Week Twenty-Nine

Little Avril and littler Ju…

Yesterday Mum was sleeping in the chair, so I sorted her laundry and went back to wake her up, but I couldn’t. She was smiling and twitching and occasionally saying “yes…”, but her eyes remained closed. She managed to drink coffee, eat custard creams and enjoy a massage, all with her eyes shut. There was going to be no other meaningful interaction, other than stroking her hand and kisses, and I felt that she might prefer to be undisturbed, so after an hour I went to speak to the nurse. I had long since meant to ask about her medication – since the time I pretended to drink the ‘orange medicine’ and they looked a bit worried when I acted dopey afterwards. I wondered why she was so dozy now. The orange medicine was the Trazodone (100mg) three times a day. No wonder she is sleepy. The Haloperidol is just once a day and she also takes Carbomazapine twice a day. Apparently these are all to control her mood – mind, agitation etc. There is still no date for the Continuing-Healthcare Assessment, which needs to be done before we know what can happen next.

***

Chapter 17

Yesterday I hit a major low. I have been finding communication with Simon a cause of immense frustration since the end of November (when I told him I was pregnant). I have been trying to change this, but fear I have just pushed him further away. I am finding it difficult to sleep with ear-ache and blocked, streaming nose and racing mind. I think about these last two years: I have lost three pregnancies, two friends, a job, struggled with my Mum and feel I’m losing control of her care – having lost her too, in a substantial way – struggling with the uncertainty of her future and mine and adjusting to this new life in Nottingham. Last, but by no means least, my Isabelle’s recent challenge has also rocked my boat. She has had breast cancer, has had a mastectomy and is now on the road to recovery. Again I feel so grateful to live in the UK with a great NHS provision available.

Taking an inventory of all this loss was illuminating. I think I need to be a little kinder on myself and on Simon. We both need to learn to have a little more fun together and enjoy what we have whilst we still have it.

Anyway, Mum was in much better form on Sunday, and was contentedly gabbling away, making up what sounds like fun little rhymes with sounds.

I have discovered that Haloperidol is an old-style anti psychotic. It is commonly used in hospitals, to control agitation and hallucinations – symptoms of schizophrenia. It blocks the production of dopamine and has a sedative quality. But its value is questioned by those researching Alzheimer’s Disease. Apparently ‘care homes’ usually take their clients off Haloperidol as soon as possible. It is thought to produce a severe stoop and a general comatosed, dependent state. The Carbomazapine is Tegretol to control the epilepsy.

Mum’s mood has definitely improved since she began to take the Haloperidol and she appears to be much less tormented by hallucinations and psychotic behaviour. But yes, she also appears stooped and pretty well comatosed much of the time.

I felt nearly human enough to venture back to see Mum today. She was sleeping when I arrived, so I sorted the laundry before waking her. She was quite disoriented and kept dropping the biscuit that she’d been given, whilst I held the cup of tea. She was also very jerky – huge sudden involuntary ‘starts’ that she seemed completely unaware of. It was alarming. The cup of tea went down very well though and then she started singing. It was hilarious. There is no way I can convey the experience as I beheld it. She was talking to someone invisible to me and then began to ramble – “Wee lee dee baba kaka da, wee dee wee dee dada moko daba, POP!” Then she would laugh and say “What was that?… I’m being silly… You dabada!… Shall I go again? All right then – Wee la ba da ba…”

I said, “I think you’ve gone daft!”

And she whooped and clapped with delight, “Yeah!”

To the annoyance of a frail old lady next to me she continued for the whole hour, but was clearly having such a wonderful time herself. Eventually she stood up to entertain more fully and began to sing even louder, but this time the sounds came to the vague tunes of “Old MacDonald” and “Jingle bells”. It is difficult for me to do justice to the poetry, but she clearly knew what she was singing. Once she stumbled over the flow and started shouting, “Bugger, Bugger…” until I said, “Mother!?” and she laughed, saying that she had forgotten.

“Am I stupid?” she asked.

“No, but daft as a brush and twice as hairy!” I replied, to which again she rejoiced with cheers and laughter. She looked and sounded happily drunk.

It must have been quite a surreal sight, me alternating between massaging Mum’s back and plucking the beard out of her chin; Mum laughing ecstatically and chanting her rhymes; and another lady leaning over me, kissing my head and telling the wall that I was her grandson.

