More than five million Americans suffer from Dementia. My mom was one of them. A site for young adult caregivers struggling and coping with "the long goodbye." Created in 2007. Ended in 2014. Stay tuned for my new blog about life after dementia, called "The Recovering Caregiver."
There are a lot of similarities between a small child and someone living with dementia. Specifically, frontotemporal degeneration. I remember so many of my mom’s odd quirks. Once, she poured her Coke into her glass of red wine. She drank it, much to my dismay. My toddler did something similar recently. She poured water into a bowl of hard boiled eggs then she mixed it around and ate it. I immediately thought of my mom. I can’t remember if I laughed or felt sad. Her disease caused her to mentally and emotionally regress… a real life Benjamin Button. I always thought having a young child would be, in some ways, easier than having a mother with dementia. In some ways it is: there’s so much more joy, more laughter, fewer tears. My toddler is also considerably lighter than my mother, and when she is upset or angry, I can actually pick her up and hold her… or relocate her. Something I wasn’t exactly able to do with mom (remember those times with her priest?). Lately though, I have been missing my mom; missing something about her… I can’t quite put my finger on the what. Maybe just her presence. Her scent…. I don’t know. I lost my mom, really, when I was in my 20s… I became the parent and she became the child. Before that, I was living in another city thousands of miles from home. I feel guilty about that. Maybe if I had stayed in Arizona, maybe I would have had more of those moments… precious moments that would have stuck with me, helped shape me into someone better that who I became. Instead, my memories are blurry… sometimes I’ll hear something or get a whiff of something and it’ll transport me to a particular time or place… but they’re few and far between. And sometimes I’ll dream about her. Those are the sweetest nights. I wish she came to me more often.
And then there are times when I can’t feel her at all. The loneliness is palpable.
I thought I would be relieved when my mom died. I was in most ways. I was glad she was no longer suffering in a broken down body. I was glad to put that chapter behind me and focus on my baby. I thought the hurt would fade away, too. Time does some neat tricks when it wants to, and frankly, I lost my mom a long time ago. But what I’m learning is that this kind of loss sticks with you. I know it has changed me. And I don’t know if it’s for the better. The final years were incredibly brutal and how one recovers from such a trauma is beyond me. To wallow in it would be selfish and indulgent, though there are days where I wish I could stew in it. So I try to keep going. I hate when things become stagnant. When that happens I desperately seek change. Is this blog, is the work that I do to share our story stagnant? I mean what else is there to say? Is it — this — the anchor holding me down or the means to truly let go. I have no idea what any of it means or if it means anything at all. I guess the truth is I don’t know who I am anymore now that she is gone.
I don’t really know what to say at this point. The thing is, I still have a lot to say. I want to tell our story. I have to. I need to keep going because, well, what else am I going to do? Sit back quietly and wait for this thing to attack my brain? Um, no. So I’ll just ramble and see what comes out. My mother has been gone more than five month now. She died. From Frontotemporal Degeneration (Pick’s disease). He death certificate says the cause of death was Alzheimer’s Disease, but that’s wrong. I don’t know why I haven’t tried to get that changed. Actually, I do know: I’m too tired right now. I’m also angry. Angry at the doctors who we trusted (because that’s what you’re supposed to do)… those “experts” who were supposed to help my mom, treat her with compassion… but more often than not, they harmed her with their debilitating psychotropic drugs. She was a number. Another patient. And they didn’t really care because they didn’t have to — especially those quacks at the geriatric pysch wards (like the doctor who wanted to treat my mother w/ shock therapy because he thought she was bipolar… at 72). For the most part, and with the exception of a small few, their job is stabilize and discharge — in 30 days or less (if possible).
I’m also relieved. Thankful FTD is no longer gnawing away at her brain; torturing her. By the end, my mom’s once bright smile looked more like she was grimacing in pain — her teeth were yellowed and crooked… she was grinding her teeth. It was heartbreaking, yet impossible to get her to unclench her jaw.
And somedays I’m anxious. What am I going to do now? I HAVE TO TELL HER STORY TO EVERYONE AND ANYONE WHO WILL LISTEN — MARIA SHRIVER, JULIANNE MOORE, SETH ROGEN — LISTEN TO ME!!!!!!!!!!!!!!!! HER LIFE MATTERS AND I WANT THE WORLD TO PAY ATTENTION!!!!!!!!!! HER SUFFERING WAS NOT FOR NOTHING! LISTEN TO ME!
Hmmm. Maybe that’s anger, coupled with desperation.
I’m not really sure how the stages of grief work when it comes to dementia. And frankly, I don’t care to know. I’ve lost my mother twice: once when she was alive. I grieved then. Then again in August. The only difference is now I can’t hold her hand. I’m not sure if this is grief, per se…. I don’t miss her, but I miss visiting her. I miss visiting the other residents. And I miss those little things about her that I lost a long time ago. Like her smile. Even when she was sick, she would smile and call me, “Mijita!”
She had forgotten my name.
