Week Forty

Mammy being taken for a ride?

Chapter 21

The results of my recent enquiries are as follows. The discharge coordinator states that Mum should be having her care funded by Social Services, but they are denying receipt of the necessary information regarding the Panel’s decision. He implied some mischief, some delaying tactics and empty pots, but couldn’t give me access to anyone at the PCT or the Panel to speak to. I asked him to find out himself from the PCT if possible.

The Social Worker said he had just come out of a meeting where Avril’s case was being discussed. He complained of aggravation from the NHS due to their lack of understanding about policy and procedure and claims that the NHS have made a mess of this. Apparently there is a common procedure – every case that goes to Panel concludes with a decision that is recorded on a standard proforma. Social Services can then commission the discharge. He thinks there are doubts as to whether the Panel have even met to make a decision, because there is no written evidence of a Panel. He claims that Social Services get charged for ‘delayed discharge’ if they are responsible, but they are not responsible until they have received the Panel’s outcome report. Apparently Sunny Meadows charge over and above the standard care-home rate, so someone will have to pay the difference. This confuses me even more – if NHS recommended Sunny Meadows and that means them having to contribute further to Mum’s care, why are they making it so difficult for each department to get on with it? Social Services won’t be paying any more for Mum than if she went into the cheapest type of home, so…what is the problem? He says there is nothing I can do and he doesn’t know what else to do himself, but he anticipates a speedy resolution. I’m not sure what he’s got up his sleeve… It seems to me that both parties are pointing the finger at the other. Anyway, it’s the twelfth day of Christmas and time to take the decorations down.

***

This is now beginning to feel like a big joke. 10th February and Mum is still in Gold Acre.

Mum was back in her chair, fast asleep and I couldn’t wake her for ages. The nurse told me they had given her a half dose of Lorazepam ‘because of her shakes’. Despite the ‘Cepra’, she seems to be jerking more than ever recently.

Eventually her dinner arrived and she managed to wake enough to open her mouth and eat.

On the last couple of visits I have been disturbed to find Mum lying in her bed in the middle of the day. I know that on previous visits she had been slowly sliding down the chair until her bottom fell off and she landed on the floor. The staff apparently tried all sorts of tricks to keep her upright and said they were going to get advice from the Physio. Anyhow, Mum seemed quite happy in the bed and was very sweet tempered.

After talking to her for some time she suddenly said “I love you!” It was strangely moving and completely unexpected.

Mammy has incredibly good skin – clear, soft and completely unblemished – except for the scars from the fire. Her legs have no hairs, no scars, no veins…mine look like a London A-Z in comparison.

Today she was chuntering away in her semi-comatosed state saying “Yes I know…That’s right..” in a very conciliatory way.

She responded to my funny quips and giggled. I even thought she might get up and dance to ‘Heartbreak Hotel’. That would have been great. I haven’t seen her standing for some weeks now, which makes me sad.

***

Two weeks ago I phoned to prompt the two guys from NHS and Social Services. The man from NHS said he’d ‘been up at Continuing Care’ just that morning and that they (NHS) were accepting responsibility for not informing Social Services properly. He also said that the manager of Sunny Meadows had been off sick and therefore he hadn’t been able to speak to her. Although he said they accepted responsibility for the delay, he then said that “as an organisation (NHS? Gold Acre?) it’s been out of our hands since… well, since it began really.”

The following day Social Services called me back with good news:- The manager in charge has given permission to commission the move on the basis that the NHS had lost the original documents, but all was in order. He had also heard from Sunny Meadows, who had sent a copy of their ‘fees’, which presumably means that they still have a place to offer Mum.

Three hours later I got another call from the same guy in a very different frame of mind. Having looked at the cost of Sunny Meadows, his manager has now decided to dispute it all again and is asking, “Why does she need a ‘Behavioural Management Unit’ when she no longer has behavioural problems”? They now say they will meet her nursing needs, but not ‘fully funded’ at Sunny Meadows. Apparently Sunny Meadows charge about £600 per week for that special unit. I don’t know what they charge in the nursing unit.

What was the point of the whole assessment process then? I am content that Mum is at least settled at Gold Acre and is being reasonably well cared for – certainly better than I could do. But I also know that they cannot keep her there. I had set my heart on Sunny Meadows as a place that could meet Mum’s needs positively, but I wonder what type of home they will say she needs now? Probably the cheapest. I feel quite frustrated and disheartened by it all.

***

On Monday the Social Worker’s Service Organiser asked Sunny Meadows to reassess Mum’s needs to sort out the discrepancies. The Social Worker agrees with me that Mum has had severe behavioural needs and has the potential to present them again, especially in a new setting, with more noise and a probable change of medication. Sunny Meadows had also said that Mum would need the ‘Challenging Behaviour Unit’, rather than the general nursing unit there. So now we await Sunny Meadows’ reassessment and the verdict from Social Services.

My Social Worker said today: “You could write a book on all this!”

“I am doing!” was my reply.

Today I read that “Carers save the UK an estimated £87 billion a year through caring at home, but political parties have not set out how they will support carers in the next government.” ( The Princess Royal Trust for Carers. 11/02/10) I can’t say I am surprised, if homes charge £600 per week.

My Social Worker rang today to confirm that he had had a long chat with the manager at Sunny Meadows and that they are in agreement about something, but I’ve lost track myself. She intends to visit Mum today, report back tomorrow and then resend back to Panel.

