I couldn't put it better myself

Through the wonder of Twitter I have come into contact with so many people who are connected to dementia in one way or another, a wonderful virtual support network.

One of the people I've met is the lovely hippyjon who's mum is following the same path as Ma. Jon had a little rant last night on his excellent blog We Need Toothpaste and I would like to share this rant with you.

http://weneedtoothpaste.blogspot.com/2011/10/feel-in-need-of-little-rant.html

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A little story about last night.

Because it was nice and warm in the living room I suggested Ma put her night clothes on in there rather than in the bathroom. Strictly was on in the background.

Oh I'm not getting undressed in here!

Why not? It's much warmer than in the bathroom

Yes but *gestures at tv* I don't want all those people seeing me in the nuddy!

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It's 3:15 and we are in the throes of a Mexican standoff.

Ma is having a bit of a moment, we are about an hour and fifty minutes in. It started when I got back from a 5 minute trip to the Co op for some bits. I'd been away too long and she was worried about me. This then became her wanting to go home - a current obsession and not unusual for dementia sufferers. It can often mean where they grew up or another time in their lives which they remember with happiness. This has gradually moved on to the 'no one comes to see me' bit culminating in her deciding to go and visit the neighbours.

Now it is raining heavily and steadily at the moment, she intends to go out in her slippers and is sobbing and sniffing. Of course I'm not going to let her go out either in this state or in this weather and it's not really fair to disturb people at this time on a Sunday afternoon. However she's trying everything she can think of to get me out of the house so that she can go off. I've deflected suggestions to go and do some shopping, go back where I came from etc.

I don't hold out much success of getting her to eat the meal I've been cooking or the banoffee pie I've just made.

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There I go making assumptions again. She's just eaten chicken, carrots, leeks, cheesy broccoli and roasties followed by a wodge of banoffee pie.

In her overcoat. Naturally.

Banoffee Pie

New Thermals

After taking the dog for her very early post-op check up (and being fleeced another £15 for four more antibiotics) I took the opportunity to pop into M&S when they opened for some of their new season thermal undies for Ma. She's spent the day in thermal undies and two layers of fleece and STILL has to sit under the heated throw. Mind you Lily wasn't complaining...

The conversation this afternoon mainly revolved around a friend who has recently died, naturally this has upset Ma and brought back memories of Dad so quite a difficult few hours, but managed to persuade her to eat two hot dogs in a finger roll for her tea. She's now watching Strictly. Well I say watching, mostly she talks to Bruce and the judges and keeps asking me who people are. Mind you I've just discovered she does do a very funny impersonation of Chelsea Healy.

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05:05

Hello??

Hello Mother

Are you awake?

I am now

Oh ok. I'll leave you to it then

(whimper)

Friday fun

The hot water bottle obviously worked last night because she didn't get up at all. This didn't stop me waking at every creak and groan thinking she was, however. And would probably explain the most amazing bags under my eyes which have developed since I moved up here.

As it is Friday she has to take the alendronic acid tablet. This means she has to stay upright for 30 minutes before eating or drinking anything and has to take it with a full glass of water. The only issue we have is with the water. Ma hates drinking water so the 8fl oz I gave went down like sulphuric acid. I've seen toddlers shudder less at being forced to drink neat lemon juice. (What?!? Oh, give over, they loved it really and it was hilarious).

So tablets done she headed for the bathroom. In all honestly after that she really needed a shower but her legs were shaking so much I was worried about her falling so we did a swift flannel wash instead and I suggested she went back to bed for a while. At the time I thought it was probably because she hadn't eaten very much yesterday but after a conversation with Betsy who had a similar reaction this morning, I suspect it may have had something to do with the flu jab.

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Unexpected problems with the bank and sorting the (bloody) lasting power of attorney which should have been in place two weeks ago meant having to organise somewhere for Ma to go in a hurry. Mavis and Vic stepped into the breach once again, God love them.

Raced into town, did the bank stuff. Popped into Primark and bought Ma two sets of fleece pyjamas, Wilkos for bird feeder peanuts and hair fixings. No hair fixings but not the end of the world.

When we got home at about 4pm I showed Ma the new pj's. She was a bit sniffy but within 10 mins she was stripping off and putting them on, trousers on arms at first naturally. Coupled with the fluffy dressing gown I bought her when she went into hospital she looked like a fluffy elf sitting on the sofa.

Tinned fruit and Kelly's Clotted Cream ice cream for tea and in bed by half six.

One of our better days.

Day Centre Woes

We had another disturbed night resulting in me having to be a bit firm about staying in bed and going to sleep at around 4am.

