Week Thirty-Seven

Mammy in the front garden of her very first home…

I still have done little about finding a new home for Mum and am beginning to panic. I phoned the Social Worker to see if he could help steer me in the right direction before the MDM (Multi-Disciplinary Meeting), but his advice is for me to do nothing. He said that Gold Acre had been out of order to make such a demand before a decision has been made. Apparently we will all discuss the Continuing Care Assessment and the Social Worker will have also done his own assessment before the review. He seems to be very cross at the way they are going about this. I am relieved not to be having to find Mum a home before the end of next month, but I hope it doesn’t jeopardize Mum’s chances of the best care.

It’s now August bank-holiday and Mum still has yellow bruising around her face. The weather is still fine enough for us to stroll in the garden area and, despite finding Mum rendered immobile in her room when I visit – either in the bucket chair or with her feet up on the bed – I always manage to get her up. On Saturday I got her out of a soggy, smelly chair and took her into the bathroom to change her. She was quite lucid and in much better form when she was clean and up and about.

***

Chapter 20

The boys are now back at school for the start of Conor’s year 8 and final GCSE year for Joshua. I continue decorating and Simon and I are busy setting up our new business. Who knows what other exciting challenges we have in store…

The check-up at the West Hospital was not good. The doctor began by explaining that it had been a Kerotocyst, formed from the cells that make the enamel for teeth. Good that it is not a cancerous cyst, but it does mean that it could grow back again and that we will need to keep an eye on it. When he checked inside her mouth his disgusted expression told the story before his words did. Apparently the wound was completely infected and full of puss. He did say that it is difficult to keep such a wound clean, but I don’t think he expected it to be so bad. He requested a sharp pink needle, unsure as to whether Mum would allow him to proceed, but did so armed with a bowl to catch the fluid. It was satisfyingly gross as he injected a needle full of Corsodyl to force out an equal amount of puss and gunge into the waiting receptacle. Poor Mum, the unpleasant sensation must have tasted foul. The doctor could now only prescribe a dose of antibiotics and reschedule the checkup for next Thursday. Waiting for the prescription, Mum was saying again how she wants to kill herself and then arguing that she shouldn’t. I do wonder how old that notion of wanting to die really is. Or is it a new thought? Is she capable of new thought? There is so little that she says intelligibly – “Where are the babbies?” “Who are you?” “I want to kill myself.” – these seem to be all I hear nowadays, except “Yes/No” answers. It is terribly sad, but fascinating nevertheless.

It is difficult trying to invent enthusiasm when Mum does not seem to care whether I’m there or not. She does sometimes respond when I’m bubbly and bouncy, but I don’t always feel that way. It seems that they have decided to take Mum off the Tegretol and put her on the Cepra to control the Cortical Mioclonus. It has certainly stopped the jerks already. I find her very ‘low’ though, but that may be just a reflection of my own mood? On Sunday her head was so stooped that as she shuffled around her room she would make first contact with the top of her head at each wall or barrier. I found myself following her around with my hand in front of her to cushion her head, just like you do when toddlers’ heads come smack level with all the tables and chair arms. She has started asking me who I am again too. Occasionally she finds my answer reassuring, but just as often she cannot believe me and is distressed by it. I think she likes the hugs, kisses and human contact, but there’s not much else I can do.

***

Check-up number two went much better. The infection was gone and the hole was beginning to heal. The doctor let me look at the extensive, gaping hole in her mouth. He requested some ‘BIP’, which looked like a fabric soaked in pungent, yellow ‘germalene’-type stuff. The purpose was to block food going into the hole and stop reinfection. It also allows the wound to heal inside out so that it can heal completely clean. Courageously he made to poke a strip of this smelly antiseptic ‘BIP’, with tweezers, into the hole, but she wouldn’t let him. She was outraged. She left the clinic stressed and man-handled, but soon forgot and drove away fairly happily in the taxi.

Mum’s review – or MDM – is tomorrow. I’m anxious as this is where I think Gold Acre will say that Mum has to leave them and then I expect the NHS and the Council to be in dispute about the level of Mum’s needs, suitable alternative care and, of course, funding.

***

I read again through the ‘NHS Continuing Healthcare Needs Checklist’ that Gold Acre had completed in May this year and have highlighted the areas that I consider inaccurate. I took it with me to the meeting where five of us were present: – the Social Worker, Mum’s key nurse, two other specialist nurses and myself.