***

17th Feb today and progress to report. I had 3 missed messages from Gold Acre and the Social Worker, both asking me to call. I phoned the ward manager at Gold Acre, who informed me that Sunny Meadows had been to reassess Mum, at the Social Worker’s request, and that she agrees that Mum no longer needs a Challenging Behaviour Unit, but that her needs could be met on their other unit – the Nursing Dementia Unit. He said that he was therefore now looking to discharge her. I said I would like to make a couple of calls before discussing this further and he curtly answered that she would be discharged by the end of the week anyway. I was reeling!

I thought it best to phone Sunny Meadows to check the facts there. The manager confirmed that, due to Mum’s deterioration, their Nursing Dementia Unit would now be sufficient to meet Mum’s needs, as she is no longer mobile nor challenging. She said she would be happy to offer her a place there. I managed to remind her that I had found the Nursing Dementia Unit to be extremely noisy. I also said that I was concerned that the reason Mum was no longer mobile was that she has been confined to her room, her chair, her bed and sedatives for so long now – in order to ‘keep her safe’ and manage her behaviour. I shared my worry that Mum would have to stay in her room at Sunny Meadows for the same reasons. I just wanted to cry at how sad it is that she’s like this now. She does not think Mum will relearn to walk, because of the loss of muscle tone and the level of her dementia now. She was very sympathetic and said that she has written in her report that I am concerned about the noise level in the bigger unit – it has 60 beds – and that I might want to consider a smaller home. However she feels confident in their ability to meet Mum’s needs and has every intention of bringing Mum out of her room into the quieter areas during the day.

I don’t feel I have an option to look for anywhere else, as Gold Acre are ready to discharge her this week. She sympathised and said that the ward manager at Gold Acre had been angry about being made to wait so long for this decision. She had told him that I needed to be consulted, but confided that she felt that he seemed to be making his own decisions regardless. She said I must make up my own mind.

I feel very angry that Mum and I are being pushed about like this. Mum is still so young; she should have been encouraged to walk about – been taken for daily walks and allowed to dance…Maybe I should have gone daily to ensure this. I am cross with myself for allowing her to have become immobile and not challenging her care plan more…for not insisting that she be given exercise…I didn’t feel I had the right to question her care though – you don’t argue with Consultants, doctors and nurses, do you?

I spoke through tears to Debbie and her questions echoed mine – Let her go there, where at least she seems to be wanted? Or speak to a solicitor and buy time? Or find somewhere else before the end of the week? She was sympathetic, but the decision and actions will remain mine.

I spoke again to the Social Worker. Yesterday he submitted Sunny Meadows’ reassessment and his own report to the Social Services Panel that commissions these moves. They are meeting on Wednesday and I will therefore hear from him on Thursday. I told him I would be at a funeral on Thursday morning and would want some notice before she was discharged so that I could be there with her. The Social Worker said he was happy with Sunny Meadows’ assessments and was reassured that it was a good safety net, because if Mum’s behaviour does change, she won’t have to go far to be cared for in the ‘Challenging Behaviour Unit’. He said that he trusts the Manager’s judgment, but there is no way of gauging how Mum will respond to the complete change of place, smells, carers and noises. And so I await the decision on Thursday morning.

Week Thirty Nine

Pretty young Mammy with me or Debbie.

Yesterday I took Wendy and Monica to see Mum. I was a bit spaced out though, as I had had some shocking news the day before. My beloved friend ‘Little John’, whom I’ve known since 1985 (23 years) died suddenly in Heidelberg on this remembrance day. I had spoken to him just last week and now he’s dead. I am still in shock and can’t stop crying.

We found Mum slumped in a chair in her room at 10am and all greeted her as she started to whimper. After kisses, cuddles and Monica’s lively banter, everyone relaxed and we remembered people and times past together. Mum continued to cry out spasmodically, but did seem to vaguely engage. Nobody came to Mum’s room until just after 12 noon, when a cleaner walked straight in and was startled by our presence. She fetched us some chairs and shortly afterwards there was a knock on the door and a nurse entered with Mum’s dinner. Well, it was meant to be dinner, but consisted of four dollops of different coloured puree on a plate. I questioned the nurse about it, as Mum has all her own teeth and good ones at that. She said that they had ‘run out of proper food’. My silent question was ‘WHY?’ It’s not like they can’t predict who’ll be there for lunch, is it? I put some green puree with a bit of brown puree on a spoon and tried to feed it to Mum. The spoon was too big and the food was all ‘gloopy’. It took so long to eat and I can’t say that Mum enjoyed it. The sponge and custard, on the other hand, went down like a dream. During the feeding a nurse came in with Mum’s midday dose of tablets. Monica asked and we learned that one was the Trazodone and the other an anti-sickness tablet to counteract some of the other medication. I was struck by the fact that Mum made no attempt at all during those two hours to get out of her chair.

Wendy and Monica were glad to have visited Mum and taken another trip down memory lane together. I learned that Mum and Wendy had been to see Gene Vincent live when they were teenagers and had gone back stage and got an autograph and a kiss from the heart-throb.

I went to put the chairs back in the lounge, which was empty but for two ladies sitting in heavy duty recliner chairs. They are a bit like dentist chairs only more solidly padded and have extra sides and all sorts. I spoke to the shouting lady and stroked her shoulder, offering soothing words of encouragement and immediately she calmed down. I am quite sure they do it for their safety, but these two ladies were strapped in with harnesses like infants in a buggy. What bothered me was that there were no staff around. This lady was so easily placated, but for nearly two hours she had been left alone to cry out.

As I left those rooms to go through the main corridor I spotted four nurses sitting together in the dining room. Another resident approached them and was told to go away as they were having a break. I was getting cross.

