Lost Down Memory Lane: Early-Onset Alzheimer’s: A Carer’s personal story.
By Dawn Fanshawe
Prologue (pg 5-7)
Part 1 (pg 8 – 55) Day to day; coming to terms with Caring.
Chapters 1 – 10
Part 2 (pg 56 – 74) Making a decision – Mum in a ‘home’.
Chapters 11 – 13
Part 3 (pg 75 – 124) Sectioned! Hallucinations, drugs and laundry
Chapters 14 – 21
Part 4 (pg 125 – 137) Sunny Meadows Nursing Home
Chapters 22 – 24
Epilogue (pg 144 – 148)
Chapters 25 -26
Notes/Bibliography (pg 149)
Appendix 1: (pg 150)
Early, middle and late stages of Alzheimer’s
More information about Dementia
Choosing a care-home
Appendix 2: Where to go to for help (pg 154)
Things to find out about.
Lasting Power of Attorney
Appendix 3: Mum’s funeral tributes (pg 158)
Firstly I thank my mum and my dad, for giving me life.
I thank God for protecting me and giving me new life in Him.
I thank all my family and friends, whose love and encouragement have given my life joy and purpose – particularly Simon, Joshua, Conor, Monica, Debbie, Catherine and family and Julia. And I thank my Church family for their love, support and prayers.
I also acknowledge my gratitude to the NHS and Council Services (in Orkney and Nottinghamshire); I thank the agencies and Voluntary Organisations and Support Groups that have supported my mother and supported me, as her carer, over these years of her increasing need. Particular acknowledgments go to the residents of the island of Graemsay, who loved and supported Avril in her own home and the place she adored.
I also want to acknowledge the commitment, sacrifice and practical love shown by all you millions of carers, who make such a profound and positive difference in our society – especially to your family.
You carers are the heroes. I dedicate this book to you.
Carers Trust 2012 – key facts:
- There are almost seven million carers in the UK – that is one in ten people. This is rising.
- Three in five people will be carers at some point in their lives in the UK.
- Over the next 30 years, the number of carers will increase by 3.4 million (around 60%).
- The number of people over 85 in the UK, the age group most likely to need care, is expected to increase by over 50% to 1.9 million over the next decade.
- Alzheimer’s disease is the most common form of dementia affecting around 496,000 people in the UK.
Over these past few years I have met some fantastic carers – ordinary people who have answered ‘yes’ to a call of duty and compassion for a loved one. Many have sacrificed careers, livelihoods and their life as they knew it, to care for parent, child or spouse.
This book is an in depth picture of the journey through dementia. This is the main focus.
I wanted to record what it was like to be the main carer for a person with Early-Onset Dementia – a carer’s memoirs, about ordinary, unique people and their very special relationships. It is a snapshot of the journey, not just of the sufferer and carer, but of the dynamics and issues faced by the whole family and friends mourning the gradual loss of the loved one.
My mother – Avril – will be the main focus in this story, but you will become briefly acquainted with some other fabulous people. The fact that they do not feature in detail in the book does not mean that they do not feature in a big way in my life.
It is a story of tragedy, guilt, loss, hope, forgiveness, love and choices. It focuses not only on what the carer sacrifices, but about what else they gain as they embrace such a journey.
My mother and I were never very close. She disowned me when I was 17 and kicked me out of her home. Now I have taken her into my home and become a mother to her.
It is important to say that this is not a story of blame or gossip, but one of forgiveness, healing and an acknowledgment of the frailty and beauty of what is to be human. There are no real villains in this story.
Whether it is Mum’s story or mine doesn’t really matter. It is our story; our journey, but you obviously discover it through my eyes. It is precious and written with love. It may make you cry, but I hope it will make you laugh too and give you hope.
Not all of you will be caring for someone with dementia, as I am, butI want to encourage you, if you are a carer, to find all the support that you can get, to make your life, as a carer, as comfortable as is possible.
Appendix 1 contains an array of facts about dementia – like who gets it and what it is.
