Author of Keeper Andrea Gillies on Being a Carer of Someone with Alzheimer’s Disease
When I was a carer of someone with Alzheimer’s disease, my mother-in-law Nancy, I thought the fact that I’m a natural consumer of printed word, a gobbler of books and print information, would help me with my new role. I went out looking for guidance. Perhaps it was bad luck, but the books I found in my local bookshop were of the kind that reassure a carer that all will be well with the right approach: that, in effect, the happiness or otherwise of the person with dementia comes down to the right kind of handling.
I’ve learned that this is nonsense. Dementias are unlike any other kind of disease in being diseases of Selfhood. The physical progress of Alzheimer’s through the brain, robbing a person first of memory and then of the autobiographical basis of identity, is to blame for the unhappiness that Alzheimer’s brings. It’s often thought that memory is a vault, an archive that we can visit, but the truth is that it’s a process, an orchestral process fuelled by millions of co-operative neurons working together. ‘Self,’ the experience of self, self-knowledge, is likewise a process and not something fixed. It is constantly being made and remade—and so it can be unmade. Consciousness isn’t just about doing and knowing, but knowing that we’ve done and have known.
Keeper is a unique kind of dementia memoir, in interweaving the story of Nancy’s decline, (tracking that steady and shocking decline with anecdotes, with vivid records of conversations between the two of us as Nancy becomes more ill), with a wide-ranging exploration of what Alzheimer’s is, and what it means for us as humans.
Dementia is a ticking time-bomb in our society. A tsunami of dementia is coming our way. There are about 35 million people with one of the 100 or so kinds of dementia, across the world. By 2030 there will be around 65 million. By 2050, the numbers are forecasted to be in the region of 115 million. Where will it end? More importantly, how will it end? In the USA in 2008, $5.6 billion was spent on cancer research, and only $0.4 billion on dementia science.
Pronouncements about medical advances in identifying and treating dementia—even preventing its onset—are almost daily events in the media, but the truth is that nobody really knows for sure what it is, or where it comes from, or how we can fight it. In the meantime, what’s needed is greater understanding of the devastation that dementia can wreak on sufferers and the families of sufferers.
I hope you find Keeper a stimulating and thought-provoking read, and one that may help anyone who may be caring for a loved one with dementia.
Keeper would make a provocative book for your book group or any group of caregivers. Get the reader’s guide for Keeper by Andrea Gillies.
We’re giving away copies of Keeper!
Has your life or the life of someone you know been changed, impacted, enriched by someone who is living with dementia? Leave a comment below, and you’ll be entered for the chance to receive a copy. (Winners chosen at random and notified by email. Limited quantities; while supplies last. No purchase necessary.)
My aunt currently has dementia as did my grandma. My second cousin is actually the one responsible for his grandma (my aunt) and at the age of 24 he has shouldered a great responsibility very maturely.
I am starting to see evidence of decline in my mother, and I don’t feel prepared for it at all.
My mother-in-law passed away a month ago after long fight with dementia. It was so sad and frightened to see how intelligent and smart person you knew becomes more and more like a child and losses one by one all her abilities including walking, speaking, eating and so on. She is at peace now (we hope) but we are not, we are still questioning if everything was done to help? We are still afraid how to prevent this if ever possible?
My sister’s husband is suffering from dementia and her ability to remain loyal and care for him is inspiring to me. I am not made of the same stuff.
Despite having their own financial and health problems, my in-laws are dutifully caring for my father-in-law’s dad, who is suffering from Alzheimer’s. It is both a daily struggle and a blessing for them. I would love to win this book and give it to them.
My grandpa is gone now, but he had Alzheimers and it was a roller coaster ride for our whole family. Grandpa was always the strong one in our family, always there during our trying times and our happy times. After he was diagnosed, my Mother, Father, Brother and I all took turns staying all night at his house to keep an eye on him and make sure that he was safe until, finally, we had to put him in a nursing home. I was there with him when he passed away.
I would love to have this book, I’ll go out and get it! I was a caregiver for my Dad who passed away lst November.
I cried as I read the excerpt from Keeper – I am the caregiver for my mom right now. Alzheimer’s is such a devastating disease – saying that it robs one of their “self” is so true. I have not seen it put better. It is just so hard to see someone who always was vibrant and had something to say to someone with a vacant stare and the vocabulary that only contains the word ‘no’. My heart hurts for all the family members who have to deal with this horrible disease.
No one in my family yet, but scared it will happen. Would like to be prepared.
Thank goodness my own mother, who passed away 2 years ago, never became hurtful with her dementia….unlike our mother-in-law, who is rapidly deteriorating, & becoming accusatory & mean. It’s so hard to remain calm, & to top it off, I fear that I am developing a dementia myself!
It was hard enough to watch my mother fade away with dementia, now we are caring for another family member who is rapidly deteriorating, & I fear for my own mind’s health!
My grandma battled Alzheimer’s. It really opened me up to understanding how fragile our lives are.
