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."
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?
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.
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.
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.
When my mom first was showing signs of dementia I was adamant that “something must be done” as I got married, started a new career, and quickly had two small children. Naturally, what I did was try to convince my mother to move into town, stop driving her car, and consider visiting a neurologist. My older brother, who lived much closer than my 1,500 plus miles, shrugged like it was no big deal. I should mention that both of us were still in our 30s, one of us (ahem, me) quite at the low end.
Fast-forward almost seven years and now my mother had moved in with my brother, only to move out and into assisted living in the same city where he resides. Not even in the same state where she lived prior to this upheaval, but very close and much more similar culturally, weather-wise, and a million other ways than my own state of California. Much. As my older brother goes through a divorce (no children) and continues on his path of creating, working, and great success, he has grown incredibly frustrated with the burden of caring for a parent with a very rare form of Alzheimer’s. While her facility does do a lot, she has always felt that family should do most of the caretaking and is constantly reaching out to my brother for help. For my part, I visit four times a year to help relieve the burden, and call often. In fact, my brother will tell me when he has a weekend he needs to focus and I’ll check in multiple times to make sure she does not disturb him. Still, it’s not even close to the job my brother has taken on at an early age.
Of course there is guilt. But there is also a determination to protect my own young family and fully commit to those other three people in my home. A gift I never received growing up. But at this point, when my brother gets irritated by every single small thing, I know he is done. Even if she were willing (which she told me once she was not, but hey, she has dementia), I cannot figure out if it’s a good idea to uproot my mother and move her closer to me and to her only grandchildren. My impulse is to do it so I can give her what my brother no longer can. At the same time, if I add caretaking my mother to my already overflowing plate, I worry so much about my children and my husband and my ability to care for them. Also, let’s be honest, I worry about my sanity.
What do I do? And how do I balance what’s best for me, with what’s best for my family living in my own home, and what’s best for the woman who raised me and gave me everything she had available? I mean, really.
Thank you for any insight.
Watching My Mom Forget Who She Is
Dear Watching My Mom Forget,
This is really sad and this is hard. I suggest you take what is the most manageable and equitable course. If that means moving your mother then move her. There is no perfect solution. So choose the one that is most workable and practical and fair.
This is unlike any other life challenge you have faced. If you are a competent and successful person then you are used to challenges for which there are solutions, in which victory is possible. This is different. There may be victorious moments but its nature is not the nature of a fair battle that might go either way, or a difficult problem that will eventually yield to intense study. This is decline.
Since you are in your 30s, you are attuned to the making of a family, the creating of new life, the upside of things. This is the downside, the ugly, untended, shady back of the hill where no one wants to live, where the sun doesn’t shine and nothing grows and you get an eerie feeling that makes you want to leave. That’s what it’ll be like sometimes if your experience is anything like mine. You love your mother and you want to do the right thing but no amount of preparation can remove the grim strangeness of it, and no matter how perfectly you execute your plan the result is not victory but loss.
You will get through it and there will be some moments of satisfaction and you may at times take some pleasure in seeing what great depths of resilience you have. But even that is a different kind of pleasure. It’s not a joyful look-at-me pleasure. It’s a quiet, well-I-got-through-that pleasure.
And you will get through it. I feel confident of that. You will be taxed to your limit and at times you may feel you are failing but you will get through this and in so doing you will confront certain limits that are not circumstantial and practical but something else, something psychological and spiritual.
Luckily there are resources to call upon and people to ask for help, wonderful people who’ve dedicated their lives to dealing with what happens when people begin to fall apart. You may have some wonderful experiences with them; you may even fall in love with a few, in the way that we fall in love with strangers who rescue us.
It’s going to be tough on you and your family, and all the while, the real drama will be hers: the subjective experience of memory falling away like a house coming to pieces around her. But you will get through it.