Firstly one of the other nurses said that Avril was now ready for discharge and asked me whether I had been to look at homes for her. I admitted that I hadn’t as I don’t know what I’m looking for. They told me that the meeting was part of the process to decide on the question of needs and funding. The decision would then go to a Panel, who would decide the final outcome. I am still not sure what difference it will make to Mum or myself, who funds the continuing care, but understand this to be a necessary stage in the proceedings. What is important to us is the assessment they make of her needs, level of care and therefore what type of home she needs. We discussed each of the 11 categories – from behaviour, communication, cognition…through to medication, continence and ASC (Altered States of Consciousness) – with each interest group presenting slightly different perspectives. The result was that she scored one ‘severe need’, two ‘high need’, two ‘moderate need’, four ‘low need’ and two ‘no need’. The nurse had written:

“Mrs Haynes’ challenging behaviour has now settled in to a manageable, predictable pattern and no longer requires a hospital. There is a high level of cognitive impairment and all activities of daily living require meeting. Sometimes there are minimal bursts of agitation on nursing intervention. Mrs Haynes’ needs could now be adequately met in a community setting with appropriate registration. Requires a 117 aftercare.”

‘Section 117 aftercare’ is the kind of care she will need, having come off a ‘Section 3’, apparently.

She admitted that Mum’s behaviour would be much worse if not carefully managed by isolating her away from any noise. She also stressed that Mum cannot make any needs known, nor can she do anything at all for herself. I was surprised to learn that Mum has to take ‘Senna’ on a daily basis too, as she no longer knows how to push…

So, they are requesting full continuing NHS care funding, but what do I look for? The Social Worker said that he was struggling to think of anywhere in Nottinghamshire where that level of care could be replicated. The nurses were all equally scratching their heads to think of a place with sufficient registration, but where the environment would not be too harsh… Eventually the Social Worker said that he thought it was very wrong of them to have expected me – just a family member – to be able to find a suitable home for Mum, when they, with all their knowledge and experience, could not think of one suitable place between them. Good point.

Still, I do have to look. They gave me a directory of Nottinghamshire homes and discussed the benefits of different registrations, but still they were struggling to name a plausible place. They came up with two suggestions – ‘Kirk Way’ in Cotgrave and ‘Sunset Copse’ in Lowdham. They also suggested that I look at the ‘CQC link’ on the internet to see what the inspectors think of these homes. I will have a browse over the weekend and speak to the Social Worker when he’s back at work on Monday. I don’t really feel I can do this on my own.

Week Thirty-Six

Mammy loved to laugh and giggle…

I had a heavy wave of depression on Thursday, which I can still taste. It was as if all the disappointments, fear and pain of my life was on me – from my dad, through disastrous relationships, mental illness of others, miscarriages, deaths, sickness and my mum’s suffering… I am not depressed now, but still feel bruised.

Today I was advised of a multi-disciplinary meeting , to be held on 22^nd September, and was warned that they will be sending Mammy out ‘into the community’ as there is nothing more that they can do for her, as ‘her needs are not too severe’. I will be expected meanwhile to find a suitable home for her. Help!!!! I will need to contact the social worker for some direction in all of this, as I don’t know what sort of places are available or suitable.

I stayed some time with Mum, who was very concerned about ‘the babbies’ again and I had to keep reassuring her that the babies were all sorted and happy and that she had done it all. She kept shouting for ‘Help!’ and ‘Stop it!’ but was unable to explain. Suddenly I realised that it was after 5pm and tea-time. I fed Mum, but was reminded twice about ‘protected mealtimes’ – implying that I should not be there at mealtimes. I said that if I am not allowed to stay and feed her, that they should let me know for definite. I’m feeling defensive and very irritable about their attitude here!

***

This morning I found a message from the Maxillofacial Unit, saying Mum’s operation is next Monday. It said that she would also be required to attend tomorrow for a pre-clerking and I was to phone back if we could attend. I rang Gold Acre, but they had not yet been informed. It has finally been confirmed, but I will have to take Mum in myself, as Gold Acre ‘do not have the staff to spare at short notice’. I cannot get Mum into my car, so I’ll have to order us a big taxi to the West Hospital and back, before driving myself home.

