“For 25 years I’ve been planning my retirement with my husband. We were going to do all this stuff—I thought I would be doing anything I want.” That’s how Nanette Virgilio of Highland Falls envisioned her life after decades of working. But a few years ago, those plans changed. Her mother began showing signs of dementia, which has progressed to the point that Nanette is now her full-time caretaker. Virgilio even stopped working early to look after her.
As lengthening average lifespans in the US escort our elders into the realm of age-related illnesses, longterm care for a family member with a progressive, incurable illness (one from which there will be no recovery to normal health) is becoming a familiar family tale. Roughly five million people in the US have Alzheimer’s disease, the most prevalent form of progressive illness, and many of them are being cared for by a family member who hadn’t expected to do so.
The Caregiver Challenge
Any longterm illness is a challenge to a caretaker who must add that task—usually without much warning—to existing daily demands. Dementia, defined as a decline in cognitive function that is severe enough to interfere with day-to-day function, is the most daunting to weather. Alzheimer’s progresses from its best-known feature of memory loss to broader and deeper cognitive problems: general confusion and disorientation, impaired judgment, loss of control over a variety of essential brain-controlled behaviors like eating, bathing, walking, and even swallowing. A similar decline is typical of other dementias, and of Parkinson’s disease in its later stages.
Michelle Muir, who works for the Hudson Valley chapter of the Alzheimer’s Association, is her father’s caregiver. “My father lived with us for three years after my mom passed, and things started to happen that were kind of unusual,” she recalls. “He had always been the head of household, paying the bills and so on. But we noticed that gradually he was having trouble remembering if he paid a bill, and didn’t know how to find out if he had.” At first it seemed her dad might be grieving the loss of his wife. But eventually, Muir says, symptoms became more complicated and irrefutable. “A person can lose some of the most simple daily functions. Sometimes my father will not recognize his breakfast or a cup of tea. He asks, ‘Should I drink this?’ even though he knows I’ve just made it for him.”
It was through her father’s illness that Muir discovered the Alzheimer’s Association. “When he was first diagnosed, I didn’t know what it would mean,” she says. “All I really knew about was the forgetting. I had a care consultation [through the association], and I went to a support meeting.” That helped a lot, she said, but the task gradually got more demanding. “If you have a full-time job, or just a full life, you wonder how can you possibly wrap your arms around this, too.”
Fortunately, there’s a lot of help for getting through all stages of caring for a loved one in decline. There are even some benefits a caregiver receives that no other experience can offer.
End-of-life decisions affecting money, property, and medical care are best done in good health. So, though it sounds grim, planning as if dementia were around the corner is wise. And it’s comforting to everyone to know an elder’s wishes about such things as when and how long life support should be continued in the case of coma, and if the elder would prefer to be at home, in a hospital, or at a hospice for the last days of life. Those wishes should be written in legally valid advance directive documents. (See “Advance Directives” in Chronogram’s July 2007 issue, available at www.chronogram.com.) Writing out clear and specific financial and estate decisions, and acting on any that merit immediate attention, can avoid legal tangles and family battles later. A lawyer specializing in elder care will assist in getting everything properly handled.
Virgilio says she was able to take care of most of those decisions and documents during the early stages of her mother’s illness. “But,” she adds, “my mom made some decisions about her will that might be different if she had done it before any symptoms appeared.” Virgilio emphasizes two things that must be done ahead of time—including for yourself, as early as your 50s: Take out an insurance plan specifically to cover longterm care (you can’t do so for someone who is already ill), and set up a trust fund that a caretaker can access but which health insurance companies cannot (the fund must be in place for five years before drawing from it).
Services and support for caregivers range from home visits to assess whether a loved one is beginning to have signs of an age-related illness, to practical and financial support for the full-time, multiyear caregiver. Muir wishes more people knew what the Alzheimer’s Association has to offer through its many regional offices nationwide. “The Alzheimer’s Association specializes in being able to link people with the appropriate community resources in the region,” says Muir. “We have listings of private home care, adult day care, and companionship agencies. We can help determine eligibility for assistance to help pay for programs, and we offer emergency respite care grants.” That last option, called the Time Away Program, helps caregivers in urgent personal and financial need to take a break, through monetary grants and referrals for daytime or overnight care for their loved one.
