money, money, money...

Visited mum yesterday with beloved son (in his Xmas jumper!). She was fairly uncommunicative but now and then became more animated, once to tell us about one of the 'patients' who had hit the 'maid' and once, to my delight, to inform us that the watch she was wearing was the one the Canadian airmen had bought her during the war when she was in hospital - she thought she'd lost it but had found it again. Actually, the watch she wears is one Dad bought her. The watch she was given in the WAAFs was stolen in a burglary many years ago and it's loss has grieved her immensely ever since. That she has forgotten all about this and now thinks she still has her precious memento of 'people who thought a lot about (her)' is such an unexpected but fabulous gift of dementia.

Mum's ankles are not so swollen any more. I spoke to her nurse who told me that the blood tests came back fine so they haven't changed her medication (which she sometimes refuses to take) but they have taken some more bloods and are waiting for the results. She is eating better (she certainly is - TWO sandwiches AND a mince pie while we were there!) but has not put on a lot of weight because she's burning off the calories, being constantly on the go.

While at the home, I caught up with the finance clerk. I owe a little money for mum's incidental expenses - she goes to the hairdresser every week and has seen a chiropodist. I also discovered that the reason I hadn't been asked to pay for mum's care yet, was because they thought Social Services was footing the bill and hadn't been able to contact someone in SSD to sort it out! They're going to send me a contract to sign (agreeing I'd pay the bills) but have promised me they'll try to hold off requesting payment as long as possible - I'd explained that my solicitor is sorting out my application to be mum's deputy for her welfare and property through the Court of Protection.

Ladies and Gentlemen, may I present to you.....

....Beloved son in his new mum-made Christmas jumper!

Merry Christmas!

I think it just might be! My lovely 'little brother' (not really but might as well be) has arrived with his partner and baby boy to spend Christmas with us! Lovely daughter and I are going to take mum's Christmas present round to her tomorrow (and visit again on Christmas Day) and together we're going to tackle cooking the Christmas Day dinner for the first time in years! (Just bought the turkey, sprouts, parsnips, potatoes, turnip (already had the carrots), cabbage, OH NO - I'VE JUST REMEMBERED I FORGOT THE YORKSHIRE PUDDINGS!!!, cranberry sauce, apple sauce (already have a joint of pork) and gravy today. Wonder what else I've forgotten? Must check the pantry for Christmas pudding, sure I saw some brandy butter in the fridge....

....Mr Lily has been tasked to purchase puddings on Christmas Eve - Yorkshire and Christmas, hopefully he'll surface before the shops have been emptied. I'm off to work now then to mum's to wrap all the Christmas presents before lovely daughter and I visit mum. I'm so excited!

snow snow snow snow snow

I love it but it doesn't love me. It left me stranded diagonally across a narrow road in our village, totally blocking it, at 10 o'clock last night. I had to rouse a friend to push me into position so the wheels could get some purchase on the skating rink surface. I can't even get up our sloping drive at the moment. Still, its nice to have snow at Christmas. Mustn't grumble. No, really. Mustn't.

The Daft O'Clock Chronicles, continued

Well here I am again, pounding the keys at nearly 2am, more because I don't want to go to bed than because I want to blog. I'm living a double life at the moment super-efficient, upbeat, unfaseable (is that how you spell it?) at work; distracted, obsessive, procrastinatory (!) at home. And when I'm not busy with some totally absorbing activity like knitting or xmas shopping (think I finished it today!) or playing Farmville (I know, sad), I'm sleeping for England (but not going to bed until I'm so tired I can't keep my eyes open any more). Anything to keep the sticky footed 'you put your mother in a home' devil on my shoulder from catching my attention.

Went to see mum on Wednesday - she wasn't in too bad a mood but still time travelling, mostly rooted in the past with long-gone relatives but occasionally visiting the present for brief moments. She introduced me to the other residents in the lounge as her sister yet she knows my name. I suppose its pointless trying to understand what's going on in her head, its probably as much of mystery to mum as it is to me. However, 'The 36 Hour Day' book has arrived so I'm hoping it will shed some light on the subject and give me some useful coping skills.

Tomorrow, sorry - today, the plan is to tidy up the house and get the christmas tree and decorations down from the loft. That's the plan ....

tonight's visit to mum - the 'highlights'

Why can't you take me back with you?
I'll just walk home in the dark then.

I'll have to turn to strangers for help.

You're my sister - you should be looking after me!
There's something funny going on.
You're nothing to me.
Shit out.

(and I've just remembered this one...)

What's going to happen to me when I leave here? I don't want to go back into the RAF.

sad, so sad, sometimes she feels so sad.....

I visited mum last night after work. She was already in bed but not asleep. "I'm glad you've come" she said, "I have to get all this stuff packed up before I go home tomorrow". I offered to make her a cup of tea to change the subject and tempted her to eat two jaffa cake bars. Although mum didn't have a go at me this time, it was still an upsetting visit. So sad - she couldn't understand why her brother and sisters hadn't kept in touch with her, leaving her feeling abandoned and lonely. I didn't have the heart to tell her they were all dead, she would have forgotten within minutes anyway. She talked a lot about her "grumpy old" father who she thinks is still alive and living 'at home', she was bewildered by his apparent dislike of her. She commented "I suppose you'll be getting married soon" and was surprised to hear I already was, "I would have given you a nice wedding but I was in here" she said regretfully. (Mum and dad didn't come to my wedding 30 years ago - they didn't approve of Mr Lily.) She's contemplating getting married again, if she finds "the right one".

The staff tell me she has settled well and is eating reasonable amounts but they're monitoring her fluid intake as she's very resistant to drinking much at all. I'm going to take Mackeson and Sprite in on Thursday, to see whether she'll do better with her old favourites. They organised a second visit to the memory clinic and said she'd 'done well' but I'm not sure what they meant by that as mum is going to have a CT scan of her brain - they must suspect further deterioration. She does a lot of wandering about during the day so her ankles have swollen, she's had blood tests and depending on the results, I think they're going to alter her medication. I've asked them to take her to the hairdresser's today for a cut and perm, it will give her a boost.

Although I'm not as acutely stressed as I used to be, now that mum is safe and getting the care she needs, I'm still not functioning properly. I'm often up in the early hours, unable to sleep, and mostly feel a bit 'flat' which dulls the pleasure of socialising. I wish mum were happy. Then maybe I wouldn't feel so guilty.

Catch-up

Strange how difficult I find it to update the blog. Things have definitely improved but I still feel unsettled - my knitting addiction is coming a close second to the new drug of choice - Farmville on Facebook - its as though I need to be busy doing something every second of the day or who knows what demons will sneak into my mind. Here's how mum's being in residential care is going:

PROS

• Mum is well thought of by the staff and she seems to get on with them
• She is eating slightly better and has put on a little bit of weight
• She is rarely very distressed about being in the home but I think its because she often thinks she's just visiting instead of living there
• I no longer get palpitations when the phone rings because I know it won't be mum with a new disaster
• I have more free time because I generally visit only twice a week for no more than an hour at a time
• Lovely daughter and beloved son do their bit and visit mum as much as possible

CONS

• Its hard knowing how to deal with the 'can you drop me off home' requests at the end of the visit - oddly enough its harder than when mum has a right go at me for 'plotting' to put her into the home (hasn't happened as much lately). Apparently Princess Anne offered her a ride home but she didn't take her up on it.
• Mum has developed some strange habits - the other day she 'clouted' a woman at the dinner table who she said had hit her first - she told us the story over and over with much glee!
• She pinched someone's wedding ring when she thought she had lost her own!
• She has also taken to spitting on the floor - something she would have regarded as absolutely disgusting once upon a time.
• The finances still aren't sorted out. The home hasn't billed me yet but I'm still waiting for the solicitor to send me the paperwork for the courts.

Ok, that's me done for now. I'll try to post more often.

back in the saddle

Thank you to everyone who has been reading and commenting on my blog, your support is a great comfort. I'm sorry I haven't posted for a while - seems ages but its only just over a week! I couldn't bring myself to put fingers to keys, I don't know why. Anyhoo......

Mum's birthday was a great success. The home made a big fuss of her, they'd put 'Happy 90th Birthday!' banners all round the dining room and provided party food as well as a birthday cake. They turned off the lights and brought the cake in for her to blow out the candles spelling out her name. The flower arrangement I ordered from Interflora arrived during the day and is still cheering up her room - a selection of yellow and orange blooms in a brown wicker basket. Lovely daughter, beloved son and I went over at tea-time and found her sitting with other residents in the lounge in just a thin nightie so we took her back to her room to open her cards and presents and put something warmer on. She ended up in the cardigan I made her ages ago (see also photo on 8th December post) that's been languishing in the wardrobe ever since. Once securely buttoned up, she said "this is the last thing I knitted"!!! and it has been a firm favourite ever since. Ah bless, lol. She loved the Thorntons chocolates and the bouquet and bottle of Tia Maria from BS - she had two glasses and was reluctant to go to bed when we left so we parked her back in the lounge, happy as Larry.