On the way to visit my mother one recent rainy afternoon, I stopped in, after quite some constant prodding, to see my insurance salesman. He was pressing his efforts to sell me a long-term-care policy with a pitch about how much I’d save if I bought it now, before the rates were set to precipitously rise. For $5,000 per year, I’d receive, when I needed it, a daily sum to cover my future nursing costs. With an annual inflation adjustment of 5 percent, I could get in my dotage (or the people caring for me would get) as much as $900 a day. My mother carries such a policy, and it pays, in 2012 dollars, $180 a day—a fair idea of where heath-care costs are going.
I am, as my insurance man pointed out, a “sweet spot” candidate. Not only do I have the cash (though not enough to self-finance my decline) but a realistic view: Like so many people in our fifties—in my experience almost everybody—I have a parent in an advanced stage of terminal breakdown.
It’s what my peers talk about: our parents’ horror show. From the outside—at the office, restaurants, cocktail parties—we all seem perfectly secure and substantial. But in a room somewhere, hidden from view, we occupy this other, unimaginable life.
I didn’t need to be schooled in the realities of long-term care: The costs for my mother, who is 86 and who, for the past eighteen months, has not been able to walk, talk, or to address her most minimal needs and, to boot, is absent a short-term memory, come in at about $17,000 a month. And while her LTC insurance hardly covers all of that, I’m certainly grateful she had the foresight to carry such a policy. (Although John Hancock, the carrier, has never paid on time, and all payments involve hours of being on hold with its invariably unhelpful help-line operators—and please fax them, don’t e-mail.) My three children deserve as much.
And yet, on the verge of writing the check (that is, the first LTC check), I backed up.
We make certain assumptions about the necessity of care. It’s an individual and, depending on where you stand in the great health-care debate, a national responsibility. It is what’s demanded of us, this extraordinary effort. For my mother, my siblings and I do what we are supposed to do. My children, I don’t doubt, will do the same.
And yet, I will tell you, what I feel most intensely when I sit by my mother’s bed is a crushing sense of guilt for keeping her alive. Who can accept such suffering—who can so conscientiously facilitate it?
“Why do we want to cure cancer? Why do we want everybody to stop smoking? For this?” wailed a friend of mine with two long-ailing and yet tenacious in-laws.
In 1990, there were slightly more than 3 million Americans over the age of 85. Now there are almost 6 million. By 2050 there will be 19 million—approaching 5 percent of the population. There are various ways to look at this. If you are responsible for governmental budgets, it’s a knotty policy issue. If you are in marketing, it suggests new opportunities (and not just Depends). If you are my age, it seems amazingly optimistic. Age is one of the great modern adventures, a technological marvel—we’re given several more youthful-ish decades if we take care of ourselves. Almost nobody, at least openly, sees this for its ultimate, dismaying, unintended consequence: By promoting longevity and technologically inhibiting death, we have created a new biological status held by an ever-growing part of the nation, a no-exit state that persists longer and longer, one that is nearly as remote from life as death, but which, unlike death, requires vast service, indentured servitude really, and resources.
This is not anomalous; this is the norm.
The traditional exits, of a sudden heart attack, of dying in one’s sleep, of unreasonably dropping dead in the street, of even a terminal illness, are now exotic ways of going. The longer you live the longer it will take to die. The better you have lived the worse you may die. The healthier you are—through careful diet, diligent exercise, and attentive medical scrutiny—the harder it is to die. Part of the advance in life expectancy is that we have technologically inhibited the ultimate event. We have fought natural causes to almost a draw. If you eliminate smokers, drinkers, other substance abusers, the obese, and the fatally ill, you are left with a rapidly growing demographic segment peculiarly resistant to death’s appointment—though far, far, far from healthy.
Sometimes we comb my mother’s hair in silly dos, or photograph her in funny hats—a gallows but helpful humor: Contrary to the comedian’s maxim, comedy is easy, dying hard. Better plan on two years minimum, my insurance agent says, of this stub period of life—and possibly much more.