I’m not a soul searcher by nature. I know people who feel deeply and to me, it’s an unnecessary indulgence. Yes, I overthink things, but to find deep, profound meaning in her death (or her life), well, what does that even mean, really? Seriously?! I haven’t written a word since my last post announcing her passing. I don’t talk about her very much. And I’ve cried maybe a handful of times since she left me.
More than anything else, I’m tired. Really tired. A little less so these days since I’ve forced myself to read a little more instead of drowning any sadness in episodes of Modern Family or Mob Wives. Baby steps. Project Runway All Stars is on.
Here’s the problem, truly, when someone is lost to a disease like FTD or any other type of dementia… the burden falls on you, the caregiver; and as that person tumbles down the rabbit hole of dementia, they become utterly and completely helpless. Now it’s up to you to pull up your big girl (or boy) underpants and make some really hard choices. Sometimes you have to choose between “mostly shitty” and “shitty.” And when they finally pass away, you can’t help but think about what you could have done differently (after all, don’t you deserve a happy ending, too?). I sometimes drown in the wouldas, the couldas and the shouldas. And please don’t say, “think about what she was like before she became sick.” You can’t imagine how difficult a task that is to accomplish. She had been sick for a very, very long time… long enough where I have forgotten those good times. But I am trying. I’ve been trying to commune with those old memories in recent weeks. It may sound nuts, but intense physical activity (i.e. spinning) whereby your brain feels like its on the verge of imploding usually does the trick. Brief moments flash by… poofs of color… and then they’re gone. Though sometimes all it takes is a particular sunrise or a scent. Then, something is triggered.
The sky started rumbling. A storm was coming in from the north. There was wind, thunder and lightening. I hoped it would rain. But it never rains anymore. Then I thought about my mom. I wondered if God was coming for her and this was his grand entrance. As I stood over my kitchen sink washing baby bottles, I decided to go sit with her — just in case. It was 7:45 p.m.
My mom was sound asleep. She hadn’t eaten dinner. She hasn’t eaten in days, really. Earlier that day, I gave her a few drops of water, which was a mistake. She started choking. I got up from my chair, ran out and grabbed a nurse. They used a swab to try and absorb the remaining water. It was upsetting to watch, but, then, that’s what happens when you’re dying, I suppose. You lose your ability to swallow. I still can’t believe this is happening. Everyone says it is. I keep asking the nurses if they think she’s dying … just waiting for the one nurse to say, “Nope. She’s definitely going to bounce back from this, too.”
Now, here I was, back at her bedside. I needed to talk to my mom … really talk to her. Something I have had a hard time doing … she has been mostly unresponsive for a very long time. How do you talk to a body? A body that rarely emotes, except to scream out; a body that takes and is incapable of giving because of a wretched disease. Eventually, you just stop. The silence is more comfortable. It’s safer. The words felt artificial after a while.
I don’t know why I’m having such a tough time accepting that this is (probably) the end of our story. I think I’ve been very realistic about our entire journey. Maybe too realistic, in fact. I’ve had moments where I’d step back and wonder, “am I too detached from what’s happening to my mother?” Have I shut off certain emotions in the name of self-preservation? I suppose, at the end of the day, it doesn’t matter. None of it matters. The one thing I can accept is that we’re all going to die. That’s how every story ends. And yet, as a species, we have an incredible knack for wasting every precious second on petty bullshit … bullshit that no one will care about in 5, 10, 20, 100 years.
Or even right this second.
And who wants their headstone to read: Here lies YOU. You wasted your life being angry, being sad, being resentful, being vindictive, being ridiculous, and now you are dead. The end.
So here I am waiting. And learning. And remembering. I am (probably) watching death hover over my mother. In some ways, it’s a blessing. A blessing that soon she’ll (probably) be at peace. And a blessing for me … it serves as a reminder that we have this one life, and anything can happen. Death is democratic. So is dementia. It doesn’t care if you’re white or black, a Democrat or a Republican. It doesn’t care if you’re Jewish or Muslim or Christian. It just doesn’t care. That’s not its job.
I’m still coming to terms with the idea that my mom is dying. It hardly seems possible. I mean, I knew, eventually, she would die. But death felt faraway. It still feels far away. If she is dying, it’ll take time. My mom was in OK shape, physically, before her sudden decline; she was decently hydrated, and like I said, the woman has a knack from coming back from the brink. She’s done it before. Why couldn’t she do it again? Never mind the fact that she hasn’t really eaten in six days … just a few bites of sorbet and sips of water through a plastic pipette.
It doesn’t feel like she’s dying. I don’t feel an overwhelming urge to sit by her bedside until she finally passes away. Maybe I should, but what is the point? Nothing is happening. She’s lying there, corpse-like. Sometimes her eyes will open, and then she’ll fall asleep again — eyes still open. I can tell she’s sleeping because she starts snoring. I don’t know what to do with myself, so I squeeze out a large dollop of citrus-ginger scented hand lotion and quietly massage her arms and hands. I say a few prayers, tell her it’s OK to leave this world. And then I shake my fist at God.
Really, you’re going to drag this out to the bitter end, huh?