On Sunday, LD and BS visited mum again and I went after work on Monday night. She was already in bed but not asleep and delighted to see me! She thought it was a huge treat to have a cup of tea in bed, not to mention 3 of the birthday chocolates that she'd forgotten she had. She even drank a second cup of tea (about a quarter of a cup really) - I think she'd forgotten the first one. She seemed quite content and has enjoyed going to painting classes in the home (she says her "schoolteacher makes a fuss" of her) but when I reminded her that she had painted one of the pictures on her wall, she also claimed authorship of dad's painting on the other side of the window!

LD and I went again on Thursday night, I took a bunch of bananas as I knew mum would eat them. She was in bed again but in a right strop. She'd had a "terrible time", it was an awful place, etc etc. On the pretence of going to make her a cup of tea, I collared one of the staff for an explanation - apparently an unfamiliar member of staff had taken mum to her Memory Clinic appointment that day and she had refused to answer any of the questions without her solicitor present! When I returned to her room she said "school was awful today, I don't think I'll go tomorrow." Little does she know they're going to have another crack at it next week, with one of the staff she knows well. Good luck for that! Mum cheered up really quickly though and enjoyed her 'surprise' chocolates again. She is eating a little better now and has put on a bit of weight. Her memory is shocking, literally! She still thinks her father and all her siblings are alive (and a lot younger) and although she knows LD's, BS's and my names, I'm not convinced that she knows what our relationship is to her. I wouldn't be surprised if she thinks we're her contemporaries, all young adults together.

I do feel reassured that mum is in the right place. She seems happier than she's been in years and the staff tell me they're very fond of her. After discussing the power of attorney issue with mum's nurse, we agreed that she doesn't have the capacity to understand/give her consent to it so I've bitten the bullet and instructed the solicitor to start the process of applying to the Office of the Public Guardian. It will cost me over £3,000 but the peace of mind will be worth it.

LD is excited. She's going to rent mum's bungalow next year and is already having practise stay-overs and planning decor! It's the perfect solution for all of us, she will have her independence (at special family rates, lol), I will have a good tenant and mum's property will be looked after.

XC

Mum is 90 today. Beloved son is coming up from Nottingham and we're going to meet lovely daughter at the home at tea-time. I hope she has a good day today - when LD and I visited on Monday, the care staff said they'd put on a party for her and I've arranged for a huge bouquet to be delivered. Mum is starting to settle better - she's eating properly!!! and joining the other residents in the lounge, she hasn't spit out her medication or kicked anyone recently lol and takes herself off to her room after meals for a nap. She has stopped blaming me for putting her in the home and seems to think it was her decision, although she still says that she'll go home when 'they' say she can. On Monday night she even asked the carer for help getting ready for bed which suggests she's feeling more comfortable with her new surroundings. She does look frail though and her memory is getting worse and worse. I've decided not to tell her missing relatives have died any more, its too upsetting for her, I'll just feign ignorance and suggest they'll be visiting soon.

Despite the break from daily visiting (twice a week now), getting my weekends back and the comfort of knowing she's never on her own, the whole situation is still stressing me out subconsciously - this week I've woken Mr Lily a few times, shouting out or crying in my sleep - unusual for me, I can't always remember why. I am tired all the time still and will be glad when the power of attorney thing is sorted. Roll on the cruise!

Bleary eyed

I'm really tired so just a quick update. Lovely daughter and I went to see mum last night but she was already in bed and asleep when we arrived. We had a long chat with the staff who told us that although she's generally very quiet and just tootles up and down the corridors all day and spends time with other residents in the lounge, she won't eat with them so they have to leave finger foods in her room for her. She's also been rather naughty - she has been spitting out her tablets, said to one of the carers "look at the size of you, you're fat aren't you!" and on another occasion kicked and hit out at a member of staff!

I left this photo of mum's mother on her chair with a note saying we'd visited. The picture is larger and clearer than the old faded (only) one she has, so I'm hoping she likes it.

deep breaths

Mum was in a grumpy mood today. She was not pleased to see me and refused to talk to the solicitor about power of attorney. We're going to wait a couple of weeks to see whether she mellows, if not its going to cost an arm and a leg to take it to court.

this blog in a nutshell

Thanks to Greg for the link to Wordle. (You need to click on the picture to see it in all it's glory.)

the post I wrote on Saturday

I phoned mum's nurse on Friday morning to express my concerns. She assured me that mum was taking most of her medication and getting a good night's sleep. She had refused painkillers and the anti-nausea tablet which explains why she told me she was feeling sickly on Thursday. It seems likely that the cause of her 'exhaustion' was joining in the painting activities, making Halloween decorations. However, her food and drink intake is a major concern so the nurse will be calling in the dietician. She thinks mum needs lots of TLC to settle into the home so has asked the carers to spend as much time as possible with her. I hope it has an effect.

I was up early this morning but went back to bed after an hour or so and didn't get up again until after 4pm! I needed the rest and as a result have nearly finished Mr Lily's books! Just a little tweaking tomorrow and they're ready for the accountant.

I have ripped the multi-coloured mohair circular cardigan I was knitting. I was frogging as much as I knitted, such was my inability to concentrate over the last few months, and I decided I didn't like it after all. I think I'll start on a jumper for my son next, hopefully in time for Christmas, or if not, in time for his birthday in February.

Maybe Logan's Run had the right idea

Mum was just as angry tonight but distressed too. Why was I doing this to her, I was just a parrot for repeating that the doctor had said she needed to be in a care home, she wished she'd had a bigger family then she might have had a good one, her mother/my father would be horrified if they knew what I'd done, why couldn't I take her home and leave her there, she would write to her aunt who would understand - "Auntie N died a long time ago" - I say that about everyone.

The care staff told me she was refusing medication and hardly eating, her eyelids were red as though she'd not slept/been crying. She said she'd had an exhausting day but wouldn't tell me what she'd been doing (and I forgot to ask the staff). I made her a cup of tea and she joined me in the dining room/kitchen to drink it and continue berating me. Another resident came in and sat quietly with us so I made her a cup of tea too, hoping that her company would have a beneficial effect on mum. It didn't. Mum said she didn't want to see me again. She accosted the ward manager in her office to complain about her situation and didn't believe her either when she told mum that it was the doctor, not I, that had insisted on her going into care because she couldn't look after herself at home.

I gave the manager the family tree I'd put together for reminiscence sessions and an appointment for mum at the memory clinic and left, feeling very low. I hope mum's GP was right about the 6 weeks acceptance point. In the meantime I'm not optimistic about Monday's visit with the solicitor.

New beginnings

The move was confirmed for Monday so I spent the last day of my sick leave dashing to and fro - first to a friend's to use her tumble drier for mum's last load of washing then to the hospital to drop off mum's discharge clothes - she would be leaving some time after 2pm. Next to the nursing home with all mum's bits and pieces to make her room seem familiar and homely. Her clothes, shoes, photographs,letters and towels went into the wardrobe; one of her paintings and one of dad's went up on the wall; her cut glass dressing table set and photos of the grandchildren on the chest of drawers next to the bed; tissues, underwear, tights, hats, scarves and gloves in the drawers; a silk flower arrangement, her crinoline lady toilet roll cover, makeup, perfume, flannel, towel, shampoo, toothbrush and toothpaste went into the en-suite; small ornaments on the window sill and zimmer frame by the bed. I also swapped the home's bed linen for her own quilt cover and matching pillow case. I realised more space was needed for the other family photos she used to have on display at home and for her calendar clock and favourite books so I dashed up to the bungalow (about 2 miles away) and brought back the bedside table that dad made. Then it was back to my friend's for a late lunch and moral support and to collect the dry washing before some last minute errands in town.

By this time, around 4pm, I was feeling very nervous about the prospect of facing mum at the home and decided to wait until lovely daughter finished work so we could go together. We took a 'good luck in your new home' card and a box of chocolate liqueurs. Mum was in her room, sitting in a high-backed chair like Queen Victoria on her throne. She was not amused. She berated me and LD for the terrible thing we'd done to her - putting her into "a mental home", she was fearless in her fury - asking the care staff at her door what they were whispering about and why people were "grinning" at each other. We spent a very long time trying to explain the benefits of being in the home but she did not want to be persuaded. I could just forget about her now, I needn't visit again, she wouldn't stay there, she would leave her money to someone who cared. The nurse who had assessed mum in the hospital said she couldn't believe the transformation from canny little old lady to battleaxe but she was very good humoured and well used to letting insults fly over her head. She gave me a 'living will' form to complete on mum's behalf (aargh!)and promised to arrange a hairdresser's appointment for mum and for the optician and audiologist to visit her (hopefully to provide a better quality hearing aid).

Back to work on Tuesday after 5 weeks off. I telephoned the home on the morning to check how mum had been, expecting to hear she had been restless and was sulking in her room. The nurse told me mum had slept right through the night, had joined other residents in the dining room for breakfast and was last seen in the lounge! My feet left the ground as the mum-shaped millstone hurtled heavenwards from my shoulders. Maybe it was going to be alright after all! On the afternoon I bent the chaplain's ear over the uncomfortable issue of the living will, especially the bit about 'if my heart stops, I do/not wish to be resuscitated'. We had a long talk which eased my mind a little.

