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.
Not really. Not for my family. Not for me. Not for her. Not for my dad. Our Mother’s Day sucked. Instead of brunch with mom at her favorite restaurant or an afternoon at home filled with laughter and love and pink carnations, we took my mom to her new home: A nursing home. Happy Mother’s Day indeed.
Of course, she had no idea it was Mother’s Day. I told her it was Mother’s Day. It just didn’t click in her plaque infested brain.
I knew placing her on that day or any day would be tough. I knew I would have to lie to her. I knew I would probably have to wander away while she was distracted by the staff. I knew she would be upset. I knew she would yell. I knew it would be incredibly difficult. Maybe the hardest day of all of our lives.
What I was not prepared for, and what is branded in my brain is that moment when my father took her hand in his as we walked into the facility—Dave and Margo never held hands; in all my 32 years I cannot recall a single hand-holding moment—followed by that awful second when she finally realized her room was filled with family photos and her favorite dresses. I can’t even begin to describe the look of horror and confusion on her face. “I want to go home now. Let’s go. Where is the fruits?”
Talk about a Come-to-Jesus moment.
She was sitting on her bed when she looked over to the nightstand and saw photographs of me and her sister. “Why are these here? These are mine. That’s my mother and mihijta. Why are they here?” My mom took the photos and wrapped them in the long sleeve shirt she was wearing. Then, she carefully placed her framed photos in her purse. Next, she saw her dresses hanging in the closet. “These are mine. This is my…” She took them out of the closet and walked out the door. My dad sat on the bed. He looked so tired and sad. Defeated. Exhausted. Pale. Drained of life.
After she came back into the room, I was trying to convince her that this is what the doctor wanted. That this would be good for her and that the staff would help her feel better. “Mom, this is only for a little while… just until I come back from New York (a lie) in two weeks. Yes, yes. I’m going to see my ex husband (her word for my ex boyfriend) and get back together (a lie).” She was happy about that story line. It was the only time she smiled. She prays for that particular scenario to come true. Still, despite my efforts, she wasn’t sold on staying. “No. No. No. I have to go home and feed my fruits. No. I can’t stay here. I have no idea how to go home. I have to feed my fruits.”
As I showed her more of the room and the lipstick I bought her (she carefully applied it to her chin and lips), my dad walked away. My turn. When she realized he was gone, “Davo, my Davo, where is my Davo???? DAVO!!” the staff took her down one hallway to look for him and I was taken down another hallway and out of the home.
I went home that afternoon and worked in my half-dead garden. My dad called me to check in. He was shaken. He quickly got off the phone when his voice cracked… he was on the verge of crying. I called him later that day and he sounded a little better, not much. It’s been two days and I haven’t cried.
I can’t feel much of anything. I don’t feel sad. I don’t feel happy. I just am.
I play my part in this world. Right now, I have several roles: daughter, wife, husband, decision-maker, and therapist.
Dementia doesn’t just change your loved one. It changes YOU. But not just the course of your life, it alters your DNA. I am not the person I was four months ago. I am not the person I was six, nine or 12 months ago. And this latest experience has so profoundly changed me. Today, on this fine Tuesday morning, I don’t even recognize myself.
Every cell has been altered.
I am a different person.
I met Susan over a year ago at our support group in New York City. She and I were both pretty new to the support group and we got each other — could appreciate the other’s story, understand the overwhelming sadness. Going to that support group, I think we both felt uncomfortable, yet relieved that we weren’t alone, yet scared and horrified that we were actually in this situation. Susan’s story always makes me sad. Susan is an only child and the weight of her mom’s disease falls squarely on HER shoulders. She is it. She makes the decisions. She carries the all the stress. She makes all of the sacrifices. She bears all of the guilt. She travels up to her mom’s home in Massachusetts often, but despite the heaviness of her story, Susan is determined to have a life and is on her way to finding some calm. She is finally getting her mom’s care in order with a live-in and now she may be able to enjoy those precious, simple moments (like reading a book, going for a walk, those first moments after you wake up) without stress, guilt and anxiety taunting her. Not always easy, remember balance for many of us isn’t always attainable.
Thank you Susan for taking the time to guest blog. I hope her story touches you as it does me. She is one tough mama and I love her! KAT
I am the sole caregiver for my mother who has Alzheimer’s. I am not going to lie. It is the hardest thing I have ever had to deal with in my life. It is heartbreaking, exhausting mentally and physically and there is no one else to help me. Most of my friends, as hard as they try, don’t understand. I didn’t understand either how difficult this journey would be until I was in the middle of it.
I was urged by some friends to join a support group when my mother first got diagnosed and I didn’t. I kept telling myself, “My Mom isn’t as bad as those people, she could stay like this for the next 10 years. I will deal with it then. She is progressing slowly”. The list goes on. When I did finally join it was because I was so depressed and felt so isolated that I was scared for my own mental health and ability to continue to deal with it alone.
Now I can say, I wish that I hadn’t waited to join. It is my lifeline and I don’t think I could survive without it. It is remarkable how good it is to be with people who are going through same thing you are. It makes it so much easier. There are people whose parents are further along than my mom and can tell me what their experience during that particular phase was like, or what came next. There are people who are going through exactly what you are going through and that makes it seem easier somehow. There are people who are at the end of the disease and you can see that somehow they made it and you can too.
I have been able to find the humor (and there is humor) and the joy( and there are moments of that too). The need to laugh is so great. I can’t begin to explain what a release that is. If you find one thing through this, find the moments to laugh. Share the laughter with others. It helps you to heal and gives you a break from the enormous sorrow.
I also think support groups are great for the practical aspects of this disease. You need to know what your options are financially. You need to take control of assets and finances early on so that Medicaid doesn’t take everything your parents worked their entire life for. Don’t stay in denial like I did. Act fast and things will be easier when the disease gets harder.
Get in with an eldercare lawyer as soon as possible. Most states now have a 5 year look back period. It seems like a long time, but it’s not. People in your group can help you with names of lawyers and nursing homes and daycare centers and home health aids. It’s great to have those resources from people that are going through it. They know better than anyone.
At the end of the day, I am still making all the decisions by myself, but having a support group makes me feel not so alone in the world. I wish I had had the courage to join a group when she first got diagnosed. If I had one piece of advice it would be this: don’t wait until things get bad to join a support group. Do it as soon as you can so that you can start to make plans for your future and the future of the person you are caring for. It is the most important thing you will do for yourself along this journey.