Jul 232007

How did I get here? So many of my roads have led me here, it must be inevitable. Let me start at the beginning.

Inspired by the stories by Oliver Sacks and a curiosity for understanding how the brain works to affect behavior and reveal who we are, I entered the graduate program in neuroscience at Harvard in 1994. I quickly became interested in the mechanisms underlying addiction, how the same drug administered chronically could hijack our natural reinforcement systems and dissociate wanting from liking. My lab bench was just down the hall from Rudy Tanzi and others who were working to crack the genetic code for Alzheimer’s. I graduated with a PhD in the spring of 1998 with a keen interest in the Alzheimer’s research being conducted down the hall, but I wouldn’t say I’d been directly touched by Alzheimer’s disease yet. That came next.

Looking back, my 85 year-old, widowed grandmother had been showing signs of dementia for years. But she was a smart and active woman, and she navigated around her symptoms with great skill for some time. And her nine children, their spouses, and her grandchildren were all content to look the other way or to pass off her cognitive mistakes to normal aging.

Then we got the phone call. She’d walked to the bowling alley at four in the morning, insisting it was middle of the day and wondering why no one was there. It was quite literally the wake-up call that forced my family to look directly at her and what was going on.

Her daughter, my Aunt Mary, moved into her house (along with my Uncle Barry) and began working from there. Her other daughters, my mother, and, less often, I came over to help out. With nothing we could actually do to alter the course of her disease, like spectators we all watched Alzheimer’s systematically disassemble the woman that was my grandmother. Ironically and almost immediately, she forgot who my Aunt Mary was. When we told her that she was her daughter, Mary, I was struck by how she never believed us and that this didn’t ruffle her. Before Alzheimer’s, if you’d told my grandmother that someone was her child who she believed wasn’t, she most certainly would’ve argued with you or laughed at you or both.

She was losing herself. I watched her studying her own face in the mirror, not comprehending the old woman’s face she saw. She didn’t know her last name, the time of day, to remember to go to the bathroom when she needed to, who her children were, who I was.

But although she lost her history and couldn’t understand who we were or why we were there (she told people my Aunt Mary was a homeless woman who’d wandered in to live with her), there were parts of my grandmother that never left her. As she always had, she loved lively company. We’re a loud, Italian family. She delighted in having us there, sitting around her kitchen table, eating, laughing to tears, telling stories. And she remained good-natured and good-humored, always willing to participate. Here’s one of my favorite exchanges—

Aunt Mary: Come on, Ma, we’re going to the movies.
Nana: Okay, I don’t know who you are, but I’m coming!

The reasons why her family loved her, the reasons why we are connected, disappeared for her, but they didn’t for us. We continued to love her, and she accepted it. She understood our hugs and kisses and smiles and returned them with great enthusiasm. I know she felt included and loved to the moment she died. I know this is my Aunt Mary’s proudest achievement in life.

So I have a background in Neuroscience and a grandmother who had Alzheimer’s disease. I’m on the road to here but not quite here yet. There were a couple of additional avenues I needed to travel first.

As I visited with my grandmother, the neuroscientist in me became fascinated with her progressive dissociation from her concept of self. I wondered what it must feel like, when those parts of the brain that inform awareness and identity become increasingly inaccessible, and I wished I’d thought to ask her more when she had the communication skills to describe it to me. A lover of learning and knowledge, she would’ve readily considered my questions. What is having Alzheimer’s disease like from the point of view of the person with Alzheimer’s? This question was the seed of the novel I would write.

I needed to meet people with Alzheimer’s in the early stages, people who could still describe what it’s like to have dementia. I found them at www.dasninternational.org, an online community of intelligent, articulate, and passionate people in their forties, fifties, and sixties with dementia who support each other and advocate for better care and a cure. They bravely shared their most vulnerable experiences, helping me to create a fictional story about a young woman with Alzheimer’s that is in every way possible faithful and respectful to what having Alzheimer’s is actually like. To these amazing friends of mine, I owe my deepest gratitude and admiration.

When I began the book, I thought I was writing a story as a neuroscientist in honor of my grandmother and family. And I thought that when I finished, I’d quickly move on to other endeavors. But in the course of writing the book, my eyes were opened to more than I’d expected. I see what people with Alzheimer’s and their loved ones struggle through, emotionally, physically, and financially. I see how difficult getting a proper diagnosis can be. I see how ignored and outcast people with Alzheimer’s become. I see how close we could be to a treatment that can stop this disease in its tracks. Seeing what I see, I knew I’d be sticking around.

I’m a neuroscientist, granddaughter, friend, and author. And I’m here. How did you get here?

Lisa Genova, author of STILL ALICE, www.StillAlice.com

  12 Responses to “How Did I Get Here?”

  1. Your stories touched my heart. I watched my own mother's journey toward oblivion and isolation. I, too, wish I had talked to my mother about how she felt before she was unable to communicate.Now I am afraid that I will be the next in the line to take this journey. I came to this website because I am looking for a doctor who will take me seriously instead of asking me to recite my history. My long term memory hasn't been disturbed yet, or at least I think not. What troubles me is — do I not remember things and situations in my past, and I don't know that I've forgotten? Do I have to wait until someone finds me wandering down the street wondering where home is?Thank you for writing these essays. I will look for your book.