In Appendix 2, I have given information and contact details to help you to navigate some of the invaluable support services that have made this part of my journey much more bearable.
Appendix 3 contains some of the personal tributes written for her funeral.
The story is true, but most proper names have been fictionalised for their privacy.
It is not how we die, but how we live that matters.
We all forget things from time to time. We forget a birthday, lose the keys, walk into a room and forget what we came in for. It is normal. We ‘rack our brains’ for that word ‘on-the-tip-of-our-tongue’ – we know it’s in there somewhere, but sometimes we have to ‘dig deep’.
So we write notes, keep diaries, calendars, tallies, address books; we write memos, take photographs, buy souvenirs – a whole industry of ‘aide memoirs’ available to make sure we remember those things that are important to us. But that is not because we have dementia, or because we are stupid; it is because our lives and brains are so busy and so preoccupied with processing such immense amounts of information. Dementia is very different.
So I am trying to determine now, in retrospect, when Mum’s dementia first became apparent.
Mum was by nature a bit scatty and nearly always late for something. She was “four foot eleven and three quarters” and always a slightly bonny lady, with short legs, a pretty face and long brown wavy hair. She was outwardly friendly, quite capable practically, always busying, stubborn, long-suffering and self-contained. My father was comparably very tall, also handsome, fair-haired and dangerously unpredictable. Outwardly a quiet man, a ‘dark-horse’, he was a depressive, who avoided the company of others. He was very talented as a mechanic and a maker of things, but was uneducated and had no confidence in his abilities.
Mum and Dad moved from Nottingham in 1987 to a little croft on Graemsay, a small island in Orkney.
Having started a family very early in life, by the age of 36, their two children, Debbie and I, had both left home.
There were about 23 people living on Graemsay when my parents moved there. They had a two roomed croft, land (including some of the beach), a huge barn, byers, ‘bothies’ and a well. There was no running water or electricity at the croft, and no shop, church or amenities (except the Post Office) on the island. There was a boat running three times a week over to Hoy and to mainland Orkney. In the middle of the island near the school (which was open for only one child at that time and has since closed) there was a telephone kiosk. For provisions, one had to phone an order from the Mainland shops and wait for the boat to bring them over.
Mum grew vegetables and they lived a frugal ‘good-life’ in this remote corner of the world.
In April 1995, aged 49, Dad died, just 5 days before Mum’s 49th birthday. They had been married for 32 years.
Dad’s sister Monica went to keep Mum company in 1996 and lived there for two years. She found Mum ‘very mean spirited and childish’, but in retrospect she thinks that it was the first signs of the disease affecting Mum’s behaviour.
When it began I am not sure.
“Not firing on all cylinders”; “The wiring has come loose”; “Not the full ticket”; “muddled” – these were some of the expressions used to describe a noticeable change in Mum by early 1999. She began to lose everything, even herself on several occasions. She was 52 years old.
Her sister, Julia, first noticed that something was wrong with Mum as early as 1996, when Mum stayed with her in Nottingham. In total Mum missed five connections on that journey from Orkney to Nottingham. Several times that week Mum went visiting friends, but forgot to come back for dinner or say she was going out. Julia did not suspect Alzheimer’s, but she knew that Avril was not her usual self. That was already 11 years ago.
In February 1999, Mum came down to London to help me look after my children. I was a single mum and a full time primary school teacher. Mum stayed with me for a couple of weeks. One very rainy day in school I was distracted by a bedraggled sight out of my classroom window – Mum was standing in the playground with Conor in the pushchair – both of them soaked. Mum was crying because she had not been able to get in my front door. At the end of her stay with me she was to catch the late coach up to Nottingham. A friend dropped her off in Victoria, but three hours later, in the early hours of the morning, my doorbell rang and I found a very frightened, tear-stained Mammy. She had the wrong day. Instead of phoning me, she had started to walk the streets of Victoria, her luggage in hand, with no idea where she was going. After being stopped by a few strange men, she began to panic, but fortunately had had the wherewithal to hail a cab.