As I passed the office I was even more annoyed to see at least six nurses sitting in the office. I appreciate that they may have been doing a ‘hand-over’, having a review, or any other legitimate and worthy business; I also appreciate that the staff need to have breaks during their shifts at work, but surely not all at the same time? To be in an NHS ‘Challenging Behaviour Unit’ with about a dozen members of staff, but nobody willing to meet the needs of the residents was to me quite appalling. Monica and Wendy were also shocked that nobody had come to see Mum except to bring food and medication. It doesn’t seem to be a lack of staff, but something isn’t right!

***

Yesterday Isabelle took me to see the Challenging Behaviour Unit in Cotgrave. It’s not far from Kirk Way, but the ‘Sunny Meadows’ setting is more tranquil, surrounded by pines and countryside. I was very impressed by the ideology of the new senior nurse. He is all for the challenge and for not doping everyone up. They sound very enthusiastic and committed and, as said, they have beds. The manager took us for a tour of the units and I filled out some paperwork. She said that she would do an assessment of Mum within the week.

Later I had a strange call from a nurse at Gold Acre. She said not to worry about anything, but that they had removed Mum’s wedding ring and put it in the safe. She said Mum’s hands had gone all puffy ‘with all the walking around she does’, so they took it off as a precaution and I ‘should collect it’. She also said that Mum had taken a little fall. The doctor had seen her and she was fine, but they had had to sit her down for a while – for her own safety – even though they prefer her to walk about freely… She left me wondering if someone had passed on my concerns about the bucket chair again. I don’t like feeling suspicious about all these things.

***

Mum was warm and smiley today. I talked about family and she seemed to respond with understanding and emotion. A nurse came through to tell me that the manager of Sunny Meadows was in the office doing Mum’s assessment. She came to speak with us and we told Mum she was moving to a nice place in the country. I don’t think she understood, because she doesn’t know where she is now. The manager said they were considering moving her next Wednesday. It feels very sudden, but potentially very good. We don’t even know about funding yet.

***

November 2009. I spoke to the Social Worker this morning to see what he knows about Mum’s move and if there’s any news on the funding issues. He knew nothing about her discharge and was shocked that such a decision could have been made before anyone knows which departments will be paying for Mum’s care. He was equally surprised that Sunny Meadows have accepted Mum without clarification of funding too.

At 11am I got another call from Mum’s nurse at Gold Acre to say that the taxi for Mum has been booked for Wednesday at 10am and could I be there to meet them at Sunny Meadows and help her to settle in. I suppose they will sort the funding details later?

Now a further phone call from Gold Acre to say that Mum’s discharge will have to be delayed until the funding decisions have been made. The right hand doesn’t know what the left hand is doing. Am I surprised? I am disappointed though.

***

On Wednesday, the day Mum was supposed to have moved, I spoke to the Social Worker again and learned that he had ‘stirred things up a bit’ in the department. Other than that he was none the wiser. The NHS and Council process just doesn’t seem to have got its act together somehow.

On the whole Mum is much the same, mostly seeming content, but using less of her capacity and saying very little. She always enjoys hugs and kisses and the occasional massage, but seems half asleep most of the time.

***

It is now the 8th December. I was glad to have been at Little John’s funeral in Heidelberg, to say goodbye and to share some memories with his dear friends.

Today I got a surprise call from the other Nursing Home in Cotgrave – Kirk Way – that had a waiting list of five when I visited in October. They have a spare room. My initial response was to assume that more than five people had died since I visited, but of course that was not the case and I felt rather stupid as they explained that they had gone through the waiting list to find that everyone on it had already secured ‘alternative accommodation’. I too have already found alternative accommodation for my mum, but whether that will still be available when she is finally discharged is anybody’s guess.

***

21st December and Mum is still in Gold Acre.

At 11am I went along to Gold Acre to what I thought was a Carers’ meeting, but turned out to be a Christmas party. The ward manager sat with me making small talk, but also said that the psychiatric nurse, who was present at the original MDM in September, was supposed to have written to me a fortnight ago to explain the final decision and to get Mum sorted. But she hasn’t, and they haven’t, and therefore we can’t.

I went in with Christmas cards, sherry, mince pies and chocolates for Mum. I took a CD of children singing Christmas Carols and she cried with joy. She tried to sing along, but no words came out. Monica came too and we all shared laughter and stories. I am really missing Little John.

***

It’s the 6th January 2010 today. Mum is still in Gold Acre and I’ve heard nothing more about her moving or funding.

Week Thirty-Eight

Mammy and Debbie at Herbert Street…

I went to a friend’s funeral today and have Alf’s to attend next week – I offered to take Monica to Wilford Hill to say goodbye to Alf, her long-standing friend of over 52 years. I’m glad I managed to take them to Newark Market earlier this year. He loved that place.

The Social Worker is back and encouraging me to go ahead and look over a few of these homes. He reiterated how he had found the whole process very difficult.

***

So this week I went along to ‘Sunset Copse’ – it’s in Caythorpe, a sleepy little village next to Lowdham. I must say that I was very impressed right from our first meeting with a member of staff in the car park. The place was welcoming, homely and very enthusiastically and professionally run. I am slightly concerned that Mum would bang in to too many things there, but that is my only concern. I would love her to be in such a homely environment with what looks like a very stable, generous and committed staff. I put Mum’s name down on their waiting list, feeling much more positive again about Mum’s future.

A couple of days later I got a call from the Social Worker to say ‘not putting pressure on you, but…’ apparently he has been given grief about standing up for me in that MDM. I was glad to be able to report my positive experience at ‘Sunset Copse’ and reassured him that I ‘ll go to see the one in Cotgrave next week.

