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

Sunday, 29 April 2012

Saturday into Sunday

As Friday's blog was a bit long I thought I'd update in a new one.

Yesterday was ok food wise and once again we had difficulty getting her to stand for transferring in and out of the wheelchair but during the afternoon she spent a lot of time standing up and then sitting down again. This morning she was halfway to standing then changed her mind and nearly dislocated my wrist as well as my hip when she sat down again without warning. In revenge I fed her two Weetabix laced with double cream. I'm such a bitch.

She dozed for most of the morning off and on and so far this afternoon we've had more standing up and a dogged determination to wipe her nose on a slipper. I've developed a strategy for the constant talking and asking me questions ('Are you going to the fray? Did you need are you? It's down there is it, the froo? 'Can you floll this after you now? have just been asked in the last minute while typing this), I usually answer with 'Yes, probably'. I really want to be able to tell her what she wants to know but it's impossible to work out what that is. There's no point in asking what she means, because she doesn't know herself.

Another change in behaviour recently is the rapid switch between being able to drink out of her cup one moment, then not, then able again. The not episodes need monitoring carefully because that's when entire cups of tea/Fresubin/Movicol end up down the side of the sofa.

Simon has taken to calling us Lou and Andy because he's convinced that the second I go into the kitchen to make a cup of tea Ma is free-running or roller blading down the avenue.


Pretty blips yesterday and today

Friday, 27 April 2012

Weekend blog 27/04

We appear to have settled into something approaching a routine at last. I get up around half six, check on Ma, make a cup of tea, ring H to make sure she's up and do as much housework as I can while Ma is still in bed. The carer arrives at 08:30, gets her up, washed and dressed and wheels her into the living room. I give her a cup of tea and organise meds and some breakfast (a Fresubin drink and an egg mayo sandwich today, followed by some Whispa chunks!). She settles in the chair and dozes in front of the tv until lunchtime. After lunch (homemade veg soup with grated cheese) she gets a bit feisty in the afternoon, often standing up as if to walk off then sitting down again over and over. I figure it's a bit of exercise if nothing else. I've started taking her hands and walking her around the lounge a bit when she gets too agitated. Naturally she talks constantly throughout the day and I do have to ask her to hush occasionally, especially if I'm on the phone when it can be very distracting. Trying to organise the incontinence service with that level of wittering going on in the background is really difficult. More like the incoherence service. She has her tea at about six (shep pie and a horlicks tonight), the carer arrives at 18:45 and she's usually in bed by 19:00. She then sleeps through until I go into her in the morning. I have to say that the sleeping thing is absolutely wonderful, everything is so much easier to cope with when you've had a decent night.

There have been a couple of worrying trends in the last day or so. Halfway through eating her tea this evening she stopped, looked down, picked up her slipper, examined it minutely then tried to take a bite out of it. Yesterday she did the same thing with a piece of screwed up kitchen roll she was using as a tissue.

The other thing is a reluctance to stand. Despite standing and sitting over and over for half the day! When you ask her to stand she refuses and gets upset. Once up she doesn't seem to be able to straighten her legs. I stress that this is only when she's asked to do so, if she's going under her own steam she seems to be fine.


No plans yet for the weekend. I'd like to take her round the block in the wheelchair but the weather has been a bit awful - not sure if you've noticed?!? Perhaps we'll have a jolly jaunt somewhere instead. I might see what Auntie Peg is up to.


Mavis is such an inspiration, getting on with things in her own way. I've suggested going out for a coffee next week on Tues or Weds afternoon and she's up for it, so that'll be lovely. I do check on her every day and try not to be too clucky because I know she wouldn't appreciate it.


Some nice blippage yesterday and today and I've also broken the seal on my OU course ready for next week. Exciting times.

Updates over the weekend, as and when.

Thursday, 26 April 2012

A small catch-up

Just a quick update to let you know that all is fine. Ma is eating reasonably well although she does still have her arsey days and bar the continual talking and questioning (and subsequent bleeding ears by 6pm) she seems quite happy and contented. This is the second week of two days at the day centre and that seems to be going well plus the carers coming in is an absolute Godsend, making things a bit easier for me.

