5: A Young Person Living in an Old World

5: A Young Person Living in an Old World

From Chicken Soup for the Soul: Family Caregivers

A Young Person Living in an Old World

A Note from Joan

I first met Dr. Alexis Abramson on the set of Taking Care with Joan Lunden, a show that I host on RLTV about family caregiving. Dr. Abramson is a gerontologist (an aging expert) and the author of two highly acclaimed books: The Caregiver’s Survival Handbook: How to Care for Your Aging Parents Without Losing Yourself, which is a guide to help caregivers balance the responsibilities of caring for others and for themselves, and Home Safety for Seniors, a room-by-room reference and idea-book for making independent senior, and homebound, living easier.

I immediately connected with Alexis, since both of us shared a passion for helping others through the caregiving maze. Alexis writes and speaks around the country, not only as an expert in her field, but as someone who became a caregiver herself at a very young age. I want to share with you her personal story and her insightful expertise.

Joan: Alexis, when you were only in your twenties you became the caregiver for your grandmother. How did that come about?

Alexis: I was extremely close with all of my grandparents and when it came time for someone to take care of my paternal grandmother, Mimi Esther as we affectionately referred to her, I stepped up and took the job.

At the youthful age of 22 I was thrust into the role of primary care-giver, yet I was certainly not “primed” to handle all of the responsibilities that I was about to encounter. My father was extremely busy in his thriving practice as a physician, my mother was getting her Ph.D. and my grandfather had already passed away.

So who was there to pick up the pieces? ME—the aspiring gerontologist. Unfortunately that “aspiration” would have to be put on hold for the moment.

I flew out to see my grandmother and quickly realized that she needed a full-time advocate who could help her deal with the complex maze of the medical system. She was in her late seventies and the mixture of emotions and illness was just too overwhelming to allow her the strength she needed to meander through the labyrinth of Medicare, doctor’s appointments, long-term care, physical therapy and so on.

I put the pursuit of my master’s on hold and instead pursued a “real life” gerontology degree—as a full-time caregiver. As her primary support system, I shopped for her groceries, helped balance her checkbook, coordinated her doctor’s appointments, prepared her meals, and made sure she took her medications on time. I was essentially her lifeline to the outside world.

We laughed and we cried together for many years as we progressed on our caregiving journey and eventually it was time for my grandmother to move into a nursing home. Although there were still many details to be taken care of, my responsibilities lessened considerably and I was able to pursue my master’s and doctorate in gerontology.

It was my grandmother who demanded I make my education my number one priority—and needless to say she was ecstatic that my degree of choice was the field of aging. For several more years I remained Mimi Esther’s primary support system—but this time I was one of the seven million long-distance caregivers in the United States as I was living across the country in California.

The transition was quite difficult for both of us. I remember feeling a great deal of guilt as though I was abandoning her and she faced the daunting realization that this was probably going to be her last move. But we stayed close and I visited often to make sure she was as comfortable as possible.

The day my grandmother passed away my parents were on a ship in the middle of the Mediterranean—this was pre-cell phone days and I actually had to deliver the news via fax. It was not completely unexpected and we had discussed in advance that if she died while they were away I would proceed with the funeral, clean out her condominium and settle her affairs. And that’s exactly what I did!

I must admit, although it should have felt incredibly overwhelming it actually almost felt natural… like being her caregiver was supposed to be my role all along. It was as though I was put in that position so that when I became an expert in caregiving I could speak from a place of real-life experience, not just academic education.

I’ll never forget the day I received all the boxes of her things that I had wanted to save and had therefore sent to myself—it was such a cathartic moment for me. I recall that it was the first time that I understood that chronological age is simply just a number—one only truly ages as they become wiser and log meaningful experiences that make them more mature. Although in chronological years I was only in my twenties… my life experience had been that of a 50-year-old.

While I was Mimi Esther’s primary caregiver I developed a deep respect and regard for the journey of caregiving, but most of all I loved and cherished the time we spent together. I learned from her how to be a strong, independent woman who could stand on my own two feet regardless of the circumstances.

I have continued to learn from both of my grandmothers’ legacies—how to age gracefully and with dignity, how to remain strong and maintain a sense of humor during difficult times, and how to unconditionally love and care for another human being.

Joan: What are some of the common challenges that caregivers face?

