Chapter 1 - Caring for Aging Parents

Great Places created TOOLKIT primarily for the benefit of adult children of aging parents and secondarily for their parent(s). If you are one of the multitudes in the first group you are likely between your early 40s and early 60s. You're probably still working, better off financially than your parents, and pretty computer savvy.

Boomers as Caregivers

You are a member of the Baby Boom generation, the largest of its kind in world history. You are also a member of what is sometimes called the "sandwich” generation, so named because although you may still have children at home, you are beginning to take more and more responsibility for tasks involving your parents. You are taking on yet another title: caregiver.

Aging is a natural process, and it can be a very positive experience. Choices made during this time can lengthen and improve quality of life, create new challenges, and open the way to exciting and fulfilling possibilities. We have begun to recognize that older people benefit enormously from lifestyle changes and are able to remain both active and productive.

We built Great Places to help you learn what to do for and with your parents. We also hope to help you prepare for the same inevitable challenges in your own life. Remember that your parents aren’t the only ones who are aging; your body is aging as well. As we guide you through this process with your parents you may find yourself saying, “Gee, I wish we’d done this years ago.” Remember, that’s where you are now. We're here to help you do the very best you can for your parents. But think of those who come after you. With a little forethought you can create a workable plan for your own life when you reach the place where your parents are now.

Perhaps you have just begun to call a parent more regularly (and panic a bit when the phone goes unanswered). You may see them more often, include them in grocery shopping outings, or drive them to doctor and dental appointments. You notice that dad is participating less in the conversation, walks a little slower, breathes a little harder, repeats himself more often, and just doesn’t care for himself or the house the way he used to.

The Time Pressures of Caregiving

You, on the other hand, are in the prime of life. You’ve read--and perhaps believe--that 50 is the new 40, 60 the new 50. You may work more, perhaps much more, than the 40-hour week. But despite your career accomplishments, you are finding yourself worrying more and increasingly stressed about the time and energy it takes to care for your parent. You certainly don't begrudge the attention that mom and dad require, but you're discovering that it is nearly impossible to spare the extra time that's necessary. Worse, you simply don’t have a lot of the answers to questions that have arisen.

A survey conducted for the National Alliance for Caregiving and AARP estimates that there are 44.4 million caregivers who provide unpaid care to another adult. Almost six in ten (59 percent) of these caregivers either work or have worked while providing this care. And fully 62 percent have had to make some adjustments to their work life, from reporting late to work to giving up work entirely.

A Unique Challenge for This Generation

Previous generations simply took their aging parents into their own homes. Or the adult siblings shared the caregiving duties by moving mom from one child’s household to the next for weeks or months at a time. Times and circumstances have changed, though, and these arrangements have changed with them. The households of the adult children may have both adults working, or the adult child may be single, divorced or widowed. The needs of the aging parent may be beyond the capacity of the adult child to handle. For example, the adult child's home may be too small to accommodate another occupant, or it might be multi-level, making it impractical and unsafe for a wheelchair-bound parent. Or the parent may be incapable of being left alone during the day and limited finances can't stretch far enough to provide adult day care for the parent.

While more than 90 percent of seniors recently surveyed said that they would prefer to stay in their own homes as long as possible, don’t just assume your parent would opt to live with you or one of your siblings. Not all aging parents want to move in with their children. My own 83-year-old mother frequently reminds me that she will never move in with any of her three daughters, even though she adores us and we are equally enamored with her. But my mom cared for both her mother and her mother-in-law at home during decades of protracted illness and dementia. Like many good parents, she wishes better for her own children.

Know that living with you may be a great option

There are any number of resources that can make this work. If you are away during the day and need someone to check on your parent you can hire an in-home health care service on an hourly basis to do just that. You might also consider adultday care. These centers provide up to eight hours of care per work-day. You can arrange for daily care, a few days per week or simply use their drop off service. The days are filled with activities, a noon meal is provided and prices are usually quite reasonable.

But even if a parent moves in with a child, there may come a time when the parent’s needs require more attention than can be provided by a working child with outside assistance, a stay-at-home caregiver or somebody without medical expertise. Fortunately, at that point choices abound and we will help you make them.