I've quite lax about updating in here and also owe quite a few people replies to emails but this week has taken its toll emotionally with Uncle Vic's funeral on Tuesday so I'm given myself a couple of days off but promise to catch up with it all tomorrow.


I'm still blipping though. Believe it or not, I sold a few photos today and made £30 for the Dementia Café. Go me. (quietly thrilled tbh).

Saturday, 21 April 2012

Weekend Words

Yesterday was chilly and showery so I really didn't feel like another wheelchair marathon. We stayed at home instead and had a fairly quiet day, I did a bit of housework-type stuff and Ma dozed in the chair.

When she isn't dozing she talks. Constantly. Most of the time she is talking back to the tv but also responds to me when I'm talking on the phone or even just talking to her invisible friends. But talk she does. There is absolutely no doubt that she is much easier to live with now than she was eight weeks ago, but my goodness the constant talking doesn't half get to you at times. Joani called round this morning with some forms for me to fill in. She is an experienced carer who is now working for Making Space who run the dementia cafés and even her eyes widened a bit when we were trying to have a conversation with Ma chipping in at every turn. I got the snorty giggles at one point because I really am that horrible I'm afraid.

Foodwise Ma is still eating reasonably well and it is a real pleasure to see. I've poached a chicken this morning so in a mo I'll go and make some soup with the stock and cobble together something else with the rest. Even though the meat is really soft and succulent I will have to mince it up for Ma otherwise she will chew on one mouthful for ever and ever. Irritating for me and unpleasant for her. I'd lay a bet on a shepherd's pie type of effort.

More later.


Loved my blips yesterday and the day before


Now addicted to Draw Something. Add me :) I'm Ladygeeza.


Huge thanks to Esther for tweeting a link to the blog the other day, the stats exploded and gave me hours of excitement.

I really need to get out more don't I?

Thursday, 19 April 2012

Left arm in, left arm out.

A good start to the day. No repercussions from yesterday's tummy problems and a whole Weetabix and strawberry Complan (boak) consumed.

I had a hospital appointment at 12 so started getting us into the car at 11:15. The next few hours went like this:

Ma into wheelchair.
Ma out of wheelchair and into car.
Wheelchair into boot.
Drive to hospital.
Wheelchair out of boot.
Ma into wheelchair.
Attend appointment.
Ma out of wheelchair and into car.
Wheelchair into boot.
Drive to Tesco.
Wheelchair out of boot.
Ma into wheelchair.
Strap vast wheelchair trolley on.
Create carnage in Tesco, sweeping all and sundry aside.
Ma out of wheelchair and into car.
Wheelchair into boot.
Shopping into... oh... shopping onto back seat.
Return vast wheelchair trolley.
Drive home.
Wheelchair out of boot.
Ma out of car and into wheelchair.
Ma into house.
Ma out of wheelchair and into chair.
Shopping brought in.
Feed Ma.
Inhale codeine and paracetamol.
Apply pjs.
Fold wearily into chair.
Wait for Pointless.

Ma complained everytime she was in the open air for 30 seconds and I got extremely damp. There may have been a small amount of swearing from one of us.


At clinic:

Michelle: Hello Bee, how are you?
Me: Fine thanks.
Ma: You get a prev. A PREV! You get this thing. Two wave lan.
Michelle: I just need to re-calibrate your machine and give you this new mask to try
Me: Oh thanks that's great, does this mean I'll lose the 'fell asleep face-first in a shoe' look?
Michelle: *laughs*
Ma: Hmm. Go to the retend. For a swoo. Thank you darling. If I can get in there lovely, yes thank you. Please.


I'm used to it, but bless her Michelle didn't bat an eyelid.


So we have a bath lift but we can't use it until the carer supervisor has been to make an assessment and then she will have to put in a request for a change of care plan. Of course the assessment cannot be done until some unspecified time next week.

I'm amazed Ma was able to sleep in her bed last night without a triplicate care plan request after equipment services added raisers to her bed yesterday

Is it any wonder that the country is going to hell in a handbag?