Mike Wallace, that indefatigable network newsman, died last month in a burst of stories about his accomplishments and character. I focused, though, on a lesser element in the Times’ obituary, that traditional wave-away line: “He had been ill for several years.”
“What does that mean?” I tweeted the young reporter whose byline was on the obit. Someone else responded that it meant Wallace was old. Duh! But then I was pointed to a Washington Post story mentioning dementia. The Times shortly provided an update: Wallace had had bypass surgery four years ago and had been at a facility in Connecticut ever since.
This is not just a drawn-out, stoic, and heroic long good-bye. This is human carnage. Seventy percent of those older than 80 have a chronic disability, according to one study; 53 percent in this group have at least one severe disability; and 36 percent have moderate to severe cognitive impairments; you definitely don’t want to know what’s considered to be a moderate impairment.
From a young and healthy perspective, we tend to look at dementia as merely Alzheimer’s—a cancerlike bullet, an unfortunate genetic fate, which, with luck, we’ll avoid. In fact, Alzheimer’s is just one form—not, as it happens, my mother’s—of the ever-more-encompassing conditions of cognitive collapse that are the partners and the price of longevity.
There are now more than 5 million demented Americans. By 2050, upward of 15 million of us will have lost our minds.
Speaking of price: This year, the costs of dementia care will be $200 billion. By 2050, $1 trillion.
Make no mistake, the purpose of long-term-care insurance is to help finance some of the greatest misery and suffering human beings have yet devised.
I hesitate to give my mother a personality here. It is the argument I have with myself everyday—she is not who she was; do not force her to endure because of what she once was. Do not sentimentalize. And yet … that’s the bind: She remains my mother.
The running joke about me is that I see the glass as half empty………… The reason I choose to view most every situation from this angle is to avoid disappointment. It’s a method that’s served me well………….. especially when it comes to my family.
Of course, I would never describe myself as a pessimist. That’s just tragic.
I’m more of a realistic. Because the reality is…………………………
My mom is currently being “stabilized” with psychotropic drugs. After we were told that she had to leave her home, I begged my dream nursing home to consider accepting her…. they had a reputation for taking tough cases………if you’ve read this blog, you know my mother is challenging………………. dream nursing home decided to send out a nurse to further their evaluation. I was feeling optimistic. I thought, maybe this is an early birthday present……………………. Not five minutes after meeting my mother, the nurse told me that she needed to be in a lock down facility where she could be stabilized……… and they only way to get her to said facility would be to call 911.
Ten hours after 911 pulled up and carted my mom away, we found a bed at a unit that works to “stabilize” people like my mom. That’s the thing with difficult dementia patients……….. most nursing homes won’t accept them if they are yellers (it disrupts other residents), combative (apparently, not an attractive quality) or aggressive (no one appreciates a black eye). My mother is a yeller. And she is quote-unquote combative. Not my word……………. and sorry, if a stranger were wiping your ass, I think you’d behave “combatively,” ………… as for the aggression part, well, it wasn’t her. Unfortunately, yelling has unintended consequences……………… like pissing off other dementia patients — a resident at the last home wanted to punch her to shut her up………… sigh.
Now here we are, waiting for her to “stabilize.”
And then we look for a permanent facility.
The more challenging dementia cases, usually end up at places that can deal with behaviors…………….. Unfortunately, there are very few “behavioral” facilities, and the ones that have a good reputation also have no beds. We are currently on a waiting list for one……………………
Think about that for a moment. My mom is on a waiting list for a bed at a facility that has limited space………… So, in order for a bed to open up, one of three things has to happen:
1. Someone has to be cured of dementia.
2. Someone has to be transfered to another facility.
3. Someone has to die.
We are waiting for someone to die. Preferably a female.
Glass nearly empty.
That’s our reality.
Dementia is a grotesque disease. And when you peel back every grotesque layer, what’s left is a putrid, rotten pit……………. or, reality.
The reality is, I have very few choices.
