Hoorah!

Hopefully Christmas is now sorted. The home must come and do an assessment of her needs, which they will do on Dec 7th and then hopefully we'll get the go ahead. I've booked her into a home a few miles further away than the local one, albeit not very much further away just in another health authority. A lovely place, it felt right from the moment I walked in through the front door. I suspect it's a bit like choosing a school in that you get a feel for a place and how it will suit your child/mother.

I know that the day centre have found her behaviour becoming more challenging in recent weeks. Emma took me aside the other day to suggest perhaps organising some support during the car journeys. In fact the morning journeys are usually ok, Ma doesn't tend to rev up until around 11:30, but the return can be a bit fraught. It's definitely easier since I started putting her in the back but I fear for the window winder which she pulls and strains on constantly trying to open the door. Emma is worried that they are being a bit unsupportive by happily waving me off with Ma on my own after the team have had a tricky day with her. It hasn't been a huge issue so far but I dare say it could become one in the future.

Healthwise she's fine at the moment. My biggest problem is an old friend - getting her to eat enough. Because she talks constantly it is quite difficult to get food into her sometimes plus she will not sit down for any length of time. So a lot of the time it's a case of literally trying to get food in as she's passing. Finger foods are now becoming a bit of an issue due to the fact that she'd far rather try and push a sandwich through the door lock or down the side of the sofa than eat it. It's no wonder the dog isn't losing weight despite not eating much of her dog food...

I still find random things in the loo (14 clean flannels this morning, oh joy) and a new behaviour and one which I really dislike is licking her fingers before touching things - the tv, the windows, the cushions anything and everything. It reminds me of that awful thing mother's used to do of spitting on a hankie before wiping your face. I have never forgotten the smell of it *shudders*

The third day at the day centre is definitely a massive help for me. Now we only have four full-on days, two of which are over the weekend which does make a difference for some reason. I do still get massively stressed out by all the things mentioned above but those days certainly help.

~~~~~~~~~~~~~~~~~~~~~

Lots of blips to catch up on but due to the new whizzy gadget at the top of the page I no longer need to stick a link in here :)

A disappointment and a major change in my viewpoint

Barry contacted me last week asking if he could come and see Ma. Nothing unusual in that and one that is guaranteed to please her. Despite the grip of dementia she does still remember how to flirt :) I was pleased that he was coming because I had things I wanted to discuss.

He arrived with some fudge because it was my birthday bless him, such a lovely thing to do. Then told me that Spurr House will no longer accept Ma because of her challenging behavior so the respite week I'd booked over Christmas is no longer and I have to try and find another place for her in a home which offers specialist EMI care. There's one home about 10 mins away which does offer the facilities needed so I'm off to have a look at it with Joani on Weds, she's not only a lovely friend but also works in the dementia field and is invaluable when doing this sort of thing.

Barry also stated that he wants Ma to have a Nursing Care assessment which would, should it be successful mean that her care needs would be paid for via the NHS. And the potential for a huge financial burden to be lifted.

I have been advised by family members and friends over and again to request an assessment for continuing healthcare funding via the NHS. Should the assessment be in our favour this would mean that Ma could go into a home with a specialist dementia care facility. I talked to Barry about it on Friday and he is happy to run this alongside the Nursing assessment. I'm not sure that Ma will qualify for it yet despite her challenging behaviour but I am willing to try.

I vowed that I would not put her into care but her behaviour is becoming so difficult to deal with that I am happy to admit that I was naively optimistic. She is violent, not all the time and I hope I haven't given that impression, however her repetitive behaviour really is extremely challenging to anyone's sanity.

Then again we have just done two giggling choruses of 'Goodnight Sweetheart' whilst waltzing to bed, so it's not all bad.

Not at all.

On trying to finish writing the next cook book

I am sitting here trying to finish writing another book in the 'Little Book of Low Carb...' series. I've got a legion of tested recipes to write down and one would think seemingly endless hours in which to do it. Unfortunately after a day of Ma wrangling my brain is too knackered to think about anything more arduous than what will happen next on Corrie or who is due to go out of Strictly. During the day there are other obstacles.

[me] 'Right, time to get the aubergine recipes written up...'

[Ma standing next to me] Forrityporritybaabaadidderybiddipydooo...

[starts typing] Aubergines are really useful for lots of things - for porridgey (what?!?) no no not porridgey for potato! a potato substitute...

[Ma bends closer, speaks louder] Borrityporritynerrilyferrilywinderynoonoolerryferryberrytorrityta...

Repeat (for hours) and fade.