My husband’s grandmother has Alzheimers. She lives in a special facilty home for Alzheimers care and there are others who live there that break my heart. Grandma is in the last stages of her disease and doesn’t really know what’s going on anymore but those who are in early stages are so frightened and confused. It’s such an awful disease!
Would love to read this book. I was a Nursing Home Administrator and a Registered Nurse for 35 years — have dealt with many Alzheimers residents. Would like to share this with our Alzheimers Support Group. Thak you.
I have been friends with a 78 year old woman that is a caretaker for her 73 year old sister that has alzheimers and Ive been watching, learning and listening to all of the bitter sweet moments..I would love to read and share this book with her.
Thank you!
I do not know anyone with dementia, but this book reminds me a generation that is “in the middle place.” People caring for parents and children of their own. Sounds as if that could be more and more common in the future.
MY great grandmother had dementia. We think my grandmother is on her way to being diagnosed. I have a horrible memory now and I fear I wil have it as I get older.
my mother passed away this june after having had alzheimer’s for the past four years. she went from being a vibrant, involved, take charge woman to a shell of herself. the hardest part was watching her recognition of me, and especially my son, decline. at the end, she didn’t even know us. my only hope is that more strides are made in finding the cause, if not a cure for, alzheimers. those of us left behind are left with many questions and a great sense of loss.
My grandfather had dementia in the last few years of his life. It was very difficult for our family to see him become a shadow of who he was.
My Dad was diagnosed with Korsakoff’s and vascular dementia and it was incredibly frustrating that others, including Assisted Living Facility administrators lumped all dementias as Alzheimers..they are not alike. I learned as much as possible, and was able to give my Dad the best and most appropriate opportunities and therapies for his type of dementia before losing him on Easter Sunday this year. Dementia patients deserve respect and compassion-would we treat a cancer patient differently?
Wow…my mom too…lively beautiful funny so full of life…seemed to suffer from this during her last years…I will always feel as though her essence was just taken away from me…I remember feeding her a strawberry milkshake…one of her favorite treats…that we formerly would make and drink together and giggle over…my heart broke seeing her like that…I will never get over it.
My mother began the descent into dementia about 5 years ago. It has been extremely detrimental to my family as we attempt to deal with its affects daily.
I also have two aunts that are in the grip of dementia (mothers sisters), so the impact on my immediate family is great.
Dementia is a SCARY disease. I have done a lot of research and reading on the topic in an effort to be better educated and able to assist mother. This does not remove the FEAR!
My mother-in-law just passed away this past January after having suffered from Alzheimer’s Disease for almost nine years. It is not only a devastating disease for the person who has it, but so hard on the family (caregivers) as well. After seeing what I have seen all these years, nothing to me is worse than having your body in relatively good condition but your mind gone…….it is tragic beyond words.
I MUST read this book and feel everyone should read it as anyone at any time could be stricken or touched by this disease!
My mother has been in the grips of dementia for the past five years. She also has two sisters that have the disease. Needless to say, this has had a tremendous impact on my immediate family. It is a very frightening disease!
As so many other’s I have a mother with Alzheimer’s. I am on the west coast and she is on the east, thank goodness I have three siblings and an incredible daughter there to be with her. I talk to her every few days on the phone for an hour or so. Whatever she says I agree with her, ten minutes later she won’t remember anyway so why upset her with correcting her. She has called the police a few times because she thinks somebody has robbed her. She was all upset that someone had come into her apartment and taken her loaf of bread. You find things in the most peculiar places! Meanwhile she can be funny. If you have that kind of sense of humor. The deteriorating in her mind is shocking and sad for everyone.
My grandfather was diagnosed with alzeimer’s and dementia with Lewy bodies as well as parkinson’s. This has been extremely difficult for our whole family considering he is totally different. He is steadily declining and has been in assisted living the last year. As of this week he is being transferred to a nursing home. This is awful for the whole family, especially my grandfather.
My grandmother was in the beginning stages of Alzheimers when she passed away a few years ago. It was devestating to see someone I loved so much forget who we were. It is such a horrible disease which not only destroys the person who has it, but all of their loved ones as well.
I did not know there were 100 different kinds of dementia.
My mother is in the early stages, and I would agree that the books out there are less than helpful. It’s a tough road. I look forward to reading this book!
It’s unusual to not know someone who isn’t affected by Alzheimer’s in one way or another. It will be very interesting to read this womans journey.
I think I need to have this book. The author wrote my reasons at the start of this page.
Careing for both my Mother just a bit and nearly full time for my Father is like living inside something thats like a childrens show mixed with the most aweful horror movie ever made.
Yes, I want to recive this book.
My husband and I take care of his Father with Alzheimer’s and it has become a tremendous learning experience for both of us. We each take away a differing view because of his status in each of our lives. He views him as Dad and that is hard to see the decline and try to understand the whys and wherefores, so to speak. I on the other hand see him as a Dad figure and also a patient. I see the need for one on one stimulation, daily and know that we are not always capable of giving it. It is so very sad for me to watch both of them suffer. I think that more books like yours, described here, would benefit the families who care for these loved ones as long as they can.