The reality is, there is very little-to-nothing I can do.
The reality is, I cannot save my mom.
The reality is, I have done everything I can do.
The reality is, I have to let her go.
The reality is, I have lost.
The reality is, I am accepting all of the above.**
** Somedays, reality is a tougher pill to swallow than others.
Nothing has ever been easy about this disease, her disease………………. the price we’ve paid as a family, well, there’s no coming back from it. In many ways, I’ve lost both parents………….. one to the disease; the other to her disease. Her disease has made us more grotesque…………………. her demise is a staggering loss, heartbreaking, devastating. When I sit back and think about what the disease has done, where it has taken us, how its nefarious tentacles has slowly suffocated us……………….it’s still suffocating us……………. it’s a curious thing how something can infiltrate and devastate the family unit to the point where there is no point, no coming back.
No happy ending.
Grieving for the living is a strange thing……………… Closure comes in the form of accepting what is…………….. I think.
I’ve been hearing a lot of adult diaper jokes lately………………… I don’t know if that’s just how the universe works because the universe, in all of its infinite wisdom, is actually a really big dick……………………………. or I just happen to be more in tune with adult diapers since I buy them often.
I don’t find adult diaper jokes very funny…………………… when they do come up, I fake-laugh and hope the subject is changed. Promptly………………… Look, I try to have a good sense of humor about my mom and her disease (my new joke is that trying to get her this really good nursing home is like trying to get a kid into private school……………….. OK, it’s funnier when I say it and you see my face), but adult diapers, well, let’s face it, of all of the humiliations we humans have to endure as we get older, sitting in a mushy pile of your own caca, waiting for a stranger to change you is surely at the top of the list.
Alas, most people don’t really think the adult diaper thing through…………. for some weird reason, they associate adult diapers with pee — just PEE………………….. because somehow you’ll be able to get yourself to the toilet to poop??????
The other night, we were at a favorite restaurant having a bite to eat and a glass of vino………………………………. the owner of the restaurant (we’re chums) came by the bar to say hello……………………. the conversation (I had NOTHING to do with this) turned to aging, retirement, getting older and, naturally, adult diapers (the universe laughs)………………….. the owner said that he’s already told his family that he doesn’t want to go to a nursing home and that he wants his family to change him if it ever gets to that point where he develops, you know, The Alzheimer’s, and has to wear adult diapers………………………….. he doesn’t want complete strangers cleaning up his mess………………………….that should he ever become difficult, he’d be OK with his family smacking him and putting him in a corner………………………………
Jon turned to look at me.
I think he wants to make sure I’m not twitching……………. or seething with rage.
Think Pulp Fiction.
“Bitch, be cool.”
I didn’t want to tell him that my mom was being cared for by strangers. That my mom is in adult diapers and it’s not easy to change out your own parent’s poopy diapers. That you can’t just slap your parent when they act out…………… that most dementia patients don’t just sit there quietly (I wish!)………….. that most families, after a point, cannot take care of their loved one………………….. that asking your daughters and wife to do this for you is like asking them to take give up a limb…………………. that your daughters that you worked so hard for will have to make huge sacrifices to care for you and your poopy diapers…………………………..
Getting old is a scary prospect. I think about it a lot. I think about how I’m going to pay for my own care and I’m 34. The majority of us avoid the topic all together, or we simply hope our kids will be there to pick up the dirty work of caregiving…………………….. clearly. I don’t have kids. And if I did, I wouldn’t bank on having kids who would step in and make certain sacrifices on my behalf…………. nor would I want my child to change out my diaper…………………… I often wonder if I would be able to do it……………………. to call it a day if I knew that my days were only going to get worse. I can’t help but wonder if there is a God that would punish me by turning me into a roach in my next life………………. or condemn me to an eternity in Hell…………my good deeds on Earth erased because I boldly ended my own life so I would not have to suffer a fate like my mother’s.