~~~~~~~~~~~~~~~~~~~~~~~~~

Someone asked me earlier if Ma was channeling Dr Seuss. Frankly after 12 solid hours of it I am seriously considering channeling out my own ear canals with a chisel.

Feeding her tonight was an impossible task because she would not stop. She's had a reasonable amount of calories today, albeit on the run and snuck in here and there when she drew breath. Quite a lot of it she spat out again in a rage, but you can only do what you can do. My secret weapon of choice at the moment is a hot chocolate made with milk and double cream and a bowl of little chocolate bits (Whispa Bites, Giant Buttons etc.) which she will pick at - and also stuff in her pockets but I hope that's so that she can eat them later and not for me to wash accidentally. Some hope.

Changing her pad and onesie ready for bed wasn't much fun either. Three bites, five punches, knocked off glasses, many kicks and countless slaps later she is now moving the all the dining chairs into the hall. I have given up. I'll move it all back when (if) she finally goes to bed.

~~~~~~~~~~~~~~~~~~~~~~~~

It's looking like today's blip will be one I took this morning of some contrails in the sky. Nope, not proud of it at all really but it's all I've had a chance to take. Still quite purty though.

Much rejoicing

As from tomorrow Ma will be going to the day centre on Thursdays too. This means three days a week which is wonderful. I know it's only one extra day but it makes such a difference. I still have to take and collect her because of her behaviour but I don't mind if it gives me another four hours off.

I've been away for a long weekend in Northumberland which was really great, staying in a huge country house and cooking for 13 lovely ladies. Simon came to help and I would have been in a bit of a state without him there quite frankly. The weather was glorious and we managed to get out and about to see Cragside and some of the coast. Beautiful. (pics on Flickr)

Naturally Ma went into respite. When I collected her the staff mentioned that she had been a bit aggressive towards some staff members and also to a couple of the other service users. This means that they will now have to talk to Barry regarding her stay over Christmas and I really hope this won't affect her being able to stay. I suspect that sometimes the environment is a bit too stimulating and hope that they will be able to find somewhere in the home which will be more calming for her.

I'm sure I've got more to say but Ma is being a bit distracting atm. Hopefully I will remember to update this later...

~~~~~~~~~~~~~~~~~~~

My Blip yesterday hit the Spotlight page - always thrilling :) It was my 300th consecutive blip which still amazes me. Only 65 more to complete my 365 challenge.

A bit of a non-update

The lack of updates recently has a lot to do with the fact that there's not a lot to report. Or put another way, things are not much fun right now but I doubt you want to read endless posts of me whingeing.

Ma is deteriorating in little steps at the moment. Her speech is becoming more and more difficult to interpret and although she can still 'hold' a conversation of sorts when asked direct questions the rest of the time is filled with nonsensical ramblings. Unless she is asleep she literally does not stop talking. It is exhausting. Other things such as feeding her self or having a drink can be very hit and miss too. She doesn't understand the concept of using a tissue to wipe her nose but will happily use anything else that is to hand...

She is still in constant motion too and will move absolutely anything she can get hold of. The dog lead was in the loo the other day and someone began to suggest that I need to keep everything our of her way but then realised that this is pretty much impossible. So I spend a large amount of my day following her around, putting things back. Unfortunately the suggestion to leave things where she puts them in the hope that she will then move them back again doesn't work!

The violence is also an issue. Now a daily occurrence, it's not much fun being punched repeatedly by your mother. She has also punched a couple of members of staff at the day centre, so at least I know it's not directed at me personally. You do start to wonder sometimes.

We had 12 days of her in her onesies (because she was unable to go to the day centre) and not a single incident in all that time. Last Tuesday was her first day back in normal clothes and within 10 minutes of being washed and dressed I was on my hands and knees scrubbing the carpet, the walls, the furniture and Ma. I admit that I did cry quite a bit.

