gets busy. We will call in to see Ma on the way back.


Blippage continues. It is not beyond the bounds to say that it is saving my sanity, giving me something else to focus on (oh dear, sorry). This is today's and this is yesterday's I hope you like them :)

Thursday, 22 March 2012

Putting the record straight

Phone rings.

'Hello it's Ward 20 here. Are you coming to see your mum today?'

Me: Yes, at visiting this afternoon.

'Oh good. Only the Doctor wants to talk to you about your understanding of your mother's condition'

Me: *blank silence for a moment* Ok. I'll look forward to it.


*ushered into a side room by the Doctor and we exchange niceties*

'So can you tell me your understanding of your Mother's condition?'

Me: Do you mean apart from the end stage vascular dementia?

'Um yes... what does that mean to you?'

Me: Ok. I suggest that we drop the patronising attitude and talk about this like adults.

'I'm really sorry, I didn't mean to be patronising! Let's start again. Do you see your mum every day?'

Me: I should hope so, I live with her...

*later in the conversation*

'She is quite malnourished and was dehydrated.'

Me: yes she is. I have been begging the GP for food supplements for months now.

'Oh and why haven't they been prescribed?'

Me: because they are too expensive.

'Well that's not acceptable!'

Hey ho.... welcome to the real world. We also discussed her needs. I explained that we already have a pressure mattress and cushion and that a hoist has been requested. We talked about getting food into her. I explained about adding extra cream and syrup to her porridge and cream/butter/cheese or cream cheese to mash and veg etc. We talked about the fact that her care package wasn't suitable. I explained that I was asked what she needed and was only able to judge it on how she was before she broke her hip. And suggested that possibly the two week assessment could have been done when she spent three weeks in Spurr House, resulting in a more suitable package.

In the end she dropped the patronising attitude, I let her keep her head attached to her neck and she commented on the fact that I seem to be providing the best possible care for Ma.

I confess that I was ready for a bust up. I'm fed up with being treated like an idiot when it comes to knowing Ma's needs, I spend 24 hours a day, 7 days a week with her and try my absolute utmost to give her the best that I can. The implication, intended or not, that I am lacking in my care for her rankles quite a lot.


Ma is looking much better today. Her colour is vastly improved and she's clearly no longer in any pain. She's due to be transferred to the assessment bed tomorrow so we will see what the next couple of weeks brings.


A lovely teeny toadstool for today's blip

Wednesday, 21 March 2012

Wednesday update

Thank goodness someone bothered to let me know that Ma had been moved to another ward, otherwise I might have walked in and thought something terrible had happened to her. Oh...

Anyway, once my blood pressure had settled down again and I'd made it to Ward 20 - she's much much better today. The awful writhing has stopped so she's clearly in less or no pain, but did sleep soundly throughout my visit. The staff seem much nicer on this ward (far less patronising for a start) and say that they give her a drink everytime they are passing but sometimes 'she doesn't like them very much when they do'. I had to laugh. And empathise, of course.

Various phonecalls today mean that she will now be moved to an assessment bed for two weeks for observation and rehab and a decision will be made regarding her future care package in due course. As one of the possible options is Spurr House I do have to wonder why this wasn't done when she was there for three weeks (at her own expense). Now we have another two weeks to pay for.

Another call was from the day centre offering her a second day. This is fabulous news. So she will (hopefully) be going on Tuesdays and Wednesdays when things are back to normal - or whatever counts as normal on this white-knuckle ride.


Today's blip . The link at the bottom takes you to some pics of Harvey the puppy. Utterly adorable.

Tuesday, 20 March 2012

The News So Far...

She has been seen by the consultant this morning and he has prescribed her antibiotics for a UTI and treatment for constipation. They say she isn't dehydrated (which I find almost impossible to believe) and that there's nothing else for them to do and are ready to send her home.

I've spoken to SS who need to arrange another care package and assessment for  her - which will hopefully include blocks to raise the bed and a hoist for the bath. Seeing as getting a hospital type bed is in rocking horse poo territory and she cannot actually get into either the bath or the shower at the moment. It is also likely to involve two carers at a time which 'may take time to organise'. All this means that they can't just send her home. Thank goodness.