I was disappointed to have a letter from the Gold Acre, saying:

A meeting was set up some weeks ago regarding your mother’s future care. I would like to arrange another meeting for the 6th November 2009 at 10am, with regards to your progress in finding a suitable placement for your mother, as several weeks have now passed…”

It has only been 2 weeks and I do feel they are putting me under too much pressure to find ‘a suitable placement’ for Mum.

Mum is clearly now in the very late stages of whatever dementia she has. She was in one of the lounges at Gold Acre with a few other residents sitting around listening to some soothing pan-pipe music… In came a man announcing a ‘light and sound show’ and it occurred to me that I may never have visited Mum there at that time of a morning, as I’ve never witnessed any entertainment or stimulation. Mum loved the music – a Vera Lyn experience – which you might not expect an ardent rock and roller to enjoy. The nurse was trying to encourage the residents to play percussion instruments and one resident danced with a flag. The result was kind of chaotic, but stimulating and encouraging.

***

Yesterday I had all day out and about. I took Monica to Alf’s funeral at Wilford Hill. The traffic was busy and there were three minutes to go when we stopped to discover that I was heading for the wrong crematorium. Managing to retain a whole string of instructions from a passer by about little bridges, pubs, lefts and rights and roundabouts, we pulled up outside the correct chapel just four minutes late. Monica was pleased to have said goodbye to Alf and I was glad to have been able to help. Then I took Monica home and headed to my next appointment.

It was an ‘Involvement Strategy Group’ for the Nottinghamshire Healthcare NHS Trust. Most of the people around the table (about twenty) were ‘Leads’ representing directorates within Notts Healthcare Trust. A few of us (seven) were ‘carers’ or ‘service users’/’volunteers’. I learned that the Nottinghamshire Healthcare Trust (dealing largely with mental health issues) is distinct from the Nottinghamshire University Hospitals Trust, although both are under the umbrella of the NHS Trust. The discussions and issues raised were very encouraging. I have much to learn about this huge institution and I felt both ‘out of place’ and yet somewhat honoured to have been invited in the first place – like I had gate-crashed a private party. I would like to be involved in influencing and shaping policy decisions – to contribute by offering the perspective of the carer and on behalf of the service user.

***

I should not have gone to see Mum today. I am feeling too emotional myself. This morning I found her slumped over in her chair, looking quite pitiful. I greeted her cheerfully and tried to engage, but she was distressed. She had her eyes shut or half dazed but kept shouting, “No, stop it!” and then she would cry soulfully. I was unable to help her today. They brought her dinner, but she refused to eat more than a couple of mouthfuls. Between sleeping, shouting and crying she was blowing big bubbles through her nose and had a swollen tomato face by the time I left. I think I looked much the same. I am sure we were a sorry sight when the nurse came in with Mum’s medication, saying that the Trazodone should help her. After another hour I went home, having failed again with Mum.

I still haven’t been to see the home in Cotgrave either. If I don’t go tomorrow I will feel under a lot more pressure because we are busy for half-term next week. I also feel stressed because I have done nothing for Conor’s birthday either.

***

Today I got another call from the Social Worker to say that Mum has been awarded Continuing NHS Funding. I need to make sure that they haven’t stipulated a different sort of home for her now.

***

Now I have a letter to say that Mum’s case for NHS Funding has been deferred due to insufficient evidence. This letter was written three days ago and they may have had another meeting since that.

I can’t deal with that until next week now as I’ve got Conor’s party to sort out.

I never quite know how I’ll find Mum, but I think it depends on who I’m looking for. Many days I am so relaxed and happy to be with her that the whole experience is positive and rewarding for us both. Other days I try hard to get no-where and feel frustrated. I think most of it is my problem of attitude rather than hers.

I saw the place in Cotgrave this week. The Deputy explained how they were full (with a waiting list of five since June) and so ‘there was little chance of a place’ for Mum this side of Christmas. I explained that I had been instructed to look around the places recommended, so she passed me over to her ‘Activities Coordinator’ who did an excellent job of showing me around. I was impressed with the space, the set-up and the ratio of active helpers. There were definite quiet places, and it was incredibly calm at this moment in time and space. I put Mum’s name on their list anyway.

***

They were very good at Mum’s routine check-up at the Maxillofacial Unit – not to make us wait too long, then a quick look and ‘fine, see you in six months’. Mum seemed very small and soft and I felt very protective of her.

***

I expected to find the team from last time at today’s review, but found myself in another room with three completely different people. The Ward Manager, who sent me the ‘hurry up’ letter a couple of weeks ago, a senior nurse and a man I recognised from the St Peter’s Wing. The Manager made it clear that the purpose of the meeting was to find out what progress I had made finding somewhere for Mum. I explained where I had been, why, and what conclusions I had drawn. Then I explained my frustration at not knowing quite what to do next. I tried to follow their responses but was hearing such mixed messages. They seem to be saying that the funding will depend on the type of home recommended by the PCT, but nobody knows what that is yet. They emphasised again how theirs is a ‘challenging behaviour unit’ and Mum ‘does not have challenging behaviour’; worse still, ‘as a vulnerable old lady’, they argued that she is possibly at risk by some of their more challenging residents. They said that they can’t just keep Mum until a place becomes available in somewhere of my choice, but that I had to find her somewhere – anywhere – and could move her again later if I so desired. To recap and try to clear my confusion I said it sounds like they want me to find somewhere before I have been told which category of home I am looking for. I began to blubber, which is really annoying when I have a point to make, and asked if they could find out from the PCT what type of home I should be looking for. Then, whilst handing out tissues, they assigned that job to the man who knew Mum in St Peter’s Unit.

