End of an Era

I've been putting off writing this update.

Now that Ma is in a home my carer's role is so diminished that I don't feel I can call myself a carer any longer and the speed with which the situation has changed has left me feeling wrong-footed and adrift. I can't help feeling resentful that I wasn't given any option in the decision-making process. I was told that I would be invited to contribute my views at the meeting but that didn't happen. The whole business was incredibly upsetting and still brings me to tears when I think about it. I need to stress that no one was rude or unpleasant at any time, it was just that the outcomes I had been led to believe would be discussed were summarily dismissed as not being an option.

However Ma seems happy enough in her new home, although the new drug she is still being given is definitely flattening her to the point where she does tend to sleep in the chair for most of the time. Of course this change in behaviour also means that now she does not qualify for CHC funding, so thank goodness my parents paid into the NHS for all those years.

The house is going on the market this week, it simply isn't possible to keep it running. My heart sinks at the thought of all the sorting which will need to be done now - thirty years of memories and my Dad's inability to throw anything out will make for a challenging few weeks. Luckily I have a spare son kicking his heels in Devon so he will be coming up to give me a hand.

So this morning I have the third and final estate agent coming to give me a valuation on the house and then off to see Ma this afternoon.

Don't worry though there will be more updates to come and I am about to resurrect my other blog just in case you can't live without my scintillating writing and rapier wit...

Enormous change ahoy

Ma has been in hospital for a month now. She is happy and settled, spending most of her time walking up and down the nice wide corridors. When she isn't doing that she might be invading other people's space or she will sit behind the Nurse's station. The cellulitis in her leg continues to respond to the antibiotics and improves day by day.

When I arrived today she was very much in walking mode, so didn't stop long when I gave her a hug. She was very 'dorritydorrity' and clearly had a mission in mind.

Today was the day for the meeting with the consultant and others to discuss the results of her various assessments. Drug-wise she will stay on the smaller dose of Respiridone because it does appear to have lessened both her psychosis and her aggression. But the hope is to reduce and remove in the near future.

She has also been assessed as needing nursing care and this will be funded but she has not been awarded CHC funding. It is unfortunate that I was given the impression that the nursing care could be implemented at home, this is not the case and she will have to go into a home with an EMI unit in order to give her what she needs. To say that I was a bit blindsided by this is an understatement. However, CHC funding is not the golden ticket it appears to be in that should she be awarded it then settle well in the home, and thereby her aggression etc. is reduced, when she is re-assessed 6 weeks later the funding would be withdrawn. So you would be in the situation where thinking all was settled suddenly becomes oops... sorry.. you need to find £1800 a month. So in a way this is better. At least I know what we have to deal with.

Lots of issues around this. I've always wanted to keep her at home, so now I feel as though I'm letting her down (I know, I know); I'm very worried about how to keep the house going when such a massive amount of money is about to leave the bank account every month; I'm not exactly prime employment material these days so finding someone who will employ a disabled 52 year old in the current climate is likely to be akin to the proverbial needle in a haystack etc.

But on the positive side, this is absolutely what Ma needs. Plus she is able to go to the home that I saw a few months ago and liked enormously and that really does make the whole thing so much easier to deal with.

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.