Other services of the Alzheimer’s Association include:
• A 24-hour telephone helpline for information, referrals, and a caring ear;
• Ongoing support groups for caregivers, family, friends, and early-stage patients;
• Free home-visit or phone consultations with trained experts, to guide the family through health, legal, and financial mazes;
• A lending library of educational materials in diverse media, and of recreational equipment;
• Social gatherings as a way to get out of the house and keep in touch with others;
• The Safe Return Program, providing identification products and optional registry with a national database that helps memory-impaired people get safely home if they wander or get lost.
A great assist for new caregivers is the Savvy Caregiver Program, run by Northeast Health in the Capital Region. These frequent, short-term classes teach caregivers key skills and knowledge in four main areas: managing daily life by keeping the person enjoyably involved; managing behavior to help the person remain calm and in control; caregiver self-care; and managing resources. The classes are free for families living in Albany County, thanks to a grant from the New York State Office for Aging and the Albany County Department of Aging. The Office for Aging also lists a number of other statewide services and resources on its website.
Helpful books are plentiful too. For instance, author Denise Brown crafted a handbook that offers a roadmap to the caregiving journey. In The Caregiving Years: Six Stages to a Meaningful Journey, Brown outlines in an organized, supportive, refreshing manner, the progression of involvement one can expect. The first stage is that of the “Expectant Caregiver,” who prepares for the possibility that a loved one will need care by helping to put end-of-life affairs in order, such as by completing advance directive and financial documents. The middle stages reflect the progression, from early months of care to several years, during which the caregiver learns more about the illness, gets used to caretaking tasks, finds and uses support services, and adjusts to balancing caregiving with one’s life—including the emotional dimension. The last two stages are the “Transitioning Caregiver,” which addresses the needs of both the caregiver and loved one at the end of life, and “Godspeed Caregiver,” covering a period for two years after death, because the caretaker’s personal journey doesn’t suddenly stop when caretaking needs come to a halt.
A support group, though it may sound unappealing to some, can be a lifesaver. Diane Van Dusen, LMSW, runs a number of support groups for caregivers through her work as clinical manager of the Alzheimer’s Disease Assistance Center, which covers 11 counties in the Capital Region. “The biggest thing people take away from a support group,” she says, “is the sense of not being alone. Caretaking can be a very lonely job. The exchange within the group gives people the feeling that someone else understands what they are going through. It reduces their sense of isolation. They can even laugh together, they can cry—no one’s judging. There is a power in the group that goes beyond what someone can get from individual counseling.” It’s also a great way to share information. “What works for one person might work for someone else.”
In reality, not everybody thinks they can make time for a once-weekly, or even a once-monthly, group meeting. But there are ways to make it happen, Van Dusen explains. “At some support group sites, such as here at the Marjorie Doyle Rockwell Center in Cohoes, the loved one can spend the hour in the adult day-care program. Or, we suggest the caregiver look for a friend or companion aide, just for that time, because getting support is an essential piece to their ability to provide care.”
Virgilio goes to a once-weekly caregivers’ support group. “It’s the one thing I make time for,” she says, because “unless you’ve cared for someone with Alzheimer’s, you don’t understand. I have to remind myself not to get angry at my mom about the things she does sometimes—that’s where a support group really helps. You learn that certain behaviors and problems are universal.”
Virgilio also learned practical ideas from others. “I took the car down to have a switch put in so you can’t start it unless you know where the switch is. That takes away the battle with mom about whether she can drive. Sometimes she forgets that we already agreed it’s dangerous to drive, and insists on getting in the car to drive somewhere.”
Rescuing the Overachiever
When a loved one falls ill, it’s understandable to want to do everything possible for them. In the short term, that might be manageable. But in the case of progressive, protracted illness, being an overachieving caregiver is exhausting. Nearly a fourth of family caregivers responding to a 2003 survey by the National Alliance for Caregiving/AARP said they spent at least 40 hours a week tending to a person with dementia; 71 percent of them had cared for someone for more than a year, and a third had done so for at least five years, at that level of time involvement. Two-thirds missed work to accomplish their caregiving responsibilities, and nearly 10 percent turned down promotions or lost job benefits.
