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."
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.
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.
It was around 8pm last night when I started watching some of the videos I had taken of my mom. In the more recent ones, she is yelling — a lot. That’s all she can do. She can’t talk. I take these videos because, I feel like people don’t believe me when I say, ‘I think she’s in pain.’ And because past is prologue — I once had to show my video of her crying to the nurse at her home and the hospice team in order for them to give her morphine and up her Haldol — I take videos so I am always armed with evidence.
And they wonder why caregivers lose their minds…………………………
As I watched these videos of her yelling, her face twisted and anguished, I told my boyfriend who was watching these 30 second snippets with me, that someone in my support group said that mom probably has the mental awareness (she used a different term, I think) of a baby.
Haven’t you ever seen a baby cry?
No. I mean yes, but not really. And if I happen to be around someone with a baby (which is rare), I give them back as soon as they take that long inhale right before the wailing commences…… and then I walk away. The fact of the matter is, I never grew up with or around babies.
I’m certain, as a kid, all of my imaginary friends were successful professionals in their 30s.
So last night, as I watched mom yell…. I pulled up YouTube and typed, “crying babies.” I probably watched four or five videos of little sweet faces, completely twisting and turning beat red, as they cried…….. puffy lips quivering, eyes squinting, tears rolling down their tiny faces. Believe it or not, I could actually see a little bit of my mother in those faces. Her mouth turns upside down into a frown, her eyes squint and she’ll start yelling………………………. Sometimes a hug will calm her down; sometimes you have to let her yell it out. My mother can’t tell me what’s wrong, so you do what you would do with a baby — you do a mental checklist:
Is she wet?
Is she hungry?
Is she thirsty?
Is she comfortable?
Is the music too loud?
Is she cold?
I always joke that if I have a baby — barring any health issues — it’s going to be a walk in the park. A total breeze. After all, you can pick them up to comfort them, You can take them with you in one of those neat backpack thingies, you can arrange them yourself so you know they’re comfortable, their poop is much more manageable (even cute?), diapers are much easier to get on and off, bathing is a no-brainer and, and up until a certain age, you’re stronger than they are, and best of all, they eventually learn to tell you what they need, and maybe, they’ll even make you laugh……………….. and that’s what makes it all worth it.
Or at least that’s what I think. I have three cats and a dog.
There are very few joys attached to reverse parenting. You have to work very hard to find the funny. You also have to mentally force yourself to view your circumstances differently (or die trying, because this disease will kill you, too): This is a choice, this is a priviledge to help my loved on on this horrible journey, I get to do this, I get to play this role in my parent’s life. This will pass.
It’s also a very lonely experience. Unlike parenting a newborn, very few people come out to celebrate your achievements — hey, I heard your mom didn’t spit in church today! That’s AWESOME! Here are some flowers — in fact, I feel like as each day turns into the next, seasons change, birthdays come and go, babies are born, babies learn how to walk and talk, you’re mostly forgotten about. People move on. That’s life. That’s the point of life.
We’re not meant to live in some damned and demented limbo-land.
As I write this blog, I’m trolling Twitter. Just seeing what’s out there in the way of caregiver support, resources, news, etc, etc, etc. Turns out, there’s a lot shaking in our world. A quick scroll on my feed shows Tweets about everything from incontinence and nursing homes to tips on how to be an organized caregiver (“organized” and “caregiver:” two words that don’t really go together). Lots of information. Some of it useful; most of it scary.
(No, you don’t and won’t have enough money to grow old).
While you’ll absolutely find information about caregiving or being a caregiver, much of what’s out there is geared towards Baby Boomers… because let’s face it, Baby Boomers are a hot commodity right now.
Why? They’re rich and they’re going to get sick.
As for the under 40 set, well, we’re sort of preoccupied with paying off our student loans, buying our first home (or drowning in it, as the case may be), finding our dream job, finding Mr. or Ms. Right, making babies, having babies and/or getting divorced.
You know what else we’re doing? We’re NOT saving. Saving for the day we develop a long term illness like dementia.
That said, we’re about as undesirable as they come. And you should be pissed off about that. After all, we’re not safe from Alzheimer’s disease or other dementias… there are no cures, no means of prevention. NADA.
Still not convinced? Just Google, “Alzheimer’s and 2050.”
This is the quiet before the Tsunami.
Here are a few things you should know:
Alzheimer’s disease is just one of several types of dementias (my mom has frontotemporal dementia).
Medicare will NOT pay for nursing home/assisted living care.
You can’t afford to grow old. According to Genworth’s 2012 Cost of Care Survey, which I found in an online article on Next Avenue,“one year of long-term care ranges from $39,600 for an assisted living facility to $81,030 for a private room in a nursing home.” (source: Next Avenue; Genworth)
Alzheimer’s disease is the sixth-leading cause of death in the U.S. and the only cause of death among the top 10 in the United States that cannot be prevented, cured or even slowed. (source: 2012 Alzheimer’s Association, Facts & Figures report)
Have you ever changed an adult’s diaper? More than 15 million Americans provide unpaid care valued at $210 billion for persons with Alzheimer’s and other dementias. (source: 2012 Alzheimer’s Association, Facts & Figures report)
In 2012, the direct costs of caring for those with Alzheimer’s or other dementias to American society will total an estimated $200 billion, including $140 billion in costs to Medicare and Medicaid. Unless something is done, the care costs of Alzheimer’s and other dementias will soar from $200 billion to a projected $1.1 trillion (in today’s dollars) by 2050. (source: 2012 Alzheimer’s Association, Facts & Figures report)
Here’s the myth: Alzheimer’s disease and other dementias are diseases old people get. Here’s the truth: People in their 30s, 40s and 50s are developing dementia. Here’s the other truth: This disease will touch your life one day, if it hasn’t already.