***

Mum was washed and ready and the taxi came swiftly. In the waiting room at Maxillofacial, she started to make sudden involuntary noises and to sing, coming across quite loud in that environment; the other people waiting seemed bemused and slightly disturbed by her presentation, but Josh (who I’d asked to accompany me) and I were amused, knowing that she was happy and enjoying herself. She even shared Josh’s earphones and listened (equally bemused) to some of his ‘noise-music’.

We waited nearly 2 hours until the whole waiting room had emptied, before we were called through to see two nurses. Mum had to be weighed and measured, have blood taken, blood-pressure measured, swabs taken, ECG done, and I had forms to fill in. The nurse asked me if Mum could walk and stand and although I said yes, I added that understanding the instructions is the problem. Getting Mum on to the scales was a comical palaver involving Josh lifting Mum’s feet one at a time and me heaving her forward, whilst the nurses stood watching. Because she was coming from a hospital, the rules were much tighter on hygiene, with a long list of questions about infections, medications, etc that I was not able to fully answer.

They have given Mum some ‘Antimicrobial Wash’, which she will have to be washed in from now until the operation on Monday. They also gave the usual instructions about food starvation from midnight before the operation. Their biggest concern was that Mum should have an escort with her all day, otherwise they would not go ahead, because they themselves do not have ‘specialist’ staff. I assured them that Gold Acre would be sending someone, as a week is not ‘short notice’. They did say that that they would endeavour to give Mum the first operation of the day, to lessen the risk of her needing to stay in over night. Doing the bloods was stressful as the needles made her jump, but we got through the experience with the promise of some chocolate. The last call was for the ECG. At the end, Mum’s mood was turning sour, so she didn’t enjoy the hot chocolate or the sandwich.

The taxi came very swiftly, but it was half past rush hour and took forty-five minutes to get a very grumpy Mum back to Gold Acre. I gave the papers to the nurse in charge and explained all the instructions. I told her that I would be at the hospital at some point during the day, but that I had other commitments on Monday.

***

On Wednesday I got a call from Gold Acre explaining that they were not prepared to send anyone with Mum on Monday. They knew that the West Hospital would not go ahead therefore and that if she is to have the operation, I will have to go and stay with her all day. The Mental Health practitioners apparently “do not stay with patients in ordinary hospitals” and ordinary hospitals don’t admit mental-health patients without ‘a full escort’. The obvious conclusion:- mental health patients do not get the operations and treatments that they need, unless someone else is there to sit it through with them!

The ward manager seemed to imply that it was my fault for arranging the operation, when in fact the doctor, back in May (2 months ago), had said that Mum needed to have the cyst removed as soon as possible. I cannot leave Mum with an untreated cyst growing in her mouth, displacing her teeth and nostrils. They still don’t even know whether the cyst is cancerous or not.

I don’t understand whether this has been a recent policy shift, but I have twice been to meet Mum at the West Hospital, having being escorted there by Gold Acre staff, who stayed with us for the duration of the appointments and took Mum home again. Now they are not prepared to do that. I am disappointed that again the system is allowing the most vulnerable to be neglected – as if they do not deserve to live in any comfort or dignity and are better off dead sooner rather than later. Whilst I can understand a depressed person wanting to find a way out, I cannot understand a healthy person not wanting to offer unconditional care. But I guess I am the one responsible for Mum’s care, not the ‘system’.

***

My garden is now completely overgrown. I have harvested a feast of garden produce – garlic, onions, potatoes, beetroot and peas – but I spent too long bending, pulling and definitely not looking after my back or pacing the work. I still await a promising crop of tomatoes, grapes and apples. My garden is such a gift!

***

Gold Acre staff finally agreed to take Mum in for her operation, at least, so I met them there just after 8.30am. It was suggested that she might have to stay overnight, which of course would mean me staying too. The nurses had managed to get Mum first on the list.

We dressed Mum in the backless gown and then the escort left. Mum perked up a bit then and responded positively to my conversation, tickles and jokes. Wheeling along the corridors in the flat-tyred wheelchair and later on the bed trolley, Mum was clearly enjoying the rides. “Wheee…” she giggled around each corner.