We left the restaurant and I didn’t say a word. I think I was too cold to care. “Turn up the heat, it’s freezing!” I let that entire conversation slide off my back.
Do I think that man is selfish. Yes. Do I like his white beans and escarole? Yes.
That’s life. People make adult diaper jokes and they don’t think about what it means to wear an adult diaper………………… but then again, if we all fretted about our destinies, what would be the point of life?
I can’t help but fret. For the last 7 years, her disease has been my life. I can’t help but think about my own future, my fate…………….. is it hereditary? Will I get this too?
My grandpa passed away over a week ago. This, following everything with my mom…………………….. he was 94. We knew his life was coming to an end, but to have it happen so soon after we placed my mom, and in a way lost my mom…………………. I know my mom is in a much better environment, a place where she can be properly taken care of by people who are trained to deal with people like her………………… people who don’t wretch when they smell poop; timing-wise, well, her placement was a blessing because my father and I could attend grandpa’s (his dad’s) memorial service in Minnesota.
There’s no way we could both go and say goodbye if she were still at home……………..
It’s this kind of outcome or timing in life that makes me wonder if there is a God, because clearly he tossed me a most-fucked-up bone, but a bone none-the-less.
Still, the last few weeks have left me feeling, I don’t know, quiet.
And sometimes stingingly agitated.
There’s a part of me that’s incredibly paranoid about what’s next — what could possibly happen next? Will it be me? Will something happen to me? I worry about my health.
But then, I try to calm my mind. To breathe, which is actually a very difficult task.
What transpired over the past few weeks is simply a part of life………………… my life. And everything with my mom has led me to this point where I should be able to cope with her placement. To walk away when she screams, DESPIERTA AMERICA! because she wants to follow me out the door.
The thing is, something is troubling me and I can’t put my finger on it……………. there’s something off, something that leaves me feeling disconcerted.
My emotional compass feels out of whack.
I try to remind myself that the life I live is better than lives led by 90% of the people on this planet. It’s a unfair comparison to make, because I will always lose — someone is suffering more than I could ever imagine, but still………………….. humans can cope and deal with a lot. That’s how we were designed.
At least that’s what I think.
Perhaps we can ingest a lot of shit, but sometimes it takes a while to digest it…………..
I guess that’s where I’m at.
Digesting everything that has transpired over the last few weeks………………
But ask anyone else and they would disagree with me. Oh my God! You look exactly like her, they say…. I’ve tried, but I have never seen my mother in the mirror……………….. And I have many mirrors. Truthfully, I’ve always fancied myself my father’s daughter……………… both in appearance and overall disposition. However, in recent years, I’ve come to the conclusion that as far as disposition is concerned, I am neither parent.
I march to the beat of my own drummer………….. my temper is neither his nor his, maybe a blend of the two…………….. My coping mechanisms are much different. My approach to problems, vastly different. My view of the world…………….. different.
My sense of humor is neither his nor his……………. In fact, as sad is this may sound, I don’t recall either parent ever making me laugh out loud. I don’t remember much joking going on at all in our house. That might explain why I overcompensate in the humor department………………. I like to laugh, and I have a pretty loud laugh.
Just ask anyone who knows me.
Physically, I always thought I was my father. Big lips, brown hair……………….. wide feet.
It actually bothers me when people remind me that I look like my mom. I have no idea why, I almost find it irksome………….. I don’t look like her, I think to myself when people make the comparison…………… I can’t really explain where this contempt stems from, except to say that I’ve sort of always viewed my mother as weak. Fragile. Never one to take risks or follow her heart. Never one to pursue her dreams. She is dying now and I know that she never accomplished one of her goals……………………… She would always say, “I should have gotten my degree, so I could teach Spanish…” or “If I had started working on my degree when we lived in Iowa, I’d be done with it by now…” My mom had earned her college degree……………….. in Ecuador. She needed to take more classes in order to teach here in the U.S. She never realized that dream. I suppose there was always something…………………. isn’t that how life operates? There’s always something to keep you from doing what you want to do……………………. Instead of going to college, she taught privately at night to school teachers here in Phoenix who needed to learn Spanish and worked as a school secretary. I don’t think she was especially happy about her lot — she always seemed anxious or nervous; she was a hypochondriac. There was always something when it came to her health…………. maybe she knew all along that something was wrong……………….. nobody would have figured out, not until she was too far along to do anything (if anything were an option) about it.