William Colagrande, a psychotherapist in Kingston and director of the Institute for Human Development, sees how ordinary people try to tackle this task they never expected. “Unlike a doctor or nurse who chooses to be in the caregiver profession,” he says, “the people I speak to [in therapy] haven’t trained for that. The responsibility suddenly drops on them like the Wicked Witch of the West. They often overcompensate for lack of training by overdoing. They won’t even go out for coffee with a friend, or to a show in the evening, because they feel they can’t leave. They isolate themselves and lose the balance in their lives.”
But how does a caregiver shed tasks that it seems nobody else can, or will, attend to? A starting point is to learn about services in the community. Drawing on just one or two of them may put life back into the manageable zone, and boost mood, energy, patience, and endurance. The person being cared for may enjoy something new, such as interacting with someone else or socializing out of the house.
Grappling with Guilt
Virgilio is her mother’s only caretaker. For close to five years, she has rarely asked for help, and only recently hired a professional in-home caregiver to give her a break occasionally. “It took me a long time to not feel guilty about going out on my own,” she says.
Colagrande tries to educate people about what he calls “real guilt” versus “false guilt.” In brief, real guilt derives from acts of commission or omission that have harmed another, whereas false guilt is often characterized by an element of wishful thinking: “I should have foreseen this,” “If only I had acted more quickly,” and so on. False guilt is a form of self-punishment emerging from feeling you’re never good enough, or doing enough, to please others. “We must burst that bubble of false guilt,” Colagrande emphasizes. “People must realize that going out isn’t a transgression. It’s incumbent that they take breaks, get help, relax.” He compares it to that scenario that flight attendants tell you about in case of emergency: Put on your own oxygen mask first, so you’ll survive to help others.
There’s another type of guilt to release: that of fudging the truth or outright lying to your loved one. Says Virgilio, “I’ve come to grips with lying, or saying things that aren’t correct, or agreeing with things that I know aren’t right. Sometimes it makes her cry when I insist that I’m right. It took me a long time to just let go of being right and agreeing with what she wants to hear.” Her mother doesn’t recall the conversations later anyway, and better to enjoy the moment instead of spending time arguing, Virgilio advises.
Rewards of Caregiving
In spite of significant challenges, the benefits of caring for a loved one with a progressive illness are there for the gleaning. Deana Simpson, a registered nurse who created a website to help those dealing with CJD (Creutzfeld-Jacob disease, a rare form of dementia) after her mother died of the illness, spoke at a caregiver conference a few months back in the Hudson Valley. Simpson offered these positive outcomes from taking care of a dying loved one, which she’s discovered firsthand:
• Connecting more deeply or reconnecting with the loved one;
• Learning compassion;
• Finding personal fortitude and empowerment;
• Enhancing one’s resourcefulness and problem-solving abilities;
• Learning that daunting challenges are surmountable.
A heightened awareness of one’s own mortality, and questions about spirit and of life’s meaning, also visit the caregiver. It’s not selfish to consider these things while caring for another. In fact, says Colagrande, it’s a good time to explore the spiritual dimension of your life. “Consider it a learning experience on the spiritual level and ask yourself: ‘In what direction does this circumstance point me as a new way to grow?’ Approaching it from this point of view offers the opportunity to impart meaning and hope to a task that is otherwise capable of drowning us in a sea of hopelessness and despair.”
Albany County Department for Aging
Alzheimer’s Disease Assistance Center
Cohoes: (518) 238-4164
Caregiver Assistance, New York State Office of the Aging
www.nehealth.com; (518) 274-3382
The Savvy Caregiver Program, New York Capital Region
William Colagrande, MS
www.i4hd.com; (845) 339-6250
The Caregiving Years: Six Stages to a Meaningful Journey by Denise Brown: www.caregiving.com/years/index.htm.