On Wednesday lunchtime I went to see our solicitor to discuss lasting power of attourney for mum's medical care and property. Still very confused about what it all means but the solicitor was very reassuring. We are going to meet at the home on Monday morning to talk to mum about it. Apparently, he has to ask her about her end of life wishes, so that will make it easier for me to complete the home's form. I just hope mum is in a good mood when we go, if her consent can not be obtained, I'm facing a long and even more expensive court process.

I'm going to visit mum on my own tonight. Which may explain why I'm up blogging at daft o'clock again.

Moving on

I went to see a third nursing home on Thursday. Fairly new, purpose built, ticked ALL the boxes. Only one free room, with the same number as mum's home address - meant to be! En-suite toilet and wash basin, lovely view from the window onto this courtyard:She should be moving in on Monday or soon after - just waiting for the home to obtain a special 'alarmed' mattress that senses when mum gets up in the night and alerts the staff.

Visited mum today with lovely daughter and told her the plan. She didn't remember the home's representative coming to assess her yesterday but didn't seem distressed. That may be just because she's so weak. Its as though she's slowly disappearing, shrinking, losing her memory - I have to tell her every day that her sisters and brother have died. She looks so frail and vulnerable. I am desperately sorry for her. All the difficult years in our relationship are melting away, unimportant against the closeness we have now. I hope it lasts until the end.

Wednesday's child is full of woe, again

Spent most of this morning avoiding getting on with the business of packing up everything mum might need in the care home, finished about an hour ago.......

Shortly before the last wrapped nicknack went in the box, someone from the second care home rang. She was at the hospital to do her assessment of mum (who was fast asleep) and had gone through the medical notes but there was a problem - the CPN had said mum needed EMI nursing care. The home does general nursing care and has EMI residents but does not do EMI nursing. WTF?! I'm getting really frustrated now. The care home person said she'd speak to mum's social worker to clarify the situation, especially as mum's notes said she was quite settled. I do hope I don't have to start looking at more homes. Sigh.

Aaaaargh!

Mum's social worker has just phoned - can't go ahead with my first choice of nursing home because the Primary Care Trust has withdrawn funding due to concerns about the standard of care at that home! Seems they may have been economical with the truth when they told me there was a block on admissions due to problems with an ex-resident, which would all be sorted by this week :-(

I've asked the SW'er to approach my second choice and am keeping my fingers crossed there are no more skeletons in the cupboard.

Barginz!

I'm going to give this a go! Thanks for the info Susan!

I made the right decision

It is time for mum to be in residential care. I know this now, after yesterday's visit.

I thought there was an odour when I arrived on the ward but there often is, considering most of the patients are bedridden. Mum was asleep and when she woke up I took her down to the cafe for a cup of tea. She was perfectly calm. After five minutes or so, she wanted the loo so we went into the public toilets on the main corridor. OMG! Everywhere. I did my best to clean her up and took her straight back to the ward where I asked a nurse to give her a proper wash and change her clothes. I'm not sure mum fully understood what had happened, she was grumpy after the nurse had finished, as if she'd undergone an unnecessary procedure. Thank goodness for dementia - mum used to say that she wouldn't want to live if she couldn't keep herself clean, she would have been mortified if she'd realised.

the deed is done

I visited two dual registration nursing homes today, both in an area quite close to where mum grew up (and where she now thinks her home is), so hopefully she will feel more settled there, especially as she will be able to keep her current doctor. Both homes had a 'good' rating from the Care Quality Commission and were the nearest of their type to where I live. The first was a converted couple of large Victorian houses and I felt it was a little warren-like and claustrophobic. Also the lounge area had seating all around the perimeter, not so conducive to socialising.

The second was much newer and airier.
I was impressed by the facilities and the warmth and experience of the member of staff who showed me (and an 'expert' home-carer friend) round, so I chose this one. I phoned the social worker so she could arrange for the nursing home to assess mum, it should be ok, I'd already given them much of the information they needed and no problems were identified. Apparently, mum could move in the day after a positive assessment so perhaps this time next week or not long after.....

After initial nervousness and then adrenalin fuelled fact finding, I now feel rather flat and apprehensive. I'm dreading the whole moving mum in thing, even worse, the leaving mum in the home for the first time moment. This is just awful. Despite the consensus of the hospital doctor, social worker, community psychiatric nurse and Primary Care Trust, arranging for mum to go into a nursing home feels as though its all my doing, particularly as I've been thinking she would be better off in residential care for a long time. Who am I kidding - I'd be better off (emotionally/physically) if mum were in residential care. I didn't visit mum today. Couldn't face it.

Thursday

Mum was very down tonight, her low mood seemed to have set in long before she asked me where she could go after leaving hospital (she didn't seem to remember that she had a home of her own, the bungalow). I was truthful with her - I didn't feel there was any other option, and tried to put a 'retirement' home in the best light possible in the hope that she would eventually become reconciled to the idea. It wasn't the answer she'd hoped for (ie for her to live with me) and in her eyes was proof that nobody cared or wanted her. She kept referring to relatives who had died as people who would take her in. Having to remind her they'd passed and repeat the hospital-to-care home scenario over and over again (her short-term memory is really poor now) only added to her depression. She said several times that it would have been better if she'd died. I do feel desperately sorry for her. I just hope I'm doing the right thing and it will work out alright. I'm going to start looking at nursing homes tomorrow. I hope I find a good one quickly.

on the slow train

I have another fortnight's sick note thank goodness, I'm exhausted. Mum has exhibited some bizarre behaviour lately, in addition to her journey back into the past. The staff nurse told me she tried to sit on a patient's visitor's legs the other day and refused to move, even when the patient's family were telling her to go back to her own bed! I don't know whether it was that incident getting mixed up in her mind, but when I visited her later, she was adamant there'd been an altercation with the same people over their wanting me to entertain their guests and provide them with cakes?!

On Tuesday I met with the social worker to help compile her report and yesterday we both met with a member of the Primary Care Team for another long assessment meeting, this time to determine whether mum's needs qualified her for a financial contribution from the PCT towards the cost of her residential care. Mum scored high in some areas, eg nutrition (she's now just under 5 stones) and came out as a borderline case. I have been instructed to look for a nursing home with dual registration, ie elderly and dementia care. There aren't that many in our area to choose from. I also phoned a solicitor yesterday to discuss the problem of gaining access to mum's bank account to pay for residential care as I don't have power of attourney. He advised me that once mum is in a home he would be happy to visit her and if she seems to understand and agree that this arrangement needs to be made, he can go ahead. If not, we'll have to pursue another route via the bank or the courts. Urggh.

Today the doctor will make a formal assessment of mum's capacity to make decisions about her future care, I think its unlikely she will agree to residential care so he will say that she does not have the capacity but residential care would be in her best interests. If she refuses, another assessment will have to be done under the new Deprivation of Liberty legislation. This afternoon's visit to mum will be interesting, will I be greeted by Dr Jekyll or Mrs Hyde?

second hand Lily

I found these wonderful things at a charity shop today....

This is behind me, keeping an eye on my nocturnal nattering.
The detail is amazing (click on the photo to see what I mean) and it was only £3!






And this is part of a long strip of beautiful, silky material that is now an elegant dust cover for the clothes in the wardrobe-without-a-door in the little bedroom.

The calm before the storm

After a couple of weeks of placid mum, I had two days of grouchy mum, complaining bitterly about the lack of care on the ward (at teatime 'they haven't given us any food all day!') and wanting to go 'home'. Non-PC mum also played a blinder - a black male nurse was keeping watch on A and V - two very poorly patients with a tendency to try to get out of bed; he was mostly seated near them but occasionally got up to manoeuvre them gently back into a comfortable position or allay their anxieties. If mum referred to 'that darky over there' once, she said it half a dozen times in her deaf person's loud voice, despite my telling her she was being rude. She insisted on commentating on her interpretation of the situation - he was lazy just sitting there all the time doing nothing, he was wearing a white coat so he would look official and then(with amazement, after I'd told her umpteen times he was a nurse) he must work here! He must have heard her but showed no sign of it, we exchanged pleasantries and he voluntarily helped me get mum from the chair onto the bed and sorted out her dirty laundry for me. He deserves a medal, I'll bet my mum isn't the only racist geriatric he has to deal with.

Yesterday she was back to cheery mum and especially enjoyed her wheelchair trip to the hospital cafe with me and lovely daughter for a cup of tea (wish I'd thought of it sooner, gave us something new to do and certainly made the time pass quickly).

A member of the ward staff phoned this afternoon. Mum was very anxious and agitated, could I talk to her on the phone and come to see her asap? As anticipated, mum couldn't really hear me but she was cross and confused. She said she'd been asking them to ring me to tell me where she was, as though I didn't know, and wanted me to go there straight away and take her home. The assistant said she'd check with the staff nurse whether it would be best for me to visit or stay away. The SN came back on the phone and said that as mum had now settled on her bed, it might disrupt her again if I went, so I didn't! Freedom!!

