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.
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,
shelters rose, willow, wren.
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.
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.