According to the doctor I spoke to this morning, she's eaten some breakfast and had a drink of tea.

I'm beginning to wonder if they are talking about the wrong woman.


The visit to hospital this afternoon was beyond infuriating.

Thankfully Dave and Glen came over to offer some support and also their experience on how to deal with and challenge nursing staff. I am still learning how to do this. Please don't get me wrong, I'm not disrespecting the nursing profession, just not confident on how to get the information you really want to hear.

It transpires that actually Ma was dehydrated enough to need two intravenous bags of fluid overnight and she's 'eaten' when someone passed and remembered to feed her.

She was still in what I would call considerable distress - clutching and pulling at the bedclothes, writhing in the bed etc. Plus her right hand has developed a marked tremor. Her 'dedicated' Nurse told us that she'd been 'fine all morning' which I do find slightly strange. Surely she didn't go from here in extreme distress, arrive at hospital and become serene and compliant only to be shouting and writhing again when we arrived this afternoon?

When we left she was becoming quieter and I hope she slept.

I have to say though that she looks so so so much better - better than she has for weeks and weeks. Clearly the intraveous fluids have made a huge difference. Massive hopes for the antibiotics now.

More tomorrow.

Monday, 19 March 2012

Very Frail

I'm sorry I didn't manage a Sunday update. I'd like to say it was because I was buried under the weight of Mothering Sunday cards and flowers but actually it was because Ma wasn't too good and then Peter arrived in the afternoon.

We had a quiet night on Saturday but Ma was distressed and upset early Sunday morning. I heard her on the monitor at about 5:30 calling 'Please, please' over and over. This usually means that she is in pain so I gave her some codeine and manged to get about 10ml of water down her and then sat and stroked her head until she calmed down and went back to sleep.

There was a bit of a breakdown in communication with the carers yesterday due to the lady who came on Saturday morning saying she couldn't deal with Ma due to her back problems. So Sam came, the girl who had been on the previous mornings, but she had a full list so didn't arrive until 11:20. Once Ma was clean and sorted we decided to leave her in bed because she seemed comfortable and content. Going by her discomfort the day before when she was sitting in the chair it just seemed a kinder thing to do. It is very distressing for her and for me to see her arching her back calling 'Please please' and worrying that the GP has said not to give her too much codeine. I know it causes constipation problems but honestly, when she's like that, it seems irrelevant plus I give her a liquid laxative in the hopes of preventing that happening. She had very little Fortisip and not much more water but by using an eye dropper I was able to get some into her at least.

She slept through most of the day and when Anne came in the evening to get her ready for bed she commented on how much more relaxed and cooperative Ma was.

She's had another quiet night, I heard her murmuring at around 5. When I went in she'd uncovered herself a bit so I put the duvet back over her and she is now sleeping.

She is very frail indeed. The deterioration even from when she came home last Wednesday is worrying and upsetting. As Peter is going to be around until early afternoon we have decided to request a home visit from the GP.


The carers have been. They tried to get her to sit up but it distressed her too much. So she's now clean and sleeping. They have suggested that I need to request a hospital type bed for her if she's likely to be on 'bed care' from now on. That will be the GP's decision I understand and we are down for a home visit at lunchtime.

The dietician has just been. A lovely girl and really not her fault that all her advice would have been incredibly useful about eight months ago.


Thank you for all the emails, text messages and FB messages. It never fails to astonish me just how many people actually read this.

I would point out that Ma is made of stern stuff. We were told six months ago that her sister was gravely ill and all treatment was withdrawn. Admittedly she is now very poorly but she's still with us...

Another update later.


She is now on Ward 7, calm and comfortable.

The GP came and checked her over thoroughly but was of the opinion that she needs to be in hospital due to a bit of a temperature, which would indicate an infection of some sort, and a need to get some fluids into her. Once again, when we sat her up she was incredibly distressed - gripping me very hard (bruises on boobs to prove it oww)  but he couldn't find anything which would indicate an internal problem for instance. To be perfectly honest, I was relieved when he suggested hospital because the whole food/hydration thing is incredibly worrying.