  2. I sometimes wish I could die, I will be glad when my mother FINALLY dies. This has to be the WORST thing I wish she had cancer.I've allready ended up in the hospital with one nervous breakdown. Living in rural Texas there's not much support for the caregiver. My mom won't eat, won't take her medicine and has turned into quite a good liar. I hate Alzheimers!!!!what will wlaking do? I'm at the end of my rope.

  3. My husband is on two medications, and we see continued decline. He is very frustrated,and does not grasp what is happening to his "brain". He cries and is confused, but can still function to a degree. I feel, very overwhelmed for him and can only imagine the depth of his confusion. I read, all I can about the condition, the answers are vague and seem of little help. I have seen this decline coming for the last 5 years.

  4. How long will it take this government to find a cure for Alzheimer's? Will it be the 'Baby Boomers' that will break the bank, being put in nursing homes under Medicaid? How long must this last? I was a caregiver for 14 years and I DO have to say, this disease taught me more about myself then anything I've every gone through. It taught me to always listen to someone, even though you think they maybe crazy. Listen and learn from others, especially the Alzheimer's person if he/she can speak. The person I cared for lost their ability to put words into sentences within a year of being diagnoised. Back in 1990 it was so hard to be diagnoised. Funny thing is, she got worse when she knew what it was, for she knew there was NO cure. When will there be a cure?

  5. Thanks for all of the stories that I have read here. My biggest worry is for those that are victims of those that prey on the people that have developed this disease. The con-man, the family member, the neighbor, the cashier where the person has shopped at for years, the criminal that has taken the person for all that she/he has. That is another world to explore. To protect the person with this life changing disease and be the 'police' of our countries elderly and other members that are now becoming our responsibility to care for.Care for! Care about! Care With!

  6. We buried my Dad on Monday. He was diagnosed nearly seven years ago. We lost him mentally about 18 months ago when he could no longer recognize us. In the end it was cancer that took him. Bladder cancer. Very treatable for someone who could understand the treatment. We opted not to treat the cancer. It is so very sad, but it also a relief that he is gone. My mother was his primary care giver. The doctors told us that she is to commended for keeping him so healthy for so long. In the end we discontinued all the meds, including Aricept and Namendia and another as a precautionary for psychotic episodes that never happened. While he had stopped communicating with us, it seemed that he was almost pleased to stop being medicated. He died six days after we made the decision to stop the meds. When he passed away so did that tortured look on his face.

  7. Hi,saw your blog.Its excellent,nice story with AD.Great Work.Iam from India and have been associated with the cause of senior citizens for three years now and was working with Dignity Foundation as Chief Of Project at their Dignity Lifestyle Retirement Township at Neral, Near Mumbai and was instrumental to start and run India's one of it's kind First 24 x 7 Dementia Care Unit with the help of other core staff. Iam have been working for the cause of Senior Citizens and catering awareness by participation and posting my article in http://www.Karmayog.org and SSS-Global.Yahoogroups.com for Elder related issues and problems.I have also been regularly posting articles with regards to Dementia and Alzheimer's. Its my passion to work with Elders and give them better lifestyle,Love and Care in their golden years.Pls also visit my blog : <a href="http://peopleforsocialcause.blogspot.com/http://peopleforsocialcause.blogspot.com/<br />I have posted one of your story.Thanks and let me know how we can work together for the cause. Warm Regards,Sailesh MishraAdvisor – Society for Serving SeniorsLife Member – ARDSI,Mumbai ChapterForget yourself for others, and others will never forget you

  8. "Still caregiving" JeanMy husband and I are caregivers to two mentally challenged female non-verbal clients. I have been taking care of one of them since 1996, a year ago she started showing signs of demential/alzheimers do to fact she was born with Downs Syndrome, the doctors have informed me for year she was more prone for the affliction. She turned 61 years of age in August. She started about a year ago showing signs, and also seizures started appearing. So medication that might have helped only gave her bad side effects, so her condition has escalated. At this point she is well advanced. Course to make it harder is the fact she can't tell us, so we have guess alot. I know it won't be too long she will have to put in a nursing home or something like it. I am showing signs of stress as I am going to be 65 years young in November. I am not quite ready to give up, but know soon I will have to. I have read some of the other comments and have got some help and ideas. I know the day will come when I will loose her. But with faith and help from my husband, family and friends I will be able to stay strongSeptember 27, 2007

  9. My family and I are just entering the world of alzheimer's and I am researching/asking for help everywhere I can. I need to understand this disease so that I can be supportive of my 80-yr old mother. What I am looking for is this….several years ago there was a TV commercial with a very bright and energenic elderly gentleman talking about how everyone thought he had alzheimer's. The commercial showed him in a confused state, shuffling along in his gait and very feeble looking. He went on to explain that it turned out he did not have alzheimer's but instead another treatable neuro disease. Does anyone remember this commercial and the disease it referred to?