Back in Nottingham she was staying with Julia again. It was quite obvious to her by now that there was definitely something wrong with her Av. Julia returned from work on two occasions to find her front door wide open. One evening Mum did not return from her day out, but eventually, about 10pm, a kind man unknown to them phoned Julia to say that a very lost Avril had knocked on his door. A few days later Mum did it again, this time knocking on a different stranger’s door. She clearly had no sense of direction and was struggling with coordination.
She would get very frustrated with her mistakes and would chide herself constantly for being ‘a stupid woman’.
I didn’t see enough to be concerned from that distance. Mum did not sound troubled in general and usually spoke on the phone with humour and sense. In Orkney she was safe. I always thought that dementia happened to ‘old people’. My definition of ‘old’ changes year by year as I grow older, but I never suspected that dementia could begin in someone in their 50s.
I did not see her again until I went to Graemsay in the Summer of 2001. By then Mum’s ability to balance the books was suffering. Mum had had the job as Post Mistress on Graemsay for several years. One morning whilst I was there, the total morning’s business had been the sale of one stamp. Instead of dealing with that logically, she tipped the whole bag full of stamps onto the floor and began to count them all. She repeatedly lost count and spent several hours becoming more and more frustrated with the task and with herself. But she would not take any advice.
Over the next few months a friend on the island began to take over the book-keeping, as Mum would have the day’s accounts thousands of pounds wrong. The people of Graemsay were very patient and good to Mum. I am very grateful that they enabled her to stay in her beloved home for so long. Eventually she was asked to resign from the Post Office.
I don’t know when Mum was actually diagnosed with Alzheimer’s, but she was already taking Aricept, prescribed by a consultant, in 2002 (aged 55).
I visited again in 2003 – Mum could still just about play the guitar and we enjoyed a memorable sing-along. I also witnessed the demise of her treacherous driving. She refused to wear her glasses, despite seeing nothing through the windscreen. I got into the car with her and as she reversed up the path, foot down hard, wheels screeching, suddenly the front of the car strained and ripped off, pulling half of the lodged dry-stone wall from its ancient site. I was not sorry to see the end of the driving.
After that Mum began to exhibit more signs of confusion and disorientation with time and space. I began to get phone calls from concerned residents on Graemsay, informing me of peculiar incidents. She would wander the island and turn up at other houses in her nightwear, sometimes ‘just visiting’, in the middle of the night. She had lost all sense of time and would forget to eat or drink, or forget that she had just eaten. There were reports of stores of food gone bad. Were it not for the cats, the place would have been infested with vermin.
As Mum’s condition became more desperate, I finally began to wonder what I should do. Her writing was deteriorating, cards becoming a thing of the past. She no longer called us, we phoned her.
I arranged Community Care Services for her on the island, providing her an hour’s daily home help. There could only be limited resources on an island of 23 inhabitants. I knew they were a little ‘put upon’ and worried about her, but what could I do? She always said how lucky she was to be somewhere so safe and quiet and beautiful…I could hardly stick her in my flat in London could I?
What was the worst that could happen? She could leave the gas on; put something on the storage heater at night; go out in her nightie, fall in a ditch and die of hypothermia…
Lots of potential dangers, as there are for all of us. It was easy to minimise these concerns a thousand miles away. Mammy was happy there.
I went up again in 2005 – she was unkempt and smelly and quite dependent on others to cook, clean and order her life. But I still felt unable to help. It was her life and I had nothing better to offer her.
In August 2006, two months after our marriage, Simon, me and my family moved into this large Victorian in Nottingham. We invited Mum to stay for Christmas. She was fully escorted, by Roger and myself, door to door. Whilst she was here, Orkney Social services phoned me to say that Mum would now have to go into a home.
Mammy could not even pour herself a glass of water.
I had no excuse and no choice but to keep her with us.
She had to stay here until we could find somewhere local and safe.
She would not be able to return to the home she loved.
Like the rest of humanity, I have no idea what the future holds, so we have to take one day at a time and do our best…