I got cross about it all later. One of those days when you feel like everything is left to you. Feeling sorry for myself I managed to recall some wise guy saying “If you want to change the world, you have to start by changing yourself”. (Ghandi?)

The chap at Gold Acre today said that he had spoken to someone in the PCT, but that there was no information yet about funding, although they had apparently already decided at the MDM in September that Mum would need to reside in a home with Registered Mental-Health Nurses. I replied that they had recommended Kirk Way at that first meeting as having a Mental Health Registration. I wrote it in my notes. He argued that it didn’t. I could feel myself becoming frustrated again in a circular conversation and asked him to tell me precisely which homes I should look at. He mentioned two, then heartily recommended another home in Cotgrave, which has a newly developed ‘Mental Health and Challenging Behaviour Unit’ as well as a Registered Dementia unit. He thinks I will like this one, and, more importantly, they have rooms available. I told him I would go next week. I am still getting mixed messages from them – To get her out of Gold Acre they say she doesn’t need a challenging behaviour unit, yet the PCT are saying that IS the type of home I am looking for. Does she need a challenging behaviour unit or not?

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 22nd 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.

Week Thirty-Three

Mammy, the dancing Queen and music lover

A week later, back from Ireland, I learned that the ward dentist had referred Mum to the Maxillofacial Unit at the West Hospital. I asked Gold Acre to inform me of the date, so that I can go and hear for myself what the doctors have to say.

I finally took Monica out for her birthday treat, then Monica came with me to see Mum. We decided to hoist her out of her bucket chair with a view to a stroll in the sunshine. I was horrified at how unstable Mum seemed to have become. There is no way that she can get out of that chair alone. It took time and a large dollop of encouragement to keep her standing without wobbling. We all but dragged her to the garden, but once outdoors she was off like one of those squash balls in slow motion, bouncing into all the walls. Apart from toppling the bird table, she had fun and enjoyed the sunshine and the breeze. I do need to ask why Mum spends so much time in that chair.

***

The following day I phoned Gold Acre and found the ward manager very calming and sympathetic. He asked me if I had any concerns to which I replied that I would welcome an opportunity to discuss Mum’s ‘care-plan’, as I have no idea what medication she is on currently and ‘I do have some issues’. I imagine he was groaning inwardly, but he remained very encouraging. He said that Mum’s consultant was ‘on holiday’, but that on his return I would be invited to the weekly review. I did express some concerns about her mouth, hygiene and her ‘triangular bucket’ chair.

***

This Friday, three weeks after the ward dentist saw Mum, I have been given an appointment date for the Maxillofacial Unit – 20th May. That is satisfyingly sooner than I had anticipated.

Before a trip to London, I finally contacted Mum’s friend Wendy. When I next went to Mum’s I spotted a bag of large chocolate buttons and said, “has Wendy been to see you?” and she said “Yes, yes she did.” It is unusual now for Mum to actually say a complete sentence, even one as short as that, so Wendy must have made an impression.

After getting Mum suitably animated with Gene Vincent and Kenny Rogers, I took her hands and, with a “shall we dance, Madam?” managed to coax her out of the bucket chair. Dancing was a bit strange – more like a clumsy smooch around, but Mum seemed happy to be up. She does bump into everything when left to her own devices, so maybe that is why they prefer to keep her sitting – for health and safety reasons.

Julia has decided that she does not want to see her sister again. She wants to ‘remember the old Av’. She admitted that her angle might seem selfish and I tried to give her a different perspective. But…

***

I think that some of my concerns were heard, because on Friday the ‘bucket-chair’ was gone and an ordinary chair in its place. Of course that meant that Mum was wandering around the corridors, getting lost in unfamiliar territory and bumping into everything.

I must write down some questions for tomorrow’s meeting with the new consultant. Care Plan? Medications? Section? Daily routine/hygiene? Meals? Behaviour? Exercise and Stimulation…?

***

So I got my list of questions out… Medication was a straightforward one. She’s still on the epilepsy control (Tegretol), the anti-depressant (Trazodone) and the anti-psychotic (Haloperidol). The latter he has already reduced from 3mg to 1mg daily and intends to drop that one altogether. If the hallucinations and distress come back, he plans to try ordinary anti-dementia type drugs like the Aricept. He said it all so matter-of-fact. I was sort of anticipating that this would happen with the Haloperidol, but I didn’t expect the hospital to do it after spending all this time finding drugs to stabilise her. But I didn’t say any of that, because I don’t think of the right words to go with my thoughts and feelings at the same time. I don’t want her to deteriorate again now she’s finally content (-ish).

He said that her progress is reviewed daily by the staff nurse and three times a week more officially. He does the rounds weekly, but has been away for a month. He mentioned the growth in her mouth and that he had noticed some cellulite on her leg, for which he’d just started her on antibiotics. He asked if Mum had ever had a firm diagnosis and, as I tried to explain, he too said how it was ‘all just academic’. We discussed Mum’s deterioration since 1997 and whether any of us offspring would like to be tested to know if we have that specific gene to cause early onset Alzheimer’s…? He thinks that Mum has both Alzheimer’s and a type of vascular dementia, because she presents such big mood swings and the psychosis. He said that Mum has been taken off the ‘Section’ so I asked whether I could now take her out?

“You could always have taken her out. You only needed the doctor’s permission!” was his astonishing reply.