I'm going to see my GP tomorrow to renew my sick note (still have only half a brain, if that) and then I have to go to the hospital to meet mum's social worker and go through her assessment report. Then on Wednesday there's a meeting on the ward to determine what kind of residential care mum needs. Flak jacket at the ready.......

Progress!

What a small world - I've just had a phone call from the woman who has been assessing mum and its only someone I worked with many years ago! She believes that mum does not have the capacity to make the decision about her future care, she scored very poorly on the memory and cognition tests and today thought she was still in school! We agreed that a dual facility home (elderly and EMI care) would be best for mum. She will pass her recommendation on to the social worker who will get in touch with me. Now we just have to break it to mum :-(

from one invalid to another

I've found it difficult to post every day, I'm so tired (still on sick leave) and progress with moving mum on has been very slow. I finally met her doctor when I visited on Monday. He said that her CT scan showed some brain shrinkage and a small clot at the back of her brain which probably wouldn't affect her much. He agreed that she needed 24 hour care and that she did not have the capacity to make the decision herself. At that point he was waiting for the results of a psychiatric assessment. One of the nurses told me that the CPN had been yesterday and would return today. Hopefully this will speed things up although I am worried that they won't get a true picture of mum's mental state as she's so deaf. She's still forgetting that her siblings and other significant people in her life have died, even though she remembers going to their funerals when I remind her of the details. She's also still talking about going back to the street she lived in over 60 years ago and worrying there'll be no-one left that she knows.

Mum also had a fall yesterday (she said she didn't remember it) - apparently she took herself off to the toilet, using a zimmer frame, and on turning the corner fell into the laundry cupboard opposite the loo. Fortunately the door was open and the floor covered with piles of laundry so she couldn't have wished for a softer landing!

This is such a brilliant post!

same old, same old

Still visiting mum every day, 4-5pm or 6-7pm, depending on when I can get my act together. Mum still spending most of her time snoozing, she rarely wants to sit up when I arrive but generally stays awake and will make occasional comments. She doesn't seem to mind the silences when we run out of things to say, I think she's somewhere else in her head. In the last week she's forgotten that her brother and sister died last year, not to mention her father who she thought was still 'at home'. Today, out of the blue, she said 'I'll be finished school by the time I get out of here'. She's still eating only tiny amounts and not taking much of her build-up drinks. As far as I know, she still hasn't seen the CPN for a mental state assessment, without which I won't know what type of residential care is needed. I must remember to phone her social worker tomorrow for an update.

ward sisters

I have found a new family since mum has been hospitalised. I and the other daughters visiting their mums on Ward 12 are becoming our own support group. We share our concerns and laughter, update each other on what's been happening in our absence and look out for the patients who have no visitors. There's A in the far corner, so pale and frail and determined to escape her bed - one of the visitors regularly goes over to hold her hand and talk to her to settle her down. When necessary, we call the nurse. Then there's M, to mum's right, she has a beautiful smile and is mostly content to doze or read but occasionally becomes frightened for no obvious reason and clutches the side bars on her bed. We keep an eye out for her too.

Poor D in the bed opposite mum died quietly only an hour after her elderly brother had been to see her, I was there on the afternoon visit and felt annoyed on her behalf - her brother seemed to be ignoring her, spending all his time talking to the daughter of the patient in the next bed while D stared bleakly ahead or rested her head on her arms on the table in front of her. I was told later that the curtains were drawn round all the beds while the doctors attended her and she was taken from the ward; apparently mum was very distressed by this and insisted on sitting with the visitors at the bed on her left, demanding that her daughter (me) be contacted to call the police because "something's not right here!" The lady on mum's left seems to be the liveliest on the ward, a low blood pressure problem I think. The last patient, in the far right corner, rarely lifts her head from her pillow but has two daughters who take turns to spend every visiting time with her.

I think mum is giving up. The nurse told me today that she's hardly eating anything, I suspected as much as the last few visits she has preferred to spend most of her time lying down, not talking a great deal and certainly no sign of the old spitfire, in fact she seems pleased to see me! When she does talk, she sometimes appears confused, tonight I was astonished and dismayed to hear her wonder aloud why her brother hadn't been to see her. I had to tell her he'd passed away (we both went to his funeral), she didn't remember.

These are such strange times. I visit mum and hold her hand and stroke her hair and make her comfortable and its as though I finally have the mother/daughter relationship I always wanted, warm and tender. Now when there's so little time left and more than likely just before the storm aka 'going into residential care', I struggle to understand how I feel, especially when I return home and Mr Lily, thinking he is being supportive, continues to berate mum for all the stress of the past years. I know I've done my fair share of mum 'bashing' but it still makes uncomfortable listening.

I'm back at the doctor's tomorrow, for my official sick note. I'm going to ask him about a counsellor. I think its time.

Other stuff

I wonder how many people coping with depression find an affinity with knitting? I've just read Franklin's latest post and realised that he and I are in the same leaky boat (although his paddling skills are far superior to mine!). When stressed and trying to clear my mind of worries, concentrating on a project soothes me. Searching for beautiful yarns is a real pleasure and finding the perfect pattern brings small, perfectly formed moments of calm. Knitting is such an accurate emotional barometer too. I know when I'm super stressed because I get a bit OCD about it, when I'm really struggling the frogging rate triples.

I indulged in some retail therapy yesterday with a good friend who's also on sick leave at the moment. I found this wonderful bargain (£10) in a charity shop, it weighs a ton!:I've given it a clean but it could do with a proper going over. Today I plan to buy more brass polish and some new heads for my electric toothbrush - a combination of the two should get into all those little crook and nannies!

itchy and scratchy

I was exhausted at work on Monday and went home on the afternoon to get some sleep before visiting mum. She was in a good mood - still looking forward to going home but fairly settled. The welcome change still didn't save me from the nettle devils later that night so again I was up until daft o'clock.

Tuesday saw yet another dying swan impression and I agreed with my line manager that I would take some time off on sick leave following Wednesday's appointment with my GP. It felt good to be rid of the pressure to keep on top of the mountain of work that was steadily engulfing me. I visited mum on the evening. She was morose, back to pleading with me to take her home - I could just shut her in a room, she'd be no trouble, she'd die in that place if she stayed there, and so on. Yet she seemed to have lost her spark, her voice was weak and she looked as though she had lost even more weight. I'm afraid that if she doesn't rally soon, she may not even make it to residential care.

I went to bed early, slathered in moisturiser, to stave off the nettle devils but they woke me up in the early hours. At least I'll be able to get more anti-histamines in six hours time.

groundhog day

Having been perfectly pleasant to staff all day, mum gave me hell all through the hour long visit. So much so that the embarrassed old lady in the next bed felt she was intruding and zimmered off to the other side of the ward where I could hear the patients discussing us, saying 'I feel sorry for the daughter!'. Had a chat afterwards with mum's named nurse who was very sympathetic. Should know more tomorrow, after the doctor has done his rounds.

light relief

Today lovely daughter and I visited mum. She was on good form but still expecting to be able to go home at some point. I decided not to rain on her parade just yet. She's on a ward that's a step up from the previous one, where lots of occupational therapy and physiotherapy will be offered to aid rehabilitation. There's a lovely view of the Cleveland Hills from the ward window but I'm not sure mum's eyesight is good enough to appreciate it, they do look a lot cloudier these days (mum's eyes, not the hills) - I think cataracts are developing.

As we were driving away from the hospital, LD suddenly exclaimed "Oh my god!" and said she'd seen a man tugging on his todger in full view of the main road. Of course we had to double back to have another look just to check :-) Sure enough, laid down on the path at the side of a very busy main road was a guy, naked from the waist down, his meat and two veg enjoying the rays of the afternoon sunshine. We turned round and drove past again on our way home, he was then sitting up and rummaging around between his legs. He looked under the influence of something. We decided to do the good citizen thing and phoned the police, an hilarious exercise in itself, given the subject matter. Then we thought we'd better go back again to check whether the police had turned up - in all seriousness we were worried that some outraged local might take the law into their own hands. The police were with him (his trousers were back on) and we introduced ourselves as the reporters. It turns out that he was well known to the police, had still been semi-naked when they arrived, was drunk and had messed himself. LD has to give a formal statement describing what she saw, as the guy is claiming he was just cleaning himself up.

Don't you just love life's little surprises? lol

crash landing

So much has happened in the last 36 hours, I struggle to remember everything. I finally got in touch with the social worker on Thursday afternoon and arranged for us to meet at mum's on Friday morning to try to persuade her to go into residential care.

Thursday night. I went round to mum's after work, she had phoned me a few times to check I was coming. It didn't take her long to have a go at me and tell me to leave. I'd only been home a short while before the phone rang - the neighbourhood watch woman had been asked by mum's 86 year old neighbour to intervene because mum's constant phoning and visiting her to vent all her anxieties was getting her down. NWW was very forceful, I felt on the defensive as she went through all the concerns the neighbours had about mum and that she shouldn't be left alone. I explained about mum's care package and that I didn't feel it would be helpful if I went over given mum's feelings about me at that point. NWW said she'd ring Care Link and ask them to send someone to sit with mum.