Up, dressed and breakfasted and within half an hour of the bus arriving I casually started getting her ready to go. When the penny dropped all hell broke loose. Tears, mutinous refusal to put on a coat, she was ill, would I ring David and Glenys and tell them where she would be, where was Peter, my father would be appalled at what I was doing to her etc. etc. I stayed calm (she really knows how to push my buttons!) but firm and when the bus arrived with heels dragging, sobs and backward glances she went.

As I closed the front door I heard her say to the driver 'Oh I remember you! You were really nice to me.'

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With the rain and wind lashing against my bedroom window, a warm duvet and Food Network on in the background I slept.

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I was quite apprehensive about how she would be when she got home, with good reason as it turned out.

A repeat of last week really, with the zimmer frame thrown in my direction and a slump into the chair in tears. No sign of the tea I'd paid for though but at least this week I haven't had to peel a ham sandwich off my head. She told me again that she was ill, that she would not be going back there ever again etc. I've repeated over and again quietly and calmly that it is good for her to go out and meet new people, it is good for her to have a change of scene, it is good for her to have some new stimulation.

However, she has calmed down more quickly this week and is now pointedly not eating chicken soup and toast - barely 45 minutes after getting home. Conversation is very confused and I dare say she'll be in bed before long.

More later perhaps.

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Well it just goes to show - never assume. She has finally given in and gone to bed after watching Eastenders. Well, I say 'watch'. Obviously this was another sucks boo to you moment because she was nodding off all the way through.

Time for bed then Mum?

No not yet I'm watching this

Oh ok, only it's nearly 8 o'clock and you are usually in bed by half six

Pffft! I don't think so!


***

*gets into bed*

Brrr! It's cold!

I'll get you a hot water bottle

Oh no don't bother, there's no need

Well, no point being cold and if you're all warm and cosy perhaps you'll sleep properly and stay in bed all night?

Oh shouldn't think so...


I'm contemplating an Eastenders quiz and a padlock. Vindictive? Moi?!?

Getting dressed

 

The mood this morning was so toxic that I felt it better not to interfere and let her get on with it and the picture above is just after she had refused breakfast for the third time. The body language says it all! Even the walking frame is being used as a barrier - normally she leaves it in obscure places. She did eventually eat some porridge but hasn't eaten anything else yet today. I'm not sure how she managed to get the fleece on just one arm with the zip fastened but the entire ensemble (vest, nightdress, trousers, fleece, pants) had to be put in the laundry at midday and into the shower she went.

After the shower she was very jittery and couldn't get herself dressed so I helped her then took her soiled clothes to the laundry basket. Back in the bedroom and there she is in bed again... Mavis and Vic called round just after three, stayed for an hour but were equally unable to prise her out of bed.

She is now up and will be having (a delicate portion of) new potatoes, steak and kidney pudding and blue cheesy leeks in about 10 minutes and then I'll do my best to keep her up until a reasonable bed time.

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I had great fun playing a short story game on Twitter today, it reminded me of the days when I used to do a lot of flash poetry online and probably should start doing it again. It definitely stretches the creative muscles.

Tomorrow is 'club' day (thanks Sue!) and I desperately hope she will go. All week I've had everyone referring to it as a done deal - when you go etc. - so I'm hoping it has worked. If she does then I plan to go swimming and possibly check out Aqua Zumba, although as Isabel suggested this does sound like it could be a euphemism for ritualised drowning.

(edited for speeling)
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Keeping her up until a reasonable time lasted almost exactly 30 minutes. This doesn't bode well for overnight.

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Hello????
Hello Mum
Are you getting up yet?
Nope it's nearly 11 o'clock, time for bed.
Ohhh why haven't you been already, you need your sleep.
Because it's just bed time now.
Is it? I've been asleep all night.
You need to sleep for a bit longer though. Until it gets light outside.
Yes ok. Will you leave me some things? I need them for my lips.
A cup of tea?
Yes that's it.

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Another Tuesday

We are definitely going through a morning phase of tears and tantrums at the moment. Today was no exception and took the best part of four hours to get her up, showered, dressed and fed and she needs help with every part of that ritual. Making sure she takes her tablets properly or combing her hair is hardly arduous but the washing/shampooing/tooth brushing etc. takes some doing without her using after sun to wash or spraying deodorant in her hair. Getting dressed is still an obstacle course but by laying out clothes for her at least guarantees a reasonably sensible outcome. Then she needs reminding on how to use a knife and fork properly. But on other days she will breeze through some of it without any difficulty so then if I get involved I get into trouble!

The tears continued until 2pm today. Enervating for both of us.

