Caring for our parents as they age is a job most of us shoulder willingly, yet with warring emotions. Despite our desire to repay the love they showed in raising us, the shifting dynamic of the parent-child relationship can spark feelings for which we are unprepared. For both generations, this is a complex passage—a time of burden and reward, of conflict and reconciliation, of frustration, fulfillment, and finality.
Fortunately, there's a practical roadmap through that complex emotional terrain. Drawing on AARP’s wellspring of expertise, "Caring for Your Parents" lays out proven methods for helping your aging parents live their lives to the fullest.
Step by step, co-authors and AARP experts, Hugh Delehanty and Elinor Ginzler, guide readers along an innovative and resourceful path to caregiving—a path that deepens the intergenerational bond, transforming an undeniable duty into a journey of spiritual growth and personal discovery. If you, too, are one of the 30 million Americans engaged in providing care to an older parent, relative, or friend, "Caring for Your Parents" is for you—and for your family.
As he neared the end his life, the American novelist William Saroyan quipped, "Everybody has got to die, but I always believed an exception would be made in my case. Now what?" Saroyan was being lighthearted, but his question—Now what?—could also sum up the purpose of this book.
The journey through the late years is likely to bring moments of uncertainty and even bafflement, not just for those making the passage but also for the caregivers helping them down the mysterious road. The specifics may vary, but every adult child taking care of an aging parent faces some version of Saroyan's question. What is coming next? How should I get ready for it? How do I cope? Along the way many difficulties will arise. Caregiving can tear you apart. After all, this is your mother or your father. And you are their child.
I think of my friend Rosemary. She spent much of her adult life trying to free herself from her mother, Arlene, a tough-minded, fiercely independent woman who raised five children on her own after her husband died in a plane crash. Then, one night when Rosemary was in her 40s, Arlene packed a suitcase and wandered away from her house in Brooklyn, hallucinating about a helicopter on her roof and men under her bed. She was later diagnosed with early-stage Alzheimer's, and Rosemary, who is a gerontologist, volunteered to become Arlene's primary caregiver.
It has been a wrenching experience. Rosemary moved Arlene to an assisted-living facility a few blocks from her apartment in Manhattan and tried desperately to communicate with her. At times Arlene would start screaming and lash out at her for no discernible reason. But, with the help of an Alzheimer's support group and a lot of persistence, Rosemary slowly learned new ways to interact with her mother, and their dynamic changed.
"When you are a caregiver, a lot of what you do goes unrecognized," Rosemary says. "Then there are times when the eternal mother-daughter roles dissolve. She's softened and I've softened. She's become the loving mother I've always wanted, and I've become the loving daughter I always wanted to be." (pp. 8-9)
The Pre-Talk Talk
Before initiating The Conversation, you'll need to make two kinds of evaluations: one about the relationship dynamics in your family and the other about how you parents are handling the routines of daily life. On the first score, take some quiet time to think about your lifelong relationships with your parents and siblings and how those can help shape your choices going forward.
Consider not only how things have been in recent years but also how they were when you were a child. The dynamics of how all the members of your family interacted back then may bubble to the surface again now. Were you "Daddy's girl"? That may be something you can appeal to as you open discussions with your father about what the future holds. Are you the eldest? Your parents—or your siblings—may look to you to carry the weight of a difficult situation. You may feel comfortable doing so, but consider whether it might be better in the long run for others to shoulder more of the load.
You and your siblings will need to pull together in coming years; if a foundation for cooperation doesn't exist already, it's crucial to establish one now. Indeed, there may be liabilities in your relationship with your parents that will make it difficult for them to hear what you have to say; in that case, it might be more productive for a brother or a sister—perhaps even a close family friend—to initiate the discussion. If it seems likely that tensions will run high, it can also help to have a neutral third-party present, such as a counselor or clergy member. (pg. 17)
The Organized Advocate
A little black book. The first things you should stock up on are sturdy spiral notebooks that fit in a purse or briefcase and small day-to-day calendars (or planners that incorporate both). You must become a note-taking dynamo, keeping track of daily appointments, medication schedules, phone numbers, to-do lists, and other bits and pieces of information. The book is also essential for taking notes on conversations with doctors and other caregivers, with dates attached. Keep the notebook with you, and refer to it often. As you fill one up, mark its beginning and ending dates, put it where you can find it easily, and start another. (pg. 47)
'Everything Has an Air of Strangeness'
In many ways, learning the reason for a parent's strange behavior can help. "Once we knew the diagnosis," Susan says, "it was easier to support him. Instead of making light of his memory lapses, we could validate what was going on for him. He would often come to me and say, 'Susan, I think there's something wrong with my brain. Everything has an air of strangeness around it.' I was stunned at how clearly that describes the state of mind."
Loath to distress their parent, many families struggle with the decision of whether or not to inform the parent of his or her own diagnosis. At one point, Susan thought it might help her father to know; she says, "I got a film to show him, then tried to prep him for it by asking if he had ever heard of Alzheimer's.
"He said, 'Yes, that's one of the dementias, isn't it?'
"I said, 'Yes, it affects your memory.'
"He said, 'Well, at least I don't have that problem.'
"So I decided not to show him the film, and we don't use the term 'Alzheimer's' around him." However, when a parent realizes they are declining, it is a good idea to explain that they have a disease—and that you will be working with their doctor to arrange the best care possible for them. (pp. 112)
The Art of Self-Preservation
As the following stories reveal, everyone finds their own way to relieve the stress of caring or their parents. Look for methods that work for you.
Isabel (60): The best thing is when another family member takes my mother out of the house for a meal, and to visit their family. It breaks up whatever tension may have developed in our house. People get cranky if they don't leave the house occasionally. It's the best possible thing for my mother—and for us. It gets her out into the world. And it give us the chance to relax in our own home—to talk openly and to have uninterrupted quiet and privacy.
Hannah (58): My parents are in a retirement home, where my 90-year-old father is caring for my mother, who has Alzheimer's. I go over there every day. For my own sanity, I go and get a massage every two weeks. I also make sure I go out with friends every couple of weeks. And I've hired someone to come in for an hour or two a couple of times a week so my dad can have some time for himself as well. (p. 161)
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