It has been ten years — give or take — since I noticed something was wrong with my mother. That’s more than 3,000 days. And here we are. Waiting. Waiting on Him. He must be Latin, just like us… we’re always late.
My mother’s family is very religious. Everyone is praying for her. And if they’re not praying for her, they’re thinking of her. There are a lot of thoughts and prayers are floating around … “You’re in my thoughts,” “Recite this prayer,” “Tell her we love her.” I’ve also been told that God will take her when he’s ready. I realize he’s very busy these days, what with mankind slaughtering one another (in His name), but surely he can move her up the list… I see it sort of like a transplant list. He’s transplanting her from Earth to Heaven. But this dilly-daddling is total bullshit. I find it difficult to believe in a loving, kind God when a) he takes his time escorting her through the pearly gates of heaven and b) this is how he saw fit to treat her these last ten years. With a terribly grotesque disease that has rotted out her brain. My mother who devoted herself to her church and to God. Frankly, I’m surprised the woman never became a nun. A life of prayer would have suited her, I think.
So here we are waiting. Waiting for her to bounce back and resume a life of nothing or waiting for her to die. Peacefully, I hope. And in a timely fashion.
Dealing with my mom was especially difficult, mostly because of the lack of help. Unfortunately, due to of her type of dementia — frontotemporal dementia — it was almost impossible to ask for help because of her behaviors. In hindsight, I suppose, there were small things that could have been done to help lighten the load. The thing is, when you’re in the thick of this kind of caregiving, you are the one who is often sidelined……………………………… you become a prisoner to your loved one and your home. You don’t have time to reach out, check in and let friends and family know that you’re OK.
Caregiving is about survival. It’s about getting through the day (and, sometimes, the night). It’s exhausting work. And here’s the proof: According to the Alzheimer’s Association, in 2013, 15.5 million caregivers provided more than 17 billion hours of unpaid care valued at $220 BILLION.
So if you know someone who is caring for someone with Alzheimer’s disease or another dementia (like FTD), do something. They probably could use a helping hand from time to time, but don’t expect them to call you.
If you are, then you’re kind of being a jerk because it’s not about you. At all.
I found this article by Marie Marley on the Huffington Post blog. It speaks to this issue, and gives you — the friends and family of that person caring for someone with Alzheimer’s disease or other dementia — ideas as to how you can help.
Nancy is the primary caregiver for her husband, George, who has mid-stage Alzheimer’s. It’s exhausting work. She’s on call 24/7 and often feels overwhelmed by her responsibilities, which seem never ending. After four years of this, she’s burned out. She doesn’t have any time to herself and is neglecting her own health. Furthermore, her heart is broken as she watches George’s memory and functioning steadily decline a little at a time.
Sally — Nancy’s best friend — stands by and watches as Nancy becomes more worn out by the day. Sally would like to help but she doesn’t have any idea what to do. Every time she asks Nancy how she can help, Nancy just says, “There’s really nothing you can do.” Sally takes this at face value and after a while stops asking.
According to the Alzheimer’s Association, 15.5 million people are serving as caregivers to people with Alzheimer’s, providing over 17.7 billion hours of unpaid care every year. Carrying out their duties has a negative effect on their physical and mental health. (See my previous article, Alzheimer’s Caregiving May Be Wrecking Your Health, for more details about the impact of caregiving — especially taking care of a loved one with Alzheimer’s.)
These people desperately need all the assistance they can get. It will help them preserve their own well-being. It will also help them improve their caregiving since no one can be a good caregiver if they’re burned out all the time.
With so many people being Alzheimer’s caregivers, chances are good that you know one – either a friend, relative or neighbor. And chances are that you’d like to help, but like Sally, you simply don’t know how.
Many Alzheimer’s caregivers are deeply dedicated and feel like they should be able to “do it all,” and they are often so burned out they can’t even imagine how anyone could assist them. In addition, they may be reluctant to ask for help because they don’t want to impose upon people and because they’re afraid people will refuse to help.
So if you really want to be of service, instead of just saying, “Let me know if there’s anything I can do,” you may need to figure it out yourself and volunteer for a specific task(s).
Here are but a few things you can select from:
1. Help clean the house 2. Take over extras from a meal you’ve cooked for your family 3. Do the laundry 4. Do the grocery shopping 5. Pick up medicines from the pharmacy 6. Volunteer to run other specific errands 7. Mow the lawn and/or do other yard work (assuming the person doesn’t use a lawn service) 8. Visit and just let the person talk about feelings 9. Drive the person with Alzheimer’s to their daycare center (if they’re going to daycare) 10. Take the person with Alzheimer’s to the doctor 11. Take the person with Alzheimer’s out for a drive 12. Look after the person with Alzheimer’s in your home for a few hours
With a little thought you can certainly come up with additional tasks. Items 9 – 12 are especially important because they will give caregivers some badly-needed time alone to rest and recharge their batteries. But whatever you select, try to be specific and try to volunteer to do it on an ongoing basis. Make sure you will be able to continue your help before you make a commitment.
