What Unemployment and Caregiving Have in Common
This year, the World Alzheimer’s Report, published by Alzheimer’s Disease International (ADI) and due to be released on September 19, 2013, focuses on supporting the 15.4 million adults who serve as caregivers to a spouse, parent, or family member with Alzheimer’s disease. For the most part, we don’t see much of this group. They cannot leave at the end of the day to meet friends for a drink or dinner. They usually don’t show up at art openings, wine tastings and private parties. The accessible social life we take for granted often shuts down for the dementia caregiver.
Most of us have a network of friendships sustained by a supportive structure of prearranged hours and responsibilities: We have friends at work, at the gym, in civic groups and clubs. For the caregiver whose daily life is tightly focused around the needs of a person with Alzheimer’s, these structures fall away. From the mid-stage on, dementia patients generally can’t be left alone. Caregivers are made homebound by the difficulties inherent in transporting and supervising an adult who looks like any other older person but who may suddenly become uncooperative, tired or frightened.
We talk a lot these days about the problems of the unemployed—the financial hardships, uncertainty, isolation. Unemployed people do without restaurants and wine tastings, too, and they no longer have access to the full range of places where groups of friends congregate. But the family caregiver may experience many of the same troublesome circumstances, while laboring around the clock, in relative seclusion, without pay or benefits. You won’t find a caregiver polishing her resume or poring over want ads in a coffee shop, not, by any means, to underestimate this plight. And you won’t find ageism in caregiving: Retirees take on this altogether different kind of work while coping simultaneously with their own health limitations.
Caregivers must focus undivided attention on a person who is slipping away in a succession of internal losses and do so while wrestling with the emotional consequences and economic threat of those losses. Providing care at home may be the only affordable option, even if it means quitting a paying job, and even at the personal consequences and costs of caring single-handedly for an adult in the mid-to-later stages of Alzheimer’s disease.
The disease has been described as an invisible illness because its sufferers may look and briefly act normal after calamitous changes have occurred in the brain. Often they are physically robust until near the end, when eating becomes difficult. From mid-stage on, though, they’re forgetting not only what just happened and how to get from one place to another, but also how to look after themselves. The caregiver takes over the tooth-brushing, the deodorant and the buttoning, sometimes fielding resistance and outright hostility: The patient no longer perceives a need for these conventions.
Friends who do not live with this challenge are daunted by it. While we may smile indulgently at the wrongly-used words and mismatched clothing of a five-year-old, we shy away from the same behaviors in a seventy year old. It doesn’t fit. It’s a terrible Benjamin Button kind of story in which the main character lacks the advantage, however dubious, of congruity between his progressive mental setbacks and a concomitantly changing physical appearance.
We aren’t sure what to say and do; we are busy with our own lives. To make matters worse, we’re scared by the statistics—almost one in two people by age eighty-five will have symptomatic Alzheimer’s disease, according to the Alzheimer’s Association, and it will begin insidiously more than two decades earlier.
Maybe it’s time we step over our hesitations and learn how to ‘be there’ for people who face within themselves this devastating illness and for caregivers who provide care in their homes, sometimes without thanks or recognition. But how? How do we make a meaningful difference in an unfamiliar, uncomfortable, uncontrollable situation? The close, intimate friend does it by replacing expectations of reciprocity with commitment: I’m here for you through thick and thin. It doesn’t matter if you can’t give back. Our relationship runs deep; I don’t measure it with a tit-for-tat yardstick.
Caregivers need those friends—we all do. However, most of us have only a few of them in our lives. During the difficult stretches, we need, too, for our wider circles of friends to help. Think of the proverbial water-cooler group from work, the friends we enjoy and count on in a less intense way. And think of the difference seven to ten people acting together could make for a caregiver.
There’s tremendous strength in numbers and cooperation. We can’t leave caring for the caregiver up to those in the innermost circle of friendship. It isn’t right or realistic. Is there a caregiver in your “water cooler” group of friends? Rally together and get to work: call, drop off dinner, visit, run some errands. Don’t let “out of sight, out of mind” be the norm. Caregivers cannot change or lessen their responsibilities; they can’t show up at work or at the gym. But you can take initiative. You won’t be able to solve the problems, but you will make a difference.