NWW rang back, CL didn't provide that kind of service (I knew that). I went to mum's with an overnight bag. NWW was still there. Bloody do-gooders. lol. Before leaving she said CL had phoned the on-call doctor. A doctor came out and was very forthright with mum, told her if she stayed at home and went on as she was, she would starve herself to death. He urged her to consider the benefits of a nursing home. Mum was not impressed, more fuel for the 'plot to shove (her) in a home' fire. He diagnosed a mild water infection and gave me a prescription for antibiotics. Mum kept asking me "why are you doing this to me?" Finally got to bed around midnight. Heard mum get up in the early hours for the toilet but otherwise uneventful. I was up about 6.30, mum a little later.

(I forgot, somewhere along the way, a doctor from mum's GP's surgery phoned and decided he didn't need to come out there and then but would ask mum's doctor to visit her on Friday morning.)

The day started off quite amicably, I even washed mum's hair. Then the social worker and her colleague arrived. I took the opportunity to dash to the chemist for the antibiotics and when I returned mum was in full furious flow. They'd already broached the care home issue. No matter how hard I tried to explain why people were concerned about her and why a home would be good for her, she took it as proof of my betrayal and utter failure as a daughter. I was close to tears. As the social worker wanted to wait for the GP, I left them with mum for half an hour while I took a break and did some shopping.

I missed the doctor. She had left a prescription for the anxiolytic Lorazepam (telling mum they were vitamins), the hope being that in a few days time, a calmer mum might look more favourably on residential care. I phoned her, as requested, and she told me that if it didn't pan out that way, mum would have to be sectioned, for her own safety. Depressing thought.

The afternoon passed fairly peacefully, thanks to the Lorazepam. I explained to mum about not bothering her neighbour. The carer came and made her some tea, most of which ended up in the bin. I gave mum her evening medication including the second Lorazepam and, as she seemed quite settled and the carer would be returning in a few hours, took my leave just before 6pm, promising to return on Saturday. I did feel a little uneasy, in case the medication made her drowsy and unsteady and she fell going to the toilet or something but I was so weary and just wanted to go home.

I had just relayed the above events to Mr Lily when I remembered I'd left my mobile phone in the car. Worried someone might break in and steal it, I went to retrieve it. There was a phone message timed 6.44 pm. From Care Link. Mum had gone outside, fallen and hit her head. An ambulance was on its way. (She had fallen over the step between her and her neighbour's drive.)

Mum now has a new shiner under her left eye to match the old one under the right. Also a bump on the left temple underneath a large section of red highlights in her white hair and numerous grazes in other places. She was obnoxious to me when I arrived in A&E but eventually mellowed. The doctor did not think she had broken any bones. He agreed that she was not safe to live alone and should be in care. She has been admitted to hospital and will be in for at least a few days, during which time I'm hoping we can finally arrange for her to get the support she needs.

hurtling

Lovely daughter went round to mum's last night. No broken bones from the morning's fall judging by the speed with which she zimmered into the kitchen to get her tablets! Mum pressed the Care Link button twice while LD was there and they contacted the on call doctor. When the doctor rang back, LD said she thought there was nothing seriously amiss with mum's mobility and that she was getting pain relief for her hip but would call for help if things deteriorated.

They did. In a different way.

I was in the shower ten minutes ago when my mobile rang. It was the home carer to say that mum refused to take her medication, was very confused, said she hadn't seen her daughter for weeks, didn't seem to realise she was in her own home and wanted to call her solicitor. Otherwise she was ok, lol. I've just left a message for the social worker to phone me at work later this morning. I think its time to get mum into a home. Wish me luck.

plummeting

More discussions with the social worker, we've altered the care package to 15 minutes breakfast, lunch and tea and 30 minutes at bedtime. I think the extra visit and the longer time to chat may settle her at night. Maybe. We're going to give it a week to see how it goes.

Mum phoned me at work at 5.20pm. She said she couldn't manage and couldn't walk. Before going over I phoned the social worker but no answer, then I phoned mum's GP who was very understanding but said I ought to get Social Services to move faster, clearly mum should be in a home. She told me she would hate it for 6 weeks but then settle down. Easy for her to say, but yes, I know she's right.

The Care Link warden was already at mum's. Apparently she's started phoning them again and she had to go out to her at 10.20pm last night. She also keeps unplugging the CL connection. Mum was pretty mean to me in front of the warden, especially when I relayed her doctor's advice, and was adamant I hadn't called round this morning but that was nothing to the diatribe after the warden left. Eventually I couldn't take it any more and also left. Mum was straight on the phone to CL who phoned me just as I arrived home. We've agreed they don't have to go out unless they think its an emergency, they know I appreciate their just talking to mum when she phones.

Mum has phoned me two or three times now, I've lost track of how many. She doesn't seem to remember I've been round tonight, she wants to see me to discuss something important. She's disappointed when I say I'll go tomorrow. Lovely daughter is going to call round tonight to check she takes her evening medication.

I have a pain under my left shoulder blade. I might take tomorrow off work.

falling

It has started again, the accusatory phone calls, the character assassination. Mum didn't remember we'd discussed my going home last night, she thought I'd just "sneaked out". I sobbed this morning, after putting down the phone. She's phoned four times now in the space of half an hour. She wants me to go round. I tell her the carer will be coming soon, she doesn't believe me. She says she's weak as a kitten, she needs help, she will have to go to her neighbour. Fifth phone call. I've agreed to go over. I hate my life.

LATER...
Well, maybe hate was a bit strong. When I got to mum's she was resting on the settee. Her anger seemed to have subsided but she was unhappy. She said she had already had a fall in the kitchen and her hip was hurting her again, she didn't want to be alone. I gave her some painkillers and wrote a note to explain how often she could take them. The carer had been to make her toast and tea for breakfast and prompt her meds.

I phoned mum's social worker this morning and explained my concerns about mum's care package not being enough. I thought she would arrange an assessment of needs but she is going to try increasing the length of home care calls from 15 to 30 minutes and from 3 to 4 times a day. I've asked her to send an Attendance Allowance application - by my reckoning, the full price will be about £170 per week! I doubt the extra care time will be enough for mum but you never know. If she has time to get to know her carers and enjoy several chats a day with them, she might feel less lonely.

the sparrow has landed

Stayed with mum until 8.30pm by which time I was ready for bed and mum was dropping heavy hints about my staying overnight. Heartless so-and-so that I am, I didn't. And what is more, I'm going to the pictures with lovely daughter tomorrow night so won't be going back to mum's until Thursday. She will have the home care team going in again, three times a day, so she should be alright. I have put a notice above the socket feeding the care link aparatus - DO NOT PULL THIS PLUG OUT - hopefully she won't, otherwise I can expect a phone call saying they've lost the mains connection. I sorted out all her new medication - they tinker with it every time she goes into hospital - and gave her the night-time tablets before leaving but I think I've left a bag of rubbish in the kitchen/hall that I forgot to put in the bin. I hope it doesn't confuse/upset her.

Apart from the above, mum seems less agitated and in a much better mood, perhaps the anti-depressants are kicking in. I have noticed, though, that she is forgetting well worn stories, giving them different punch lines or missing important bits out.

I'm so tired. I'm hoping to reduce my visits to mum to twice during the week and Saturdays, now that she has home care.

Steam, out of, run.

grey is the new blonde!

Actually, with all that's been happening and my general knackeredness, I just couldn't be bothered to do anything about it. The bathroom cabinet is full of boxes of colourant (ebay bargain!) so I guess you'll know I'm on the mend when I'm a brunette again.

Mum's being discharged tomorrow afternoon. Whoopee?

distracted

I love to knit but attempting anything new, however straightforward, is liable to involve repeated frogging with my mind in its current turmoil. Currently I'm working on Kia Kia but have unravelled back to the hem at least twice now. The first time I failed to notice I'd one stitch too many (should have been 400!) so the pattern wasn't working out right, then I realised I was knitting in the wrong direction and discovered I'd backtracked when picking up and knitting from the hem. Its not easy frogging mohair! Right now, I'm here again:

Gladderday

I got up at 8.30 this morning then went back to bed at 11 and stayed there till 2pm. Ah, this is the life!

We booked our Meditteranean cruise for next year, today! 16 days of luxurious relaxation with close friends, I am SOOOOOOOOO looking forward to it!

Mum was stroppy to begin with this evening, then mellowed. She has put on 0.1kg!

tough love

I'm so tired. I was late for work this morning and fell asleep during auricular acupuncture - they didn't like to wake me so I was there 45 minutes!
Mum's back on Ward 3 and hating it. The woman in the next bed was calling out 'help, help' - she thought she was falling and was gripping the side rail.

I lasted ten minutes with mean mum tonight. There's only so much "if you loved me you'd take me home...everyone else has loving families...if your dad could see me now he'd be appalled...I've no-one to turn to..." etc. etc.

