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.
It was 7:30p.m. last Thursday when I called my mom’s doctor. “I think she’s dying,” she said. I was sort of stunned. I’ve been waiting to hear these words for a very long time. I don’t remember exactly what came out of my mouth. At that point, my mom hadn’t eaten for three days. She had a fever, too. The doctor didn’t know exactly what was wrong. She thought it was something viral, a stomach bug. A few days before, she was vomiting and had diarrhea. I told her that I didn’t want to treat for anything. I just wanted her to be comfortable as possible. Random feelings started bubbling up… guilt (who prays to receive such a phone call?), relief (finally, this has gone on long enough), sadness (my mother is dying) and more guilt (did I do enough?). And then, I felt fear. Fear that she would rebound. That this was just another false alarm. My mother has been close to the brink before, only to come back. She’s like the Terminator.
I spent most of yesterday with my mother. She was so weak, frail. But her skin was soft and smooth. I kept rubbing her her forearm. I don’t think I’ve ever felt skin so soft. I held her hand. I told her it was ok to go. That things here would be fine. I prayed the Our Father in Spanish (I cheated and used my phone. I had forgotten the words). I showed her videos of her granddaughter. Throughout the day I gave her water using a dropper. I left when she fell asleep. Ativan is good like that.
When it comes to parenthood, there are moments that stick out. Moments where you think, “OK, I need to mentally bookmark this blip in time because it’s special.” I have those moments from time to time with my daughter. I also have other moments … moments where I think, “Huh, I’ve done this before.” Like the ti
me I fed my daughter solid food for the first (and second and third and fourth) time. It reminded me of the many times I sat and spoon-fed my own mother. On the one hand, the idea makes me sad; on the other hand, from a practical standpoint, I know that I need to carve out some time — regardless if I’m feeding my mom or my child.
That moment was one of a handful of other “moments” that I’ve experienced over the past six months. Yes, it’s are different. There’s certainly much more joy attached to the act of feeding my baby. And I must say, dealing with poop is a real pleasure when the pooper is a tiny bundle and not a full-grown woman who, at one time, was very stubborn and rather difficult due to her behaviors … a very common thing among folks with frontotemporal dementia (FTD)
Still, it’s a little surreal.
My mom’s dementia is a little bit like that movie, The Curious Case of Benjamin Button. Over the years, she’s regressed, considerably, from adult, to teen, to child, to (very difficult) toddler to infant. Today, she can’t walk; she can’t talk, and, right now, her food looks like the same pureed mush my daughter eats. Only fancier. In some ways, the two are like ships passing in the night…………. developmentally………… they’re both in diapers, they both eat the same type of food, they’re both non-verbal and both require full-time care.
But then, that’s what this disease does, it robs you and your family of possibility. And sometimes it robs you of hope.
A baby, on the other hand, gives you hope; in a child there’s possibility. There’s a future.
For me, there will always be moments, especially, when there are challenges….. like when my baby is a toddler and decides to create a scene. In public. I’ve been there with my mom…… same-same, but different.
I’m not sure if any of this makes me sad or if I’m sort of numb to it all. I think after a while, one becomes very good at detachment. It’s a survival thing. Detachment from emotions that might otherwise leave you in a depressed state for the rest of your life is probably a very healthy skill to develop when caring for someone with frontotemporal dementia or Alzheimer’s disease…
They’re there, but not really.
They’re alive, but they just stare.
They take and take and take, and, yet, give absolutely nothing back.
At least, with my daughter, while she takes, she also gives. That’s a wonderful thing. Because when life steals from you, to have a little person come into your world and fill your heart, well, that’s kind of a miracle.
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.
Family Caregiver Award Winner – Kathy Ritchie (Primary Caregiver for her mother, a resident of Beatitudes Campus, Phoenix, AZ)The Exceptional Friend or Family Caregiver Award recognizes an individual who has demonstrated outstanding compassion and abilities in one-on-one caregiving for a friend or family member living with dementia.
Unfortunately, I was unable to attend the event in person, but I am tremendously honored to be recognized by Leading Age and the Beatitudes Campus. I am hunting down the video and will post to the blog as soon as I can.
In the meantime, here is my acceptance speech:
This award is a tremendous honor, and I’m incredibly humbled to be on this stage tonight. What I did for my mother, I did, because, at the end of the day, my actions had to sit well with my soul. Simple as that. And that’s why I left one life and started another when I moved home to Arizona in 2009. My mother needed an advocate, and I was determined to do everything in my power to see that she received the best care possible. It certainly wasn’t an easy road, and to this day, I live with the woulda’s, the shoulda’s and the coulda’s… as most caregivers can surely attest, the “what if’s” can keep you up at night! Unfortunately her dementia was unforgiving — my mother spent time at two psychiatric facilities where she was given psychotropic drugs to curb her behaviors, which were the result of her type of dementia; we were asked to leave three assisted living facilities and one adult day care center; and we’ve endured rejections from assisted living facilities… her behaviors meant she wasn’t a good fit.
The thing is, my story is not unique. There are so many families struggling to cope with their loved one’s dementia, and so many of those families lack the financial, emotional and even physical resources needed to adequately care for them. This is the quiet before the tsunami. The number of Americans who develop Alzheimer’s disease is expected to increase significantly — and that’s just one type of dementia. Right now, there is no cure, no way to prevent or slow the onset of Alzheimer’s disease or any other dementia, for that matter. That’s why I put our story out there. I want the world to wake up and realize we need help; we need a cure.
Over three-thousand days have passed since I noticed something was wrong with my mother. Today, she’s nearing the end of this heartbreaking journey. And while there is a very big part of me that wants to close this chapter for good, I can’t. I have a 2 month old daughter and I am determined to continue to be a part of the solution. I hope you’ll join me to raise awareness and to serve as an advocate for those who need it most.
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.