I don’t know what my mother was like before she met my dad……………………. I have a photograph of her from when she lived in Louisiana (was she this world traveller? Is that where my itch to see the world came from?) and on the back she had written a note professing her love………………….. to another man. After living in Louisiana, she moved to New York City (like mother, like daughter I suppose) where she worked as a secretary. I have no idea why she went to Gotham………… all I know is that she lived in Corona………… a neighborhood in Queens that is still popular with the Ecuadorians. Someone in Corona probably knew my mother……………. what she was like, what she aspired to do and be………………….. my mother’s past is shrouded in mystery. I don’t even think my own dad knows that much about it……………………
I suppose it is because I don’t know her………… I don’t see the resemblance. We’ve always been different she and I…………… I often wondered if she thought she had done something wrong in raising me………………… why is she like that?
I’m feeling lonely again. I hate this feeling. It’s a feeling usually mixed with sadness and hurt. Potent combo. Can leave you in a funk for days….
A little context………………… my dad and I are once again talking about nursing homes…. mom is just getting to that point where caregiving is difficult. She’s having more accidents and she’s had a few other truly demented moments…… trying to eat raw chicken, wiping herself with a maxi pad wrapper (that was Sunday’s WTF moment — she took the wrapper out from the tampon bin)….. we do our best, but the woman needs constant, 24/h care.
I was mid-pee when she walked into the stall, peed and wiped with a maxi pad wrapper……….. so much for wait for me.
In the middle of my search, my cousin sent me an e-mail… nothing to do with my mom; I sent her an IM with my response…. we started chatting. The topic of my cousin, the one who was upset at the name of my blog (among other things) came up…… I started to feel those feelings again…. just hurt, resentment, frustration and anger….. the usual suspects. I recently sent her an e-mail congratulating her on some news and we e-mailed back and forth for a bit…. nothing more….. yes, this could be called progress, but I think it’s unlikely. I know that our relationship will likely never be repaired, something about the whole ordeal bothers me….. it’s like this itch. This annoying itch that’s turning into an oozing sore.
And then the stories pop into my head.
A little background………………. my cousin and her brother scolded me publicly on Facebook in front of other friends and family (I had posted pictures of my mom and titled the album, “My Demented Mom”)… Take that down. This is not a joke, wrote my cousin
Really? I thought this whole situation was rather comical……..
Thank you, wrote his sister.
I retorted, calling her passive aggressive……………… the retorts escalated and went back and forth from there………….. At the end of the day, things could have been handled better by both sides……. still, I can’t shake that virtual dialogue.
I suppose because I wonder what my mother’s family thinks of me………………… My Demented Mom is lost in translation……………. despite translations.
Or, maybe what’s really getting my panties in a severe twist is this…………….. do they care about me as much as they care about my cousins?
Would they, or do they, defend me?
Where do I fall on the family totem pole?
I guess that’s what it comes down to………….. am I truly alone? I feel like it.
Yes. I am aware of my own flaws and fault. I have a few………………………….
It’s easy to say, “I love you,”“I’m here for you,” or “Thinking of you,” but when it really matters, do we actually mean it?
Do they mean it?
Would I mean it if the roles were reversed?
Do they ever wonder if I’m sinking under the stress? Would I wonder?
Do they know that I have cracks in my own facade? Would I know?
Family dynamics are always tricky when it comes to a serious family illness… old resentments and new anger festers until it just explodes………….
I don’t know why this still bothers me. I wish I could let it go, but I can’t.
