Goodness me

In the first 120 hours after Ma went into hospital, I slept for over 95 of them. I think that says that I needed a bit of a rest.

She is settled on the ward but there have been some changes. Social Services have had a bit of a shuffle around so now Ma has Chris, a CPN, instead of Barry. I don't suppose it will make a lot of difference to her other than the fact that she won't flirt with Chris (female). I'm not happy that they are giving her Risperidone, I wasn't willing to give it to her when she was at home and I'm not happy that they are giving it to her in hospital. However I am attending the ward round on Monday am so I will be asking questions.

One thing that is without doubt, she will not be coming home before Christmas. I am fine about this actually, obviously I will go and see her on Christmas Day/Boxing Day (and multiple days in and amongst) but having had to cancel the respite care I had booked I was hoping that she would be staying in hospital. Harriet deserves a nice Christmas.

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Two years today since Dad passed away. Still miss him every single day.

Unexpected

Ma was admitted to hospital on Friday for nursing and care assessment and a full drug re-calibration. It's been a busy 24 hours and I need to sit down and give myself time to think about that I want to put in here.

However she is fine. Has settled well on the ward and is content I think. I saw her this afternoon and she clearly didn't know who I was, I tried to get her to sit with me but she wasn't interested. The nursing staff are astonished that I've been caring for her on my own.

It's odd really, I still don't see it as a problem despite all the stress, just something you do. However, as a lifelong member of the low blood pressure massive having to go for another check on my blood pressure on Tuesday suggests that some of it has had an effect.

I will do a full report/update in the next couple of days. But for now, for some reason I have an overwhelming need to sleep for a day or two...

Plus ca change...

Nearly a month on and no assessment has been done. 

After a chat with Emma at the day centre last Thursday where I told her about being hit so hard across the ear I cried for two hours, she suggested she should re-refer me to the carer's department at Social Services. I received a phone call the same day and saw Sue yesterday morning where we talked about how things were and I told her how it is. After getting home from collecting Ma in the afternoon I had a phone call from Sue to say that she and Barry would visit again on Friday and her boss would hopefully be coming to do a nursing assessment on Tuesday next week.

Barry phoned this morning to say that he had spoken to Sue and then to the dementia team to see if there was any medication available to help with her aggression and agitation. He will bring a prescription with him on Friday but in the meantime I need to do some research on the drug to read up on the side effects and make a decision on whether or not I think the inherent risks are worth it.

He also suggested that Ma's behaviour has clearly deteriorated very rapidly over the last couple of weeks.

Hm. Well only if he hasn't been listening to what I've been telling him since at least July. I suspect part of the problem is that when he comes to visit Ma she is incredibly pink and fluffy with him so he doesn't see her usual behaviour (she does the same when Simon comes to visit). And probably promptly dismisses the majority of what I tell him is happening.

However the day centre told me this afternoon that they have their Christmas parties on Tues, Weds and Thurs next week. These are the days that Ma is there and unfortunately she isn't welcome. They feel her behaviour is just too challenging and it would be very difficult for them to keep her safe and the rest of the service users safe from her during the festivities. I totally understand this and hope that perhaps this will finally get the point across about how difficult it is.

My heart did sink a little though I have to admit. Not only at the prospect of no respite for 12 days but also that I hope this isn't the precursor to them saying they can't cope with her full stop.

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.

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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.

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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.

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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...

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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.

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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.

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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 :)

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

<----------- Hear that??

.... that would be the sound of the door slamming behind me.

I'm taking H to Cornwall for 11 days, Ma is off to respite for a week then Peter is collecting her next Friday and staying over the bank holiday weekend.

If you follow me on Twitter or Facebook I'll see you there, otherwise I'll see you on here sometime around a week next Tuesday :)

You couldn't make it up

Me: Right Ma ready? Let's go and get in the car.

Ma: Oh I don't think I want to go out there.

Me: Come on... it's day centre today, you love it there.

[reluctantly steps out onto the path]

[dog runs past me into the front garden]

Me: Oh flipping heck Lily, hurry up.

Ma:  Yes ok [starts walking faster]

Me: No! Not you Ma, the dog! Be careful, you'll fall.

Ma; Oh ok.

Me: [to dog] Come on inside!

Ma: [turns round] Yes ok.

Me: No Ma, the dog needs to come inside. Come on Lily, hurry up...

Ma: Yes ok. [starts walking quickly towards the house]

Repeat and fade.

Laundry woes, egg mayo and a bite on the boob

It is really difficult to describe adequately how enervating it is to live with someone who spends the majority of the day on a 90 second loop. I regularly have people say to me that it must be like living with a toddler again. Well, no actually, for the majority of the time it isn't. Toddlers will sit and play for stretches of time, go for a nap and are generally cute and entertaining. Dementia patients are often unsettled and in a state of mild distress for long periods of time.

Mealtimes and tantrums are the most toddler-like behaviours I suppose. If you try and feed something that isn't liked it will be reappear rapidly and end up on the table/plate/chair or spat out. A lot of food is eaten with the fingers and you quickly learn not to give sandwiches with sloppy fillings, I had to resort to the emergency egg mayonnaise sandwich today and I've been regretting it ever since. Simple things like knowing how to pick up a sandwich the right way are lost and I paid dearly for a moment of inattention this lunchtime. Goodness me but it goes a long way...

