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-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-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.