I can tell you from my personal experience as an Alzheimer’s caregiver for seven years that anything you do will indeed be most helpful. I had no assistance and furthermore, I didn’t even ask my friends to do anything for me. I only wish I’d read an article like this one back when I was a caregiver. It could have made a big difference in my daily life, and would have significantly reduced my stress. It also could have prevented my health from deteriorating as much as it did.
So the next time you see someone you care about serving as an Alzheimer’s caregiver, consult this list, or come up with a task(s) on your own, and simply announce to the person that you are going to do it and tell them when you’re going to start. He or she will probably be greatly appreciative, even if initially hesitant to ask for your support.
Can anyone think of other specific things that could be done to help an Alzheimer’s caregiver?
Another Mother’s Day has come and gone. It’ll be two weeks this Sunday. I think. OK, so I’m totally late to the game here. I wanted to write about it; but for me, the day was just another day. Sort of. It was my first Mother’s Day. It was my Mother’s 37th Mother’s Day. She was probably aware of maybe 30 Mother’s Days, give or take …………………………………………… who knows. It’s hard to say. Still, for a long time, Mother’s Day hasn’t meant that much to me.
(if your mother had no idea what day it is, you too might find it really hard to go all out on her behalf; I mean, at that point, it’s more about you, not about her. It feels cheap, even forced. At least that’s how it felt to me.)
After my mom started forgetting things like Mother’s Day, I stopped paying attention to the day. Besides being hurtful, the day is over the top and absurd. I mean, let’s be honest here, if you are so inclined to thank your mother because it’s Mother’s Day, you’rea) thanking your mother for doing her job. b) it’s a little self-congratulatory; moms you signed up for this; and c) maybe you should start thanking your mother on a daily basis.
By the way, C is free advice.
That said, I suppose this Mother’s Day was different. I’m now someone’s mother. I received my first Mother’s Day cards. People reached out to wish me a Happy Mother’s Day. Still, it was all very foreign to me. And yet, despite the lovely sentiments, I managed to remain mostly indifferent about it. OK, I managed to ignore (or rather, avoid) the day (and what it means) to the best of my abilities. I didn’t want to feel anything. Because maybe if I actually felt something, if I let the day mean something to me, it would have been a betrayal……………………………………… to my own mother.
I think next year will be different. Two weeks ago, it was just too much to process. Too much to take in. Just another reminder of the past; the horrible, horrifying past.
You see, when I sit down and think about the last ten years and process the loss, the sadness, the disappointments, the grief, the frustrations, the letdowns …………………………………………… to inhale that kind of pain…………………………… I think few people get it. Watching your mother endure this kind of agony, watching your mother pound on glass inside a looney bin………… witnessing horror after horror………………………………… this endless agony, it does something to you; it alters your DNA.
Kathy Ritchie’s mother is living, yet she is mourned for her loss of self. She suffers from dementia.
Ritchie, founder of the blog My Demented Mom, visited HuffPost Live to discuss the disease affecting five million Americans and her personal struggles with her own mom’s diagnosis.
“It is painful, it is a trauma,” she told host Nancy Redd of the crippling disorder. “I have been grieving my mother for a very, very long time.” Ritchie recalled seeing her mother in terrible states, heavily medicated with antipsychotic drugs. The woman was not the mother she knew, and not the grandmother she wanted her newborn daughter to remember. “It’s hard to talk about,” she said. “She was just a really good person.”
Ritchie’s blog opens the discussion to others faced with similar caregiving demands, but it also helps her cope and push forward, knowing her daughter will one day read about her efforts. “The blog captures so many moments and I want her to know the kind of woman her grandma was and what I did for my mother,” she said.
The other day, my friend Gary posted an NPR “All Things Considered” interview with a woman named Deirdre Sullivan to his Facebook wall. The gist of the interview was the importance of going to the funeral — a lesson that was imparted to Sullivan by her father.
Sullivan says this: I believe in always going to the funeral. My father taught me that. The first time he said it directly to me, I was 16 and trying to get out of going to calling hours for Miss Emerson, my old fifth grade math teacher. I did not want to go. My father was unequivocal. “Dee,” he said, “you’re going. Always go to the funeral. Do it for the family.”
The interview got me thinking. And then it began to irritate me. My mother has mostly been forgotten about. I rarely hear from her family or friends — family and friends she did so much for before the dementia consumed her gray matter — even on her birthday. Yes, I receive the occasional Facebook message or email, but mostly, I hear from no one.
I suppose life goes on. We reside in our own purgatory.
It’s been like that for a very long time.
Which brings me back to the whole funeral thing.
Sullivan says this about her own father’s funeral, The most human, powerful and humbling thing I’ve ever seen was a church at 3:00 on a Wednesday full of inconvenienced people who believe in going to the funeral.
When my mother finally takes her last breath, she will likely be surrounded by myself, her husband and my boyfriend (a man who has done more for her than her own siblings). As for the funeral, I don’t know who will reach out and ask about attending. As for those who completely abandoned her in life — I am thinking of a select few — well, they likely won’t hear about it from me.