Attempting to stop her from trying to sit down on the chair arm because I could see that she would miss by a mile and fall resulted in a ringing slap to my head and a bite on my boob. Sigh. The bite didn't really hurt, dentures make it difficult to get any real force behind it, but it wasn't nice to be bitten regardless of where it was and I hope this violent phase will pass quickly.

The 90 second loop goes something like this:

Sits down.
(10 seconds pass)
Deep breath.
Gets up.
Walks across the room, touches several things.
Walks back.
Sits down.
(10 seconds pass)
Deep breath.
Gets up.
Walks to the front door, tries to open it several times.
Comes back into the room.
Sits down.

Repeat.

I promise you that it feels a bit like water torture after a while. Nothing seems to stop it happening - she  absolutely will not be distracted from doing it. Even as you are saying 'Mum, come and help me with this' she will reply 'Yes yes ok' but resolutely heads for the door. I thought at first that she wanted to go outside but when I open the front door she will peer out but doesn't want to go over the threshold.

Then there's the continual moving things around habit. It used to be just the cushions but now it is anything and everything. Having nipped to the loo after doing a lot of ironing for our upcoming holiday/respite visit, I wasn't best pleased to find all the underwear sitting in the washing up bowl. With the washing up.

Four sleeps until Friday and really looking forward to it, I'm ready for a proper break.

End of the week catch up

Thankfully after the dreadful attempt to go to IKEA we had two day centre days to recover. I did get a phone call asking if I would bring her wheelchair though because they have such a difficult job getting her off the bus. We've had several occasions when getting her down the steps at the front is a teamwork job involving distraction, persuasion, bossiness (me) and lightning fast intervention between her hands and anything she can grip. Plus it isn't pleasant to see Ma in such distress being virtually bundled off albeit for the best of reasons and with the best of intentions.

With this in mind we've tried using the lift at the back but she hates standing on it and I can't say I blame her, I think I'd be a bit pooky too. So for all involved, although she doesn't really need it when she's at the centre she will now travel back in her wheelchair again.

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Then... just when you think things are nicely on an even keel... I went to pick up a computer desk for H from Argos this afternoon. The plan was to pick up the desk then pootle back via the gym for a swim. But because Argos was full of people buying barbeques, no lie, 14th in the queue and every single person in front of me bought one - the slightest sniff of fine weather and the nation goes crazy for petrol flavoured food and insect hell, go figure - I ditched the idea of a trip to the gym. Thank goodness. Ma had taken the undressing thing to the extreme and H was half hiding in her room not wishing to see the results and I can't blame her for that.

I'm just thankful that the window cleaner didn't call for his money until after I got home.

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Now that the carers are no longer coming in the evenings we've had a more relaxed attitude towards bedtime. The interesting thing is that keeping Ma up later makes absolutely no difference to how often she gets up again before settling. Some nights she is asleep in minutes, others she is up 10/12/20 times.



Updates as and when over the weekend.

Optimism

Either I'm far more of an optimist than my grumpy, cynical exterior shows or I'm a complete idiot. And don't all rush to answer that.

I thought a trip to IKEA might be a good idea - God alone knows why. We need some bits and pieces and they have nice sweeping aisles so the plan was to take the wheelchair, go for lunch and then have a mooch around. The plan started to fall apart 500 yards down the road when Ma (in the back with the child locks on) kept trying to hand me her seat belt. This continued all the way down the M66 and on to the M60 where she got bored with that plan and started poking me in the neck with a pencil she found in the back. I have to say that this probably had something to do with the fact that when we came off at junction 8 IKEA appeared to have vapourised. At that point I realised we actually should've been coming off the M62 not the M60. So a bit of a detour.

We pulled up outside the front of the store and got a disabled space. Lovely. Got the wheelchair out and attempted to get Ma into it. This wasn't a hugely popular move so as I was trying to get the safety belt fastened I was also being belted from here to next week around the head. This was accompanied by shouts for help and pleading arms etc. The fact that it was quite sunny and pleasant meant that all the benches and tables outside the store were full of families having a drink or something to eat. So not in the least bit mortifying at all. We made it into the foyer where I could see that there was a bit of a queue for the lift. I was just about to ask H if she fancied having some lunch first when Ma kicked off again. Without breaking stride we did an about turn and headed straight back to the car. Extracting Ma from the wheelchair and getting her back into the car was a repeat performance in reverse - much to the astonishment of all the hot dog scoffers - and away we went. Both H and I were shaking with distress and Ma was oblivious, calling us both darling...

As a direct result of that I went for a swim.

This is the point where I tell you that I've joined a local gym and I wait until the collective sound of jaws being winched off the floor has ceased.

