A nice picture of a smiley me.....
Around twelve years ago, during her menopause, Amanda suffered from an auto-immune infection and I later learned that this could well have triggered her dementia. Subsequently she began to have trouble with finding the names of things. It became frustrating and we consulted our GP, who referred her to EMDASS (Early Memory Diagnosis and Support Service - Older People's Mental Health Services in Hertfordshire, where we lived at the time.)
Amanda was visited at home and asked to complete a number of tests and then we were invited to see a doctor who specialised in ‘older people,’ (Amanda was then about 58). He decided that Amanda was suffering from Young Onset Alzheimer’s Disease, and prescribed donepezil for a year. He told me that the problem I had, was that she might live for twenty years.....
I made a note that day, Friday 15th October, 2012.
Diagnosis – Amanda has Early Onset Alzheimer’s. She returns to work. Later she says if she had not got her faith that she is being taken care of she would have been in tears all day.
I think we are both in shock. The details are unimportant. The fact is this is a ‘life sentence’ and may also affect the girls: their future health may be shadowed by this.
In 2014, although Amanda was still working as a Teaching Assistant in a Preparatory School, and was driving and, to all intents and purposes, living a normal life, it was clear that she was having serious problems with words and I was not convinced that she was suffering from Alzheimer’s. The doctor referred her to a neurologist who arranged for her to have an MRI scan. This showed asymmetric (left) temporal lobe atrophy with prominent inferior loss and relative preservation of the left superior temporal gyrus, in keeping with a diagnosis of Semantic Dementia. Following this, and further exhausting testing, including a whole day at the Royal Free Hospital in Hampstead, the doctor insisted that Amanda should discuss her diagnosis with her Headmistress.
Prior to that meeting in November 2014, Amanda made a few notes which she gave to me at the time:
· I have recently had to have a Head Scan at the Hospital and then some further testing. I have recently been told that my left side is a little bit narrow! And I have been told I have ‘semantic dementia.’
· I feel very well!
· I did complete my First Aid Course Training!
· I have no illness or difficulty.
· I read Bible lessons every day and know that God is with us all the time!
· I do take some medication (Donepezil) but I have no problems and am very happy to be continuing working here as a T.A. and doing Pre-Prep After School Care.
· I did mention that I thought I would be retiring at the end of the year, which I will then do.
Amanda continued working at the school until the summer of 2015, when, reluctantly (she would have no pension for some years, and she loved her work and her colleagues and the children) she took early retirement.
Amanda built up a series of pictorial aides. She cut pictures from magazines and papers and stuck them on sheets of A4 paper, organised into logical groups. So, for example, she had pages of farm animals, then pages of wild animals, then of birds. She had pictures of her friends, with their families and details, to remind her if they called. She had favourite foods so that she could interpret menus in restaurants. And then she had maps of where we had been on holidays, so that if someone came to see her, she could get out the map and show pictures of places.
In addition to this, she began meticulously labelling items around her – her bedside clock, for example, had a little label saying “clock” stuck on the back. She had made explanatory cards, which showed her what the things in the bathroom were for: for example, “Passion body spray – in summer times I have to add, to clean this up, to keep it well,” with a little drawing of a girl with her arms uplifted; an interdental brush has the label, “This is useful for my teeth!” and one sheet is headed, “Things to take abroad!” and has neat little sketches accompanied by notes. One picture is a self-portrait with an arrow indicating “This is my eyebrows (and I clear these things each day!)”
A doctor at The National Hospital for Neurology and Neurosurgery in London monitored Amanda. We went to see him every six months at his Cognitive Disorders Clinic and then in 2017, in the autumn, following repeated advice from that doctor, Amanda had an assessment of her driving. That year she was deemed to be safe on the road and so kept her licence, and the independence this accorded her. She had been driving for forty-five years and she loved her little car but in November 2018 she had to be reassessed and this time the assessors had to take her licence. Amanda could not grasp this and for perhaps the first time in our married life I found her becoming emotionally upset.
She became convinced she could buy another car, and she would get me to take her to car dealers, carrying a bag containing several hundred pounds cash and once she got herself to a Jaguar Salesroom and the concerned staff called the police to bring her home.