If you weren’t there for her in life; why bother in death? Let’s face it: Going to the funeral is the easy part; hardly an inconvenience, especially if you never had to witness the wretched reality. The truth is, if she mattered at all, there would have been visits, inquiries, phone calls, offers of support — especially during those incredibly dark, dark days when she was locked away or when they wanted to electrocute her brain.
My interview with Max Wallack, founder of Puzzles To Remember, an organization that provides puzzles to nursing homes that care for Alzheimer’s and dementia patients, proves that no matter how old you are, you can make a huge difference in the fight against Alzheimer’s disease and dementias.
Wallack first witnessed the devastating effects of Alzheimer’s disease when he was just a child. His great-grandmother suffered from AD, and it was watching her descent into the darkness that prompted Wallack to do something about it. When he was 12, he started collecting and donating puzzles to facilities that cared for Alzheimer’s patients. And when he was 14, he worked with a philanthropic group to create puzzles that were geared toward patients with memory loss. Today, he’s a student at Boston University and a research intern in the Molecular Psychiatry and Aging Laboratory in the Department of Pharmacology and Experimental Therapeutics at BU’s School of Medicine.
Below, Wallack talks about the book, his advocacy work and how you — and your child — can become advocates and help #ENDALZ!
You’re incredibly active in the world of Alzheimer’s and dementia… What spurred this interest and what are you working on today?
I have always been interested in science and in inventing. I won my first invention contest at the age of 7 when I made a special step to help elderly people get into minivans. I made it for my great-grandmother, who accompanied me and demonstrated the step at the awards ceremony in Chicago. As I grew older, my interest in science, and specifically medicine, increased. Of course, this was spurred on by Great Grams progression into Alzheimer’s disease. I read more and more about this subject.
Today, I am very involved in Alzheimer’s research. An article I coauthored will appear in September’s Journal of Alzheimer’s Disease, and I am in the process of writing up several additional articles. My work has focused on three areas: 1. Enzymes that can be used as biomarkers to test for early AD, including the differences in results between males and females 2. The effects of ACE inhibitors on AD patients and 3. The use of a naturally occurring hormone, already approved for use with diabetic patients, which seems to be capable of clearing significant amounts of ABeta from the brains of transgenic mice, and we are already beginning human trials with this hormone.
Talk to me about the founding of your organization Puzzles to Remember — what is it, what inspired its creation and how old were you when you decided to create PTR?
During the last few months of Great Grams’ life she was in and out of hospitals and nursing facilities. When I visited her in those facilities, I noticed that patients who were working on jigsaw puzzles were calmer and less agitated. I researched this, and I found that cognitive activities, such as jigsaw puzzles, can help extend the time during which an AD remains functional in society. I decided to start collecting puzzles and donate them to the facilities that had cared for Great Grams. Soon, I realized I needed a means of accepting donations so that I could send puzzles to more distant facilities, and, when I was 12, I applied for 501c3 status. I also found that there was a dearth of puzzles that were most suitable for Alzheimer’s patients, so I contacted Springbok Puzzles. They had previously donated to my cause. Springbok is a very philanthropic company, and together we developed the Springbok Puzzles To Remember. These puzzles, developed in 2010, when I was 14, have 12 or 36 large sized pieces with bright colors and memory provoking themes. To date, I have distributed over 24,500 puzzles to over 2,050 facilities around the world.
There are many young people who have been touched by Alzheimer’s disease and other dementias. What advice would you give them if they wanted to become advocates and make a difference in the lives of those suffering from the disease? How can they start?
This is the same question I get asked frequently about philanthropy. My answer is, start small. Do something to help Alzheimer’s patients or caregivers. Visit a facility. Join a group for Alzheimer’s patients or caregivers. Help out in a memory café; there are many of those just being set up. Sign up for an Alzheimer’s Walk and help raise funds. They can do just one of these things, or as many as they wish. The point is to just get started.
When did you decide it was time to write a book about dementia for young kids? Was it your idea or were you approached?
I have been writing this book in my head for years. One day I asked Carolyn Given, my former middle school English teacher, if she would coauthor such a book with me. She said she would, and, within two hours, I wrote and sent her a completed first draft. Of course, the book underwent several revisions after that, but I was able to write it so quickly because I had thought about it for so long.
Talk to me about the scenes you witnessed growing up with a great grandmother living with dementia, and what, if anything, ended up in this book?
As part of her AD, Great Grams suffered from extreme paranoia. The story I tell most often is that when my whole family visited Hawaii a few months before Great Grams’ death, I got to meet many, many native Hawaiians. Apparently, when someone goes up to a Honolulu police officer and says “those people are trying to kill me,” they are required to do an investigation. So, when Great Grams got out of her wheelchair and ran to the police officer with that story, I got to meet most of the Honolulu police force!
Great Grams also had many fears. Many fears are represented in the book, although they might not be identical to the ones Great Grams experienced. The scene of the police officers bringing Great Grams home is one that is emblazoned in my mind. It happened more than once.