So I've joined the local gym. It's very pleasant and not too huge but it does have two lovely sparklingly clean swimming pools, toning tables and more yoga and pilates classes than you can eat. I'm not terribly interested in the weights bit but hope to get on to the cardio machines at some point. H is happy to Ma sit for an hour or so on non-centre days or during the evening so with luck we can get into a bit of a routine. Going for a swim, steam, hydro-jet thingy and relax on a lounger for 10 mins was really great and I definitely feel much less stressed out than I did when we got back from the journey to hell on a stick.

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The evening carers are no more. The final straw was finding Ma, bed and bedding soaking wet less than an hour after she'd gone to bed. This was because the two carers had managed to fold her night time pad in half which obviously wasn't then able to do its job properly. I was extremely unimpressed. So we are now only having help in the morning. In all honesty I probably could (and have on several occasions) deal with the mornings too but it's nice to not have to and it allows my joints to get going at a gentle stroll rather than a full gallop.

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Very pleased with several blips from the last week or so. This this and this spring to mind :)                                                                               

Decisions decisions

I'm seriously considering cancelling the evening care. There are a number of reasons for this. When Ma first came out of hospital her mobility was very very poor whereas now she is walks happily around the house without a frame and we only need the wheelchair when we go out. I know the company have sickness problems at the moment but having to interrupt her meal which she will then not eat because we've lost any momentum so that she can be made ready for bed at half past five or hanging around until 10pm trying to keep her awake because that last thing I want to do is get her revved up at that time of night after a three hour doze on the sofa does tend to irritate. With that point in mind I have been the one to get her ready for bed on a number of occasions recently and do not find it particularly arduous so am beginning to resent the constant 'she really needs two carers at night' comments. My reasoning is that I can manage the evening shift thus saving money for when we will really really need at a later date.

Later...

As the comment below says continuity is important and a very relevant point in favour of discontinuing the evening calls. On reflection I think this is why mornings are rarely a problem because we (usually) only see two girls, Kay for 12 days straight then Lisa on Kay's weekend off. In the evenings we have a random selection, often two carers where one will fill in the 'book' while the other one does the job but sometimes just one. It's a pick 'n' mix group of around 10 different carers and her bedtimes can vary by up to two hours.

The girl who came tonight is one of the ones who doesn't quite 'get' the best way to deal with Ma. So she's not settling at all. She's been up eight times in an hour already and I've just been punched in the face. Again. Between her and the cat, who is forever flipping my glasses off, it is a miracle I can see anything at all.

Off to blip something. No idea what though, inspiration is a bit lacking tonight.


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Managed to go for a nice walk with Lily yesterday.

Weekend Musings

It's interesting the way behaviours I thought had been and gone come back again. It has been months since Ma haunted the front door, trying the handle every 30 seconds or so, but now she is back to doing it again. I can ignore it for so long (about an hour or so) and then suddenly it's just so irritating and I go through the whole 'It's locked Ma, you can't open it' and she says 'Yes that's right.' and then tries to open it. This is repeated a number of times until the futility of it bludgeons me over the head and I return to ignoring mode. Albeit with slightly flatter teeth.

A current obsession is removing food from her plate and putting it somewhere else. Generally on the soft furnishings, but it can be anywhere. Vigilance is paramount here because had I missed the egg sandwich she put in a coat pocket in the cupboard we could have been searching for the source of the smell for weeks. I'm baffled as to how she decided that was where to put it but she clearly wanted to go there and in fact it was only her dogged determination that made me realise she was up to something.

As she has been re-referred back to the dietician I am battling with the whole feeding thing again and this is linked to the above. As I mentioned a while back, when she is at the day centre she uses cutlery and feeds herself so I have stepped back from assisting her and encourage her to do the same at home. The downside to this is that she eats far less than she would if I was helping and tends to move food around the house/feed the dog etc if I'm not closely monitoring her and that has the inevitable result of some weight loss. Everything I feed her is calorie-loaded as much as possible - Jersey milk on cereal plus cream, I put butter, cream and/or cheese in as many things as I can and keep up a steady drip feed of soft sweet things such as pieces of banana, breakfast bars, cakes etc. The only time she flatly refuses is when I offer food which I've added Complan to. And frankly I can't say I blame her, it's foul. At the same time if she refuses to eat there's not a great deal I can do about it. Yesterday was a refusal day, hopefully today will be a good one.

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Months ago I put my name down for a day retreat at Mirfield with the Vicar and others from church next Saturday but I am going to have to cancel. I hadn't realised that Peter would be in Spain and there isn't really anyone else I would ask to be with Ma all day, it's too much for anyone else to deal with. Hugh has offered to take me on a weekday when she's at the day centre which would be great, so we'll see how things go.

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Some nice blips recently. I think we might have a jolly jaunt in the car today (Ma in the back with the child locks on) and go looking for something nice to photograph. It'll make a change from things in the garden :)

Success!

The Burglar Bill night time attire is working really well, since we started on this regime we haven't had a single 'incident'. Not had much success finding a suitable daytime version yet though. I may have to dig out the sewing machine after all.

