The Heavy Cost of Giving Care
The Alzheimer’s epidemic has severe emotional and financial consequences for patients’ spouses and children
By Bliss Bowen
At first it was just missed social cues and gaffe-covering laughs. It was easy to shrug off — after all, Dad was in his early eighties, spry but finally showing his age, and he’d always marched to his own joke-loving drum.
But Mom started accompanying him to doctor visits; he didn’t remember things. One day I called and was astounded to hear my macho ex-cop/ex-teacher stepdad speaking gibberish, unable to connect syllables in logical order. Even though Dad did nothing as extreme as neatly rolling up his socks to tuck them into the silverware drawer (as my maternal grandfather did after a cerebral hemorrhage), it was obvious these weren’t just “senior moments.”
That was before he took to stuffing hundred-dollar wads of cash into his shirt pocket. Before he kicked Mom’s cat in a fit of jealousy; before he ordered me to get the hell out of their house in a sundowning rage, then cried like a child at my return and (rare for him) apologized; before he wrapped a ball of excrement in toilet paper and left it on the bedroom floor for Mom; before he began peeing on the carpet between diaper changes; before I saw my generous, kind-hearted mother morph into a furious stranger who berated Dad while he cringed in anxious incomprehension.
What followed was a chapter in family life that I fervently wish I could un-read. I wish I could rewrite its pages to spare my dad, my emotionally wrung-out mom and my heroic stepsister all the pain and sanity-sucking drama that contorted our lives for the next several years. Alzheimer’s smashed into my parents’ house like a grenade, and everyone tiptoed around, praying it wouldn’t detonate. When it inevitably did, the shrapnel missed no one.
That’s how it was in my family. While particulars vary, that’s how it is, in essence, for the estimated 5.3 million people living with Alzheimer’s disease in the United States circa 2015. According to U.K.-based Alzheimer’s Disease International, there are 46.8 million people living with dementia around the globe; more than 9.9 million new cases are documented each year.
Alzheimer’s is the sixth leading cause of death in the United States, and the Alzheimer’s Association estimates there will be a 40% increase in the number of people age 65 and older living with Alzheimer’s by 2025. Without significant advances in treatment, their numbers may reach 13.8 million by 2050. By then, ADI estimates, there could be as many as 131.5 million people living with dementia worldwide. Despite promising research and drugs in development, there is still no cure.
We are in the midst of an epidemic.
Alzheimer’s and other dementias are projected to cost the United States $226 billion this calendar year. By 2050, as the baby boomer generation ages, that figure could reach $1.1 trillion. ADI puts the “estimated worldwide cost of dementia” in 2015 at $818 billion. That includes “informal” (i.e., unpaid) care provided by family caretakers. To put it another way, “if global dementia care were a country, it would be the 18th largest economy in the world,” its annual costs dwarfing the market value of both Apple and Google.
What about caregivers?
For each person diagnosed, there are at least one or two others whose lives will be irrevocably altered when they shoulder the responsibility of care.
According to the Alzheimer’s Association, there are more than 15 million Alzheimer’s and dementia caregivers in the United States. That’s 15 million people giving up or compromising work, taking in afflicted loved ones or relocating to care for them, paying for medical and maintenance needs out of pocket.
Those caring for Alzheimer’s patients at home or overseeing their care at a facility are face-to-face with a disease that robs memory, short-circuits cognitive function, eradicates language skills and, in its late stages, disables motor functions.
It is hell for caregivers tasked with making decisions and navigating byzantine insurance restrictions.
(The question of what is and is not covered by insurance is a story unto itself. Suffice it to say that Dante’s rings of hell have nothing on the hoops that Alzheimer’s caregivers are forced to jump through by the insurance industry and Medicaid.)
Those oft-unseen caregivers were honored in November, National Alzheimer’s Disease Awareness and Family Caregivers Month.
Upon winning an Oscar in February for her star turn in “Still Alice” as an early-onset Alzheimer’s patient, actress Julianne Moore noted in her acceptance speech, “So many people with this disease feel isolated and marginalized.” That’s true of caregivers too. Depression, elevated stress hormones, compromised immune systems and cognitive decline are among the health issues they experience, according to the National Center for Biotechnology Information, an arm of the National Institutes of Health.
“Stress actually kills the caregiver before the patient with dementia, statistically,” observes Carol Sue Selinger, who became a gerontologist after caring for two parents with dementia. She facilitates three caregiver support groups in the San Gabriel Valley. “It’s so prevalent that the Alzheimer’s Association actually has a separate pamphlet dealing with the stress of the caregiver.”
“I was probably guilty of just running on adrenaline a lot of the time,” acknowledges Lisa Finnie, who was primary caregiver in her family for her mother, a nurse diagnosed with early-onset who died last year. “I probably needed to sleep [laughs] but you can’t; particularly the last five years, it was kind of emergency mode a lot of the time.”
Dementia vs. Alzheimer’s
“Dementia” is a general term applied to a range of symptoms that collectively indicate declining mental faculties. The most common type of dementia (60% to 80% of diagnosed cases) is Alzheimer’s, a specific disease that causes changes in brain chemistry and progresses through seven stages. There are approximately 200,000 US cases of early-onset (i.e., diagnosed in their thirties, forties or fifties); Alzheimer’s is not just “old people’s disease.”