He tried to have her admitted straight off but was told that there weren't any beds so she had to be admitted via A&E and ambulance. Because she wasn't an emergency requiring a blue light call, it would be anywhere within a four hour timeframe. It was actually just under six hours but the ambulance men were so lovely and Ma was relatively calm and settled so it didn't matter.

Oh and, talking about how lovely they were.... they said they would have to transport her via a chair. I warned them that she wouldn't like that one bit, she had already been in extreme distress twice already today because she had been made to sit upright.

They walked into the bedroom, said 'Hello Audrey' in manly tones, lifted her into the chair and she was utterly compliant, to the extent that she was 'almost' flirting with them. My ghast was totally and utterly flabbered.

Once I'd wound my chin off the floor...

She went straight to Ward 7 thank goodness. Very comfortable and relaxed. No real news until she is assessed tomorrow morning and that is likely to be about 10am.

Thank you for all the concern expressed via various networks, I really do appreciate it.

This morning I really thought Ma was close to dying. Now I think she will be with us for a fair bit longer.

A good day after all.

Saturday, 17 March 2012

Saturday/Sunday 17/03/12

A very very quiet night last night, not a peep from Ma. So quiet in fact that I had to check a couple of times that the baby monitor was actually working...

This morning she didn't look too good, very red in the face and was really very warm. I opened the patio door in her room and let in some fresh air which definitely helped, she cooled down relatively quickly thankfully - but I was quite worried for a while. It was clear though that there was no way she would go in the shower or stand to be washed so when the carer arrived she had a wash down on the bed. Getting her dressed and up was quite a challenge especially when the carer said that she wasn't able to do any lifting etc. due to having had an operation on her back last year. I can't say that it really helped me much either and fear that I have actually sprained my hip today, unbelievably painful this evening.

Ma spent the day in the chair dozing for most of it, but when E and P came with C for some afternoon tea she did rally a little bit, especially when E sat and stroked her hand. It is so sad that the two things she says most often are 'thank you' and 'sorry'.

She's had about 75% of a Fortisip today which is a big improvement on yesterday but refused anything else. Getting one tablet in took me nearly an hour this morning. The evening carer, Anne, commented tonight on how strong she can grip when she wants to... we were trying to get her to walk from the bathroom to the bedroom (about 7 or 8 normal steps) when she really didn't want to stand. As fast as we got one hand onto the zimmer frame the other went back to gripping the rail on the loo frame. Then as we tried to get her up she brought the entire frame with her! She may be pretty far down the road these days but she's still as stubborn and determined as she ever was :D

Potato is here tomorrow to see her on Mothering Sunday and I suspect that he will also be taken aback by the deterioration in her over the last 6 weeks.


Today's blip

Friday, 16 March 2012

Here Comes the Weekend...

A much much better start to the day today although a more disturbed night last night. She was quite restless and although she no longer wanders at night she does call out and I can hear her distress via the baby monitor.

She really didn't want to get out of bed this morning and as quickly as we got her sitting up she slipped out of our grip and was lying back down again. We did get her into the wheelchair eventually, but she wasn't a happy bunny. Then because she wouldn't stand up properly we decided that a shower was out of the question and she had a sponge bath. Goodness me, that didn't go down very well. Especially when we needed her to stand up for lower half ablutions. You know that moment when a toddler expects you to do the swing thing, lifts up his feet and you aren't quite expecting it? Thank goodness we we both supporting her when she did it. Both times. And despite her tremendous weightloss she is still considerably heavier than your average toddler!

Clean and dressed I managed to get her to take three teaspoons of porridge and about 75ml of tea. The only other thing she has had today is about another 75ml of Fortisip. It is a constant and desperate uphill battle. The second a spoon or cup or straw goes anywhere near her mouth she clamps it shut and this is the second day she has slept almost constantly. Sheila called round from next door to see how she was and barely got a glance.