The thing that makes you so weary is the constant repetition - both from her and to her. Without instruction she is lost but neither can she follow even the simplest of verbal direction. An example: there are two sofas in the living room placed at right angles to each other. Her zimmer frame was to the side of the junction of the two sofas where one walks between them to go in and out. As she set off for the bathroom I told her to take her frame. She stopped. The frame was at her right hip with one sofa facing her.

This? *points at cushion in front of her on the sofa*

No. Your frame. It's next to you.

This? *points at cushion again*

No next to you, there. *I point at frame*

*takes a step forward. Tries to use the sofa as a walking aid*


She really doesn't understand the television anymore either. Several times over the last few days she has tried to insert things into it or believes that someone is talking to her - Alan Titchmash and Vicki Michelle were discussing my dad this afternoon apparently.

We've been to the GP this afternoon where he gave her a flu jab and has confirmed that we have an appointment with the dementia team on the 28th.

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I've done a lamb thing for this evening. Let's call it Fragrant lamb with cashew nuts. Basically, cubed lamb, onions, garlic, ginger, a bit of chilli, lamb stock, 3 cloves, cinnamon and bay leaves in the bottom oven for two hours. To this I will add a carton of coconut cream, and some lightly fried diced courgettes and cashews. And possibly some chopped coriander and/or parsley. It smells lovely.

Edited to add: Make this. It was beyond delicious.

Dementia Cafe Cook Book

This is a shameless appeal.

The Dementia Cafe is run by volunteers for sufferers of dementia and their carers. We meet once a month for coffee (and sometimes biscuits!) and either a fun activity like music and movement or for a talk or sometimes both. It provides the opportunity for sufferers to gain some much needed stimulation and contact with other people and gives the carers a safe place to talk to others who completely understand the issues we deal with and to share advice, experience etc. The wonderful Rachel has gathered a group of people together and produced a cook book to raise some funds for our little cafe. The recipes were road tested one day when folks descended on the community centre armed with whisks and spatulas, then everyone sat down and ate the results!

The book contains 12 recipes. Each recipe is in there because it is or was connected in some way to the world of dementia, either a sufferer or a carer. As I type this I've just realised that I don't know how much we are selling it for! I think the suggested donation is around £2.50 but will check that and correct as necessary.

If you would like to buy a cook book, or make a donation please email me at beeeze@gmail.com

Thank you

Hmmmm

Do you remember a post I did a few weeks ago about 'sundowning'? I rather think we are suffering from 'sunrising' at the moment. It is now 10:25, we've been on the go since 06:30 and Ma is just coming out of a terrible mood. Pretty much identical behaviour to yesterday.

It started in the usual way with her calling for me. When I got downstairs the overhead light was on in the bedroom and she was lying in bed, the duvet clasped under chin and dry-sobbing. She refused a cup of tea mainly by ignoring anything I said. As I had to take the dog to the vet for dental surgery this morning and there was no way in hell I was going to get her up and into the car in time, I left a cup of tea by the bed and locked the front door behind me. Luckily it only takes half an hour to drop off the dog and get back by which time the cup of tea was still warm (and full). However, the sobbing had stopped and she decided she needed the loo. I'll gloss over that bit but I fear that supervision is going to be required from now on and I've removed the waste bin to avoid further confusion about things. (worships at the altar of the latex glove god).

Getting dressed is becoming a long process. It's been clear for a while that she needs help and monitoring but as she is currently going through this grumpy independent phase, I have to do a delicate balancing act to help her get her clothes on in the right order/right-sides-out/right way round. This morning she couldn't process the instruction to take off her pyjama trousers after I realised she'd done the now usual thing and put her normal trousers over the top. I got her to take off the normal ones:

Now take off the pyjamas

Yes ok *picks up other trousers*

No, take off the pjs first

Yes ok *attempts to put on other trousers*

Take off the pink ones first Mum

Yes ok *looks at other trousers, tries to put them on*

Etc.

She also seems far more confused in the mornings at the moment. She needed the loo so I put the bathroon light on for her. The bathroom is directly opposite the bedroom but she couldn't find it. When I said I'd put the light on for her she walked to the answerphone and pressed the flashing light.

She's now happily sitting in front of Homes Under the Hammer with a coffee and a biscuit. Any minute now she will start asking me who is coming to visit etc. She's asked me several times already where Peter is.

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More later no doubt.

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So it would seem that having 'funding approved' for respite care actually means 'we will send you a letter afterwards asking for photocopied proofs of income, capital and expenditure of your Mother's financial affairs and then I will calculate how much you need to pay towards the cost of her stay. If you don't do this within two weeks you will be charged the full cost of your stay. Currently £475.00 per week.

If I'd known this, would I have gone away? No. Do I have all the relevant paperwork. That would be a no. How stressed and distressed do I feel right now. Well have a guess.