When I walked into the front door of my mother’s home, a little over two weeks had past since my last visit. Because of the influenza epidemic that turned Arizona bright red on the “flu view” map of the U.S., the home issued an edict banning practically all visits until it subsided. They told me that if I was healthy, I could check in on her as long as I wore a mask and doused my hands in sanitizer……………………………. I think they felt sorry for me. I sounded completely lost when they called to say no visitors: “Oh. How long? Really? I, mean, I’m fine. Can’t I just check in on her once in a while? I just worry.”
Unfortunately, my own immune system was obliterated not 24 hours after the ban was put in place.
This time, I was too sick to get out of bed. Too sick to get in my car. Too sick to feign good health just so I could see her. I really missed my mom. I felt empty. Alone, really. Even though my mother can’t talk to me, her presence, while it makes me sad on the one hand, also gives me comfort. Of course, in some ways, this is what it’ll be like when she’s actually gone, and if this is a sign of things to come, it won’t be the relief I’m so desperately seeking.
Life without stressing over her wellbeing, her care, getting kicked out, her flooded diapers, if she’s in pain, Medicaid, finances………………………….
I feel physically, emotionally and mentally sick. I am physically, emotionally and mentally sick. Who am I kidding? Sure, this might be the flu, but it’s also years of fighting the disease that has consumed both my mother and my father.
I don’t expect either parent to be alive when I turn 40. That’s four years from now.
A reverse empty nest.
Last Monday, despite the ban, I decided to visit my mom. They said I could. I walked in expecting to be turned away. The thing is, I was really worried about her finger nails. What if they cut her nails too short or what if they didn’t cut them at all and she snagged her nail on something? What if she has a painful hang-nail? I brought my clippers.
I am perpetually drowning in the minutiae.
“Hey Patty, I know there’s the ban, but can I please see my mom? I’m not sick anymore.”
“Hi Kathy, Sure. How are you feeling?”
“I’m OK. I just miss my mom is all.”
“I know. I would feel the same way. I’ll give you a mask; just be sure to use the hand sanitizer.”
“Should I leave my bag here?”
“I don’t think that’s necessary.”
My mom’s asleep. Her head is hanging to the right like a rag doll. I take a black sweatshirt, fold it up and tuck it beneath her neck. The room is warm and her radio is playing NPR. Aside from her crooked neck, she looks comfortable. I place my bag on the console nearby and plop down on the arm of her beige pleather chair. She finally wakes up, turns her head and stares at me. I smile. Of course, she can’t see my smile… I’m wearing a blue surgical mask that sits awkwardly on my nose. I squeeze the metal band on the nose in hopes of it fitting a little better (don’t these things come in small?)……………. UGH, now my glasses are fogging up. I consider taking the mask off… just so she can see who I am. What if she forgot who I am? It’s been over two weeks? I decide against removing the mask. Instead, I take her hand and hold it. She can’t really hold my hand; her brain isn’t firing off a signal that would tell her fingers to wrap around my hand.
A few seconds pass and she starts yelling.
“It’s me! Your daughter! I love you.” She’s either horrified by my presence or saying hello.
Hard to tell.
Mom’s roommate is in the room. I’ll call her Margie, though that’s not her real name.
“Hey Margie, how are you? Have you been taking care of my mom?”
I don’t want to stay too long, it’s already 9:00 a.m. and I’m late for work. I rub mom’s head until she falls asleep again……………………………. I look at Margie and ask her to take care of my mom.
She obliges, of course.
I walk outside, talk with some of the caregivers, get in my car and drive to the office.
I stumbled upon Susan Spencer-Wendel’s soon-to-be released book, Until I Say Good-Bye: My Year of Living with Joyearly this morning. I haven’t read it yet. It doesn’t come out until next March. Still, I wanted to share because I think we’re going to be hearing a lot more about Spencer-Wendel and her tremendously touching memoir in the coming months.
Spencer-Wendel is a wife, a friend, a daughter, a mother of three and a former journalist living with amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease. Her book is about last moments.
ALS is terminal and Spencer-Wendel is rapidly declining.
She created a bucket list and proceeded to cross off items from her list. Spencer-Wendel took several remarkable trips to the Yukon, to Budapest and to Cypress; and she created precious moments for her family to cherish when she’s gone………….. like when she took her 14-year-old daughter to New York City to shop for her future wedding dress.
She writes, “As my beautiful daughter walks out of the dressing room in white silk, I will see her ten years in the future, in the back room right before her wedding, giddy and crying, overwhelmed by a moment I will never share. . . . When my only daughter thinks of me on her wedding day, as I hope she will, I want her to think of my smile when I say to her at Kleinfeld’s, ‘You are my beautiful.’”
By the time the publishing company Harper Collins caught wind of Spencer-Wendel and offered her a book deal, she had lost the use of most of her fingers as a result of the disease.
She wrote the book anyway.
Spencer-Wendel literally typed out her memoir using her right thumb on an iPhone.
She finished her book in just three months.
HarperCollins describes her story as “a powerfully emotional, inspirational and irrepressibly joyous look at the things that matter most… Until I Say Goodbye is the fulfillment of her final wish: ‘To make people laugh and cry and hug their children and joke with their friends and dwell in how wonderful it is to be alive.’”