Harriet had a lovely birthday weekend and Ma had a few days in respite. When we arrived she was eager to get inside the door and once I'd unpacked her clothes in her room I took her to the lounge where she sat very happily saying hello and chatting away, in fact chatting away so well she didn't acknowledge me leaving. What a difference to a year ago. She did come home with half her clothes missing (despite me labelling everything, including her socks and knickers) and half of someone else's clothes instead. Not the first time this has happened and I'm seriously considering buying her a 'respite' wardrobe of inexpensive clothes so that I don't get annoyed when things go missing. Mind you she did come home from the centre yesterday wearing a pair of men's trousers. Thankfully she didn't bring the owner too.

The home phoned me on Saturday night to say that as she had lost weight since her last visit they were referring her to the dietician. The fact that she's just been discharged from the same doesn't matter apparently. Nor does saying that she's been in hospital and had four weeks on an assessment bed since her last visit. So we will go round the houses again. I'm keeping a food diary this time because I can't see how I can get much more food inside her - especially if she refuses to eat it, and the stuff she refuses to eat is generally anything I've put Complan in as per the dietician's instructions. And can someone tell me what to do with four boxes of banana flavour? Where the hell do I put that? She's not keen on custard/mousse/cheesecake type things. Banana flavoured mashed potato isn't going to work.

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It's Ma's 82nd birthday today so we are just about to set off for the day centre laden with cookies, chocolate roll, millionaire's shortbread, mini doughnuts and brownies (for 50). I hope they all enjoy it :)

'Happy Birthday Mum!!'

'Yes probably.'

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I reached my 200th Blip without a gap on Sunday. Quite an achievement! Roy is proving to be a popular subject in and amongst everything else :)

Fun and Games

The biggest issue I've had to deal with over recent weeks has been one of 'containment', particularly first thing in the morning, and four times in the last 6 days is apparently the tipping point. Without being overly coy or going into graphic detail it has meant washing everything in sight, starting with Ma and working outwards via the bed, bedding, soft furnishings, walls, floor etc. Ma gets distressed when she is put in the shower but unfortunately it is the only way to deal with the situation. Or it was... I think I may have come up with a solution.

It occurred to me that if I could remove access (as it were) then 90% of the problem would be sorted. So a bit of brainstorming later and she now goes to bed in long cycling shorts to keep the pad and net knickers arrangement snugly in place and then over the top she wears an all-in-one pyjama effort. These are not dissimilar to old fashioned long johns, the twist is that I put them on backwards so that the fastenings are out of reach. We are now on day three of this new regime and so far it's been 100% successful. One bonus I hadn't anticipated is that she appears to be much warmer in bed and the knock on effect of that has been that she sleeps more soundly and hasn't been up wandering about quite so much at 0 dark hundred hours.

Now I need to find some way of replicating this for daytime to stop the disrobing issue. Plain onesies without a pattern would do the trick but I'm not having much luck finding any small enough. If you happen to see any please let me know - the ones I have bought are sized for 13 year olds.

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Phoned the surgery this morning because Ma had a skin tear on her leg at some point overnight. The appointment was for 10.30 which was fine, I would take her on to day care afterwards and rang them to say she would be late otherwise her lunch would be in danger of being cancelled. I thought it would be a quick in and out then off to the day centre with barely a blip. Silly moi.

We did eventually get in to see the GP but only after a 50 minute wait because she had 3 appointments run over. Ma was teasey and shouty after 15 minutes so you can imagine how stressy it was. Not surprised that GP was running over though, I went in just wanting to know if it should be dressing on or off, if antibiotics on stand by should be used or not and when to call if things deteriorated. I'm not lacking in intelligence but some of the situations I am now dealing with are new territory so I needed a quick precis on what to do coupled with reassurance that what I am already doing is fine. The GP gave me a full 15 minute run down on how the wound had probably happened, how it would likely heal, what to put on it etc. I have to say that in some ways she deserves a gold star, talking about something so minor for 15 minutes is a skill. She really needs to edit.

Thinking about the way the skin tear happened, I suspect it was the onesie wot did it. They all have a ribbed cuff at the bottom of the leg which is joined to the main body of the garment with some fairly robust stitching. So today I have been removing said cuffs off all the onesies and hemming up the softer jersey cotton. Hopefully this will stop any further injury. I really should have anticipated that though. Sigh.

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Thistle blip today

This week

Well, the doll has arrived and has been a bit of a non-event although it's early days. She can be persuaded to hold it for a while but then puts it down again, I'm hoping it will become more accepted over the next few weeks. Thank goodness it isn't a real baby though. So far it's been stuffed down the back of the sofa, slapped face first onto the table and carried by the leg. Poor thing. Mood-wise we've had a reasonably stable week with the odd blip here and there as usual, I think the meds are better this way.

H is now firmly ensconced here having been for a college interview on Monday and been offered a place on the strength of her art work alone. Predicted grades and her personal statement were brushed aside. So so proud of her, roll on September.

We have been hampered by the weather this week so not been out and about too much although Mavis (God love her) stepped into the breach on Monday when we had to go for the interview. The thought of taking Ma in her wheelchair to that was daunting to say the least and would have been very unfair on H. Day centre Tues and Weds and I baked for the Dementia Café on Tuesday. That was quite a feat due to the Aga not working so had to use the table top oven. Cue a mad couple of hours of swapping tins in and out and using the desk fan to cool things down quickly so that the icing could go on. Thankfully the Aga is now lit again so next time it shouldn't be such a trial.

