Wednesday, January 30, 2013

Women, Caregivers, and Long-Term Care

by Margaret Aranda, M.D.

Recognizing that older Americans have special issues, on July 14, 1965, President Lyndon Johnson signed the Older Americans Act (OAA, 2010) to address their preservation and welfare. This drove community-based resources for the elderly, with the OAA undergoing revision in 2006 with links to the National Aging Network Information, the State Units on Aging, and the Area Agencies on Aging. Today, an estimated 10,000 seniors per day are turning 65 years old.

Before you can even know that you need to be a Caregiver, and before you know whether your parent or loved one needs the services of a Caregiver, you must first know about the Activities of Daily Living (ADLs) (Chapter 36). If you or your loved one needs assistance with three or four of the six ADLs, it is time to start thinking about getting or being a Caregiver. The specific ADLs will be listed for you later in this Chapter, but first let us look at the enormity of the Caregiving Problem in the US.

Indicators of the status of the elderly are divided into five groups: population, health risks, health status, economics, and health care. And as we know that women of the Baby Boomer generation are entering menopause at a rate of 6,000 women per day in the US, we need to take a close look at what we are doing, how we are doing it, and how it affects the individual health of a woman.

It is helpful to become familiar with a glossary of terms applicable to senior living. There is a glossary of terms found on: , and The Family Caregiver Handbook may also help: .  And as you move from helping your ailing mother to helping yourself as you are ailing, a new humanistic dimension is awakening that recognizes your individuality: . And you may decide that you do not want things done for you they way they were done to your parent. There are companies and efforts that are working to make in-house living safer and more effective for independent seniors living alone with health issues that need monitoring.

In the future, we may see electronic scanning of the house for safety issues, automated blood pressure and vital signs downloaded onto a central command station for doctors or nurses to view, and fall prevention devices that alarm the moment a fall has occurred.

You may have noticed that as a daughter, you are helping to care not only for your own children, but for your parent(s), too. Your spare time is spent giving and giving, but your circle of people that you are taking care of has widened, perhaps without your realization. You find yourself making appointments for your hair or nails, or with your girlfriends, only to cancel at the last minute because you are overwhelmed with responsibilities and you just can’t take the time to be as nonchalant and self-caring as you once were.  You have good intentions, but you are constrained. You do this over and over again, with the best intentions of being everywhere (like you always used to be). And then you ‘flake out’ when you cancel, or you are just a ‘no show’ because you totally forgot about the commitment. In time, you start to dislike yourself because you know that this is just not ‘you’.  Please do not despair, as there are interventions that you can make that will put you in a better position to feel like you are accomplishing your goals.

Much like the progression of menopause, which is slow and takes years to declare itself, the stress and progression of increasingly supporting and caring for an elderly parent or friend can gradually take a toll on you.  You need to know that there is an Elder Care Subculture in America. How does this apply to you as a woman?

The informal care that American women provide as caregivers is valued from $148 billion to $188 billion per year. The average caregiver is female, married, works outside the home, makes $35,000/year, and is 46 years of age (Family Caregiver Alliance, 2012). When she takes extended lunch breaks, leaves work early, or arrives at work late due to caregiving duties, this costs businesses about $327 million/year. When she quits her job to be a caregiver, the cost for businesses to replace her is about $3.3 billion/year. Taking those urgent phone calls as workday interruptions to her job adds $3.8 billlion more to the cost of businesses with women who are also caregivers.

Well, let’s start off by saying that what you are going through is not just happening to you. Part of the explanation is that two-thirds of all caregivers are women, with 65.7 million people in the U.S as unpaid caregivers. That’s one in four adults who are caregivers, and almost 15% of caregivers caring for an elderly person are themselves age 65 or older. So women, this is a huge bag that we are holding: the health care of our parents and spouses. People may just not realize that your parent is in the early stages of Alzheimer’s disease, for example, and recognizing symptoms is a crucial part of getting proper care (Helpguide, Early Diagnosis). And if you ever see elder maltreatment, there are resources ( and a toll-free number (1-800-667-1116) to call for guidance and help.

There was probably no Elder Care Subculture Training Program for you.  You were asked to do little things at first. Now, years later, you are expected to be tremendously dedicated, flexible, and responsible as an untrained caregiver.  Your role can include the more simple and natural things like companionship and emotional support. It may progress to the point where you are grocery shopping, making meals, paying bills, setting doctor appointments, and even performing nursing procedures in the home. You may administer medications, make sure medications are refilled on time, pay for medications, haggle with insurance companies over bills or necessary equipment, supervise other caregivers, provide or arrange for transportation, and you may actually serve as a social worker, case manager, and care coordinator extraordinaire. And you do all of this in the Elder’s home, as that is by far the preference that we and our parents desire: the comfort of our own homes.

You did not receive training for these duties. And it is not easy to incorporate these tasks into your own life. You need to know that there are caregiver advocacy groups, free support groups, and free brochures and pamphlets to cater to your needs, so that you do not feel all alone.

When you know that you are not alone, you can reap great benefit and validation for what you do, and talk to others who know the right things to say to you. One of the most important things that you can do during these times is to ask for help. Now that you know there is an Elder Care Subculture out there, you can be a part of it, add to it, get assistance from it, and even help the next person to better deal with the issues you have already resolved.

You are stronger than you think you are, and your knowledge can add to improve the quality of life of those around you and those who will follow in your footsteps after you. Whether you realize it or not, you are on a Journey. You have foraged a path. You are walking in it every day, and you are contributing to society, to your parent, and to making this world a better place. 
You are one of those Real People in the world. 

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