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The dog is back from the vet with a Hollywood smile, 5 teeth fewer, but the dragon breath has gone. Not sure how we'll strip paint from now on but that's a minor inconvenience next to being able to breath normally instead of panting and hanging out of windows.

I took Ma with me but left her in the car. This meant going back out every couple of minutes to reassure her I was still around because she gets panicky if she's left for any length of time. Even this relatively short journey (4 miles) is enough to confuse her. Roads she once whizzed about on she no longer recognises.

Naturally the dog now has anti-inflammatories, antibiotics, two types of special food and a toothbrush. She's just had half a tin of Hills special something or other and has fallen asleep in the middle of the floor.

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Things that irritate... I do try, really I do, but some things just set my teeth on edge and I have to be really careful not to bite her head off.

I know she's just trying to appear in control of her surroundings and also make sense of them but asking me if I'm ok every single time I press a switch , lift a cup, cross a leg, change gear, scratch, yawn, clear my throat, stand up, sit down, look out of the window, close my eyes... is one of them.

Sunday

An upside down day today. I was in trouble from the moment I got out of bed at 07:30 because I was tidying up and this made me the cow bitch daughter from Hell apparently ('I loved you, you were so lovely but you aren't now. You're not my lovely daughter' etc. etc. ad infinitum). However it did mean we had all the horrible behaviour done and dusted by midday just in time for Peter's arrival (cue hosts of angels singing).

Without wishing to appear indelicate a current obsession is 'going to the loo'. I believe that she is confusing hip pain with bowel pain and this is why she thinks she needs to be going to the loo all the time. Unfortunately it has also led to her doing odd things such as this morning when she poured baby shampoo over herself to 'help things'. I only realised when I went to flush the loo and found shampoo all over the place. It did however solve the 'I'm NOT having a shower' issue once I'd peeled off the shampoo soaked clothes. Every cloud...

Peter arrived and took her out for a couple of hours and I thought about having a long bath with scented candles. No, of course I didn't have one, I did some ironing and went to Tesco just like any other idiot does when they have a few hours to themselves.

When they got back we had more bathroom antics, this time requiring latex gloves, a nail brush and a sense of humour. Well two out of three isn't bad.

Peaches and cream and some bread and butter for Ma for her tea and she's just gone to bed after watching half of Songs of Praise. Getting her into her pyjamas is always an obstacle course - how she managed to get her trousers back on and her pj bottoms over the top when my back was turned I'll never know. Especially as it usually takes five minutes of verbal direction to get her into just one pair in the morning.

Peter's comment as he left was that it had been an 'eye-opener' for him. Forgive me, but, I'm glad.

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She's just got up for the second time in an hour to tell me how much she loves me.

Another Saturday

After a full night of sleep and no disturbances Ma was fairly cheerful this morning. I gave her her meds and a cup of tea and she went off to the loo. Next thing I heard the shower running! For the first time in months she was able to turn it on, my ghast was flabbered. However she couldn't turn it off again.

She's going through a bad tempered independence stage at the moment so I leave her clothes out ready and she gets herself dressed. This morning everything went on back to front but she didn't add any extra layers for a change. She had porridge and coffee and we watched the rugby. Then went for a coffee with Mavis and Vic. I cooked salmon, new potatoes, carrots and peas for lunch and she ate the lot.

About two hours ago it all started to go to hell very quickly. I honestly don't know what kicked it off this time but there does seem to be a pattern emerging. Usually the first sign is confusion between reality and the tv. Then the tears start and the 'I always loved you' type of comments, followed by threats and accusations and then falling on the sofa or the bed and sobbing. This can circle back several times.

At the moment she will not be in the same room as me because of what I've done (poached salmon? watched rugby? breathed heavily?) and is trying to use the telephone to ring someone, no idea who, she won't tell me only that 'they' will come and get her. Clearly right this second 'they' are welcome to her.

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(16:58) We are now watching CDWM and just like that the storm is over. As usual I am an emotional wreck. Thank God for crap tv tonight - a bit X Factor, Sauv B and a bitch on Twitter will restore my equilibrium.

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Talking of Twitter.... I was chatting on there this morning with one of the wonderful people who give me tremendous emotional support and happened to mention the back-to-front clothes. She commented that it's quite a feat to put everything on backwards and that she's noticed her mother often does things in the most awkward way possible. This struck a chord with me too - I watched her open a new box of tissues the other day. She tried to get in through the end of the box, then underneath. By the time I intervened and showed her how the piece came out of the top the tissues were falling out of every which way.

However, now the new tissues are open I hope she'll stop blowing her nose on the incontinence knickers.