Through the Alzheimer’s Reading Room, I have interacted with Alzheimer’s caregivers for many years now, and I have formed great friendships with some of them. Some of the scenes in the book are based on the experiences of a family in New York City that has a grandmother with AD and a 6-year-old daughter that has assumed a caregiver role. Some of the illustrations were actually redrawn from photos of that family, including the one with the little girl feeding her grandmother off a red plate.
Talk to me about the scenes you and your co-author came up with and how they came to be. What messages did you want to your young audience to come away with?
Some scenes were based upon my experiences, some were based upon the NYC family’s experiences, and others were developed to convey messages about Alzheimer’s disease. I wanted to write a book that would not be “dark” or frightening, as many other AD books for children seemed to me. That is one reason that I asked for Carolyn Given’s help. I knew she would keep the book from becoming too dark, and perhaps even add a bit of humor. I wanted the book to actually provide children with some helpful coping mechanisms, something which I could find in no other book. I wanted to assure children that they were not the cause of any aspect of this disease and that this disease is not contagious. I wanted to touch upon some difficult topics such as incontinence and wandering in a way which children would understand. I also wanted to provide a simple understandable visual image of what is taking place in the brain of someone with AD by showing a nerve cell throwing and catching a message both in a healthy cell and in one with AD.
I love the title of the book. What inspired it?
Alzheimer’s patients often place articles in strange places. I just was trying to present an image that children might find amusing.
What do you hope to achieve with this book? Is it geared towards kids who have a parent or grandparent or great grandparent living with dementia or is this something you hope all kids will read?
When I wrote the book, I wrote it expecting it to be just for children. What has surprised me is the large number of reviews that say that the book has a lot to offer for adults, as well.
I wrote the book to help child caregivers. However, with the growing number of AD patients, almost every family is touched by this disease in some way. I think all children can benefit from reading this book. In the case of the NYC family, the children of their neighbors have read the book and now interact much more constructively with the grandmother. Striving to understand other people makes us more empathetic and more kind as individuals.
What is your favorite part of the book?
My favorite part of the book is when Julie decides that she might become a scientist and help find a treatment or cure for AD. I think it is very important to provide hope for the future.
The drawing of three scientists in the lab is actually a drawing of me, Dr. Qiu, my mentor and Principal Investigator, and Dr. Zhu my mentor and co-worker.
I also think it was important to mention clinical trials at the end of the book. Willingness to participate in clinical trials is a necessity in order for us to find treatments and/or cures.
How have children and their parents received this book?
The response to the book, from everyone, has been just wonderful. Parents have used the book almost as a manual to explain specific behaviors that the child is witnessing. I have heard that children have been able to interact much more constructively once provided with some useful coping mechanisms. I have even received notes of appreciation from 6 year olds.
I am surprised and pleased that word about the book has spread around the world. A company in Singapore that makes children’s toys and assistive aids for seniors contacted me and wants to purchase 40 books to distribute to facilities there. Apparently, information about Alzheimer’s disease is not very easily available in Singapore. They hope to use this book to bring light and attention to this disease.
One of the comments I hear most frequently is, “This book really needs to be translated into . . .”
What advice would you give to a young person watching this disease unfold right before their eyes?
No part of it is your fault and you cannot catch this disease.
The person with AD is the same person they have always been. They have not turned into someone else. You can still enjoy many interactions with them. There is still “more there” than may be easily apparent. Art and music are great avenues for interactions.
Many people are working very hard to try to find treatments and cures. Maybe you can help.
What’s next for Max Wallack?
I will continue working in the research lab. I love my work there, and I learn more there than anywhere else. I will continue my studies at Boston University and then, hopefully, attend medical school and prepare myself to become a Geriatric Psychiatrist, working with patients and their caregivers.
It’s World Alzheimer’s Month. I hope you watch this video. Share this video. Tweet this video. Facebook this video. Tell people about this video. If you’ve been touched by Alzheimer’s disease or any other dementia, consider it your responsibility to spread the word. Make people aware. It starts with YOU.
I have a message for my mother’s friends, family and acquaintances: She’s still alive.
My mother’s heart still beats. Though she might not be able to talk to you, walk with you, or share a laugh with you, she’s still here. She’s still alive.
If you spend any amount of time with her, you’ll quickly realize she’s here…………. and like most living, breathing human beings, she craves touch. Hold her hand. I do. Yes, it’s hard, especially when she yells out; I hate watching my mother’s face contort in such a way that it looks like she’s in pain. I know she can’t be……… but maybe, she knows. Maybe she knows she’s trapped inside a body that won’t follow her commands.
It’s a muggy Sunday afternoon when I visit my mom……….. it’s just after noon and she’s eating (or rather drinking) her lunch. The caregiver asks if I want to spoon-feed her the rest of her liquified meat.
Next time someone talks to you about the preservation of human life, try thinking about the thing that really matters at the end of the day: quality of life. Or how about this: DIGNITY.
Midway through her meal of watery green goop and off-white, milky muck, she chokes and coughs. Brownish goo comes flying out of her mouth and splatters all over my green shirt.
I start to feel angry……. not at her, rather at those who have forgotten her. Her family and friends………….