In the anaesthetist’s room I felt in the way as the tiny room was over-crowded by Mum, me and the two nurses. They needed to shuffle her up the bed, so two male nurses squeezed in too. To reassure or hold her still, I was apparently useful – also to answer the questions of course. Despite the warning, the needle still hurt her then on with the sticky monitors, oxygen mask and sleepy juice…a kiss and I’d gone. She’ll be fine…

Less than an hour later, without even time for a doze, I was recalled to the recovery room. Mammy was screaming and throwing her legs all over the place, with blood seeping from her nose and mouth. She was clearly in great distress, whether it was pain or not I couldn’t say. The monitors did not show anything obviously wrong. The anaesthetic should still be making the operated area numb, but as Mum didn’t calm down they gave her 6mg of Morphine, then a shot of Lorazepam, but Mum continued howling and writhing around the bed.

They took her back to the ward where I tried to calm her. Her glazed yellow eyes were swollen and bulging, looking manic. Sometimes I whispered, “Mammy, Mammy, it’s alright.” then her screams would settle more quickly, but I didn’t seem able to improve her overall discomfort.

Was she hallucinating or speaking to us as she shouted “Go away! No! Go home!”?

When they straightened her up in the bed they used a slide mat and four nurses, so it’s no wonder that I struggled. I asked if I could have a break to stretch my legs and have some food, so I went to the café and sat with an elderly couple for a little while.

Back on the ward, Mum was still in great distress. As the afternoon faded I was resigning myself to a long day and night there for us both. She would not let me moisten her dry, bloody lips and I supposed that they would require her to be stable and to have eaten before sending her home.

She was slightly less volatile by 4pm, but still contorting her face, shouting, “Kacker, you’re my mother…Avril, I love you…No! No! Tell me why…Go away!”

They said I would have to wait for the doctor to do his rounds so I tried to get Mum to drink some water, but I couldn’t even get her to sit up.

Amazingly, an hour later I was told that Mum could go home. Getting her up and dressed was a fiasco, but I have to admit to being highly motivated to getting her back to Gold Acre, where she could begin to recover in peace and I could go home. Two nurses helped me get Mum ready, then the doctor came and said that Mum’s cyst had been very substantial and that she must use the mouth wash regularly. He would like to see her again in a couple of weeks and there should be results of the biopsy by then. It was becoming obvious that Mum’s teeth and nose were already going back into place. She looks like she’ll have another black eye though.

Back in the taxi I was very relieved, but Mum objected to the bends and speed bumps and suddenly she yelped and heaved. The driver administered tissues and bowls just in time as Mum vomited up copious amounts of thin, brown bloody fluid. We continued and were using the second bowl as we pulled up outside Gold Acre. The smell had long since turned my stomach too, but the driver was completely non-phased by it all. The special taxis have been really superb.

Mum was greeted with smiles and a cheerful welcome, and after depositing Mum, medication and all the information, I got a taxi to Isabelle’s and was soon enjoying a beer in her garden, with time to reflect on the blessings that far out-weigh the limitations of the NHS.

Week Thirty-Five

Mammy and her beloved Malc and their first precious Grand-child

Isabelle has endured her final chemotherapy at last. It has been horrendous for her, but she has carried it brilliantly well. She always looks beautiful and doesn’t moan at all. I think she will bounce back quickly and her head doesn’t look like a tennis ball any more.

Tomorrow Joshua has his own first ‘gig’ at an open-air festival. He has been busy revising for exams, whilst doing lots of band-practices for this special occasion. I’m sure I’ll feel proud to see him performing live on stage with his own music and lyrics.

***

Mum still has two yellow and purple eyes, but is much the same in her general state. Now I usually find her sitting in her ordinary chair with her legs propped up on the bed – I suppose they are nervous that she might fall again. I have been taking her outside for a walk as the weather has been quite glorious. Yesterday she was very wobbly though; it took her a long time to find her balance as she can’t seem to see what she is doing and mistakes patterns on the floor for obstacles. It makes me smile that the sort of words that she still speaks clearly are almost instinctive responses. So, if I say how soft and velvety the petals look, she says “Yes, I know!” Or she receives a strong taste or sound sensation and it will be, “Oh, that’s lovely/horrible…” Sometimes she will choose the opposite, so yesterday, when I gave her some cola to drink, she said “That’s nice and hot.”.

***

Simon has been made redundant, which could well be a blessing, as his work has been all-consuming since Christmas. Hopefully now he will be able to focus more on his exciting projects and innovations and get a business going. We might all need to tighten our belts for a while first though.

***

Today I found Mum dozing in a bucket chair in the dining room, but was first given some forms to fill in about Mum’s qualifications, employment history and such things, which did seem strange (and quite heart-breaking) under the circumstances.