The rest of this week has been taken up with trying to get my EMA finished for submission to the OU. It's not an easy task to concentrate with Ma disrobing at every turn, needing cleaning up. talking to me non-stop, standing very very close and/or constantly moving things about. However, I am about 75% of the way there now, just have to choose my 10 photos (whittled it down to about 14 now) and finish off the written bit. I've stuck the photos in a set on Flickr and should anyone would like to comment, offer feedback or help me choose I'd be most grateful.

As I type the washer is on, the bed re-made, it is hammering down with rain, Ma has had a shower and her breakfast and is now half dozing half talking to her friends, H is drawing and I am about to do the hoovering marathon. I hope it stays this peaceful :)

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I liked yesterday's blip along with a few others recently. Looking at the weather, today's might be a challenge...

A couple of good things

Yesterday I ordered some meals from Wiltshire Farm Foods to try, they offer a soft diet range of puréed meals which are ideal for Ma. Today she tried a roast chicken dinner and ate a good 80% of it which was really encouraging because it was far more food than I would normally offer her. I think they will be very handy for those can't be arsed to cook days or when we've been out and she needs something fast. They say that they are prepared specifically to be finished off in the oven/microwave and certainly seem to smell more appetising than your average ready meal.

So a good day foodwise. Two Weetabix with milk, cream, a banana and lactulose (shudder) for breakfast, roast chicken dinner for lunch and home made cottage pie for her tea and inbetween she's had a small iced finger with a bit of butter on and three small choc chip cookies. No carers tonight due to sickness issues so I put her to bed at 7 and she seems to have gone off to sleep ok - it's half an hour since I put her to bed and she has stayed there. So far...

Barry came today and we talked about her undressing. He is going to see if he can find any information via professional resources and tells me that the paperwork for the additional day at the centre would be signed off today so another day should be in the pipeline. It is a bit of a dead man's shoes scenario so it may be a while before we hear anything.

We also discussed getting a doll. The upshot of that conversation is that I've ordered one from Amazon. If she loves it then that will be a massive result, everything else I've tried as a distraction/comfort has failed miserably. So far music, photographs, tv, things to fold or sort have all been less than successful. If she doesn't engage with it then I can give it to Lulu (who I'm told is now standing/holding on to furniture so will be off very soon!).

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Forgot to do a linky to Blip yesterday. Still going strong although beginning to panic about my final assignment for the OU and how far behind I am.

One day I'll learn

One day I will learn not to say things like 'everything is calm and quiet', it really just sets me up for a fall.

The increase in medication made Ma 10 times worse than she was and caused her to go night time wandering again. I gave it a few days but in the end I had to stop the second tablet and put her back on the sleep meds. She is better on this regime but her behaviour is really quite bizarre at the moment and this means that I can't take my eyes off her for a second. She is hell bent on removing every scrap of clothing every couple of minutes and which is exhausting and this coupled with constant restlessness and a continual stream of conversation which makes absolutely no sense and the days are really quite difficult. It's taken me five days to complete this blog post. If anyone has any ideas on why she takes her clothes off or how to stop her doing it I'd be grateful for the help, it distresses me so much. I take her to the loo regularly because I've read that this can be a reason for it but it doesn't seem to make any difference. As I type she is in vest and pants and one sock. Oh, make that no socks now. I think my blood pressure must be off the scale.

Foodwise she is eating reasonably well but needs constantly reminding and encouraging, and often quite a lot of help as even spoons can be too challenging to use some days.

Harriet is now here and this has made a massive difference to me, I can nip up to the shop if I need milk for example and simply having another body around helps enormously. I don't feel quite so isolated any more. H has an interview at college on Monday so fingers crossed she does well, that would really make my day.

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Please don't take your trousers off...

No I won't.

*trousers hit the deck*

Brrr! Isn't it cold?

Goodness me!

Where did the time go?

I suspect that a weekend away plus having to catch up with my OU course and submit a CMA by midday on Monday may well have something to do with it.

But also, as Jon said on his wonderful blog recently, no news means that things have been relatively calm and quiet and after a year-long white knuckle ride it's quite pleasant to bimble along for a change if I'm honest. This does mean that there's not much to blog about and I'm sure you would get rather bored with endless updates about the same things.

In Ma's world things are quite busy. She still hallucinates a lot and spends a fair amount of time looking for someone/doing something she's been 'told' to do/asking me where people have gone/talking to the 'others'. She's rarely very distressed by any of this although she is constantly on the move trying to resolve things. A lot of her conversation doesn't make any sense (random or made-up words feature heavily) but I try to gather the gist so that I can either agree with what she is saying or sort out what she needs. It can be a bit hit and miss though unfortunately.