If you are visiting our site we assume that something has triggered your curiosity. Have you begun to use the word "frail" or "forgetful" when talking about your parent? You may be in that in-between stage when dad is just beginning to falter. You should know that very few in your situation make this transition smoothly so you are not alone. After all, you're a member of a generation that is 76 million strong, 44 million of whom are currently providing some kind of care for an elderly relative. This means you’ve got lots of company. You are likely one of the great unpaid caregivers in our society.

The most common afflictions requiring ongoing care are heart disease, cancer, diabetes, Alzheimer’s and a menu of other maladies that impact memory and the ability to care for oneself. If you have become a caregiver, here's what the study says you can expect:

The average length of care is 4.3 years; however, three in ten caregivers report providing care for more than five years. Caregivers age 50 and older--who tend to be caring for mothers and grandmothers--are among the most likely to have provided care for 20 years or more. The survey found that 17 percent of caregivers between 50 and 64 and 18 percent of those over age 65 have been providing care for more than a decade.

But we began by talking about what happens to the adult child in these circumstances. Sometimes the life changes we are discussing progress slowly and everyone has time to adjust. Unfortunately, more often the pace accelerates and the adult child is catapulted into the role of caregiver with little training, less information and no extra room in their crowded “life" plate. They try to figure out how to balance their increasingly complicated lives, yet find that the person who most often suffers is the caregiver. Intergenerational living can result in more people sharing the tasks, but it can also create a tug-of-war kids/parents/grandparents, leaving you in between.

This same study indicates that three in ten caregivers carry the heaviest load. These people provide the most hours of care, fulfill the most demanding responsibilities, and are the most affected by their role. This group is more likely to report physical strain, emotional stress, and financial hardship as a result of their caregiving responsibilities. Women are more likely to be providing care at the highest levels compared to men.

I watched a dear friend of mine unravel as her caregiver responsibilities for an 85-year old mother increased. We only lunched once a month but this was a luxury she began to deny herself. When we could get together, she didn't talk about her kids and husband; instead, she talked only about the all-consuming tasks of nursing her mom. I heard about the doctor trips, the insurance claims, her anger at her out-of-state siblings, her exhaustion, the trouble she had keeping up at work, her feelings of inadequacy, the guilt she felt when she took time for herself, and much more. On one occasion she spent most of our time together sobbing uncontrollably in a hotel restaurant.

Caring for the Caregiver

Great Places offers facts, life experiences, surveys and questionnaires. These will serve as your personal guide to assist you to analyze your present situation, weigh alternatives and help make good decisions about next steps. Here’s one that is all about you.

How can I know if I am becoming a stressed caregiver?

• Am I experiencing feelings of anger, frustration or impatience toward my impaired parent?
• Am I short with them about issues over which they have no control?
• Do I overreact to relatively trivial situations with a “hair trigger?”
• Have I begun to exhibit changes in my own eating or sleep habits?
• Has my social life diminished?
• Do I worry almost constantly about my parents?

If the answer to any of these questions is "yes," you need to step back and assess your personal situation. How is being a caregiver affecting you, your parents and others in your life? It doesn't help you or them if you burn out. So, here are some options that may be available:

• Ask family members for help.
• Check with county and state agencies and local social service agencies for assistance.
• Insure that you are taking full advantage of every homecare benefit to which your parent is entitled.
• Get a break provided by a respite care provider.
• Contact local senior community centers.
• If you or your parent is a church member, inquire about a senior ministry that might provide some help.
• Join a support group: there is great comfort in numbers.
• Take time for yourself: do some leisure activity you enjoy.
• Sign up for the Great Places newsletter and visit our Blog. You’ll find cutting edge information and the comfort of other adult children sharing both their problems and creative solutions.

Finally, give yourself a break. This is a huge task. There is no perfect way to handle the relationship between aging parents and their adult children. There are, however, better and more informed choices available. It is emotionally fraught for both generations. The older group may be upset about the ravages of age and the accompanying loss of control and freedom. The younger group hates watching their beloved parent age, resists their new role, and becomes frustrated trying to “parent their parent.” Try to be patient... remember you will be wearing their shoes before long.

Contacting Great Places

Know that we are here to help. If you are unable to find the answers or information you need in the pages that follow please let us know at questions@greatplacesinc.com. We promise to do our best to find answers and respond to you quickly.