The staff have been concerned again about Mum’s shaking, which seems to be more regular, and have referred her back to Neurology at the West Hospital. The appointment is for next Tuesday.

Two nurses took Mum back to her room and she sat smiling, eyes closed, doing her new sit-up movements. Heaving herself upright she would chant, then would slouch and be immediately asleep, mouth open and completely relaxed. It shocked me at first as it looked like she’d died. She is also very pale. I could not wake her with words or strokes, so I squeezed her knees and she jumped, again a few more sit-ups, song-jingles and out-for-the-count.

I was given a hot meal, dessert, cup of tea and medication to feed her with – in all it took over an hour until the plates were empty and all the time her eyes were closed. She would open her mouth to eat and then be asleep again…every time I squeezed her knee she would playfully growl like a tiger and giggle, but her sleeping was not fake. The staff reasoned that they had given her a bath this morning and it had made her tired. When she’d finished eating, she stood up, eyes still shut and began to shuffle away.

We had good fun today though; I really enjoyed her playfulness and having something to do. The nurse recounted a recent occasion, when a doctor asked Mum to open her mouth and she snapped at him like a crocodile and made him jump. She is funny.

***

Simon is setting up his business and I have been made a director. That is new, exciting and equally daunting. I need to make some wise decisions. I wrote down the things for which I feel myself responsible at the moment. The jobs are diverse and endless…but we do need to earn an income too.

I had to be at the West Hospital today for Mum’s appointment in Neurology. She was with two members of staff and looked very dopey, though they said they had not given her anything.

The Neurology doctor was most impressive. Whilst we were there he read through the salient parts of Mum’s two years in Neurology – the diagnosis of frontal lobe epilepsy, the EEG, etc – and asked me to describe exactly the sort of seizures that I had witnessed. Then he took Mum’s hands, spoke to her and touched her face and hands…he was very gentle. He then offered his diagnosis very clearly and confidently. He doesn’t think Mum has epilepsy, rather that she is exhibiting ‘Cortical Mioclonus’, which is very common with sufferers of CJD and Alzheimer’s. Frontal Lobe seizures usually happen in the middle of the night, in deep sleep, not during waking hours. The faints, he said, sound like ‘complex partial seizures’, followed by Mioclonus as she comes out of the faint. ‘Complex’ because her brain is so caked with plaque. We all experience some ‘Mioclonus’ – it is that feeling as you fall asleep, you dream you are falling and jerk yourself awake. That, he believes, is what Mum is doing. Apparently the Tegretol would need to be at least 600mg, twice a day, to keep epilepsy under control, but Mum is on 100mg twice a day, so it would not stop her having epileptic seizures anyway. The other point is that Tegretol does not control Mioclonus either. We could stop the Tegretol and put Mum on ‘Cepra’, which would control the epilepsy and the Mioclonus, but it could be very disruptive to her mood. The Mioclonus does not damage the brain, so we must consider if it is worth taking the risk of changing her medication. If the Mioclonus were causing Mum distress, or she began having seizures, then it might be worth trying the ‘Cepra’.

The other question he posed was about the dementia – now that Mum is so far gone in her dementia, the symptoms are pretty much indistinguishable, but it could be Fronto Temporal dementia, he thought, rather than Alzheimer’s. He said it might be worth doing another MRI scan, if we wanted to know for sure. Do we want to put Mum through that to satisfy our own curiosity, or not?

So, they are the two questions: MRI? Change to ‘Cepra’?

I still question whether I have done the right thing for Mum. I see her pretty face warm to life with affection and interaction and I wonder how different her quality of life might be if she had remained here with family around her. But I know that the physical environment would also be too challenging here now – with stairs and corners – and showering was already dangerous before…and the complete incontinence…but they are not insurmountable challenges.

***

Mum is still much the same. She has been sad/weepy/fed-up when I find her, but cheers up and is happy by the time I leave. Sometimes she just bursts into laughter for no apparent reason.

Last week when I went, the traffic was bad and I arrived at noon. I know they have ‘protected mealtimes’, but often I arrive before lunch and am able to feed her myself. When the nurse came to answer the door she looked at her watch and said that I could not come in because it was a minute after 12. I apologised for being a bit late and said that I liked to feed Mum, as she always eats in her room. I’d have thought they would appreciate the help, really. Eventually they let me in and I was able to feed a very tearful Mammy. We managed to get out into the garden for fresh air and a walk about too. I put her hair into two pretty plaits as I followed her around and fed her Turkish Delight and tea.