I don’t know where I could take her now though. It is a scary prospect and I couldn’t do it alone. She is a bit more mobile again now that she is not perched in the ‘bucket’ for hours.

He also said that Gold Acre is ‘a hospital unit for complex needs and behaviour issues’ and that their job is to stabilise patients ready to send them into more permanent home settings. This I did know, but I had put it to the back of my mind, since the last assessment was that Mum would continue to ‘need at least the same level of care as at St Peter’s Unit’. He said that he would expect Mum to be able to move on in a few months and asked me if I had somewhere in mind? I do not have a clue. How could I know? She isn’t ready for an ordinary nursing home, even one dementia registered. He reassured me that a Social Worker will get involved again when the hospital decide to send her off and that they would all help to place her appropriately.

I tried to ask about daily routines, stimulation and care-plan, but that clearly was not his expertise so he referred me to Mum’s key worker who is…we don’t know? I must find out and run the rest by them. The consultant has given me plenty to think about.

***

Mum is becoming tearful and unstable again – possibly the result of a reduction in medication? Today I met her shuffling the corridor with that look of confusion and rage that she had before.

The nurse said “Look, here’s your daughter, come to see you!”

Mum glowered and said “Who are you?”

She looked angry and started to scream, mimicking Betty (another resident). I took her back to her room away from the noise and closed the door. I asked if I could have a hug and she said that she didn’t have any.

“No hugs for me?” I questioned

“Well I suppose…”

I forced her arms around me and cooed and encouraged. She started to cry and said,

“I want to die…Well, you can’t… I want to kill myself…No, you can’t…”

I just held her, prayed and told her how loved she was. Then I creamed her face, so that she would smell like Mammy again and we both sang and laughed, whilst I fed her lunch. Someone had tied her hair back in double ponytails and she looked very pretty.

When I made to leave, she playfully said, “No, don’t go!” We were both smiling and bouncy when I left.

***

I was nervous about them taking her off the Haloperidol, but this time she seemed fine. She had had her nails painted and was wandering the corridors, singing to herself. She was playful with her gabbling and entertaining the ‘babbies’. The hallucinations are much stronger again, but seem positive. She is often questioning the babbies and telling them off. “I’ll kill you!” was a more extreme reaction, but the babbies are never far away. She was making creepy sounds and faces to a ‘rhyme’ and then building it up to a scary finale to make them jump. She was clearly enjoying herself. She seems to understands the majority of what I say, but unfortunately I no longer understand most of her replies. It doesn’t trouble me, though I would love to know what she is trying to say.

Before leaving I went to check about Wednesday’s Maxillofacial appointment. We discussed how to transport Mum and concluded that a wheelchair and taxi would be easiest all round and I will meet them there.

Week Thirty-Two

Mammy loves the outdoors

On Monday I found the route to Mammy’s new sojourn much easier. She seems more settled, but was wearing hospital clothes as they still need to tag her clothes with ‘Gold Acre’ labels, as well as with name tags. She was in her room listening to Buddy Holly, as apparently she had been disturbed by some noise earlier. Her flesh was pale and peaky, but we spent a pleasant hour together before she began looking restless and lurched forward several times, looking fretful, so I asked if she was wanting to get up. She was, but I was unable to coax or lift her out of the chair, partly because I was afraid to further strain my back. I asked for assistance and two nurses came and hoisted her out of the chair. I realised that it was the chair that was to blame for the struggle, as it was designed for the sitter to be wedged in the valley of a deep triangle. Once out and standing she seemed very disoriented and unstable. She was ‘f…ing and blinding’, which is so out of character, and kept banging into everything despite her cautious footing.

We went for a brief walk around, but she was pulling against me and chose to go back to her room. I tried sitting her on a normal chair from which she pulled herself back up and indicated that she ‘should’ be back in the wedge chair. I helped her back into that and she calmed again. The doctor came to introduce himself and a senior nurse came to give me the paperwork and more forms to fill in. The doctor asked me why Mum was still on a ‘section’. I couldn’t fully answer that and felt that such information should surely have come with Mum in the transfer – certainly the assessment that his own staff had done should have been available to him. He seemed very amiable though and had a slightly playful demeanor. The nurse asked me to supply Mum’s toiletries and things and I promised to bring a better selection of Mum’s music. I was concerned about Mum’s general health and let the nurses know that as I left. They assured me that they would look after her. I believe they will.

***

Our house is still very cold and full of brick dust and mess. The new stove is still in the process of being piped in and we have suffered leaks and floods this week. Josh is taking over the task of digging my vegetable patch over and enjoyed the pleasure of having a robin sit beside him to sing for his supper as he worked at picking out the weeds. It was a beautiful moment for him and it gave me joy to see them both.

I took in the CDs and toiletries, but it was a quick visit as Isabelle’s second dose of Chemotherapy went much quicker than anticipated and I was to taxi them home again. However, Mum was in her own clothes and seemed much more content. She was sunk into the chair in her room again and we played one of the CDs. My new routine is to cream her face with ‘Oil of Olay’, which for me is Mum’s special scent. She enjoys the sensation and the contact. I noticed that her face seems very flaccid and dopey – her mouth seems to hang half open in a ‘gormless’ expression as her eyes flicker and stare at nothing in particular. But she didn’t look as pale and a nurse commented on how well she had settled in. As I left she smiled and admonished me to ‘be good’.