Alzheimer’s patients typically live from four to eight years after diagnosis. Within that timeline is a plateau on which they can seem socially engaged one day, irrational or withdrawn the next. That’s confounding for caregivers stumbling through a maze of needs and questions: Are they dealing with the right doctor? How involved should other relatives be with hands-on care? Who will drive the patient around? How will they handle their finances? Can the patient brush their teeth? Take their pills? Maintain their personal hygiene? Should they be at home or in a care facility — and if the latter, are available (and affordable) facilities designed for independent or assisted living? Do they offer memory care? Will the patient be disoriented by a move?
“One of the greatest challenges for a caregiver, particularly with a parent who has early-onset Alzheimer’s, is that as soon as they hit a point where they’ve lost a certain kind of functionality, they may no longer be able to stay at a particular facility and you have to move them again,” says Finnie, who lives in a one-bedroom apartment and did not have the option of caring for her mother at home. “We moved Mom four times in 10 years. Every time you moved you would be letting go of more of the things that she used to own and hold close, things that helped her know who she was [but] were no longer meaningful for her or necessary or helpful.”
Burnout is real
Caretakers can resemble PTSD-embattled soldiers under the relentless grind of daily routines and the patient’s escalating problems. They often neglect to ask: “Am I burning out?”
In their book “The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss,” widely regarded as a bible for caregivers, authors Nancy L. Mace, M.A., and Peter V. Rabins, M.D., M.P.H., run down a list of warning signs, including insomnia, weight loss, isolation, alcohol and medication abuse, excessive caffeine intake, screaming and crying jags, even suicidal thoughts.
“When they first come to me, the concern is stress,” Selinger says of caregivers in her support groups. “The elephant in the room is it’s such an expensive proposition to hire caregivers to give them a break, or to put them in a facility: ‘My mother is at home, and I’m so stressed, but I don’t have the money to hire a caregiver.’ They’d love to hire a caregiver for eight hours and go away for the day or have a date with their husband.”
“They want to know what they’re doing or not doing in caring for either a spouse or, in some of my cases, adult children caring for a parent,” says Tanya Kaplan, who has been facilitating caregiver support groups at the Culver City Senior Center for eight years. One particular challenge many caregivers don’t or can’t anticipate, she adds, is seeing how their loved ones deteriorate: “It’s such a downhill process. They’re just not ready for that. The changes that take place, the unexpected physical changes, the emotional changes — it’s just overwhelming.”
Some succumb to a martyr mentality, refusing to acknowledge stress — which helps no one, long-term. As Selinger points out, “Who will take care of your loved one if you get critically ill?” Or, as Mace and Rabins write, “The well-being of the person who has dementia depends directly on your well-being.”
Such observations seem self-evident, yet common-sense bearings are easily lost in the mire of caregiving.
“Make sure you have someone that you can talk to about the pressures and the demands and the concerns that you’re dealing with all the time,” Finnie advises. “I was really fortunate that my mother’s sister was a sounding board and source of advice and love and comfort.”
“Support groups are essential,” Selinger says. “They help with the isolation, the stress, the education, and it gives them ways to better communicate with their loved one. Groups are anonymous; what’s said in the group stays in the group.” She urges caregivers to exercise, reconnect with friends, and limit online “research,” which can be confusing and feed morbidity.
“I just tell people that, truly, they have to take it one day at a time, to not feel guilty, to do the best that they can every day, and to not to be isolated, to involve friends and family,” Kaplan says. Asked if there is anything in particular she wishes the general public understood better about Alzheimer’s and its effect on caregivers, Kaplan’s answer is emphatic:
“The public has not enough awareness of how this disease progresses and what happens to a family regardless of who the person is, what happens to them emotionally and, enormously, financially. We do not have a good support system or a good way of dealing with this financially. And I wish more people knew and understood what was going on in their homes. It’s not a question of sympathizing; it’s a question of being an advocate for these people. They need all the support in the world.”
‘Be an Active Caregiver’
Caregiving with Alzheimer’s patients isn’t a matter of just doing what needs to be done.
It’s difficult to articulately voice the anguish caused by watching someone die incrementally, until, by the time their body finally stops breathing, it’s been so long since the spirit you loved departed the scene that you feel grateful they didn’t have to witness the wreckage.
For caregivers, whether the patient was at home or in a care facility, grief is often conflicted by guilty relief that the ordeal is over.
Asked what advice she might submit to a caregiver, Finnie tenders a thoughtful list:
“Assuming you already have the caring impulse and want to be providing care, that is your guide. Be an active caregiver. Make sure you have power of attorney so you can be your parent’s or your elder’s advocate. Go to doctor appointments and ask the doctors questions — tons of questions. You have to constantly ask those questions. You can’t be passive about any of this. You have to be on the hunt for information, always advocating. Follow up; be on top of the staff at the facilities. And remember to be very thankful to those people, because they’re around your parent and you want them on your side.”