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?

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!

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.

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.

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.

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?

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.

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.