***

On Mothering Sunday she was in her room again, Buddy Holly still playing. I seemed to make her jump as I came into the room. She appeared very jittery and agitated. She was unwashed and greasy too, so I feared she might be experiencing problems again. I switched the music off, which she seemed to appreciate. She kept saying that she wants to go home and wants to go to bed. She was crying and moaning, then apologising for ‘being silly’. She did seem to be tired, but it didn’t seem like a good idea to indulge her in sleep at three in the afternoon. I fed her a ‘Fry’s Turkish Delight’, which relaxed her enough to talk and laugh again. The nurse had only praise for her progress and anticipates that they will take her off the ‘section’ at the next review. That will mean she’s able to go out again. I really enjoyed my time with Mum today.

***

On Thursday she was still in her room, but was looking much better. Another dose of ‘Turkish Delight’, Oil of Olay and gabble about something and nothing. I dropped in on Monica again on my way back home to take her a 70th birthday card and some chocolates. She wants me to take her to Mum’s next time.

It’s great not having to do Mum’s washing – it actually frees me to go more often, as I don’t have to wait till all the laundry is dry.

Meanwhile I’ve been chopping up lots of wood – the boiler stove is finally in place and, after a few leaks, is now burning as much rubbish and wood as we can feed it and is working well. It keeps the dining room particularly cosy, but also heats all the radiators and the hot water tank.

***

Sunday was a beautiful clear blue sky, warm and still. The nurses had brought Mum out of her room to meet me, so I took the opportunity to take her outside into the sheltered ‘garden area’. Mum was very shivery and unsteady on her feet as I almost dragged her out. We sat in the sunshine, Mum wrapped in scarves as we began to sing, laugh and make jokes. She seemed to get ‘You are my sunshine’ into her brain and couldn’t get it out again. It made us both laugh and we tried to find alternative songs to dislodge that one. We had a fantastic time for about an hour, until Mum began to feel the cold again. She looked so pretty out in the fresh air and I took a few photos. It felt like a real milestone had been reached and I’m now looking forward to more trips out with her. Again I left her happy and went out with a joyful spring in my step.

***

I’ve been thinking for a while that Mum’s face is looking different. It is difficult to discern as she is losing weight and has developed some peculiar mannerisms and twitches and will sometimes hold her head in a tilted position for no apparent reason. Anyway, she is beginning to look as if she has a wedge of chewing gum under her top lip. Debbie also noticed that she had a ‘monkey-mouth and nose’. Finally on Easter Sunday, when I took Monica, I lifted Mum’s lip to find a large white, bulbous swelling and filthy brown teeth. I was shocked. Surely if her teeth had been cleaned, anyone would have seen the swelling, which I presumed was an abscess. I called the nurse and asked her to make sure that Mum is seen by a doctor or dentist as soon as possible. She wrote it all down in the book reassuringly.

Mum enjoyed a feast of Belgian chocolates and we both had a lot of laughter with Monica. I prodded Mum’s lip, but there was no sign of any flinching or pain.

***

Debbie took Olivia and James to see their Nana on this visit for her birthday and Olivia made several short videos of them all dancing. It was a much more positive experience for them than the last time. Mum had six birthday cards altogether, from Monica, Julia, Debbie, me, Wendy and Tony. Tony’s card included another one of his poems. It is a touching poem, which he wrote 2 years ago…

SOLILOQUY January 2007 – on hearing that Avril will not be returning to Graemsay.

When I think of you I see flowers

pushing through the ragged grass

and you in your garden.

I keep the picture in my head.

In the tall grass of a garden

where wall meets wall at an angle

and little trees thrive, spore of silver lichen sweat

for times gone by.

I hear the roaring shingle at the shore

and see the moonlight

on the ocean’s rim.

The stars in the sky are singing tonight;

a myriad stars are singing and dancing.

One star alone is silent, drifts

down the night, silent.

I rage but she does not hear me.”

Copyright AR 2007.

“The roaring shingle…!

Week Thirty-One

My Nana with Avril and Julia as youngsters on holiday.

This week has been busy and different – fun even. As a school Governor, I have been eagerly involved in the exciting and a daunting responsibility of headship interviews.


Yesterday I enjoyed Mum’s company too. In herself she seemed content and playful. She was all clean, sitting alone in the silent music room when I found her.
“So, what have you got to tell me?” I chirped, holding her hands.
“Dabberdaberdada, batterbatter…Cacker a mama… and some food!”
“Right! That’s me told!” I laughed.
Mum was smiling, eyes closed.
“The babbers?..they OK?” she asked me. I said they were.
“Not much clucks, no!.. I just make ’em up as I do it.” She began to giggle. “The babbers are going off and badadaba…daft things!” Mum hooted with laughter and began to giggle hysterically.
“What is it, Mum? Come on, share the joke!” I pleaded.
“It wasn’t me; it’s Callus…I can’t remember now.” She flung her head back and pretended to snore, a wide grin across her cheeky face.
“Somebody else a popper da babasee plos…Yes!” she said, gesticulating knowingly.


I asked her whether what comes out of her mouth is what she had expected.
“No!” she admitted, but didn’t seem too concerned. Then she took a big breath and began an operatic piece, “Day, day, wee, lie twee lie tay lie… Bubbles!” She laughed…”Plopalopa tapatapa weeleelee…” And then to the tune of ‘Jingle bells’, “Da da da, da da da, an da way la day…”
“Mama, Mama” she suddenly whimpered in a sweet baby voice. And she answered herself, “I thought you were carrying on?…OK!…Wye ly wye ly and I lay day lay way and go go go to bed. Plop!” She made as if to snore again. “And they say – ‘Goodnight’.”