A friend has told me about the RCN deciding to be neutral about new laws on ‘assisted suicides’. I also read that the new Mental Capacity Act states that “doctors must now starve and dehydrate patients to death in some cases. And if they refuse to do this doctors – and nurses too – can be dismissed and treated as criminals.” “’Euthanasia by neglect for mentally incapacitated people”, was how it was described.

It could be just scare-mongering journalism, but I must investigate. Shocking thoughts. The article from RCN (on the BBC website) states,

“The move comes as a survey for a newspaper suggests 74% of people want doctors to be able to help people to end their lives. According to the survey…, support for assisted suicide was especially strong among those aged between 55 and 64. The poll also suggests that six out of 10 people want friends and relatives to be able to help loved ones to die without fear of prosecution….”

[See “RCN neutral on assisted suicide” from the BBC News channel 25/07/09.]

Clearly the issues are very complex. Funding and quality of life being just just two aspects of that complexity from the state perspective. As with the question of ‘they shoot horses, don’t they?’ – we consider it ‘humane’ to put a suffering animal ‘out of its misery’, if it has no prospect of recovery. And how many people can our NHS support on it’s over-stretched resources? Allowing a person to die ‘with dignity’ – is this ‘playing God’? Or is keeping somebody alive on a machine, with no hope of recovery, also ‘playing God’. I believe in the sanctity of life, but I admit to not knowing and to respecting conflicting perspectives here. There are questions of who is responsible for what, who champions the cause of the poor… issues that we all need to address realistically. Still, I find the possibility of abuse of such powers disturbing.

Week Thirty-Four

Mammy having fun in the barn parties with Mon, and the family visiting the island…

It’s Tuesday and I got a message from the boss at Gold Acre, saying not to worry – although you do – but would I please call her. She said she was completing a check-list for Mum, ‘for future care’ needs, of which I will get a copy. She reiterated what the consultant had said – that she has settled well and that when she does become agitated it is predictable – e.g.: noise issues increase her agitation. She was informing me, she said, because Gold Acre is ‘a challenging behaviour unit’ and Mum apparently does not qualify as challenging. I mentioned my anxiety about taking Mum off the Haloperidol and she agreed. She said that they had taken her off and within 24 hours had noticed such a change that they had put her straight back on it.

She said that Mum is one of those who can join in with activities and does. They have activities two mornings a week apparently – I must always come on the wrong mornings.

***

I arrived a little early at the West Hospital, realising that I was nervous for my little Mammy venturing out into the unknown today. I got myself a coffee and observed, feeling quite transparent myself and somewhat spaced out. I spotted a big taxi with a Mammy in it and a carer, who used to work at West Hospital, began pushing the wheelchair. Mum had a face like drugged thunder. He said that she had been ‘difficult’ and “quite vocal this morning”, but I learned later that she had been ‘aggressive’ and had been given a shot of Lorazepam to make her more compliant.

In the Maxillofacial Unit I was working very hard to cheer Mum up and by the time the nurse came she was smiling sweetly. They sent us to their x ray department with a doubt in all our minds as to whether they would be able to do it, but the team were so friendly and good humoured – it was a delight to be there. They were able to do it with Mum sitting, so I fled. I didn’t want to be around those rays myself. They took her back in for a second x-ray, then we went back to see the doctor.

He was from Ghana and spoke almost exclusively to the chap that had brought Mum from Gold Acre, rather than to Mum or me. He said that the ‘growth’ was a cyst and that he would want to completely remove it, under general anaesthetic, as soon as possible. He used the x-ray to show how the cyst had pushed back the bones and parted the front teeth. It is incredible how a growth could have the force to move the teeth so much in such a short time span, especially when you consider how long kids have to wear a brace to straighten crooked teeth. He went on to say that, because Mum was not in a position to give her own consent, he would need the approval of one other doctor before he could go ahead. I asked whether the person with ‘welfare power of attorney’ could make that decision, but apparently not. He said that if two doctors made a decision that was contested by the person with welfare power of attorney, the latter would not win. It is not worth the paper it is written on in court, he says. I was shocked and fascinated. Not that I can imagine wanting to take a doctor to court. I am sure that medical predisposition is to preserve life, but I can imagine issues about the quality of a person’s life versus medical intervention arising…

Chapter 19

I took the boys to see Mum on Wednesday, as they had not seen her since Christmas. She was wet and smelly when I got her out of the reinstated bucket chair. The boys were ‘bored’, but…that’s life. We dropped in on Monica on the way home too – the boys were certainly not bored there.