The dementia community team came to see her yesterday and due to the level and frequency of her hallucination the anti-psychotic drug has been increased. This is a slightly contentious issue so if I don't see a big improvement in the next week or so I will be giving them a call. There is hope that this will also temper some of her aggression - usually when attempts are being made to get her dressed/undressed, fed, bathed or any other situation where she doesn't want to do what she is being asked. A couple of mornings have been a bit of a nightmare but I worship at the altar of Vanish Green Top which deals with everything magnificently.

The day centre continues to be a hit. It is wonderful to see her walk off quite happily without a backward glance when at home I barely get 10 seconds before she comes looking for me. I am firmly convinced that it does her the world of good to be away from here and mixing with others. And of course, I do enjoy the time off.

The back bathroom now has a new shower and flooring so we are able to shower her safely and easily even though she's not very keen, another huge personality change which is hard to get used to.

Only 8 days until H arrives. Cannot wait.

Ready for a break

A week today I'm disappearing for a few days and my brother is stepping into the breach, it's fair to say that I am ready for some time off.

Sunday was a lovely day, with Jon, Fran and the girls. Ma enjoyed it too I think although she will insist on referring to both of the girls as 'he', luckily they are both young enough not to care.

Monday we had a visit from the dietician. She is pleased that Ma has put on weight and has decided to close her file. This means that we are once again at the whim of the GP regarding the prescription of Fresubin drinks and we all know what that means don't we? It beggars belief really as those drinks have been instumental in getting her weight up and keeping it there.

Tuesday I took Ma to day centre, pootled round a bit then took Mavis to the doctors. While she was in the surgery I wandered down the old railway line which is now a cycle/footpath and just across from the surgery where I picked some wild flowers to photograph. Dropped Mave off back home and before I knew it Ma was outside in the day centre bus refusing to get off. She didn't want much of her tea and was pleased to get to bed when the carer arrived.

Wednesday I took Ma to the day centre and had a cuppa with everyone as they were highlighting dementia awareness week. I sat next to Ma in the lovely sunny main room where there was a baby doll in a growbag - I know it's not called a growbag, but that's what I always called them and can't remember the proper name... one of those stretchy towelling suits with feet in - on the table. Ma immediately picked it up and sat it on her knee. This reminded me that I was going to get one at some point but have forgotten to do so (if anyone has one their child no longer needs I'd be grateful).  One of the staff told me that the doll is very popular with a lot of the ladies and sometimes there's an unseemly scuffle to claim ownership which is then jealously guarded.

Home via Morrisons for some photo frames to put some of my photos in as a raffle prize for the sponsored walk/Dementia Café event on Saturday. So some poor buggers who get one of the last three tickets drawn will have to pick one of my photos. Eh well, life's a bitch. Oooh unless they put all of them together as one prize... That would be really cruel!

So after farting about with photo paper and the printer, swearing appallingly but with deeply satisfying and vicious alliteration and failing to print anything I gave up and ordered prints online via Jessops. Actually a very good and reasonably priced service. They should arrive tomorrow.

I then unwrapped a photo frame and noticed it was damaged. Arse. Two pics for the raffle then. Or in fact, after inspection it appeared that all the frames were broken. Sigh. Back to Morrisons it is then.

After that relaxing half hour I went to collect Mavis and take her to a tea dance organised for Dementia Awareness week and involving some of the Café crew and patrons. We had a really lovely time watching all the dancing (and a fair bit of showboating, highly entertaining), discussing Strictly and scoffing cake.

Today we had a visit from both the physio team and the district nurse. Once that was done and dusted we went to Morrisons to return the photo frames. Yesterday it was a breeze in and out. Today it was a nightmare of monstrous proportions involving Ma, who wouldn't get in/out of the car or wheelchair and then once inside Morrisons via the underground car park and lift having her calling 'Help!! Please!?!' and grabbing onto nearly everyone we passed. Many of whom were understandably less than pleased because despite being the size of a pea, Ma has a grip like you would not believe. Interestingly the service till lady told me that the frames I paid £4 each for yesterday are now reduced to 48p. I wonder why.

Call me a glutton for punishment but as we were out already and I needed replacement photo frames, we went to Matalan on the way back. I know I know. Perhaps seeing Ma banging on the car window when I walked six feet away to get a ticket should've been a bit of an indicator. Then Matalan (like Primark) has one of those winding queue things to the till lined with danglies such as socks, umbrellas, mugs, hankies... It is fair to say that our trip out this afternoon was utter hell on a stick.

I can't honestly say that it improved a great deal once we were home but she is now in bed and appears to be settled so let's hope she stays that way. She must be exhausted, I know I am.

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Blip catch up here if you're interested.

Quite a week

Tuesday was a good day - day centre for Ma, Avengers Assemble with the fabulous Mandi for me. This was after a review meeting at the day centre where we talked about how Ma was getting on etc. They say that she has settled in well and I agreed that she seemed a lot happier than she had at Grundy. I was shocked to hear that although she does need a lot of encouragement and reminding, she will feed herself when she is there. The monkey. So from Tuesday tea time onwards I've refused to spoon feed her and eventually she gets on with it (albeit after sitting there like a baby bird with her mouth open at first). Isn't that great?