However the GP has been to see her today and he was definitely taken aback by her deterioration. The upshot of our chat is that he has taken her off 90% of her medication. The reasons for this are that most of the things she is on are no longer preventing her condition from deteriorating and the physical problems of getting the medication into her causes her so much distress. He has said that he will ask Speech Therapy to come and do a swallowing assessment on her because of the difficulties I have with food and drink but from now on she is only taking two tablets and two syrups plus codeine if she needs it.

I did take her photograph today because she was watching me as I photographed something while sitting next to her. But I can't post it because I find it too upsetting and I have always tried to be as respectful as possible to Ma when writing on here.

I shall blip some flowers for a change instead.


Five Good Things

1. Simon is a genius and his advice netted me £66 on the Gold Cup. First bet I've ever placed!
2. Not having to force tablets into Ma is a relief for both of us.
3. I've been making (low carb/gluten free) mini scotch eggs and blinis for afternoon tea with friends tomorrow. And carrot cake. And scones.... although they are neither low carb or gluten free.
4. The weather is mild enough for me to put my Birkies back on. Got to love comfortable feet.
5. Can't think of a fifth one at the moment. Might come back later on that.

Thursday, 15 March 2012

Blimey! Is it only Thursday?

Last night was surprisingly easy, just one trip to the loo at about 1am. It didnt stop me lying awake until after 3 though unfortunately.

This morning however, things were about an 18 out of 10 on the OMG scale.

Thank goodness for the new carer regime because it did mean that I didn't have to deal with it all on my own. So as I stuffed everything in the washing machine Sam had Ma in the shower. Once she was clean and dressed and sitting in her chair we played 'let's not eat anything by not opening my mouth' and 'don't be ridiculous, I've never been able to drink through a straw' so food, drink and medication wise she has had almost nothing.

The Ocado delivery arrived. Goodness me but they are a lot nicer than any other supermarket delivery service. I had a text message telling me my delivery time, the name of the driver, the name of his VAN and his registration number... When he arrived Clive was really helpful and pleasant. A definite big tick for Ocado.

Then two members of staff from the care providers called in to do an assessment on Ma. I took the opportunity to nip to the chemist for some products I probably should've bought in before Ma came home but unfortunately I hadn't anticipated needing them. Whilst I was out they had her walking up and down the lounge with her zimmer frame! Since they left she hasn't stood or walked on her own for me and I'm slightly worried/horrified by how much moving her in and out of the wheelchair is making my back/hip hurt.

In the last hour or so she has clearly been in some considerable discomfort so athough the GP is coming to see her tomorrow, I rang the surgery and arranged for some better pain relief than Calpol. Getting the tablets down her has been a challenge. I'm still not convinced that they actually did go down but am assuming that they've dissolved in her mouth because I can see already that she is starting to relax.


A very pretty blip today.


Five Good Things might be a bit of a push today but here goes...

1. I have discovered Ocado
2. Leftover saag aloo and chicken rogan josh for lunch - magnificent
3. I do love watching Pointless
4. Even the grimmest of starts doesn't mean the whole day will be the same
5. Sometimes a cup of tea is a thing of beauty.

Wednesday, 14 March 2012

Normal Service Resumes

Well today is the day.

I shall be collecting Ma sometime this afternoon once the equipment has been delivered.

I can't deny that I'm quite apprehensive about it, mainly due to the fact that even the nursing staff at the respite home have struggled to get Ma to take her medication. The GP has only issued one drug in liquid form so the rest can take several hours to administer.

Simon was an enormous help over the weekend - moving and removing furniture and wielding the vacuum cleaner - so that I am now able to move her into the back bedroom where I've put a single bed base ready to receive her special mattress this afternoon. It's a lovely big sunny room with patio windows overlooking the garden so I hope she will like it in there.

The battle to get Fortisip prescribed in larger batches than 10 bottles continues (2 a day soon hoovers that up). Apparently she saw the dietician when she was in hospital, over a month ago now, and it is plain to see that she has lost even more weight since then. I rather suspect that the GP is going to get quite a shock when he sees her. A nasty little part of me hopes so if I'm honest.

So a big update later today along with a new daily challenge Five Good Things if you follow the link you will get the bonus of also being able to see some fabulous blips from Rach.