The nurse said she'd been fine all day, although she needed a lot of encouragement to eat. The doctor will see her again on Monday.

I've taken Monday and Tuesday off work. I plan to sleep a lot.

Thursday

Mum was much like yesterday tonight but has eaten a tiny bit more. I've told her she'll know when she's well enough to go home by how tight her watch is. It used to nip her but now I can get my finger between it and mum's wrist. Lovely daughter, the woman in the bed opposite and I all had quite a few laughs at some of the mumisms - a mixture of deaf misunderstandings ("he's breaking his teeth?" No, he's making the tea!) and feistiness "Maybe one day your daughter will put you in a place like this!". She is being moved tonight, back to the ward she was on last time she came in, I hope the crazy ladies have moved on. That's it folks, I'm shattered.

Wednesday

I thought mum had regressed to the "take me home now" diatribe when I went last night but she wasn't as angry with it as before and the mood quickly passed, anti-depressant starting to work? The staff are still concerned about her food and drink intake although she did have a few spoonfuls of pudding today. I couldn't persuade her to have a drink or even a malteser tonight, so I have no idea whether she's on the mend or still declining. Ha ha - declining - an unintentional pun!

I like the ward mum is on, its not full of barmy old ladies (just mum, lol) but just 4 beds and at the moment the other three are occupied by a woman in her twenties/early thirties, a woman in her forties and a very frail elderly woman. Mum was entertaining them last night with her loud observations on all and sundry - "is that a man in that bed over there?", "I feel sorry for her, she looks lonely", "they care more about how the beds look than the patients", "I haven't been since I came here" and so on.

A big bone of contention in the UK is hospital parking charges and at mum's hospital, the money goes to some developer, not back into the healthcare pot. It costs me £2 for 1-2 hours and last night I was 7 minutes over the 2 hours so it cost me £3! When I stayed with her all day the first time she was admitted, that cost £10. Someone's getting rich and it ain't me! I'm going to get a 'frequent visitor' card which should save me some money. Visiting again tonight and lovely daughter is coming with me.

or just another train coming?

My boss let me take some lieu time this afternoon so I could go home and rest. I was falling asleep in a post-lunch meeting and couldn't read the notes I'd scribbled semi-conscious. I managed about 90 minutes sleep before having to get ready to go to the hospital. Another lovely, hand-holding, smiley, mother/daughter bonding visit. Why couldn't we have been like this in all the years before? Our lives would have been so different if we'd been this close. Ah well, better late than never.

That was the good news. The bad news is that mum still isn't eating and only drinking enough to get her tablets down. She has lost weight since her last hospital stay a week ago and is now only 5 st 5 lb (75 pounds). The nurse said that if she doesn't start eating soon, they'll have to use a gastric tube, poor mum. I reminded her constantly throughout the visit that she would have to stay in hospital until she was eating properly - they wouldn't send her home to starve to death. Even so, I couldn't get her to drink anything (I think she's frightened of accidents - she was in another change of nightwear today) but she did have 2 maltesers :-)

The nurse said she seemed confused and that before dementia sets in, people often suffer from depression because they sense something is wrong but don't know what. That would certainly fit my mum's presentation over the last few years. What is going to happen? Will she pick up and start eating so she can go home? Will she be kept alive by tube? Will she fade away?

After the hospital I went round to my cousin's, its his 50th birthday today. He and his wife are two of my most favourite people, they really are 'extended family'. My cousin went through very similar stress with his parents, in fact his dad (my mother's brother) was behaving just like mum towards the end - repeated telephone calls, confusion, paranoia, general bolshiness! MC is going to be a great source of comfort and advice as I try to cope with mumgate.

Light at the end of the tunnel?

Didn't wake up until 10am on Monday! Phoned the hospital and they said mum was ok but would be staying in a while. Met some friends on the afternoon to discuss the cruise they'd just returned from and plan next year's group excursion woo-hoo! I intend to knit and sunbathe in the altogether on a private balcony - the idea is to acquire a stripeless tan, the reality will probably entail my falling asleep with knitting and needles stencilling a curious pattern across boobs and belly. Oh well, will give Mr Lily a laugh.

Back to the hospital for evening visits, mum had been moved to the short stay ward and was much brighter, in a good mood even! The drip was out but had clearly made a difference. Poor mum struggled to take her medication, especially the paracetamol that dissolved at the back of her throat, with the result that she threw it all up five minutes later. She's still not eating and only having little sips of fluid so the nurse is arranging for the dietician to see her. I don't think they'll let her out until she has a good appetite, to do otherwise would just take her straight back to square one.

the triumph of hope over experience...

...that was the last sentence I posted....

Sunday morning. LD and I took elderly pooch for a walk in the countryside. Walk cut short by my needing to get a decent signal on my mobile, the better to converse with a) Care Link, who were still being bombarded with calls from mum, b) the home care team, to ask them to explain again to mum that the Care Link emergency button was for just that, especially on Bank Holiday weekend and c) mum's neighbour, to do the same. I resolved to go over a little earlier than planned.

Sunday midday. I have just entered the portals of TESCO when Mr Lily phones. Mum has phoned Care Link again, saying she has back pain, should they go round. Yes please. Shopping done and no more phone calls, I start to relax. Laundry is brought in from and hung out on the line, the back garden lawns are de-pooped, a little knitting is done. I have just decided what to cook for a late lunch when CL phone again. They're very concerned. Mum isn't eating or drinking, she's confused and complaining of severe pain. I tell them I'm on my way.

The CL warden is with mum, she has just written me a note spelling out their concerns, she is worried that mum is dehydrated and her kidneys are beginning to suffer. CL phones the on-call doctor. I chase it up after a while, the doctor bypasses a visit and arranges for mum to be admitted to hospital there and then.

We arrive at the Acute Admissions ward at 5pm. The usual interminable waits between x-ray, pain relief and finally, saline drip. Mum is not pleased when told she must stay overnight but she doesn't throw a wobbler. We have some really tender, hand-holding moments and mum says she's glad I stayed with her, she won't forget it. lol. She keeps needing to spend a penny but by the time she's in situ, has already spent it, resulting in having to change her pyjamas and then her nightie. I give the nurse the CL note, to put in mum's file. I finally leave at 23:30, shattered.

the 'rest' of Saturday

It was wonderful to be back home on Saturday afternoon, to be able to offload to Mr Lily, sort out some laundry for the fully functional washing machine, have a shower and wash my hair. I put on my pyjamas and headed for the settee, tv and knitting, hoping for a relaxing few hours before an early night.

Care Link phoned quite a few times to keep me updated - mum was constantly pressing her call button and saying she needed help, when they went out to her, she said she didn't. The home carer went at tea-time and lovely daughter around 8pm, to check mum had taken her night-time medication. On her return, she reported that mum had hardly eaten anything, had been sick again and wouldn't go to bed. She had told LD "I hate it here".

I was on my way to bed just after ten when the phone went. Care Link was concerned. Mum seemed confused, had called them 20 times today and they would have to phone me if during the night if they needed to go out to her because they didn't have a key. There was a CL worker with her at that moment so I threw a jumper over my pyjamas and LD drove me over. A lovely man was there and said he was worried that if he'd left her, she would have wandered out as she was talking about knocking up her neighbour. I gave him LD's front door key and thanked him for looking after mum.

Mum was back on the "something funny going on" loop, she didn't seem to understand why people had been coming all day and didn't "trust that man" (the CL worker). I tried to explain about the discharge care plan and when to use the CL call button but I don't think it sank in. She was in pain again so I gave her some painkillers and she had a few sips of tea. She was clearly exhausted, her eyes kept closing, but she refused to get ready for bed. She was still in her discharge clothes. "You can go" she said, but not as vehemently as previously. I finally managed to persuade her to go to bed but couldn't get her to change into her nightclothes, she couldn't be bothered. I sat with her for a while until I was satisfied that she was rested and likely to sleep, then LD and I came home.

Unwind time needed, so the early night morphed into the usual after midnight bedtime. No calls during the night - Yay! Up fairly refreshed around 7.30 when elderly dog scratched at the bedroom door to be let out. I've put another wash load in and am now going to have my breakfast. Fingers crossed today will be less chewy.

desperately seeking snoozin'

Brought mum home from the hospital Friday afternoon. Over the next few hours she complained of pain in her hip and back but the painkillers were slow to act. She was also sick quite a lot. She debated calling out the doctor but was afraid it would mean another trip to the hospital. Around 7.30pm she seemed to be settling but did not want to get into her pyjamas, instead she lay down on the bed in her day clothes. I expected her to nap for an hour or two so put a blanket over her and stayed up, waiting for her to wake. Some time after midnight I gave up and went to bed myself, also semi-dressed.

In the early hours of the morning mum switched on the light in my bedroom and said the pain was so bad she wanted me to call the doctor. After three phone calls, much repeating of symptoms, medical history and current medication, a very kind doctor arrived around 4.30am. He examined mum thoroughly and after a urine test, deduced that she had a water infection that was making her queasy which in turn made her vomit the pain killers before they had a chance to work, hence the pain. He prescribed antibiotics and anti-nausea tablets. We went back to bed around 6am.

