I have a chilling, sometimes recurring nightmare. All of a sudden I remember I have a baby. I've completely forgotten I had one. How could this have happened?
And worst of all, I haven't fed my baby or changed her diaper. She's still alive, but her very existence depends upon me. I take her to my breast, nurse her, change her, and she survives. And still she adores me in spite of my neglect.
-The Healthy Librarian-
I never understood the meaning of this disturbing dream--it started long after my kids were grown. Perhaps "the forgotten baby" represented my parents. Both had long illnesses. My dad had a major disabling stroke at 69, and he lived through additional strokes and seizures until he was 85. My mom's decline began with mini-strokes, a few falls, bone fractures, ending with vascular dementia and a disabling seizure.
My father-in-law might have been the lucky one. He passed away within a week of a devastating stroke at the too-young-age of 73. He had survived 2 open heart surgeries and a carotid endarterectomy.
I know too well about managing parents' daily affairs, finances, medications, doctor visits, emergency room visits, home care, nursing care, middle-of-the-night phone calls, walkers, wheelchairs, incontinence and all the rest of it. It's heart breaking, challenging, difficult, and one of the hardest things I've ever done.
Worries about my children were "kid's stuff" compared to worries about aging parents.
The Dream Returns
In June, after a long absence, my "forgotten baby" dream resurfaced. I still didn't understand what it meant or why it had returned. It came soon after my mother-in-law was scheduled to have a suspicious-looking cyst biopsied. What started out as an annoying infection, has turned into full-fledged ovarian cancer and chemotherapy. All this happened so quickly, and just a week before her 85th birthday. One day she was fine--two weeks later everything has changed. It's cruel and unfair and yet it hits all of us sooner or later. First you're the caregiver, then you're the care receiver. No one is immune. Whoever said, "Old age isn't for sissies!", spoke the truth.
If you're single you'll likely have two parents to care for. If you're married you'll likely have four. This is my Fourth Act and I can't quite believe it has reared its ugly head again. Who is ever prepared for illness?
I can't bear to see my mother-in-law, our "healthiest parent", who is a 40-year survivor of breast cancer and a 10-year survivor of major spinal surgery, go through this. She's a sharp-as-a-whip, sociable lady who loves to keep busy with travel, theater, classes and twice-weekly mah jongg games. I can't bear to see my husband go through the illness of a parent who lives out of town. I can't bear to have my sister-in-law, who lives near my mother-in-law, shoulder all the daily responsibilities.
A Doctor's Experience
Dr. Jerald Winakur, a geriatrician, speaks as frankly as it gets about his own experiences caring for his aging father in his essay, "What Are We Going To Do With Dad?", published in the medical journal Health Affairs. To read the entire essay, click here.
"From my years as a geriatrician and now as the son of an "old old" man, I recognize that there is but one inescapable truth: Our parents will become our children if they live long enough. Perhaps if we looked on our elderly in this way, we would be kinder to them. They will become dependent on us, our stronger arms, our acts of gentleness and caring. We will arrange for their meals, pay their bills, take them to their doctor visits, sit by their bedsides at the hospital and in the nursing home.
I don't know what else to do for Dad at this moment, but I know what is likely to happen to him if he does not die in his sleep, a heaven-sent coup de grace that from long experience I recognize is unlikely to occur. There is always a great struggle in the end. One day I will get a frantic call from my mother that he is on the floor and she cannot get him up and he is crying out in terrible pain. Wherever I am, I will drop what I am doing and race over there and find that one of his legs is shortened and externally rotated. His hip is broken. From the wall phone in my parent's kitchen, I will call my brother and I will tell him all the reasons why we should not send him to the hospital:
- He might not recover from the surgery-indeed, might die on the table given his bad heart.
- But even if he does survive, he will spend days in the ICU, probably on a respirator, until his heart is stable. And then he will be constantly confused and agitated.
- I don't see him ever being able to cooperate with physical therapy.
- At best he will end up in a nursing home, bedridden and at the mercy of overworked, underpaid aides.
- He will descend deeper and deeper into disorientation and delusion, require medications to keep him from harming himself, and die anyway in a few months--or perhaps even a year or two if he is unfortunate and the care is better than average."
It's sad to say, but from my own experiences, Dr. Winakur's words ring pretty true. I'm not quite sure how to avoid that route-nor could Dr. Winakur. His articles (see below) are a plea to start a national conversation.
After Dr. W's father died, he wrote a follow-up essay in Health Affairs, called "Dad's Legacy". If you're interested you can read it here.
The Experiences of Others
To read more about the challenges of caring for elderly parents I recommend Jane Gross' new blog in the New York Times. "In The New Old Age, Jane Gross explores this unprecedented intergenerational challenge and shares the stories of readers, the advice of professionals, and the wisdom gleaned from her own experience caring for her late mother in her waning years."
From a previous Happy Healthy Long Life post, some words of wisdom from Michael Kirk, the producer of the PBS documentary Caring for Your Parents:
- I've watched caretakers take on so many burdens that their own health is jeopardized, and I've also seen wonderful transformations where children & parents talk, really talk, for the first time in their lives.
- I saw love in action. I saw that the caregivers who could transcend their own needs (a lot of the time) were the beneficiaries of a very positive experience-and so were their parents.
- I also saw the effects of stress and emotional strain on the health of caregivers. It is too big a job for one person.
- Bring patience and your best self to the task. Take care of yourself physically, don't believe a magical transformation is going to take place and start with the realization that as long as your parents are capable of making decisions they should be allowed.