Nice bit of blippage today

Wednesday, 18 April 2012

Busy days

The day centre visits started up again yesterday so we were up early. Kay had her washed and dressed and I fed her some breakfast all before 9 o'clock. And then we waited for the bus. And waited.

Thankfully it did arrive eventually, but not until 10:30. So this morning we were less frantic and did everything at a more measured pace - but we're stilll sitting here waiting for the bus!

She was tired when she got home last night and really didn't want to eat anything much. A few spoonfuls of fish pie and a mouthful of Fortisip was all she could manage.

However since coming home she has slept solidly all night, every night. Such a big change from 8 weeks ago. The alarm people are coming to do an assessment re bedside pressure mats etc. but I'm not convinced that we need one at the moment. I can hear every breath and mutter on the baby monitor and that really does seem to be enough for now.

*update* Alarm people just phoned to say they'd double booked so now coming on Friday pm.


A few things:

Asda value flannels are brilliant. They cost next to nothing and sail through a boil wash without shrinking.

Vanish Oxi Action Extra Hygiene appears to deal with everything I throw at it (not sure how it will cope with my beetroot/t shirt carnage last night but we shall see...)

Ma can't cope with a drink in one hand and a slice of toast in the other. The *toast* was too hard to bite this morning.


My dandelion blip the other day was a massive hit and scored me loads of stars and favourites - deeply thrilling. Back to down to earth with a bump yesterday - horrible weather meant an indoor shot. So I did this . Goodness only knows what I'll do today...!


Well there you go, don't count your chickens. The day centre rang at half 12ish to say that Ma had an upset tummy and needed to be collected. Unfortunately I needed to wait for equipment services to arrive with the bath thing and some bed raisers so didn't manage to get there until the buses were leaving, so actually needn't have bothered racing over as soon as I could. Turns out she had one episode this morning and nothing since but neither has she had anything to eat or drink all day.

She's now in the chair, tucked under a blanket drinking Dioralyte. Albeit reluctantly.

Monday, 16 April 2012

Returning to normal

Slowly and surely we are returning to something approaching normal. Obviously some things have changed, and not all for the worse.

One thing that hasn't altered is talking back to the television. Yesterday Captain Von Trapp got an earful for not listening when he was offered a digestive biscuit and today it's Delia's turn. In and amongst there's still the odd moment of stubborness - she is eating considerably more than she was it's true, but every now and then we have a bit of jaw clampage when offered food or drink.

This afternoon she was insistent that she needed to be somewhere and attempted to stand and walk without help (I made it across the room in time, but only just!) a compromise was reached whereby I brought in the walking frame and she stood in front of the chair for a while before deciding that she wanted to sit down again.

Naturally the carers think she is lovely, true to form she goes into super-fluffy mode as soon as they arrive! However, overall she is generally much happier and more content than she was eight weeks ago and therefore much easier to look after.

This week we start back at the day centre - Tuesdays and Wednesdays - I think she will enjoy it once it becomes familiar. It's a shame she'd barely started there when she fell, but hopefully we can get a nice long run at it now.


Food etc. so far today: Weetabix with chocolate Complan, sheherd's pie and carrots, Fresubin, tea, coffee, slice of toast.


Very very pleased with my blip today.

Saturday, 14 April 2012

First Day Back

Not a peep out of Ma all night. She slept right through until 7ish when I heard her coughing a little so went in to see how she was. She declined my suggestion to get up, dropped off to sleep again and then stayed asleep until the carer arrived at 10.

No bath hoist yet so Jeanette did a strip wash for Ma and I put the bedding on to wash. Washed, dressed and settled she ate the best part of 1.5 Weetabix mixed with a whole sachet of Complan for 'brunch' and had a cup of tea! This evening she's had a small amount of corned beef hash and an entire Fresubin nutrition drink. Astonishing. And really encouraging.

This afternoon we have listened to some Glen Miller (which got her foot swinging even though her eyes were closed), had a little nap and we are now watching Wall-E. There's still some confusion with the TV where she's talked back to the weather presenters and seems to want to put her cup in there, but other than that and some blanket bundling it has been a pretty calm and restful day.

