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.