On October 14th 2019, we saw another doctor in the London clinic, who reported that Amanda:
remains in good health and positive spirits.
However, she has very little comprehension now and [her] verbal output is limited to stock phrases.
Overall, it is clear that things are progressing slowly. This is naturally stressful; however, Mr Gibbs and the family are obviously supporting [her] very well......
In many ways, our life could have been worse. Amanda needed attention, and was no longer able to cook, but she could dress herself and could take herself to the toilet and, providing I monitored the temperature, have a bath. She watched television, and we still went swimming twice a week and I would take her for a country walk every morning, rain or shine. I managed to employ agency carers who gave me a little respite. It wasn’t as I had hoped our retirements would be, but it could have been much worse.
For various reasons, one of which was the need to have more space for family and carers to stay with us, I arranged to move, and in January 2021, just before my seventieth birthday, with the pandemic still keeping things closed, we moved to Snettisham, a village in Norfolk.
Amanda was very confused, and for what seemed an eternity she wouldn’t settle. She had her bag with her precious things (glasses, iPad, phone and wallet) and she sat at the foot of the stairs with her coat on, sporadically getting up to try the door.
I fairly soon managed to engage some help from agency carers to give me a little time to devote to sorting the house out. But Amanda was not settling and we had to resort to diazepam, which was a mistake, as it caused her to have a horrendous accident in her bathroom. Medical intervention changed diazepam to lorazepam to help calm her, and then another doctor prescribed memantine. Fortunately I was able to employ two independent carers as well as the agency staff, which helped enormously.
By November Amanda had become doubly incontinent and was in need of constant supervision. She could no longer communicate, and she was getting up in the night and sometimes falling. A doctor managed to prescribe her melatonin, which did help, but then the prescription was disallowed as NICE had not licensed it (although I did manage to get it legally from America, Australia and Italy).
Memantine, risperidone and zopiclone with supper then to bed by 6.30. Reappeared at 7.00 ish so gave her a drink with a second zopiclone. Changed pants and put her back to bed...... Half an hour later going downstairs again (unsteady). Gave her water and helped her back to bed (very unsteady). Then ok til 4.37 am, down for water, changed pants. Then up again at 5.13 – made it back upstairs unaided. 7.30 am fell getting out of bed.
Reluctantly, in September 2022, I arranged for Amanda to become a resident of a nearby Care Home. I felt horribly guilty for letting Amanda go, but, as friends and experts advised me, I needed to try and reclaim a little of my own life, while that lasted.
Over a year later, we had our routines and I was still taking her out in the car, but she could no longer walk, nor talk, nor feed herself and she was often very sleepy. I lift her into a wheelchair and we take fresh air, but otherwise she is simply wheeled from bed to breakfast to the lounge to lunch to the lounge to supper to bed. She is cared for and cleaned but it’s not great....
I have a sheet of A4 paper covered in Amanda’s neat handwriting in black ink. It is undated, but I know she wrote it many years ago. She has put her initials in the margin – AJBG and written beside that “ABeeGee!”
If (& when!) it’s time for my funeral don’t really like that word so could it be a celebration of life around here please, there are a few suggestions which might be helpful to whoever has to put it all together (Good luck to you!!)
A nice picture of a smiley me would be good.
Lots of thanks for such lovely times, so much fun experienced, very dear loving family (including furry members) & very kind friends & colleagues throughout life. Wonderful times in Italy & here!
Note that I will have moved on somewhere & look forward to seeing you all there at some time later!
(Dear family....) Try not to feel sad, but happy & grateful for all we’ve shared & learned together & know that God is always guiding & taking care of everyone & showing everyone where to go at the right time & sending love
Everlasting arms of love are beneath, around, above
God it is who bears us on, His, the arms we lean upon
The joy that none can take away, is ours. We walk with love today.
Some nice happy hymns/songs
Lovely Italian music at the start – don’t like coffins coming in in silence, and also at the end.
The lord’s prayer somewhere.
Whatever else suits you.
Try to make it a good, happy, warm, time for support for those who might need it.
In loving memory of my dear wife
Amanda Jane Blacknell Gibbs
March 5th 1954
February 1st 2024