***

I’m having one of those mornings of racing morbid thoughts:- If it’s all down to genes, I’ll either get a heart-attack, cancer or dementia. But as Josh once said, “We have to die of something. These health freaks will feel a bit daft in hospital when they are old and dying of nothing!”

I am trying to justify my existence again, busy with various projects and people, but because I am not earning an income, I feel wrong, restless and my confidence and self-esteem are very low. An important project for me at the moment is to sort Mum out, but I am finding this waiting process very frustrating.

***

I feel a bit more cheerful now, after a call from my lovely Isabelle. Her dressing is removed and her wound is healing well. She also has permission to drive again, which will be a great relief. Meanwhile the sun is beaming out through the January rain and a little snow-drop has appeared in the garden. I’ve been doing some digging recently and I am so much looking forward to the delight of Spring splendour and itching to get some fruit and vegetables planted.

***

I got a call from the Social Worker on Wednesday morning to invite me to the Multi-Disciplinary Meeting (MDM), which was to take place that morning at 11am. I wished they had given me more notice as I had already arranged to spend our anniversary with my husband.

I told the Social Worker that I was nervous about what would happen to Mum if the home she goes to should take her off the Haloperidol and her hallucinations and torment should return. He said that he’d seen her on Tuesday and she was looking very dishevelled and distressed. She had looked greasy and unkempt on Monday too, but I didn’t ask anybody why, as she had been in such good humour.

The Social Worker phoned me back later with feedback from the meeting. It was much more inconclusive than I had hoped. Apparently two nurses had done the ‘Continuing Care Assessment’ and had agreed that Mum was not at all ready to be discharged. They felt that the only place suitable to meet Mum’s needs would be the ‘Gold Acre’, which I remember being mentioned to me last Summer. What I hadn’t realised was that Mum’s dementia doctor had put in a recommendation for Mum to go to the ‘Gold Acre’ weeks ago, but that the staff at Gold Acre had refused her on the grounds that they didn’t agree that she needed their level of care. Apparently, ‘Gold Acre’ is a brand new NHS unit, offering ‘excellent care’, but their budget is restricted and so they are not able to employ enough qualified staff to run to capacity. It also seems that they do their own independent assessments of appellants and, strangely, do not consult with any other professionals or interested parties. The nurses doing the assessment on Wednesday, on the other hand, are of the opinion that Mum will continue to need at least the same level of care that she has had in hospital and that any other care home would not be able to cope with her needs and therefore she could end up being readmitted to hospital. That is my concern too.

I was surprised to learn that Mum’s dementia doctor was not at the MDM either, so we will now have to wait whilst she reads the report and makes her response. The nursing team also recommended that Mum’s medication be reconsidered and that Mum’s doctor should reapply to Gold Acre for a place.

The Social Worker said that Mum was even more distressed and “vocal” (shouting and angry) on Wednesday and that she seemed to be in a very tormented state again. He said that she was still unwashed, because apparently she is being very uncooperative with the staff in the mornings.

I have arranged to see Mum’s dementia doctor at her earliest convenience to discuss these issues properly, but that meeting may not be for another four weeks.

Anyway, I’m going to see Mum again myself and see if I can make any more sense of the situation.

***

Well, she was fine with me if a little dopey again. She was smiling, singing her own version of ‘Daisy, Daisy’ and copying some of the voices and sounds around her. She was well laid back on the sofa and still very twitchy. Occasionally she would lift herself up to a sitting position and then lower herself back down again – like a version of ‘sit-ups’.

She greatly enjoyed some chocolate and we managed a sort of a conversation – I asked many questions and she made various responses. She thinks that Wendy has been to visit her, but not Julia or Monica. She can’t be bothered to do the gardening any more and doesn’t miss Orkney. She cannot remember much about her mum or dad, but thinks that Julia was bossy. Being a mum was sometimes really lovely, but sometimes ‘Brrrrr!’ She’d like to go and look at the Spring flowers when they’re out in bloom, but she is a ‘big baby’, even though she thinks she is not big.

I asked a member of staff about the greasy hair, wondering whether her fear of water had returned. Apparently this week, the nurse said, Mum has been distressed, difficult to handle and shouting in the mornings, but she is going to ask the night staff if they’ll bathe her this evening. She was unsure, but believes that the doctor may have already made some changes to her medication.

Mammy loving the abundant garden at Porchester Road

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.