I was up by 8.30am for the carer to arrive. Mum was still asleep so the carer stayed while I dashed to the chemist for the prescription. Mum got up around 10, in pain from her hip and nauseous. Medication was taken and tiny amounts of drinks and toast. Mum was subdued. The carer arrived to do lunch, mum wasn't hungry so I said I would see to it but in the meantime took advantage of the carer's being there to get some shopping in.

The afternoon dragged on. Mum seemed to be in a tetchy mood. She started to repeat that there was "something funny going on" because she had been perfectly all right then all of a sudden felt so ill. She asked me if she were dying. I told her about the water infection etc., several times. She would not eat anything I suggested. She seemed to be 'brightening' up - she started to read the newspaper - so I tried to catch forty winks on the settee. After about ten minutes mum was up in her zimmer frame, complaining that she felt a prisoner in her own home. I thought she wanted to go out somewhere, but no. She wanted me to go!

I was half way home when the phone rang. It was the Care Link worker. Mum had called the emergency service and told them that her daughter was turning people against her/keeping her a prisoner. A couple more similar messages received from Care Link over the next few hours. Lovely daughter is going round later to check mum takes her night-time antibiotics.

zzzzzzzzzzzzzzzzzzzzzzzz

Thursday

I remembered what mum said when I woke up this morning, it just popped into my head. She couldn't believe how easily I'd got her in there (old folks' home, in mum's imagination), "like a lamb to the slaughter".

Later............

Met the Social Worker on the Ward at 2pm to arrange mum's care plan with her. (She's going home tomorrow.) Agreed care workers would come in breakfast, lunch and teatime, seven days a week, to check she's eating and taking her meds and sort out any problems. Will have to pay for it but if mum's pockets shrink, I'll settle the bill, it'll be worth it for the peace of mind (and the one night visit less a week I hope to gain from it). Also persuaded mum to consider trying a day care centre once a week, for a change of scene and company. She may well rebel against it all but I hope to keep it all in place. Mum said she didn't have any memory difficulties but was unable to name the months of the year backwards from December, she just got stuck in loop between November and July, missing out October and September. Weird.

Even Later......
I flooded my new kitchen tonight, loosening one or two tiles :-( The washing machine hasn't worked properly since it went back into its new place; I was trying to work out why and in the process accidentally opened the unattached hot water pipe which proceeded to gush like a horizontal geyzer. Much screeching, mopping (and chuntering from Mr Lily) later, I have decided to call a plumber. I think mum jinxed me for not visiting tonight.

Wednesday's child is full of woe

I only stayed with mum for 15 minutes tonight, if that. She was on the attack again and even telling her she was going to be discharged in the next day or two, as soon as a care plan was in place, didn't help. Nothing but going home that minute would do. Anything else was a gross betrayal. The weird thing is I can't for the life of me remember the hurtful expression she came out with that got me out of my chair and heading for the exit. It really bugs me. I feel like chunks of my brain are starting to die off too.

I'm glad mum will be going home soon, for her sake, but I'm dreading what the future holds.

Rebel without a pause

Not too bad tonight, mum still tetchy and very vocal but a lot of her frustration and anger directed at the staff and hospital procedures - "not proper nurses...don't care about old people...treat you like you're senile even when you're not...never come when you need them....never seen a doctor" and so on. Encouraging signs - only 2 maltesers left in the packet ("the nurses must have had them") and the chart showed regular meals, albeit small portions, being eaten.

She was complaining of a lot of pain in her hip today and was adamant she hadn't been given any painkillers, even though the chart indicated she'd had some about an hour before I arrived. She was in yet another change of nightwear (is she right about the nurses ignoring her when she needs the toilet?) - a pair of pyjamas far too big for her, the trousers fell round her ankles as she was getting into bed. I'll take a couple of pairs of her own tomorrow. Still asking me to take her home and not liking being told I'd have to wait until the doctor said it was ok. Still, she did thank me for coming at the end of the visit.

encore

My mother should have been an actress. The nurse later told me that she had been fine all day, wishing she could go home but quite accepting of being in hospital, pleasant to staff, eating her meals, albeit small portions. Which came as quite a surprise given the performance I was treated to tonight. I arrived to mum's attempting to strip off in front of the ward and visitors. Up went the nightie, down went the boobs, ye gods! It took some persuasion to get her covered up again, into her dressing gown and sit in the chair rather than attempt the Great Escape (by zimmer frame rather than motorcycle). I tried to reason with her, I reminded her of the time when I was hospitalised for a fortnight (I was about 7) with a mastoid infection and asked her what she would have done if I had said half way through the treatment that I was ok and wanted to go home. I'm sure she could see the logic but she wouldn't admit it - "you've got an answer for everything, its like talking to a brick wall" she retorted.

The next hour's visit was full of all the usual entreaties, complaints and character assassination of yours truly - some of which was overheard by one of the nurses attending to the patient in the next bed. Foolishly, although with the best of intentions, she told mum not to be nasty to me as I was just trying to help. Of course, that was translated into my having got my claws into the staff now. Mum added a new dimension to the "you've put me in this place to die" accusation - apparently having left me everything (in her will), I couldn't wait - hence the cunning plan! She was adamant she had cried all night and couldn't eat or drink. Amazingly feisty considering such deprivation. I had taken her tonight's Gazette, a couple of new magazines and a packet of Maltesers. She wasn't interested, she was too upset. She wanted to write to her solicitor. I gave her a pen and a note pad. She said there was no point in bothering because I would make sure that he didn't receive it.

The nurse told me mum had a heart x-ray and a brain scan today, as well as more physiotherapy. The doctor is pleased with her progress and may be looking at discharging her by the end of the week. The Fast Team will get involved so hopefully a good care package can be put in place. The nurse was most sympathetic as I left - she couldn't believe the change in mum, she reckoned she had just saved up all her frustration for me. Little tinker. Lovely daughter says one day I'll look back on all this and laugh. She's probably right.

sigh of relief Sunday

Mum was much cheerier today. Although still wanting to go home and chuntering loudly about being stuck on the 'senile' ward, there was no unpleasantness directed at me or lovely daughter and she smiled a lot. She seemed much better orientated to time and place and was happy to chat about things other than her stay in hospital. Her nurse said she was eating fine and had a good sleep earlier in the afternoon but a urine test had indicated a water infection (which might explain yesterday's paranoia?). The doctor will be informed tomorrow so mum should get some medication to sort that out. Fingers crossed mum will still be in a good mood tomorrow.

The kitchen is finished! (sorry about the fuzzy mobile photos, they look better when clicked on)

Can you spot an old feature, subtly changed?

Saturday

Lovely daughter and I visit mum, greeted by a tetchy "I hope you've come to take me home." Repeat of yesterday's vitriol and confusion. She tells me I'm hard as nails, that I don't listen to her and am just a parrot for explaining over and over again why she is in hospital and can't go home yet.

New bones of contention - I've brainwashed both my children, she can't believe how cunning I've been to manoeuvre her into this place - she thought I was taking her shopping (in bare feet and a nightie?), she's in pain and they won't give her any pain relief, they dragged her out of bed and made her sit in a chair because they want the beds to look tidy. She can't eat or drink, she's so worried; she'll die in this place. Where do you think you are? I ask. "You know where I am!" Where do you think you are? "An old folks' home!" Again I show her the hospital brochure. She says she must be in a special annexe where old people no-one cares about are left to die. She compares herself unfavourably with other patients who get visitors. (We don't count, apparently.) LD and I give up after 20 minutes and leave.

I speak to one of mum's named nurses. She tells me that apart from mentioning the 'conspiracy' last night, she's doing fine - she's eating and drinking, has been given stronger painkillers and can walk with support! She's hooked up to a 24 hour heart monitor at the moment. The results should be through Monday/Tuesday. I am close to tears when we leave. *LD promises to come with me again on Sunday. I am so grateful - I dread facing mum on my own. Shattered, I go to bed 'for an hour' early evening and don't wake up until midnight.

* Other good things about today:

• I call into our local Boyes to see whether the wool I ordered for a bedspread I intend knitting in time for LD's 30th birthday (I have 28 months to do it in!) has arrived - I already have 4 x 400 gram skeins but need another 4. Another store has 4 and will send them over. I manage to get into my online Ravelry stash on my mobile and discover that the yarn I already have and the yarn on order are from the same dye lot!
• We are getting closer to finishing the kitchen. The redecorating is all done and the appliances and furniture back in, we just have to finish sorting through and returning the stuff that came out of it, hopefully binning/recycling a good portion to reduce clutter. I'll post before and after pictures when we're put to rights.

Mum Friday

I drag myself to work, exhausted, and beloved son promises to visit mum on the afternoon before returning to Nottingham. (He also did the evening visit yesterday by which time mum had forgotten I'd ever been with her and was furious with me.) He spends an hour with her and tries to put a good word in for me as she is still fixated on the conspiracy theory. He says he managed to get her to laugh so I'm hoping she'll be in a better mood when I go at 6. Pah.