My mother did so much for so many people………. When the church would call, she would pray, she would volunteer to give communion to the sick, she would give of herself. When her family called with a crisis, she would pray, she would provide the means for them to literally have a better life…………. And now, she’s alone.
No one asks for her, really…………… On her birthday, there were no calls, no e-mails. Nothing. It was another day for the rest of the world.
After lunch, I take her back to her room. Her fingernails are too long………. I ask the nurse for a pair of clippers and start trimming. It isn’t long before my back starts to ache and my abdomen cramps just a little………. I’m hunched over, just inches away from her hand. Fingernails fly up and flick my face.
Her toenails are another challenge. They’re twisted……. they overlap and are stiff from lack of use………
I need to remember to bring nail polish remover next time. The gold paint I swiped over her toenails last spring still remains……………… was it last spring; has it been that long? Am I the only person who paints her nails? UGH.
My body twists and contorts so I can find just the right angle to trim her thick toenails. Mom is sound asleep. Good. I think she’d be yelling if she where awake.
She inhabits a place somewhere between life and death.
It’s a grotesque place.
By the time I leave, I have a headache and my blood is boiling. I feel nothing but hate and resentment. I know I should let it go…………………. After all, what’s that saying? Something about hatred poisons and hurts me, not them?
I don’t care. Shut up. Stupid quote. Nonsense. This is unforgivable. Where’s a vengeful God when you need one? Fire. Brimstone. Come on!
After a few days of stewing, the anger eventually subsides……………. is it anger? Maybe it’s hurt. Resentment? Rage? Jealously? Contempt? All of the above. I try to cut myself some slack……………… yes, I wish I could be more serene about her illness………….. but then, I think back to those darker days, and the anger bubbles up again. STOP.
I wonder if there is a heaven………………or a hell. I wonder what God will decide.
Last summer, Frederick C. Hayes was admitted to the advanced-dementia unit at Jewish Home Lifecare, on West 106th Street. It was not an easy arrival. Hayes, a veteran of the Korean War, had been a trial lawyer for five decades. He was tall, and, though he was in his early eighties, he remained physically imposing, and he had a forceful disposition that had served him well in the courtroom. One of his closest friends liked to say that if things were peaceful Hayes would start a war, but in war he’d be the best friend you could have.
Hayes practiced law until 2010, when he went to the hospital for a knee operation. While there, he was given a diagnosis of Alzheimer’s disease. His combative tendencies had become markedly pronounced, and before arriving at Jewish Home he was shuttled among several institutions. Nobody could manage his behavior, even after Haldol, a powerful antipsychotic drug, was prescribed. In the advanced-dementia unit, he appeared to be in considerable discomfort, but when doctors there asked him to characterize his pain, on a scale of one to ten, he insisted that he was not in pain at all. Still, something was clearly wrong: he lashed out at the nurses’ aides, pushing them away and even kicking them. It took three aides to get him changed.
One day in September, a woman named Tena Alonzo stopped by Hayes’s room. Alonzo, the director of education and research at the Beatitudes Campus, a retirement community in Phoenix, Arizona, found Hayes lying in a hospital bed that had been lowered to within a foot of the floor, to lessen the risk that he would hurt himself by falling out of it. His face was contorted into a grimace, she later recalled, and he writhed and moaned. Alonzo, who is fifty-two, has spent the past twenty-eight years working with dementia patients—or, in her preferred locution, with people who have trouble thinking. She crouched next to the bed, and spoke in a quiet, intimate tone. “I’m here to help you—do you hurt anywhere?” she asked, moving her hand gently over his chest, his abdomen, his arms and legs. With each touch, she asked, “Do you hurt here?” When her hand reached his belly, the moaning ceased and Hayes spoke to her. “I hurt so bad,” he said. “I promise you, we are going to fix this,” Alonzo said, and he thanked her. . . .
Call me bitter, heck, even disgustingly angry; but when I saw this story on my Facebook news feed, then later listened to a report about the study on NPR’s Morning Edition, I rolled my eyes and thought, “Well, DUH!”
Caregivers are MORE than aware of the ridiculous costs associated with this dementia care — financially, emotionally and spiritually. And while a report like this helps to educate those whose pocketbooks are not yet being impacted by dementia, our elected officials (at every level) must vote to allocate funds to support research initiatives.
Unfortunately, thanks to our not-so-brilliant Representatives in Washington, who bicker like children and most certainly don’t deserve their lucrative pay, health insurance and pension, funding for research has been cut as a result of sequestration.
George Vradenburg, Chairman of USAgainstAlzheimer’s, said it best in a statement his organization issue last month: “From polio to cancer and from heart disease to HIV/AIDS, we have seen that a commitment to targeted research into high-cost diseases is a proven deficit reduction strategy.”
We need a cure. We need a way to delay or stop the onset of dementia. If we don’t come up with an effective treatment plan, dementia costs will bankrupt families.
In the meantime, if you did not know that dementia is a very costly disease, you should read the article below……………………. and maybe start saving your pennies now.