I've also decided to drive her to the day centre. This is partly because I will get roughly an hour longer during the day but also because it makes me get out of the house instead of sogging about wasting the day away. So I drove her to the centre on Weds morning and was home via Tesco by half ten when I would normally just be handing her onto the bus. She wasn't in the best mood when she came home so refused to eat anything much and it took some persuading to get her to stay in bed.

Thursday was an extremely difficult day. Ma was a level 14 on the Skipton Scale, very very restless and agitated, tearful and aggressive. This manifested itself by her constantly removing all her clothes, as fast as I got her re-dressed and turned round she was down to her pants again. She has since had a bit of an upset tummy so I suspect that that was probably the cause of the behaviour. She also broke the camera which sent me into high distress mode but thankfully I had arranged insurance for it so once I'd remembered that (only took me an hour *eyeroll*) I was a lot calmer about the whole thing. The insurance company couldn't have been more helpful - Square Trade via Amazon, highly recommended for any hi tech stuff.

Friday was spent dealing with said tummy upset. Plus the excitement of the 16 week bulk delivery from the continence service. I really need to get a grip. Or some time off.

Today we drove to Southport to a craft fair organised by a cousin-in-law, raising funds for the local hospice. The fair was lovely and it was so nice to see Sascha and her mum but the drive in both directions was challenging to say the least. I don't think I will be attempting that length of journey again. Although the shouting down the air vent was mildly amusing.The carer said tonight that if she's been like that all day it must have been 'full on'. That might explain the tension headache and the flat teeth I guess.

People for lunch tomorrow which will be fabulous, I miss cooking properly. I often feel aggrieved on Sundays because everyone seems to be having a roast dinner somewhere and I can't see the point in doing it just for me. So a roast chook for us and a proper pudding of some description.

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Some ok blips this week.

An apology

I have to apologise for the lack of blogging lately. It's a combination of a serious attack of the glums, a feeling that I'm just whingeing about the same things all the time and falling out of the habit. So here we are again and I promise to try harder.

In a lot of ways it has been a bit of a challenging week. Ma has shaken off most of her care home ennui and is back to the restless, grumpy, strong-willed person she was - in truth this is much more heartening than the limp, passive shadow she had become. But it does come at a cost to my patience and sanity.

Our routine at the moment goes like this:

I go in to Ma and open the curtains at about eight then she stays in bed until the carer (usually Kay) arrives at around half eight. While Kay gets her up, washed and dressed I strip the bed and make her breakfast. She's wheeled into the living room and we tackle breakfast.  These days she has difficulty remembering how to do things so sometimes she needs more supervision than others but I try and get her to do as much as possible on her own because once she's lost a skill it is gone forever. With this in mind breakfast is often some sort of wholemeal sandwich because with encouragement she can hold a small square at a time. On bad days I feed her porridge or Weetabix. And some days she can operate a cup, other days she needs to be helped. I transfer her into the chair where she dozes on and off  for about half an hour while I shove the hoover round, hang out the washing, shove more in and generally tart about doing as much housework as I can fit into 30 mins.

If the weather is nice and we aren't expecting social services, the continence nurse, the dietician, an equipment delivery or visitors we will go out. These days we aren't out for long. Any car journey longer than 10 minutes becomes an ordeal (see here) so we tend to go locally for shopping or a flat out 15 minute whizz around the garden centre. Anything to get a bit of fresh air and a change of scene really.

In the afternoon Ma is often restless, getting up and walking from sofa to sofa to chair and back again. This is when she does quite a lot of talking back at the tv and moving things around - cushions, dog's toys, my shoes. The other day she put two footstools on one sofa, all the cushions on the other sofa, my Crocs on top of the standard lamp, her fleece blanket on the tv and poured a dish full of Aero bubbles down the side of the chair. I still can't find her other drinking cup or two pairs of my glasses.

She might doze again for a while then we watch Pointless before she has her tea and the ritual of the magical returning tablet begins. I've tried crushing it into things and wrapping it in other things but these are always vehemently rejected. So it just seems relatively easier to keep plugging away and putting it back in every time it pops out again. However it is achieved, the process takes a toll on both of us. She gets angry and I get upset. I feel like a big fat bully making her take it and she usually retaliates physically.

Once that is over with she will sit and shout at the news while I make up her bed and a hot water bottle, lay out her pjs and overnight stuff and make sure everything the carer needs is ready in the bathroom. The carer puts her straight to bed at around 7 and then I put her back again several times thereafter. She tends to fall asleep at around 9ish and then thankfully these days she does sleep through until I go in in the morning.

It might not sound like much but it can be utterly exhausting. Particularly the constant talking and questioning which is a challenge to decipher, something I rarely have much luck with any longer. The tv goes off regularly to stop the shouting but especially at mealtimes because she often can't see food held in front of her or remember what to do with it - difficult to explain and frustrating to deal with - and the distraction of the tv just makes that worse.

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In other news... H begins her final GCSEs today so the countdown begins :)

Managed to do some nice blips this week and the OU course is very enjoyable so far.

A new week

We had a quiet weekend - no phonecalls, no visitors. The only thing of note was the car journey I blogged about the other day. And watching the Sound of Music for the eleventeenth time this year.

