I’m very excited. More in progress…
It came as a shock today to find a phone message from the ward manager of Gold Acre saying that Mum would be discharged tomorrow (Thursday) morning at about 10.30am. He added that he will let me know in the morning the exact time she would be arriving at Sunny Meadows.
But the funeral begins at 10.30am, so I cannot be at Sunny Meadows to greet Mum then. I feel very tearful.
I courageously phoned Gold Acre again, to question the short notice and request some lee-way, but he was adamant. The funding is now in place so they have to discharge her tomorrow. ‘She will be well looked after… go whenever you can; that will be fine’.
I want to see Mum today. Now.
As I was arriving, the ward manager was just leaving. I suspect neither of us wanted to see the other. I was not feeling very charitable towards him at that moment. He tried to be reassuring and I kept my responses brief. Had I known she would end up in a nursing home, rather than the specialist home they recommended, then I would have chosen a smaller one nearer to home. He argued that I can move her again any time I wish.
It was important for me to see her for one last time as she has been at Gold Acre. I also wanted to log some of Mum’s favourite CDs so that if they don’t make the journey to Sunny Meadows, I won’t lose them forever, as I did the ones at the St Peter’s Wing. Some things I had already brought home in anticipation of the imminent move that never happened in the Autumn. Music is the one thing that clearly links Mum with her soul and her past; it is crucial to her well-being – not just any music, but specific – Gene Vincent, Elvis Presley, Buddy Holly, Carl Perkins, Billy Fury, The Everly Brothers and others that I wouldn’t know just off the top of my head. Three of her favourite CD covers were empty today and I couldn’t locate them.
When I found Mum she was sitting up in her chair, which was encouraging, but her face looked so sour. In fact she looked as if she had had a stroke; her eyes were half closed but her left side, especially the eye and mouth, were drooping down and she had a very grey look. I tried to be chirpy, but was getting no response at all and, as she couldn’t see me, I let the tears fall.
I felt exhausted. If only I knew how to help. Suddenly she sat bolt-upright in the chair, eyes staring wide ahead.
“You made me jump!” I laughed. She laughed too, relaxed and then shuffled her bottom back into the chair a little. I was so thrilled and it just got better. She carried on sitting up and slouching back, sitting up and shuffling back… and I joked about the ‘six-pack’ she’d be getting from all the sit-ups. I was even delighted that she was hallucinating again and ‘talking’ to Tacker and Cacker about the babbies. I managed to join in the conversation as if I understood. Nearly every time she sat up I would hug her and she smiled or giggled and again she said ‘I love you.’
I can honestly say that I love you too, Mammy, and today you cheered me up so much.
The Social Worker rang Simon whilst I was out, to report that no decision has been made by the Panel as yet – indeed they have not met – so Gold Acre are clearly acting off their own bat again. Still, I’ll go to the funeral in the morning, then drive straight over to Sunny Meadows. I may even arrive before Mum.
Now I am hopping mad. I was getting ready for the funeral and have just answered the phone to the ward manager of Gold Acre, who told me that Mum cannot be discharged today because the funding has not been confirmed. I could feel the grit in my throat as I tried to calmly ask what had made him think that the funding was in place when he made the decision yesterday. He gave a vague answer about some emails saying that he should go ahead, and that Sunny Meadows had accepted her, therefore…
I was feeling so frustrated by them all trying to blame one another.
“You don’t need to shout!” he said.
“I’m not shouting, I am cross, but am trying to speak clearly and trying to understand why you have messed us about again.” I then repeated that I wanted to know why he thought the funding had gone ahead when the Social Worker had clearly told me that the Panel would only meet on Wednesday.
“He told you that”, he asked, “and you withheld that information from me?”
I hadn’t withheld anything from him, of course, and, boiling with frustration, I reminded him that he was the manager and the one with authority and that I had questioned the short notice yesterday.
“You should have told me about the Panel meeting,” he continued.
“I can’t believe you are turning this around now, when you have clearly messed things up.” I stuttered.
“It means you can go and find somewhere else though, since you said you don’t want her to go to Sunny Meadows; you can find her a smaller place.”
“I am going to think about this now, so I will put the phone down,” I said shaking, and we both hung up.
What a fine state to go to a funeral in.