All of these things are distressing and upsetting and each little step takes her further and further away from the person I knew. It fosters emotions you know are not appropriate but it's hard not to feel annoyance or anger or even, at  times, hatred. But then you just have to get over yourself, shove the guilt into a cupboard, stick a smile on your face and get on with it.

So...

It would appear that the new medicine isn't having the much hoped for effect now that she's had time to get used to it. It only took a couple of days before we were back to 'normal'. I'm reluctant to continue with the increased dose because it doesn't stop the constant wandering and moving things but does make her more unsteady on her feet.

Also this week she's had a funny sort of cold/virus thing which may or may not be a UTI. The upshot of that has been no day centre and some increasingly bizarre behaviour. When the Locum GP came to see her she was immediately in full fluff mode. He was somewhat nonplussed when she greeted him with 'Oh hello darling, aren't you beautiful?' I told him he was lucky, she normally tries to kiss her social worker.

This morning is pretty typical we've had constant door trying and banging since about 5am mixed with clothes removal as per usual - thankfully the onesie idea does keep most of her covered even though she pulls the legs up as high as she can and bunches them in her groin. Plus of course plenty of other random behaviour - blowing her nose on a honey sandwich, putting the hoover on the sofa, cushions on the kitchen floor, bits of junk mail carefully placed on tables/window ledges/loo seats etc. Everything is moved with complete concentration and determination, there's nothing you can do to stop it so just have to move things back again once she's done. Often so that she can do it all over again... But if I don't put things back the house would be like Steptoe's yard in no time. At the moment she has taken off one shoe and sock and is determinedly trying to put other things on her foot. So far she's tried a tissue, the instruction leaflet out of my iPod nano box, a sheet of jumbo bubble wrap and the dog's squeaky duck. Then yesterday I had a hell of a beating around the head trying to stop her falling over. One new behaviour I've noticed is a sort of little knee bounce between each step.

