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melting but not down

Friday, 30 October 2009

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.

Tuesday, 27 October 2009

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.

Monday, 26 October 2009

this blog in a nutshell

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

Saturday, 24 October 2009

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.

Thursday, 22 October 2009

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.

Saturday, 17 October 2009

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, 14 October 2009

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.

Tuesday, 13 October 2009


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.

Monday, 12 October 2009


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.

Friday, 9 October 2009

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.


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.

Thursday, 8 October 2009

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?

Tuesday, 6 October 2009

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.......