***

Mum’s cousin Mike and his wife, Val came with their daughter, the other Dawn. We had lunch, then they followed me in their car to Gold Acre. Mum was in good form again, a bit grumpy initially, but we soon had her laughing. We sat outside and baked in the sun together, enjoying one another’s company.

I received a copy of that ‘NHS Continuing Healthcare Needs Checklist’ yesterday. I was surprised by some of the assessments that they have made. For example, they have three categories of need – “A – meets the described need. B- borderline. C- clearly does not meet the described need”. One category of need reads, “Continence care is problematic and requires timely intervention.” they scored that ‘C’ – no need. But she wears pads all the time and is often wet even with them. The other contentious one for me reads, “Mood disturbances or anxiety symptoms or periods of distress that have a severe impact on the individual’s health and/or well being.” They gave that one a ‘C’ too. We all know that Mum certainly has huge periods of distress. Maybe they think they have her all under control now? I don’t. She got ‘C’s (no needs) for ‘mobility’, ‘nutrition’, ‘skin integrity’, ‘breathing’ and ‘Altered States of Consciousness’. Mobility and the latter I would also question. She only got ‘A’s for two categories of need – Cognition and Communication, the latter which reads, “Unable to reliably communicate their needs at any time and in any way, even when all practical steps to do so have been taken.” That made me feel very tearful.

The person sending the checklist did write that “when we get involved with a community nurse assessor and social worker we will meet with yourself and go through a more in-depth checklist.” So it’s not all set in stone yet. I just worry that they are anxious to pass her on before she is ready.

***

Last visit to Mum was very interesting. She was in her room after lunch, although a care-worker rushed in to assure me that she had ‘only just come back to her room…she’s not in the bucket…’ Anyway, I found Mum there chatting and crying happy tears with another resident. A nurse then came to remove the other chap and put Mum’s music on. Mum continued talking and I was struck by how much more alert she seemed to be. Several times she looked directly at me, making good eye contact and smiling. There were also more English words expressed and the hummed tunes were recognisable. She was entertaining ‘the babbies’ again with ‘Frere Jacques’, Jingle Bells and some with ‘make you jump’ endings. I realised that she has not looked like Avril for a long time – like ‘the lights are on, but there’s nobody home’. This time there was somebody home.

I passed a comment to a nurse, who said that Mum’s medication had been increased (the Carbomazapine) because she had been becoming more shaky. I think that might explain the improvement in Mum’s alertness too. That medication is to keep the epilepsy under control, but it is also used against bipolar disorders and schizophrenia.

***

The last couple of weeks finds Mum much the same, though I’m finding the visits more difficult myself. Most of the time she is talking to herself in a way which makes me completely redundant. She doesn’t even answer me with the same degree of clarity that she she does herself.

“Avril? Yes? Diddle dee da bee her? No, I don’t think so. Oh, I see…”

But with me, there is no such level of conversation. Some days she is more shaky, others more alert. She is still very emotional, but not as angry or depressed.

In my recent dreams Mum is constantly with me and I am aware that others do not think that she has any needs. I awake feeling even more protective of her than usual. I have been thinking about all the issues a lot – her past, present and future and how best to meet her needs. Also I have been reading the book that Mum’s cousin has written. In there I learned a little more about the Foster family (Mum’s mum) and the world into which she was born. War rations were still a severe feature until Mum was eight years old and then an explosion of experimentation, ‘Rock n’ Roll’ and the ‘sixties’ (into which Debbie and I were born).

Today, as I was getting ready to go to see Mum, the hospital phoned to say that she had fallen.

She seemed more dozy than usual when I arrived, but she livened up throughout the visit. They had boxed her into the chair by putting her feet up to prevent her falling again. She has a large swelling over her left eye and a big bruise down the side of the right cheek and on her right upper jaw. They said that no-one saw what happened, they just found her on the floor. I wonder whether she had one of her ‘fainting fits’ again, but they have not been mentioned. The doctors gave her a thorough check over apparently and are satisfied. I think she is going to have two real shiners over the next couple of days. We enjoyed one another more today and as we listened to Elvis she kept clapping and telling him how much she loves him.