I’m still clinging onto my own hurt feelings.
It sort of makes me want to run away from everyone………………
I started this blog to chronicle and share my experience with my mom and her disease… but the more I wrote, the more it forced me to examine my own relationship with my mom (and myself)—before she became my demented mom.
It’s easy to lose sight of the “before” when the present is always is so incredibly, in-your-face-front-and-center present… that probably explains my own memory loss when it comes to my mom… for whatever reason, I can’t fully remember what she was like before she became sick, before the disease stole her away… my memories are mostly feelings… of course, occasionally, somethings pulls me back in time and I catch a glimpse of our mother/daughter dynamic… that’s always weird and painful because you also see how you were…
Last Friday, we were sitting at my dad’s dining table looking at old pictures… Jon was snapping photos of my incredibly awkward stage and uploading them to Facebook… we were laughing and listening to dad share stories… stories about my grandpa and how he was offered a 2nd Lieutenant position because he could speak Italian… I told my dad that after this last trip to Italy, I decided I was going to take Italian at the community college, I suggested he join me…
………………………………and then I remembered Independence Day… the movie.
I think it was 1996. ID4 was a big deal, I could hardly wait to see it. My dad wanted to see it too. My mother was never into “scary” movies; not 10 minutes into it, she stormed out of Saving Private Ryan—dad was pissed. This summer was different. My mom was going to Ecuador for a month or two. I don’t remember if I was going to meet up with her later (we traveled separately for two reasons: 1- she would stay longer than I would and 2- she stressed me out when we flew—turbulence for my mom meant the plane was going down). My cousin was getting married in Minnesota that August and I was in the wedding party; I was probably staying home, getting ready for the Minnesota trip and working at the local movie theatre.
I remember feeling happy that my mom was leaving, and that my dad and I would finally get to hang out—just the two of us. My mom and I never really had deep conversations from what I recall; I think maybe we were culturally divided to some extent… I was an American kid being raised by an Ecuadorian mother… our differences were stark. I couldn’t always relate to my mom, I’m sure she felt the same frustrations… how do I communicate with this foreign child of mine? My dad was different. My American father. More like me. But then again, my dad traveled a lot for work and he wasn’t always home… so maybe it was just having someone else to talk to… that, and I felt like I could talk to him on a different level… maybe deeper, or maybe it was as simple as wanting someone else to talk to
As an only child, I felt lonely a lot.
I guess I hadn’t settled into being OK with just me.
The morning of our movie date, my dad took my mother to the airport… that night we went out to eat and caught the movie. I remember telling him on the way home something about my mom… his response was something like, “she’s your mother…” I can’t remember what was said or what I said… I was 19. I think I just wanted my mom to get me, to understand me and that I was not like her in many ways.
I once had a therapist tell me that when it comes to mothering, there are different behaviors or something… there are mothers who are incredibly nurturing when the child is a baby or toddler; their ability to connect is deep; but when that child transitions into adulthood, something happens… a shift. A miscommunication. The mother doesn’t perhaps know how to mother an their adult child. I don’t really remember how she explained it, but that seemed to be our relationship… my mother was an incredibly warm and loving parent, very nurturing. She would do anything she could for me. Even when I was a teenager and in my early 20s, we would spend time together and go shopping—it was our thing, perhaps our way of communicating. But we never reached that “friendship…” stage… where you could talk and confide, share secrets, talk about life, it’s meaning, how to cope and deal with life, men, careers, life, family…. we were clearly mother and daughter. Very black and white. No crossing of lines… I don’t know, maybe that “friendship” or blurring of lines is what happens as you get older.
I wouldn’t know… I started losing my mom when I was 27 or 28.
When I asked my dad to join me; it struck me as ironic that so long ago, I wished away my mother… and the god’s listened to me. They actually listened.
They took away my mother.
So there I was, 15 years later (almost one week away from the day), sitting at that dining table, looking at old photographs with a glass of wine, realizing what I had done.