Alexis: There’s a reason why family caregivers often refer to their role as the most “thankless” job out there! Thankless, yes, but a job many of us share. By current estimates, 44 million American adults—or approximately 19 percent of us—care for an aging friend or family member, usually a parent.

As the last of the baby boomers turn 50, and their parents reach their seventies and eighties, that number stands to grow, and along with it, the emotional and financial cost to caregivers and society.

In addition to the emotional price we pay, caring for our aging parents can have a steep financial toll. For the average worker, that cost equates to more than half a million dollars in lost wages, due to either cutting back on work hours or leaving a job completely to handle caregiving responsibilities. For businesses, the cost is reduced productivity by employees who must come in late, leave early, or spend time on the phone tending to caregiving duties. Clearly, caregivers need more paid leave, flextime, and on-site elder care: It’s good for employees and employers!

Care recipients need businesses to be more attuned to their needs as well. Sensitivity to the needs of elders is desperately lacking in this country. The reality is that insensitivity toward both the elderly and caregivers is a virtual epidemic. Caregivers, who give so much to others, are nevertheless often devalued and made to feel invisible. “It’s as if,” one caregiver told me, “we don’t even exist.”

Joan: So many caregivers are overwhelmed by the responsibilities required of them that it takes a toll on their own health and happiness. How can people make sure that they are taking care of themselves while they are taking care of everyone else?

Alexis: While caring for a mature adult may come naturally to some, it can still take a toll and may eventually lead to caregiver burnout. Caregiver burnout is a state of physical, emotional and mental exhaustion that can be accompanied by a change in attitude—from positive and caring to negative and unconcerned.

Burnout usually occurs when caregivers don’t get the help they need, or when they attempt to do more than they are able—either emotionally, physically or financially. Caregivers who are “burned out” may experience fatigue, stress, anxiety and depression. Many caregivers also feel guilty if they spend time on themselves rather than on their ill or elderly loved ones.

Perhaps, the most effective means of preventing caregiver burnout is by taking care of the caregiver. Below are a few tips to help prevent caregiver burnout:

 

• Establish priorities

• Reach out to others for support

• Maintain your friendships

• Take time to exercise

• Share the caregiving role with family and friends

• Keep your medical appointments

• Maintain a healthy diet

• Talk to a professional

• Take a break from caregiving—respite time is crucial

• Stay involved in hobbies

• Be proactive and plan ahead

Joan: Is there a “best way” to ask other family members to get involved and share some of the caregiving responsibilities?

Alexis: In a recent survey, 76 percent of family caregivers—most of them women—said they don’t receive help from other family members. As exhausting as caregiving can be under any circumstances, it is even more tiring and frustrating if you’re surrounded by family members who don’t seem to want to help. In fact, many people say that dealing with unhelpful siblings is one of the most stressful aspects of caregiving.

Fortunately, being a caregiver doesn’t have to be a one-person job, even in a family full of seemingly self-centered or reluctant individuals. It will take effort and ingenuity, but in most cases, you can gain the cooperation of siblings and other family members and get the help you need. Here are some specific strategies to help ensure you won’t have to go it alone:

 

• Let them know you need them. Often caregivers become overwhelmed because they are victims of their own success. When family members see how well you handle the job, they may assume you don’t need their help—so they simply don’t offer. You must learn to assign tasks—to work smarter, not harder, as they say in business.

• Hold a family meeting. Think of everyone who is, or who should be, involved in caregiving and caregiving decisions and begin to consider arrangements for a time and meeting place. Ideally, you should meet with your family face to face. If that’s not possible, a telephone conference call or even a private Web chat should suffice. And, by the way, never end a meeting, call or chat without scheduling your next meeting time.

• Consider caring styles. Instead of seeing one of your family members as more caring than the others—which can lead to competition, anger and resentment—make the most of your caring styles. Ideally, all of us should be the recipients of our loved ones’ touch, time, gifts, affirming words and acts of services. But it’s not necessary that we get them all from the same person.

• Don’t discount men. Do you constantly turn to your sister-in-law for help without considering that your brother might be willing and able to help with your parent? Do you bypass your husband, brothers-in-law, sons and nephews when it comes to caregiving requests? If so, you may have a wealth of untapped resources right at your fingertips.