I began to laugh at Mum’s entertainment and make some equally meaningless, but encouraging comments myself. She was clearly having fun.
“Why, is it a man?…Because I like babbies!… That’s all right then…I want to go to bed and I want to stay on. Well you have to ‘Eeny meeny, tatty tatty, catter catter…Then you say, ‘How are you today!” She giggled again for some time…”Eh? Mister Matter Mat? Are they fighting?..Little bits, yeah.”
“You are playing, aren’t you?” I laughed.
“Yes, we are!”
I put a CD on – The Everly Brothers – and immediately Mum began to ‘da, da’ the tune, but used no words and all wrong phonemes. She was enjoying the music and after collecting her very smelly washing, I took my leave, smiling too.


It is a year ago since Mum left my home to live at Broad Glade. I feel sad remembering her having to go, still doubting whether I did the best thing for her.


I have just dropped Isabelle and Brian off at the hospital for Isabelle’s first Chemotherapy dose. I am looking forward to taking them home again later and knowing that she is fine. I want to see Mum as well, but Isabelle comes first today.


On Tuesday Mum seemed content and lucid – hardly babbling at all. I took her into the music room and we sang, danced and had a laugh. Her nails were ripped and jagged, so I pampered her nails. Then she showed signs of discomfort and agreed to let me take her to the toilet, change her pad and wash her hands and face.


I had been told that there were some student nurses doing studies on the ward and that one student had chosen my mum. I took my leave of Mammy and went to speak to the student, who was a fourth year medical student with many questions. He had already spoken to Mum and was wondering who “Cacker” was, but I have no idea.


Mum was wandering when I came out, but she was angry and distressed again. I tried to calm her, but she shouted, “Just GO, if you’re going then!”
So I stole a hug and left.


On Saturday she was clean and smiley and trying to converse in her light-hearted babbling. I helped with her tea and biscuits as she no longer uses her hands or eyes very effectively. I can put a biscuit to her mouth and she won’t think to tell her hands to hold or catch the biscuit once she has bitten into it. I asked her what she could see. She didn’t know. I asked if she could see her hands, so she held them up and looked at them. Can you see your wedding ring? She couldn’t, so I swiveled it around her finger, marveling on how it has been there for forty-five years. I asked if she could see me – she looked and smiled, “You look lovely”.


I got a call from St Peter’s Unit to say that I should not visit at the weekend as they are decorating the corridors, so I went to see Mum on Friday night instead. I haven’t done an evening visit for some time. Mum was in a gentle mood, clearly tired and wanting to go to bed. Her body seemed to be twitching in spasms, but not bothering her at all. She was hallucinating and talking to the babies; ‘Cacker’ was there it seems, but ‘Cacker’ is apparently not one of the babies. She seemed to enjoy my company and the back rub as always.


Yesterday I got another call from St Peter’s Unit, to say that a place has now come up at Gold Acre. Gold Acre is spacious, pretty, peaceful and strangely unpopulated. A nurse showed me around and I am very impressed. I think Mum will be very comfortable there. There is another unit for severely challenging behaviour that is separate from the rest. Opening hours for visitors is much more flexible (simply avoid arriving at meal times) so I hope Mum might get more visitors there. She will be taken there on Wednesday morning in a black cab. I think it will be better if I go up to see her when she’s arrived and settled a little, because too much fuss stresses her out. I wonder how she is going to experience the move, having not even been outside of the ward since last August? I’m sure the nurses are experienced in handling these situations and they will ease her transition gently. It is all moving once again into the unknown and a new era is beginning again for my mum and for me.


Chapter 18

Today I saw Mum in her new ‘home’. The staff at St Peter’s Unit had escorted her with her belongings to ‘Gold Acre’. I found her in the large dining room dozing on a two-seater settee. Nearby was a familiar face from St Peter’s Unit, strapped into a comfy chair and demanding a lot of attention. I engaged with the other lady a little, finding she had a mischievous but agreeable nature. There were three members of staff sitting drinking tea, probably having a breather after lunch; they said that Mum had ‘settled well and eaten her lunch’. I sat next to Mum and gently woke her, but it was a cross face that looked back at me.
“Who are you? What do you want?”
She seemed irritated and unsettled by the unusual morning and journey. She looked all clean and fresh and had had her beard shaved off for the occasion. I gave her some tea then suggested that we have a walk around as the loud lady was annoying Mum considerably. I could see a door to a pretty garden, but Mum said she couldn’t ‘be bothered’ to go outside today. All the names of Cacker, Caller and Avril came up with the ‘babbies’ again as she spoke to them, but she soon began to cheer up.


I looked at her room, which was not yet ready – there was a blow up mattress and sets of tools and cleaning equipment in the en suite bathroom. The wardrobe was still empty. Mum kept walking towards the window and bumping into the radiator. Then she would turn, walk and bump into the bed, turn, walk and bump into the door. She didn’t seem to be ‘seeing’ anything at all and was walking with a strangely tilted gait. I managed to steal a few hugs, but she just leaned against me, quite still and resigned. Still, she seemed to understand when I explained that I would need to go to fetch my babies and she let me kiss her goodbye. The nurses assured me that Mum would be well looked after.


On my way home I went to see Monica, to explain where Mum now resides and to update her generally. I find it hard to believe that Monica will be 70 this month.
It just remains to phone Mum’s sister Julia and her friend Wendy, who both expressed a wish to see Mum when she was no longer in St Peter’s Unit. I wonder whether they will visit her now?


Today Isabelle phoned to say that her hair is malting so much from the ‘Chemo’, that her husband has given her a close ‘number 1’ crew cut.