"Will you take me home? I want to go home NOW. Why can't you take me home? I hate it here! You had this all planned. You could take me home if you wanted to. If you loved me you'd take me home." Over and over I explain why she is in hospital - for tests to find out why she is falling and to get her better so she can go home. A bit disingenuous of me, but not so far from the truth. (She has had blood tests and scans today.) She doesn't believe me and doesn't understand why she is there. "Why do you keep going on about falling? (She doesn't seem to remember yesterday's fall or that I stayed with her all day, apparently I just "dumped" her there.) Did Mr Lily put you up to this? Your dad would be furious if he could see me now. He would look after me, the difference was he loved me. I've no-one to turn to, nobody cares, everyone else has loving families who visit..." I try to reassure her that its the doctor who made the decision about keeping her in but she thinks I orchestrated everything and could discharge her without consultation; the agitation continues for over an hour. She tells me beloved son is the only one who cares/listens to her, "he's the best one". She has taken against lovely daughter because she had praised the old folks' home she used to work in - further proof of the conspiracy theory.

At some point I realise she thinks she's in a care home because her ward only has rather poorly old ladies in it, "left here to die". I show her the 'Welcome to James Cook University Hospital' booklet by her bed. I think she begins to believe me. I try to encourage her to eat more and get her strength up, explaining that weakness could be a factor in her falling. She tells me the food is awful and she's too worried and upset to eat. She says "when you have children, you hope they'll be like you, but you're not." I laugh and say no, I'm quite cheerful.

Finally I get her to drink some Sprite lemonade and she puts on her glasses to read the Gazette I brought her, along with a couple of magazines, clean nightie, socks and slippers, toothbrush etc. The last ten minutes are relatively smooth going, she seems to have cheered up a bit. I promise to visit again on Saturday.

fun-erals

I've been to countless funerals over the last ten years, family and friends - an alarming number in our age group (50s). The best have been the humanitarian ones, they seem to offer a more flexible, personal and joyous celebration of a life lost than those within a faith framework, a generalisation I know, and there have been exceptions, but I love the informality of the former and the opportunity for friends and family to share their memories of the departed, evoking tears and laughter in equal measure. The worst religious service I ever went to had a vicar droning on about 'ooh she loved her bingo, didn't she....she loved her cruises, didn't she....eeh, she liked a good laugh, didn't she", you get the picture, or rather you don't - it made the deceased sound like a cartoon character.

The best - the funeral that tried to make sense of what had happened for the little daughter left behind by including a play about a prince that turned into a star and went to heaven. After the service, a roman candle was lit at the graveside and shot up into the grey, rainy sky, exploding just like a star. Then there was my uncle's funeral for which his son had chosen the Rolling Stones' Not Fade Away as the last piece of music because his dad had loved the band. (He had wanted to play Street Fighting Man 'cos Uncle J was a bit of a lad in his day, but decided against it!). I still chuckle at the memory of a friend's funeral nearly two years ago, at which Mr Lily (fortified by several alcofrolic beverages) told/acted out the story of the night we went to see Carmen, all dressed up, and afterwards he and M ordered fish and chips to the tune of Toreador. I think the vicar was a bit shell-shocked - "Well, follow that!" he said. Poor fellow, lol.

This Wednesday's funeral had been planned down to the last detail by the guest of honour herself. She chose the poems - 'Do not stand at my grave and weep...' and one written by herself 'I am not afraid to die..' that produced much sniffling in the house, and the music - a Kate Bush track, the Can-Can and to finish, 'I can see clearly now'. I'd never really listened closely to the words before but that song was just perfect for such an extraordinary person's life cut short by cancer. One thing she didn't plan but would have hooted with laughter at, was her husband's final gift to her - a bag of weed tucked into her jeans pocket, for the journey.

I used to think I'd like to plan my funeral, but now I'm thinking, funerals are for those left behind. Should my family choose the readings and music to reflect what I meant to them? Or should I impose the laughing Elvis 'Are you lonesome tonight?' on all and sundry? Or pick a real tear-jerker? Or a favourite Andrea Bocelli track that will mystify all the non-Italians in the congregation (I could provide a translation on the order of service, I suppose.) Getting maudlin now. And its after 4 am (nettle devils again). Must go to bed, work tomorrow.

Wednesday --> Thursday

Wednesday
High points - friend's funeral and wake, lovely touching and personal service, large gathering of friends in the sunshine afterwards, great vibes. Beloved son arriving late afternoon.
Low point - visiting mum afterwards, whinge, whinge, whinge.
Sad, eh?
Thursday
8am mum phones, she's had another fall, can I come. Long story short, doctor's surgery advises I call an ambulance, spend the next 8 hours in hospital with mum, most of which involved her voicing (loudly) her conspiracy theory that I had plotted the whole thing etc etc. The doctor wants to keep her in for a few days to run tests on why she is falling and what kind of care package she needs to be safe. I'm hoping he'll say residential care. She's planning on getting her solicitor onto me if he does.

..and the rest of Tuesday..

..written up at this late hour because the nettle devils wouldn't let me sleep. Got a cancellation at the dentist's this afternoon so my sharp broken tooth is now smoothly filed down. Back home to wait for lovely daughter to accompany me to mum's, chivvied on by a phone call from mum's neighbour who asks on her behalf whether I'm coming tonight. When we arrive mum says, "oh you're here at last...its awful when you've no-one to turn to" and "I bet you wouldn't have come if (neighbour) hadn't rung". She is still in her nightie and dressing gown from this morning. Mrs Hyde continues in this vein for quite a while before finally mellowing into Dr Jekyll, helped by drip fed fish and chips, cups of tea, biscuits and cake. The bedtime carers arrive and mum seems to like them, she allows them to take a spare door key, so no more having to leave the door unlocked to make sure they can get in.

I'm in a hurry so...

...here's a quick lunchtime run-down of the low-down on Sunday to Tuesday lunchtime..

Sunday - mum doesn't phone at all. Unsettling, that. I tell myself its the anti-depressants kicking in (I know, too early) and don't tempt fate by phoning, hoping I won't regret it.

Monday - return to work after lunch break - mum has had a fall (this afternoon, phew!) and is in A&E. Join her there, no bones broken, very painful bruising. Hospital promises 3 times a day visits from the Rapid Response team, starting Tuesday, and sends us home with a tiny zimmer frame. Manage to persuade mum to leave the sofa and go to bed around 22:30, by which time mum's bruised bump on the head has flattened but the bruise has travelled down to her eye. I stay the night wearing one of mum's nighties - it fits!?! Amazingly no interruptions from mum.

Tuesday - we both get up around 06:30. Mum sporting a spectacular shiner - she can hardly open her right eye because the lid is swollen with black/purple blood from the bruise. The bruising still hasn't come out much on her thigh - she says that and her lower back are the most painful parts. Before leaving for work, I tell her I'll be back at tea-time and that the carers will come to do breakfast and lunch. Came home at lunchtime to take my medication and grab something to eat. Mum phones, confused, hasn't seen anybody/eaten anything all day. Thought I said I was coming lunchtime; carer arrives during this conversation to do lunch and tells me she gave mum her breakfast and made sure she took her tablets early this morning. She sounds lovely. The phone has just rung, apparently mum also had a visit from a council worker this morning to install the emergency call equipment! I can rest easy now, I think. Well, until tonight.

sunshine and showers

That was the weather and mum today. She slipped in and out of good/grouchy moods umpteen times in the six hours I was with her, mostly due to memory loss but also punctuated by annoyance with me - "I wish you hadn't got the doctor out....I hope there's no-one else coming....I'll just refuse to go (to the memory loss clinic)" etc. First she lost her keys - she'd moved them from where we'd put them on Thursday, eventually they turned up in a cupboard. Then she lost her specs and was convinced someone had taken them - that delayed our trip to Morrisons for about half an hour while we both hunted round the house. Not having found them, the usual shopping marathon was remarkably swift as mum was anxious to get home and ask her neighbour if she'd left them at her house.

Back home I had to phone the bank up again - the hole in the wall had refused to unblock the pin on mum's card - went through the same ridiculous performance of trying to get a deaf, confused, 89 year old to provide security information over the phone before the bank would tell me anything. I'm afraid I was a little short with the poor man over the lack of alternative strategies for customers with special needs. He, on the other hand, was most apologetic and polite. Oh dear. It transpired that a new pin had been sent out to mum, goodness knows where that letter went, hence the problems with the card. They're going to send another new one out next week, so that should sort it out.

Mum's specs turned up at last, in one of the bedrooms - looks at me suspiciously "well, that's peculiar, why didn't I see them there before?" Just as I was thinking it was time to escape, mum remembered our plan for the shower and hair washing. Darn. Washed mum's hair in the sink before the shower - much better system, I didn't get my front soaking wet that way.

Home, exhausted. Went to bed around six. Got up just after 11pm. And here I am.