My blipping has continued during the time away from here so quite a bit of catching up to do if you are interested. This is today's - hitting the back arrow on the left of the blip will take you to the others.


She's home and now in bed. Getting her in and out of the car/wheelchair was a bit like feeding an octopus through a letterbox but I'm sure it will get easier once we've done it a few times.

I tried to get her tablets down her but it wasn't hugely successful, another thing which will take some getting used to I suppose. However, she seems quite content, calm and was happy to sit in her wheelchair in front of the tv. Well, ok, fall asleep in her chair in front of the tv. The dreadful anxiety she had before she fell seems to have gone completely - absolutely no attempt to get out of the car or chair at any point.

I managed to find a baby monitor today with a built-in night light so hopefully I'll hear her if she calls in the night. An early night for me too I think as I go back to sleeping with one ear open.


Five Good Things:

When I did my hair this morning I managed to look less like a reject from Prisoner Cell Block H for the first time since having it cut.

I am sad enough to find doing my first Ocado order quite exciting.

The Vicar made me laugh like a drain this afternoon as usual and told me he's put my name on the list for a day retreat at Mirfield in July.

I love my Emma Bridgewater pint mug because it makes drinking gallons of tea so much easier.

The birds are all over the feeders at the moment. I can lose a lot of time just gazing out of the window watching them squabble and strut.

Wednesday, 7 March 2012

Coming Home

The meeting yesterday was helpful and useful. We discussed what was needed at home before she is discharged from respite, organising that will delay her return until Monday at the earliest. Getting help with her care takes time to set up and there are a few bits and bobs of equipment to be delivered. I've expressed my concerns about getting her to take tablets and am prepared to do battle with the GP for liquid versions where possible if necessary. The fact that they are expensive to prescribe isn't really my concern.

She was bright and chirpy yesterday, although possibly more pleased to see Barry than she was to see me! Clearly she has no idea who he is but has always liked the company of men so he's on a bit of a winner there. I can't claim that she follows a conversation properly or makes much sense when she's talking but she does react cheerfully enough and was quick to pick up on a conversation happening outside the lounge area. So nothing changes then *wry smile* I'm very hopeful that the dreadful anxiety problems we had before she fell are now a thing of the past although it may just be that she's become slightly institutionalised and this will return when she's home. Certainly when she thought she was coming home with me and I had to tell her it would be another few days she seemed quite accepting and didn't object at all.

The wheelchair is a great success - clearly both very useful and very necessary and I left her sitting in it at the dining table, poking at her food.

On that subject... still not eating very much at all. She now weighs 6 and a half stone and does look very very thin in her face and hands. She wasn't sent out of hospital with any Fortisip or similar and the home requested a prescription from the surgery and I collected the second lot of 12 yesterday. Another thing the GP is not prescribing willingly. My cousin David, on the other hand, is falling over the stuff. His GP can't precribe enough for him.

I'm beginning to feel the need to roll up my sleeves and get the hobnail clogs out.


Quite a few blips to catch up on. I'm really pleased with the one I took today  but there's a few to flip back through if you have a fancy. No stress if you don't.

Sunday, 4 March 2012

Catching up

All in all it has been a bit of a week.

Phone call on Wednesday to say that they thought Ma had had a TIA early evening. Her eyes were open but she was unresponsive for a couple of minutes before 'coming to'. It certainly isn't the first time this has happened and is, of course, a part of vascular dementia. It is quite likely that the majority of her falls are as a consequence of a small TIA. Once she had come to she was fine again.

On Thursday the home phoned at around 8:30pm to say that Ma had had a fall. This time though it was due to her thinking she could get up out of her chair and walk unaided. She landed on her bottom (not a hip), didn't appear to be in pain and in the time it took for them to ring me she was happily fast asleep.

It seems that taking her off the Zopiclone has consequences other than giving her the ability to feed herself her breakfast.

*buys long on Duck Tape and Velcro in anticipation*

Seeing Barry on Tuesday regarding plans for getting Ma home.


H drew a picture of E's alpacas Rhubarb and Crumble:

And I photographed a cobweb or two.