• Consider finances. If a sibling has more money than time to offer your parent, ask her to pay for some of the services that you would otherwise have to do yourself.

• Hold your criticism. If you’re trying to gain the cooperation of siblings who either don’t do enough or don’t do things your way, you’ll have a lot better luck with praise and thanks (honey) for steps in the right direction than by criticism (vinegar) of what you don’t like.

• Consider talents and interests. Your sister is an accountant, your brother is a chef, your sister-in-law is a great organizer and your nephew loves nothing better than to drive his new car. Why not ask them to do what they do best? When you help match caregiving tasks to interests and abilities, you’re more likely to get cooperation from all involved.

• Look beyond siblings. If you need help with caregiving or simply aren’t able to be a caregiver yourself, feel free to look beyond your own siblings and “blood” relatives. Your parent’s neighbors, longtime friends or members of a place of worship are all good prospects. People don’t have to be related by blood to have deep feelings of affection and responsibility toward one another.

Show them the money. Though it may sound mercenary, it may take cold, hard cash to get some family members to help out with your parent. Your parent never needs to know that your siblings are being paid for their services.

• Consider their circumstances. If your sibling’s failure to help with a parent’s care is uncharacteristic behavior, instead of scolding him or her, try having a heart-to-heart about any problems he or she is facing. It just might start a healing process for both of you.

Joan: Alexis, what’s the most important advice you would give someone who is just starting to take over the care of a parent or spouse?

Alexis: The daily stress a caregiver endures can be devastating, especially if you’re considered to be the primary caregiver in the family and have limited time due to your job and/or other family responsibilities. The most common feeling “primary” family caregivers have toward aging loved ones is guilt.

Guilt can be destructive, making one feel tired, weak and immobile. No matter how much you already do, there are most likely times when you tell yourself that you could do better. Accept these feelings of guilt. Without recognition, guilt can be a destructive force. Know where these feelings come from and be aware that you are not alone in having such thoughts.

Joan: Guilt is such a big issue. You experienced it, and I know that I experience it in caring for my mom. You have some great tips to help us say goodbye to caregiver guilt. What are they?

Alexis:

 

• Acknowledge your feelings. Negative feelings can make us feel uneasy and guilty, but it’s important to understand that feelings of guilt, anger and resentment are natural and common. Unless these feelings control us, and our behavior toward our parents, they are not bad.

• Think quality, not quantity. If you’re feeling guilty that you aren’t spending enough time with your aging loved ones, think of how you can improve the quality of your time together. Spending time reminiscing with your mother or playing a game of checkers with your father, for example, may mean more than cleaning their kitchen or delivering a pot roast.

• Establish priorities. While no one has the time or energy to do everything for everybody, you must find time (and energy) to do the things that are most important to you. By establishing priorities—and allowing some flexibility for the unexpected—you can help ensure that the most important needs are met and the most important tasks get done.

• Set limits. If your loved ones’ constant demands are running you ragged, decide and clearly acknowledge what you are able and willing to do for them. By setting limits and standing behind them, you can help reduce the guilt trips that come when you can’t meet their every demand.

• Redefine your concept of caring. If you find it difficult to provide loving, “hands-on” care for your parent, don’t feel guilty—simply think of other tangible ways you can help provide for their care.

• Act from love, not from a sense of debt. If you think of caring for an aging loved one as repayment for all she’s done for you, you’ll always end up in the red. Instead, think of caregiving as one person helping another out of love.

• Forgive and seek forgiveness. If your parent was abusive or uncaring when you were a child, now is the time to forgive—even if you truly feel he doesn’t deserve it. Holding grudges will not only affect your ability to care for your parent, but it will also hurt you.

• Foster their independence. Don’t feel guilty for not doing things for your loved one that they could be doing for themselves. Instead, look for ways to help them do what they can. Something as simple as a $1.29 pill dispenser can help your parent become more independent—and can free up precious time for you.

• Face the facts. Despite how much you want to help, sometimes your aging relative needs round-the-clock care and constant supervision that you can’t provide. When that happens, acknowledge that someone (or some place) may be better equipped to provide the majority of your parent’s care than you are.

• Don’t succumb to peer pressure. Acknowledge, but don’t be unduly influenced by, the advice you get from friends and coworkers. Do what your heart tells you is best and what your circumstances permit.

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