Mobility-wise she is able to walk with a fair amount of help although she doesn't really want to, communication-wise she talks almost non-stop but finds verbal instruction difficult to follow.


When organising the care package with Barry and Bernadette, they were of the opinion that one carer would be sufficient for Ma's needs. I am slightly uncomfortable with the fact that almost immediately this morning it was suggested that she needs two. I honestly can't see that it is necessary, if I my joints weren't so dodgy I'd easily be able to manage. I have 'suggested' (for that read stated firmly) that perhaps we need to see how she does over the next few days as she's only just back home and needs to settle in. I am slightly fed up with people cavalierly spending Ma's money.


Carer on seeing bathroom (not tiny by any means, it is just the shower which is a bit cosy and therefore makes showering Ma difficult, hence bath hoist): Oh. Have you considered a wet room?

Me: Have you considered the cost?

Best to lay your stall out early I find.


Pretty blip today :)

Friday, 13 April 2012

Unbearably sad

Uncle Vic passed away yesterday. I am almost unbearably upset and feel as if I've lost my dad all over again. He stood shoulder to shoulder with my dearest Pa as one of the loveliest men I've ever known and I will miss him such a lot. He was kind, gentle, funny and told the most wonderful stories. Genuinely a true gentleman.

This is the fifth death in the family in the last four months. Just too much to handle really.


Taking H to the station in an hour and then off to bring Ma home. More later.


Well, she's home and already had a cup of coffee! I am delighted. She seems happy and content and talks almost constantly although it's anyone's guess what the topic is...

We had a dodgy hour or two when it looked as though she wouldn't be able to come home due to the care provider giving back word. This would've meant her being shunted to yet another home until probably Tuesday. However Barry managed to sort it and I collected her at 5pm.The care package won't start until tomorrow morning but I'm sure I can manage until then.

It is now 18:50 and she's showing no signs of wanting to go to bed yet.

What a difference to two months ago.

Tuesday, 10 April 2012

Getting ready for Friday

A good meeting this afternoon at Bankfield with Barry and Bernadette (I do love a nice bit of alliteration). However the nicest thing was how much brighter and more responsive Ma was today. When she saw Barry she was utterly delighted. I know she doesn't know who he is but she does know that she likes him! She also called me by name at one point which was lovely. And the very best news of all is that she has gained a kilo.

All the way through the meeting she was telling us a tale about goodness knows what but she was really quite animated, alert and content. A really lovely thing to see. I have no idea why she was so despondent yesterday but thankfully she was a world away from that today.

Mobilisation-wise she is doing really well, we tried her with a zimmer frame and although she's a bit reluctant to get out of the wheelchair, once she's up she's fine. After a chat with both B and B we've agreed on a Friday return even if the bath hoist won't be in place. However, the pressure mat alarm next to the bed should be and a referral to the District Nurses in order to get various supplies will be. We are also looking at one carer morning and evening (with a bit of help from me) which is a massive improvement on how she was before she went back into hospital. At that point it looked as though she would need two carers. Naturally these things need to be fine tuned once we are up and running but it's all looking hopeful and positive.


Only two full days left with H. I'm already getting emotional about it. However as I will be dropping her off at the station on Friday and then collecting Ma from the home I won't have a lot of time to sniffle self-indulgently.


H calls: Muuum where's the Vimto??

Me: Er... *shifty* I drank it

H calls: WHAT??!? Go to your room!!

Me: I'm already IN my room duh!

H: Well... go out of your room then go back in again....


A pretty Spring blip

Monday, 9 April 2012

Monday Monday

I sincerely hope that everyone else has had crummy weather like we've had here today! Wet, wet and more wet.

H and I have had a mostly lolling sort of a day until we went to see Ma this afternoon. When we arrived she was in the lounge in front of the tv, eyes closed. It took a couple of attempts to get her attention and then keep her focussed. She was chatty enough (eyes closed) and was telling me that everyone was getting on a plane and going on holiday, but she wasn't sure where. She looked at Harriet when I prompted her but there wasn't any real reaction.


