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 Twenty-Seven

Chapter 16

Celebrating! Merry Christmas everybody. xx

We enjoyed a fairly quiet half-term week, but this weekend was full of activity and celebration – including Conor’s birthday, parties and fireworks.

On Friday afternoon Mum was still in good form. Her clothes showed evidence of custard and I watched her drink tea and eat a milky way bar. She also drank water and sang to the cup again. She seemed calm and less bothered by imaginary worlds. She played and laughed, let me hug her and enjoyed me massaging her back. It was great. I didn’t want to leave her this time, but I had to get the car back for Simon.

Today I got a call from another doctor, who described a seizure-type manifestation that Mum was having this morning and asked me about the seizures that she had experienced in the past. It doesn’t compare at all. Apparently the top part of her body just trembled violently for as long as you might wave, but it was occurring every 20 seconds this morning, so they called a doctor to watch her. By this afternoon, the ‘shakes’ were happening roughly every 20 minutes. I asked if this was perhaps a side effect of the Haloperidol, but she said not. I took the opportunity to ask about the dosage. They are being cautious with the new drug and started her on 0.5mg. They have now increased it to 1.5mg.

Apparently they all cheered as Mum ate a proper lunch today and she was sitting laughing with a bunch of ladies this afternoon.

Then the doctor asked a sobering question that took me aback: If she gets very sick, do I want them to resuscitate her? I had to ask what this means in reality, because if she gets poorly I want them to treat her as they would any body else. What she meant was, if her heart stops of its own accord, do I want them to give her shock treatment or resuscitate in any other way? She made it clear that they wouldn’t advise resuscitation and that, although they like to consider the wishes of family, legally it is a medical decision that would be made by the doctors anyway. It is a scary thought – that the doctors carry such power – particularly when you hear of cases of abuse of that power and the growing sympathy for ‘euthanasia’. But, on the other hand, if it was her time to go, I sure wouldn’t want to hold her back to suffer any more, when she could be set free and enjoying heaven. To deny her death, when it called, would be much more cruel. I have not actually thought about her dying yet. I have been more concerned with the quality of her living.

Still, at 62, I can’t see her leaving yet. I must speak to Debbie about it and phone Monica to give her an update – she might fancy coming with me tomorrow.

***

Monica did want to come and was delighted to see her back in her happy and ‘naughty’ mood. She has such a cheeky laugh. Monica had received some poems from a good friend of Mum. I read them aloud to her. The poems convey such sweet fondness of memory. They tell a story of Mum and life on Graemsay island. This one is about her home, Clett.

‘Avril’ by A.R. February 2007

If you came by Windbreck over the hill

or by Scarataing under the broken cliffs

to the silent house above the shore

it would be the same: your wall stands firm

and the tall ships of your willows blow

and all is well.

The raggle-taggle fuchsia by the garden door

in hard midwinter waits

and in the rank grass sleeping now,

Veronica, wild iris, rose, montbretia, meadowsweet

in innocence and silence wait

and all is well.

A stone hut by the shore

stone on stone to the eaves,

a flagged roof, a plank door.

Remains of tackle, tar, caulk, creel,

scraps of net like lace.

The season passes.

From the South West a breeze

bringing hope and resurrection.

[Copyright A.R.]

A stone hut by the shore….

He also wrote another poem for her.

First he wrote: “Do you remember the stone wall you laboured at? It was magnificent. You wore out two wheelbarrows. We used to work at it in all weathers and if the rain came on too heavy we would retire to the house and drink gallons of tea. Remember? I enclose a small poem in memory of that wall and its builder and I send it with my love.”

Waller’ by A.R.

Stone waller, my dear, dry-stoned and love laboured.

With stone all day labours, lovingly,

each stone caresses. No line;

eye alone is her level.

Stone waller, my dear, day long

in her garden. Dogged. Stubborn.

Stone from the shore, sea quarried,

wheelbarrowed and muscled,

stone-bedded and blessed. Stone,

stone, stone,

stone

shelters rose, willow, wren.

[Copyright A.R.]

Mammy’s stone walls, sheltering her garden

I read the poems twice out loud and we talked about the images and memories. Mum built the walls from stones off the beach, to protect her shrubs from the incessant wind. I’m not sure how much sense Mum actually made of the poems, or how much she does remember. I love the poems.

Monica enjoyed talking about her memories of her two years living with Mum at ‘Clett’, and talked for all of us in her very entertaining way. Mammy was able to respond with independent comments and contributions though, just like her old self. As we were leaving, Monica asked if we could come again. Although I genuinely cannot recall her words, her response reminded me of the time I first visited Mum and Dad in Orkney – that she would be glad when I left, because I disturbed her routines.