  10. I am 37 and the primary caregiver for my 78 year old Dad who has Alzheimer's disease and lives with me in North Carolina. I realized that my Dad had severe dementia after my Mom passed away in 2004, and he moved in with me. That is how I got here.We have a full time CNA home health aide, Katie, who stays with Dad while I work.I have a full time job, a family of my own (including my love, David and his 12 year-old daughter, Jessica), am a volunteer for Meals-on-Wheels and the Lion's Club. I am also working on developing a comprehensive website geared to help Caregivers.When Dad first came to live with us, I thought my life was over. Then, I made a decision. We can let this ruin our lives, or we can fight. At our house, we use Aricept, Namenda and laughter.I am also writing a blog that shows the lighter side of caregiving, and offers tips for caregivers. It forces me to write down one funny thing about my life with Dad every single day. That is a very important part of making me a better caregiver.I am committed to making sure my Dad will not suffer from Alzheimer's. And hopefully, those of us who love him will not either.Thanks,Kathy Hatfield <a href="http://www.KnowItAlz.comwww.KnowItAlz.com<br />my caregiver blog

  11. I remember my grandma forgetting were her keys were and everybody saying things like "you're not paying attention to what you do" but my grandma was very methodic and I, being like her, told my mother something wasn't right. They brought her to a doctor a cupple of months later (she got worse very fast) it was Alzheimer. She was the widow of a doctor, she knew what was coming and the hardest part was to see her crying because she knew we would have to take care of her. She said she would be a nuisance for the whole family and who could love her like that… She was such a strong woman, it broke my heart to see her crying. But there were also sweet moments. I remember her watching tv, there was an opera playing with Placido Domingo as tenor, and then she said: "It was so nice to sing with Placido at the Scala in Milan…" She was smiling so sweetly that it touched my heart, because she truly believed it!Things weren't nice for a while. She became aggressive for almost a year, the aggressiveness lasted less than five minutes every time but it was hard, because it started all of a sudden and you never knew why.When thing got worse we had to take her to a special shelter (only dementia and alzheimer patients) we couldn't take care of her anymore, not even with 24h of professional help. I have nice and sad memories of her sitting quietly in her wheelchair, but the sweetest one is from the last time I saw her. She couldn't speak anymore, but I talked to her and then I sang to her the songs she used to sing to me when I was a kid and suddenly she started to sing with me, not words, just music and she was smiling and moving her head when a shadow of life came back to her eyes. She brought her hand to my face and caressing me she said: "beautiful". I knew she was dying, I could feel the absence of life in her so I told her I loved her and hugged her saying an inner goodbye. She passed away a week later. I can't forget how hard the illness is for everyone, but I have to say that the illness gave me a grandma that I would have never met otherwise, as she was not the loving type but the hard and distant, and during her illnesss she caressed us, touched us, loved us even when she couldn't remember who we were.I will carry her always in my heart and I will laugh full of joy the day we can prevent or treat Alzheimer.

  12. LISA! I WISH YOU WERE HERE! My eyes are red and puffy, my shirt is saturated with my own tears! I need to HUG YOU FOR THE BEST BOOK I HAVE READ IN- probably forever!I have been a healthcare professional in the surgical department in a Hospital for over 15 years now. Alzheimer's is one of the few diseases we aren't exposed to very much inside the surgical suite, as most of our patients are asleep or pre-medicated for their procedures. I overheard a conversation in the hallway of the hospital 2 days ago that a couple of other nurses were having, I thought they were talking about a patient, so I slowed down to listen a little longer (HIPPA laws are strict, and this sort of conversation doesn't happen in the hallways of our hospital). These two were fired up and talking so fast!I wasn't the only one to stop and listen about this poor patient! Others stopped and listened as these nurses (who are friends) were talking about this patient named Alice. This two person conversation had attracted 5 other people (including myself), and four of them knew this poor woman Alice and her hiSTORY. The three of us lost souls who didn't know this patient started asking questions about her and certain outcomes of those discussed situations. After nearly 8 questions were asked about this Alice, we were finally told that this was a character in a novel that they had all been passing from hand to hand during their long shifts.As it turns out, they were talking about your book! The nurse the most fired up about “STILL ALICE” claims to have read it 10 times to-date.I bought it the next day… and was too busy to start reading it, but I carried it in my AQUA blue bag all day, and told everyone I met about what I had heard that I was about to read. (Two girlfriends went to Google “STILL ALICE” right away.) I didn't get a chance to start your book until this morning… 6 hours later (sorry, I'm a slow reader)… I am finished, and blogging you asking to cry on your shoulder! (My copy of your book is currently with my neighbor who watched her own mother die of this horrible disease… and I brought it to her in a ball of snot and tears just now).Thank you tremendously for a wonderful story, for Alice, and for so much insight to a disease I barely knew about. Your delivery and execution were awesome. I am blogging you first (now) then immediately buying more copies online and having them delivered to my immediate family members!P.S. I have never contacted a writer of a book before today! Just thought you should know!THANK YOU!~Amber, Arizona, USA~

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