I've taken down the photograph on here after a critical comment and 'like' were made on Facebook. I did consider very carefully the ethics of what I was doing before posting the photo and didn't and still don't think that they were disrespectful or voyueristic in anyway. I thought they were poignant and quite beautiful. However, the idea that I may have inadvertenly upset anyone is not something I want to be responsible for.


There wasn't anyone in the office this afternoon to ask about her weight/eating/drinking but I'm meeting Barry there tomorrow so I'll ask about it then.

Sunday, 8 April 2012

Easter Sunday

A good day to enjoy a double celebration: 30,000 views and the 1st birthday of this blog. A huge thank you to everyone who follows it and offers support and encouragement when I'm feeling a bit overwhelmed, I appreciate it more than I can say.

It is sobering to think that only a few weeks before I started the blog Ma was still driving. The rate of her deterioration has been lightning-fast. If you have the time, it pays to go back and read it from the start. When I do that I am astonished at what I have forgotten and how much things have changed.

Not a lot to report on Ma at the moment really, she's calm and settled at Bankfield and eating a little. Not drinking anything much though still. I took her an Easter egg even though I knew she wouldn't understand what it was or what to do with it. I admit that I half hoped she might after she called Mavis by name the other day - Mave and I looked at each other in astonishment! When we arrived Ma didn't make eye contact or acknowledge her in any way but during conversation when M said to Ma 'We used to have some fabulous times' Ma said 'We did Mave, didnt we?' I was so pleased for Mavis and she was delighted.

The staff took care of the egg and promised to try giving her some with her tea.

I had intended to take my camera with me today but forgot so will try and remember tomorrow now!


Quite a few blips to catch up on. Having photographed flowers for what seems like forever, I now appear to be in my 'garden bird' phase (although not today). Having just ordered new seed, fat balls and live mealworms, I feel I have to warn you that this phase may continue for some time to come... More birdie blips can be found here .

Tuesday, 3 April 2012

Tiny Tuesday Top-up

The funeral yesterday was a bit of an emotional overload for me but I got through it without disgracing myself.  Well not too much anyway and Harriet was with me so that helped enormously. It was an affectionate and respectful send off, she would've been very pleased and also delighted to see some old work colleagues there along with staff from both of her nursing homes. It is a sad truth that you often only see distant relatives (geographically, not emotionally) at funerals. Maybe it's God's way of easing the grief a little.

Not much change Ma-wise to report. She is still being fed in a quiet area away from the main dining room which seems to be helping although if you listen carefully to what isn't said, she clearly still doesn't eat very much. I had an email off Barry this morning to say that her stay has been extended until Friday 13th April but as yet I haven't been able to find out why.


I'd like to say hello to some new followers who've popped up in the last few days. Waves at Japan, Isle of Man, Russia, Germany, Ireland, Austria and Spain. Thank you for stopping by.


No fabulous blips to link to. I'm lacking in inspiration at the moment and need to get my mojo back. Normal service will resume as soon as I've found it :)

Sunday, 1 April 2012

More sad news and a quick update

Ma's brother, my Uncle Ernie, passed away on Friday morning. He has also suffered from dementia for several years but it was still an enormous shock only seven days after Auntie Anne. If there is one small mercy for Ma it is that she doesn't understand what has happened and is spared the extreme distress this last week would have caused her.

We have such fond memories of Uncle Ern and our holidays in Paignton, both when I was small and when my children were too - the toupée incident, tea on the beach, sunshine and Beverley Park Caravan site. Happy days.


I haven't blogged because I managed to do a secret ninja raid to North Devon for Lulu's Christening. Lovely to surprise Ed and Hayley and see the Grandies - especially Lulu of course, the star of the show :)

I left Ma happy and content at the home, she is eating a little which is fabulous news and although now only 38kg am hopeful that even such a tiny amount of food might slow the weightloss a little.

Heading back again today with H in tow for the Easter hols and Auntie Anne's funeral tomorrow.


Well... what else was I going to blip? :)