Memories of Monica living with Mammy on Graemsay and mad parties

The junior doctor, to whom I had only spoken on the phone, came in and introduced herself. Fortunately she didn’t ask again about the ‘resuscitation’ issue.

***

This morning I had a funny memory – years ago, my friend, Little John, used to tease me for always saying, “I can’t remember”. Today I remembered that as a young child at the caravan, my mum once made me write 100 lines, saying, “I must never say ‘I forgot’.” After that I tried very hard instead to admit that “I can’t remember” One wonders if there is a faulty memory gene in the family.

I was also musing over the changes in Mum’s life since Dad died. In the space of a few years, Mum did so many new things with her life. She began driving again – something she’d never done since passing her test in Nottingham some 15-20 years before. Then she did a ‘motor-mechanics’ course in Kirkwall. She ran the Post Office on Graemsay and did a computer course. She worked voluntarily for the ‘Red Cross’ in Stromness, bought a guitar, took lessons and began to play guitar at the church services. When applying for the job as ‘Sub-postmaster’, Mum listed her hobbies as “Designing; Knitting; Gardening, Music; Watching boxing, ice-skating and gymnastics; Languages; Science and Computers.”

It seems so sad that Mum got a chance of an independent life at 49 but within 10 years was completely incapacitated with this dementia. I wonder what made Mum’s brain go so quickly? Did the brain rebel against having choice and freedom? Did she miss the routine, challenge and suspense of living with Dad? Was it a lack of stimulation? Is it a genetic predisposition? Do I carry those same genes? Do infections, strokes or knocks on the head cause its onset? Or is dementia simply no respecter of persons and comes to devour whomever it wills? Does anybody know? I have looked for explanations, but few are offered.

***

On Sunday Mum stood motionless in the corridor with tears wet on her cheeks and droplets falling from her nose. She seemed so totally dependent and vulnerable… She had no idea why she was crying and said that she didn’t want to live any more. She probably feels totally alone in her world. But she asked after the boys again and soon we were singing and dancing to Roy Orbison. I left her smiling and dancing, but again I feel like I have abandoned her.

One of Mum’s key workers phoned yesterday to ask permission to give Mum the flu jab. I took the opportunity to ask questions in general. She answered that the consultant had wanted to reduce Mum’s medication now that she is doing so well, but that the staff had argued (and won) to keep her medication as it is, because she is doing so well. They are all very pleased with her progress.

In terms of her future placement, reading between the lines, it looks like it will be after Christmas before they attempt to place her. They want to see her properly settled and stable first. I think it will be better for Mum to be in a more homely environment where she can perhaps make friends and have her personal belongings around her again. Maybe she still likes going out walking. I do hope that there will be a suitable home for her within Nottinghamshire. I will contact the Social Worker soon to see what recommendations and time-scale he is considering.

I think I have been very well guided by the Social Services and support teams throughout these two years caring for Mum. I could not have managed alone and they have truly provided where I could not. It hasn’t always been the kind of care that I would have desired, but it has been an invaluable support and I take this opportunity to say a big ‘thank you’ to everyone that has been involved in helping to care for Avril. We are so blessed to have the NHS in this country. Of course they cannot work miracles and are not perfect, but they do provide a wonderful service to so many needy people, who otherwise would be suffering alone.

***

I’m just back from seeing Mum again tonight. I felt that she needed a hug and am so glad I went. I thank God for these precious moments. If she were still in Orkney and in good health I would probably still not have seen her since my wedding. I may never have had the chance to know her. But it’s a tragic price to pay for closeness.

She seemed down-in-the-dumps when I arrived. I began to chat and recognised the song, ‘Are You Lonesome Tonight’ playing somewhere near. We located it in the big empty lounge and began to dance. It was so good to sing, smooch and jive our way through 18 fabulous Elvis tracks around the big room. At one point I looked up to see two nurses smiling at us through the window frame. I felt like a goldfish in a bowl, but very proud. I was even offered a cup of tea today. Again Mum’s key worker reiterated (in a whisper) that, although she was handing me the Care Homes’ Directory, they were not in a hurry to send her away.

I wonder whether I might be allowed to bring Mum out at all? I think she would like to be involved in some carols and Christmas events. I could always take some Christmas spirit to them instead – maybe Conor could bring his flute and play some carols. They would all enjoy that I’m sure.