In all honesty Tuesday and Wednesday can't come quickly enough, twelve days straight is just too much without a reasonable break. I have managed to take the dog for a walk a couple of times when H has been around but a few hours stitched together would be nice.

~~~~~~~~~~~~~~~~~~~

Some nice blips recently in and amongst. I like this, this and this :)

Possible improvement

The dementia team came to see us on Monday, naturally Ma was incredibly fluffy. After a long discussion the doctor has changed one medication and increased another in the hopes of reducing her aggressive behaviour, the hallucinations and her agitation. We are three days in and it seems to be having a relatively positive effect and as there haven't been any falls I have added in the second dose this morning.

The upshot of that was a calm and stress-free trip to Tesco earlier. It was raining so I got rather wet farting about with the wheelchair/Ma/wheelchair trolley scenario but other than that it was relatively easy, I managed to injure less people than last time and we didn't have any shouting or slapping from herself. It did amuse me that every time I stopped the chair and walked round to put something in the trolley Ma said with complete surprise 'Oh hello Darling!' and when we got to the till I realised that she'd been quietly taking a bite out of each mini doughnut...

She's just had a cup of tea and a Jaffa Cake mini roll and is now dozing in the chair. I'd call that a successful morning.

Maybe more later.

My ears aren't burning, but they are definitely ringing

Yesterday was a no-show for Ma at the day centre. She wasn't poorly, just in the sort of mood which would have made the journey there too hazardous and I'm not willing to risk it, so she stayed at home and was moderately difficult and a bit slappy all day.

I was contacted by a journalist from the BBC's programme Inside Out wanting to talk to me about being filmed for a programme on elderly care and especially in my case a multi-generational family with one member acting as carer for an elderly member. This came about because I answered a tweet request for carers to answer some questions for the money section of the Guardian and was quoted in the article (which I only realised yesterday!). Inside Out want to come and do 'a few hours' filming. I am going to say no I think because it will affect Ma enormously and massively disrupt our routine for days. Plus I've been on tv once and utterly utterly hated every second of it.

She was in a better mood this morning - death threats aside - so off we went. I dropped her off as usual then went and had my 6 weekly treat (a pedicure). Bliss. Due to my apparent inability to operate a mobile phone I managed to miss all the calls and most of the text messages from Julia (the BBC lady) and feel a complete idiot. I put the phone on silent during my pedicure because the constant beeping and pinging from texts/emails/facebook upates and tweets doesn't make for a restful time and then forgot to put it back to normal. Abject apologies will be proffered tomorrow.

Collected Ma at 3pm. Several staff gave me 'that' look as I went in. You know, a slightly wide-eyed mixture of exasperation and sympathy. It seems that she was segregated with a member of staff on a one to one basis because she insisted on removing her clothes constantly and was aggressive when the staff tried to put them back on. Obviously they can't have her behaving like that in front of the other 'service users' (new one for me) because it upsets them. Getting her in her coat was a battle even before we got her to the car. One member of staff said she didn't know how I coped on my own and another said she felt sorry for me. As you know, I'm usually fairly matter of fact about it all but I must admit I very nearly cried at that point.

We put Ma in the back because the child locks are in place and that proved to be a good decision. I won't go on about the journey other than to say that although she couldn't get the door open she did manage to poke me in the head with the umbrella and wind the window down and then got soaked for her troubles - it's rained all day here.

Since coming home she has been a handful. All that has happened today has obviously wound her up so putting her in her nightclothes resulted in a barrage of slaps (hence the ringing ears!). She is now in bed.

I really hope she stays there.

Well it was only a matter of time.

A bit of a teary start to the day for me. It's G's 19th birthday today and I'm sad he wasn't able to stay another couple of days to celebrate it here and it would also have been Pa's 84th birthday so also sad about that, to the point where it has ambushed me on and off all day.

Of course Wednesday is the second of my non-duty days so off we skipped this morning and Ma went into the centre for a cup of tea and some toast perfectly happily without a backward glance. I did fiddly town-based things like going to the bank and buying cat litter then decided to forgo breakfast and come home where I failed magnificently to persuade H to go out for lunch on her last day before starting college.

So I had a sad lonely ham salad in front of Floyd's Fjord Fiesta which is a complete swizz because there wasn't a lot of Scandinavia cookery going on - Thai red curry and Moroccan kebabs anyone? - followed by some hoovering etc.

Then at about half three the phone rang.

As you've read on here, Ma can be really aggressive when she wants to be. Mainly when she's being asked to do something she doesn't want to do. Clearly this afternoon she did not want to be installed on the bus in her wheelchair. Cue slapping the staff across the face and removing her clothes down to her skin. The upshot of this is that from here on in I will be taking and collecting her from the centre. This effectively cuts my time off to four and a half hours. Right this second it's not easy to be philosophical about it if I'm honest. I'm sure I'll get over myself eventually but allow me a few days of sulking first please.

~~~~~~~~~

A couple of nice blips for you here and here plus the happy news that I've passed my OU digital photography course :)

Perhaps it is time to join the local photographic society and start learning how to do it properly...

Back in the room

Hello, been back for a week but not had much chance to post an update...

We had a lovely time in Cornwall - even though the travelling was pretty horrendous - and H's GCSE results were excellent, so a good week all round. Peter collected Ma from respite and looked after her for the Bank Holiday weekend. We got back on Tuesday, H enrolled at College on Thursday and George arrived with his g/f on Friday. So busy busy busy.

Having G here has been lovely, I do miss the boys dreadfully, but the change has revved Ma up a bit. She's been on a door opening/clothes removing mission from the moment she gets up until she finally (finally) falls asleep. With added middle of the night wanderings to boot. She's also still pretty aggressive when prevented from doing things which may harm her so I get roundly slapped etc. on a fairly regular basis. I'm a bit wary of trying a trip out after the IKEA episode but maybe if the weather is nice today we might tootle over to Boundary Mill for a change of scene. George and Fran are off to Leeds today to see Phantom so that means a midnight trip to Piccadilly station to collect them later, then they go back to Devon tomorrow.

More later maybe...

***KLAXON*** 40,021 views!!!!

Good Lord. Thank you so much for dropping by :)

~~~~~~~~~~~~~~~~~~~~~

A few blips I'm pleased with: this, this, this and this spring to mind :)