There's a definite shift away from the institutionalised behaviour she was showing after being in respite. I've noticed a return of some of the old behaviours: shouting at the tv, constantly wanting to go 'somewhere' and unfortunately, some pinching and aggression. All of that I can cope with but the return of the night time wandering isn't so welcome. Not least because she can't really walk unaided but obviously thinks she can.

However, one of the most difficult things is getting her to swallow the night time tablet. Often just getting it into her mouth feels like a victory and I feel myself getting worked up about it in the hour or so before. She can then eat an entire sandwich and drink a whole cup of tea before spitting it out again. She generally ends up getting it down by default due to crunching it up and it must taste utterly foul, it's no wonder it is such a distressing thing for her. I got a punch in the eye tonight for my troubles.

On a positive note, there's an absolutely HUGE improvement in the amount she is eating. Breakfast, lunch and tea every day with a biscuit or cake and a cuppa a couple of times during the day. One trick that seems to be working quite well is having a small bowl on the table next to her chair with some small chocolates in it (Whispa Bites, chocolate buttons, that sort of thing). She'll have a few during the day almost without thinking about it.

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I've realised that my attack of the glums is in some part related to the fact that H finishes school in a couple of weeks time. This is the end of an era and makes me feel really emotional despite being so delighted that she will be here to live with me very soon.

Daft really.

It's a lovely day...

... I know, let's go for a drive.

Why don't we go this way and see what we can find?

Let go of your seatbelt Ma, that's not safe. *returns 7 feet of belt to the inertia reel*

If you pull your trousers up like that your legs will get cold

*KLAXON KLAXON* DOOR OPEN

Let go of your seatbelt Ma...

[looking right before turning] YOU'RE ONCE, TWICE, THREE TI... Bloody hell! *turns radio off* Please don't touch the buttons Ma.

Your legs will get cold

Let go of your seatbelt, it's not safe

*KLAXON KLAXON* DOOR OPEN

I think if we go right here we'll find CRASH! Ok please don't open the glove compartment

If you do that you'll break the zip and let go of your seatbelt please



We were only out for an hour and I'm shattered. I think a chimpanzee in the front seat would be less distracting.

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A whole week of blips to flip back though. Lucky you.

I'm not waving, I'm drowning

I know it's been just too long since the last blog. There are no excuses other than it's just been a week of overwhelming ennui coupled with Ma being a bit of a handful. Not the best really.

On Monday morning I went in to find Ma on the floor. Thankfully she wasn't injured at all and from the way she was lying it looked as though she'd got out of bed and then fallen, rather than having fallen out of bed. She wasn't cold, clammy or in any pain so once she was up and wrapped in a blanket with a hot water bottle in place she was fine, she ate some breakfast and then dozed. The fall clearly had an effect which made her quiet and sleepy all day.

Tuesday was day centre day no 1. She was quite grumpy when she came home and didn't like me at all. I gave her a cup of tea to go with her sandwiches but unfortunately most of it went over me and the chair and she wiped off the few drops on her face with an egg sandwich. Makes a change from a slipper.

Wednesday was day centre day no 2. When she came home she was so pleased to see me she was practically in tears. She refused to stand up for the carers when they came to do the night time stuff, lots of swearing, shouting and cursing from her so perhaps there was some physical trauma from her fall the day before.

.... 20 minutes later:

Bedroom door opens:

Hello?? Are you there??

She'd walked from the bed to the door... (about 10/12 steps)


Today. Foolishly I stated somewhere that Ma appeared to be ok, quiet, but ok. Oh how God laughs when you say these things. From about middy Ma has been on a mission to 'go somewhere'. This involves getting out of the chair (without any trouble) and striding off in a pushing sort of way with the nattily faux leather-topped nest of tables. Clearly using the walking frame would be just too sensible. I have been swapping out the said tables with her walking frame at every opportunity which really really annoyed the pants off her. Apparently I am 'nasty nasty nasty' for doing this. Eh well.

Just before Peter arrived we had a moment where she did some of the old stuff (spitting etc.) but once he was here it was fluffiness all round. We had a few hours together which was nice - he is a big twitcher and encourages me to enjoy birds too, particularly with my camera. So I bored him rigid with just the first thousand or so of my photos.

Unfortunately she doesn't seem to want to go to bed tonight, she's been up seven times already. There's no reason that I can see, Pete and I did wonder if she could hear us talking but he left two hours ago but she's been up more times since he left than she has in the last couple of weeks.

I know this reads slightly flat. It is really hard to post when you are in a bit of a slump. Apologies.

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.

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Pretty blips yesterday and today

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.

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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.

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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.

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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.

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.

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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).

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.

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Loved my blips yesterday and the day before

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

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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?

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.

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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.

etc.

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

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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?

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Nice bit of blippage today

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.

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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.

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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...!

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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.

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.

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

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Very very pleased with my blip today.

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.

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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.

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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.

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Pretty blip today :)

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.

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

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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.

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.

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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.

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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....

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A pretty Spring blip

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.

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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.

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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.

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!

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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 .

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.

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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.

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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 :)