I’ve been a caregiver of Alzheimers family members for nearly 30 years. First, my maternal grandmother for 12 years. Next, a paternal aunt for 8 years. Currently I’m caring for my father and have been for 9 years. Just recently he was in a nursing home for a few days after a surgery and they weren’t paying attention. He fell and broke his femur, and now will never walk again. I’d love to read your book and learn of the experiences you’ve had with it. I’ll keep my fingers crossed that I win a free copy!
As an aging child of the baby boom – we all are seeing this disease more in our lives. This book sounds like a good read !
I’m a CNA and have seen this over and over…never gets any easier…I’d love this book!
I took care of my mother-in-law for ten years. She had Alzheimer’s disease and finally had to be put in a nursing home by her doctor for the last four years of her life. This book may help someone who may be caring for a loved one with dementia or Alzheimer’s disease.
After reading this book I would give it to the nursing home that kept my mother-in-law as it may help them with the care for others.
My grandfather and 2 aunts all had Alzheimers and have since passed away. It was very hard watching them go down that road.
As a public librarian in a community with a large senior community, this book would be an excellent read for families. I’d love to receive an advance reader’s copy, and will zealously promote this title.
Reading this brings tears to my eyes. Dementia is such an awful disease. Bit by bit, day by day, it takes your loved one away. Sadly, I have watched my mother decline from an independent, healthy woman into a state of total confusion where she no longer recognizes most of her friends and family. As our population ages more and more of us will have our lives affected by a loved one with dementia.
Hello to all. My name is Mechelle. My boyfriend’s step-father Bud has the beginning stages of Dementia. I am a member of Caregiver’s Connection & The Alzheimer’s Organization.I want to learn all that I can about this terrible disease.
My brother and his wife are caring for our mother who is in late stage alzheimer’s. Mom was so strong, a nurse, a missionary and caregiver to others. I cannot share in the daily care because of disability and distance, but I have learned to be an encourager for others and this has brought the willing parts of our family closer. I thank God and pray for my brother and his wife who shoulder the daily care, and for my dad who watches his life partner fade away. The caregivers need the support of encouragers — and we all should do at least that. Thank you for your book.
It has been a gift to see clients in my psychology practice care for their precious family member with love.
My dad got diagnosed with Alzheimers some years ago. I have seen him struggle with this disease since i was about 17 years old. I am now 21 and most of the time he doesn’t even recognize me anymore. It’s tough on everybody in the family…i cant help but hold some resentment towards him even tho he doesnt deserve this nobody does but he wasnt really around or good husband to my mom and she is still there loyal and strong trying her best in this system that offers very little help its infuriating how little information and help there is for this type of disease. i know this book would help alot knowing and learning from somebody elses experience and hopefully there is a spanish translated one too so i can get for my mom i know she would really appreciate receiving this book
As my cousin continues to take care of my aunt who has Alzheimer’s I have become aware of how the disease robs the patient and the family of so much. This book would be a great resource.
Thank you to everybody who has taken the time to comment. It’s so moving to hear about your own personal stories of dementia. That’s the main thing I have learned since becoming what you might call a Dementia Graduate: that almost everybody I meet is touched by dementia in some way, in their own family or via extended family and friends. Dementia is everywhere. We are going to have to get properly to grips with this, and spend the money that’s needed to finance the dignity that’s deserved for those who live with it. At the moment there’s a lot of convenient official denial, and it’s family and friends and carer organisations and charities that carry the burden. This has got to change. Meanwhile, information is the key. Many of the letters I get from readers say the same thing: that it’s so good to know they’re not alone in going through what I went through as a carer. Fundamentally in life all we have is each other. My best to you all – Andrea
Many thanks to everyone who posted. And thank you, Andrea, for adding your voice. We love hearing your thoughts. This giveaway offer ended 9/3/10, but we still want to know what you think, especially given that so many of us are affected by Alzheimer’s and dementia.
My 48 yr. old husband suffered from a 4 day diabetic coma of a blood sugar 1,781 and is now disabled. He also has dementia and is constantly forgetting things like balancing his checkbook to misplacing his cane.I was not prepared to deal with this life change so soon even though I have worked in the mental health field for over 8 years.
I am caring for my grandmother who is 90 and has middle stage Alzheimer’s. I am about halfway through this book (library copy) and I love it. Most honest and well-written account I have read. I wish all my friends would read it.
Thank you, thank you, thank you! I am the youngest of 3 children and my mother’s soul caregiver. After a near-fatal fall in 2009, she has begun a slow but steady decline into dementia (we are awaiting another CAT Scan to see how fast it is now progressing). I feel so isolated at times because my every thought is not filled with love and dedication to her. I am human and I am tired, so very tired. I love her dearly but I need direction in this journey that seems to have no road signs.