I paid my respects to a few mourners after the service, then came home to see what else I could find out. I tried to phone my Social Worker and his Team Manager, but it seems that both were out in training today. So I went back to join the funeral crowd at the wake. She was a very loved and well known lady. I was glad I went.
So many people I know have died since I moved to Nottingham. Pa died in 2006 just before I came back, but since then there have been a litany of farewells and not all of them were old. Pat, Roger. Elizabeth, Clemency, Peter, Barbara, Pauline, Alf, Alec, Ted, Phil, Little John, and Rachel… I don’t want anyone else that I know to die for a while.
PART 4 Sunny Meadows Nursing Home
Finally the decision to go ahead was made by Social Services. I arranged with the manager of Sunny Meadows for a date to admit Mum and they coordinated with Gold Acre. Thus Mum arrived at Sunny Meadows by taxi at 11am on Tuesday 23rd February.
A few minutes later I arrived. Mum was sitting in a chair near the door; Gold Acre staff had left and the new carers were unpacking her belongings. (It looks like her CDs didn’t come with her). I had brought her “This is your Life” book, a CD player and some more of her music.
I was disappointed to learn that the bedrooms are on the first floor, which means a wheelchair in the lift and no wandering about for Mum.
I stayed for several hours as she was clearly distressed by the journey, the change and the noisier environment. We sat in a relatively calm area, but the main entrance was busy with human traffic, phones and buzzers, a TV, another lady banging and there was Kate. I learned a lot from Kate. She thinks out loud in very clear sentences. I learned from her that Sunny Meadows is quite understaffed and that one of the cleaners now has to help out with the caring; that second sitting is best for lunch as it is in the smaller dining room and is much more civilised, and learned about the contents of her string bag attached to her ‘zimmer frame’, which she takes everywhere. She is like a sports commentator revealing each thought and observation and made it clear that she was unimpressed that they had admitted another resident into what she saw as stretched resources.
When Mum started to cry Kate shook her head saying, “That’s all we need now! No use crying in here, you’d better learn to laugh or something instead.”
I appreciated Kate and her frankness and thanked her later. She also helped as Mum kept sliding out of the wheelchair at lunch. Kate went to find help and came back with the Manageress and another lady, who helped Mum get back into her chair. A man, who was feeding his wife, told the carer in the diner that his wife needed the toilet.
The carer said, “She’ll have to wait. I’m on my own just now.”
On her own? With sixty residents. After lunch, when Mum was in the recliner, I spoke to the nurse in charge, who appreciated the ‘This is Your Life’ booklet and away I went, confused and exhausted.
It’s exactly ten miles each way to Sunny Meadows from home. These last two afternoon visits I found Mum sleeping in her bed. She seemed very comfortable and peaceful. I am told that she joins the other residents through the morning and lunch, then sleeps for a couple of hours and goes back down at about 4pm. They say she is very settled and that they haven’t had to give her any Lorazepam. I’ll have to come during a morning session to see if I can get Mum standing or walking.
I’m concerned about Monica at the moment. She has been suffering for some time, but has recently been told that she has diabetes and cancer. She had a scan yesterday and goes for surgery on Friday.
Today I went early and found Mum sitting in the quiet lounge. She was tearful, but doing her ‘sit-ups’ again. After cheering her up I took the opportunity to invite her to walk. She responded positively so on her next sit-up I took hold of her hands and asked her to come with me. To my delight she assented and ascended. She stood rather wobbly for some time whilst I hugged her properly and when she seemed steady, I asked her to come walking.
She made the right movements with her legs, but it felt like there was Velcro on the soles of her slippers, which didn’t leave the ground. I supported her back with my left arm, guided her hand with the other, whist talking lots of encouragement and a bit of brute force… But she walked. We walked the length of the big lounge and back again. She was happy to sit back down, but I felt she was aware of having done something good.
I was so happy and the staff and some of the residents were cheering her on too. It was the first time they had seen her walking since she had arrived. I really hope they find the time to take a little walk with her on a daily basis. It must help them as well if she gets a little exercise and remains mobile. It may help with the sliding out of the chair habit too. I will try to go only in the mornings so I can take her for walks myself and feel a little more useful.
“The Graveyard Sisterhood” Translated by Roger Colet and read by Dawn
“A Ruse” translated by Roger Colet and read by Dawn
In The Spring. Translated by Roger Colet and read by me.
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.
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.