The most rigorous study to date of how much it costs to care for Americans with dementia found that the financial burden is at least as high as that of heart disease orcancer, and is probably higher. And both the costs and the number of people with dementia will more than double within 30 years, skyrocketing at a rate that rarely occurs with a chronic disease.
The research, led by an economist at the RAND Corporation, financed by the federal government, and published Wednesday in The New England Journal of Medicine, provides the most reliable basis yet for measuring the scale of the problem. Until now, the most-cited estimates of the condition’s cost and prevalence came from an advocacy group, the Alzheimer’s Association.
Although some figures from the new research are lower than the association’s projections, they are nonetheless staggering and carry new gravity because they come from an academic research effort. Behind the numbers is a sense that the country, facing the aging of the baby boom generation, is unprepared for the coming surge in the cost and cases of dementia.
“It’s going to swamp the system,” said Dr. Ronald C. Petersen, who is chairman of the advisory panel to the federal government’s recently created National Alzheimer’sPlan and was not involved in the RAND study.
If anything, Dr. Petersen said of the study’s numbers, “they’re being somewhat conservative.” Dr. Petersen, the director of the Alzheimer’s Disease Research Center at the Mayo Clinic, is part of another team collecting data on dementia costs.
The RAND results show that nearly 15 percent of people aged 71 or older, about 3.8 million people, have dementia. By 2040, the authors said, that number will balloon to 9.1 million people.
“I don’t know of any other disease predicting such a huge increase,” said Dr. Richard J. Hodes, director of the National Institute on Aging, which financed the study. “And as we have the baby boomer group maturing, there are going to be more older people with fewer children to be informal caregivers for them, which is going to intensify the problem even more.”
The study found that direct health care expenses for dementia, including nursing home care, were $109 billion in 2010. For heart disease, those costs totaled $102 billion; for cancer, $77 billion.
The study also quantified the value of the sizable amount of informal care for dementia, usually provided by family members at home. That number ranged from $50 billion to $106 billion, depending on whether economists valued it by the income a family member was giving up or by what a family would have paid for a professional caregiver.
Michael D. Hurd, the lead author and a principal senior researcher at RAND, said the team could find no research quantifying such informal care for heart disease and cancer. But he and other experts agree that given the intensive nature and constant monitoring required to care for people with dementia, informal costs are probably much higher than those for most other diseases.
Dr. Petersen said, “Clearly, dementia is going to outstrip those dramatically.”
Without a way to prevent, cure or effectively treat these conditions yet, the bulk of the costs — 75 to 84 percent, the study found — involves helping patients in nursing homes or at home manage the most basic activities of life as they become increasingly impaired cognitively and then physically.
“The long-term care costs associated with people with dementia are particularly high because of the nature of the disease,” said Donald Moulds, acting assistant secretary for planning and evaluation at the federal Department of Health and Human Services. “People eventually become incapable of caring for themselves, and then in the vast majority of cases, their loved ones become incapable of caring for them.”
Each case of dementia costs $41,000 to $56,000 a year, the study said. Researchers project that the total costs of dementia care will more than double by 2040, to a range of $379 billion to $511 billion, from $159 billion to $215 billion in 2010. Because the population will also increase, Dr. Hurd said, the burden of cost per capita will not grow quite as fast, but will still be nearly 80 percent more in 2040.
The study used information collected over almost a decade on nearly 11,000 people from a large database called the Health and Retirement Study, considered a gold standard among researchers on aging issues. All of the people followed were given detailed cognitive tests, while a subset of them were more intensely evaluated for dementia and their results used as benchmarks to rate cognitive decline for the others, Dr. Hurd said.
Dr. Hurd noted that in addition to the estimates of people with actual dementia, earlier analyses of the same data estimated that 22 percent of people aged 71 and older — about 5.4 million people — have mild cognitive impairment that does not reach the threshold for dementia. In the study, about 12 percent of those people developed dementia each year, meaning that they experienced problems with memory, concentration and daily functioning that were severe enough to meet the medical definition.
The number of dementia cases calculated in the RAND study is smaller than that from the Alzheimer’s Association, which used a different database and tended to count people in earlier stages of memory loss. The association estimates that five million people aged 65 and older have Alzheimer’s, the most common dementia.
The RAND cost estimates for current dementia care are similar to the Alzheimer’s Association’s, but the association’s future cost projections are significantly higher: $1.2 trillion in 2050.
Robert Egge, the association’s vice president for public policy, said his group’s cost projections are based on the assumption that “more and more people will be in severe stages of dementia” in the future because they will be older. He said his group welcomed the RAND study, especially its comparison of dementia to other serious illnesses. It shows that groups using different methodologies reached the same conclusion about the high costs of dementia care, he said.
Dr. Petersen, whose team at the Mayo Clinic will be analyzing costs using a third distinct data set, said he suspected that “the reality is somewhere in the middle” of the RAND numbers and the Alzheimer’s Association’s projections.
When it comes to dementia, Dr. Hurd said, his team’s study could not capture the full toll of the disease. “One thing we haven’t talked about, and it’s not in the paper, is the tremendous emotional cost,” he said. “Economists are coldhearted, but they’re not that coldhearted.”