When my children were younger I was a stalker. I didn't stalk in the negative, fearful way, I stalked to learn. I watched and followed with deep curiosity certain mothers whose children were a few years older than mine. These mothers eventually became my acquaintances, and we took part in the unspoken parent playground contract, which stated that sharing a baby wipe or a pretzel was ok, but there was no need to move beyond casual kindnesses. A few of these mothers and their families held my interest throughout my children's playground years. I silently marked time with them and from my park bench perch, with the smiles and nods of a compatriot, I welcomed their family additions, watched their children stumble and grow, and tried my best at mothering my own children.
What drew me to one of these mothers, whom I shall call Ann, was the way she addressed her children. Her voice was soft and kind and held immense patience. And in that voice she offered her daughters thoughtful suggestions, clear directives, healthy snacks and sometimes forced choices. Secretly Ann became my parenting role model. Thus, it was with great sadness that I noticed one year in the bloom of a NYC spring, as parents and children ran to the playground to renew their ties to the great outdoors, that Ann and her daughters were missing. I assumed that Ann's daughters had aged out of the playground and an after-school visit no longer held their interest.
Time passed, I found new park acquaintances, and all but forgot about Ann. And then out of the blue a friend called with a sad story about her acquaintance, a woman named Ann. It became clear that this was my Ann, and this friend, quite familiar with my work referred Ann to me. Thus Ann re-entered my life.
Ann, though not old, needed care because she was dying.
Ann told me about her illness and that she was expected to live less than a year. She explained how her path had taken a turn from the vibrance and health and workaday concerns of managing her life, to a tragic unfolding of events. As a single mother by choice, Ann had relied heavily on her younger sister who lived close-by. Ann told me that this sister had died suddenly, only a year ago. Still recovering from this loss, Ann received the news about her own health. Her daughters, already grown and living on their own, were the only relatives Ann had in the area and, although she had many close friends, none could feasibly become the full-time caregiver Ann needed now.
In this first reunion/initial assessment, I heard Ann, articulate and commanding as ever, tell me she needed to find someone to care for her, to be her companion until her death, the way a relative might be. She needed to find someone to touch her, to love her, to meet her heart and let it rest and she hired me to help. Although I knew that meeting Ann again was significant in some sort of cosmic sense, I was unaware of how deeply she would again touch me and forever leave her mark on me and on my work.
In my geriatric care management practice, it's customary to help my clients decide on the type of care they need, and to create and implement a plan on how to proceed. We engage in conversation in order to clarify a client's needs and priorities. Does the client want a caregiver who is warm and caring, or straightforward and business-like? What type of personality might they prefer, and what are their prior experiences with caregivers?
Ann spoke openly about her situation. She easily expressed her emotions and told me she felt tremendously frightened, vulnerable and sad. While listening to Ann, although sad and frightened myself by her tragic circumstances, I realized that I was hearing the same clarity and confidence, coupled with the kind and gentle manner, that Ann had shown with her daughters so many years ago. Ann, it seemed, was a person whose body was damaged beyond repair, but whose heart and mind were as connected and clear as ever. Throughout her life Ann had been an energetic and thoughtful planner. Now she wanted to use this energy to create her own unique caregiving situation. This is how she lived, and this was how she preferred to die.
As our work continued, I stressed the importance of carefully checking references, setting a fair and workable salary, negotiating days off and creating an employment contract. Again and again, Ann brought me back to what felt most important to her: open communication, sensitivity, fairness and patience. Ann wanted to be valued and respected as she entered a caregiving relationship where she would soon become dependent and needy. Ultimately I found it useful to name Ann's priorities and to delineate them from the more common set of practicalities. When I arrived at "Details of the Heart," this struck a chord with Ann. Combined with the practical aspects of "Details of the Contract," Ann and I were able to reach the balance in care that she needed to proceed.
"Details of the Heart" may be subtle, simple and obvious, but if lacking, the caregiving relationship may not feel satisfying. Ann so related to the list of "Details of the Heart" she recited it aloud to potential caregivers to gauge their reaction. Once she hired her caregiver, she revisited the details throughout the caregiving process. Ann's end came swiftly, sooner than expected, and she left her mark on me and all who cared for her. In her memory I share with you:
"Details of the Heart"
1. Please make eye contact with me, and look at me often. Don't ever make me feel invisible.
2. Please ask me before you touch my body, especially in sensitive places.
3. Please have a tremendous amount of patience with me.
4. Please tell me when you are worried about me, and why. Don't tell others first.
5. Please help me keep my mind active. Talk to me, read to me, engage me on topics that interest you and ask me about my interests.
6. Please remember that I am an adult, and ask me to choose how to plan my days.
7. Please call me if you will be late, or if you are sick and help me by calling one of our substitute caregivers. Remember that I cannot be left alone.
8. Please know that I will respect your privacy and I would like you to respect mine.
9. Please know that I thank you for caring for my body and my heart.
This post is part three in a series on caregiving for older adults. You can read part one, Mushroom-Barley Soup and Other Red Flags, and part two, Considering Caregiving, on Huff/Post50.
The writer was indeed blessed by this relationship.
Your article is wonderful and the Details of the Heart contract is supurb. Sometimes (especially when a terminal illness) the emotional and spiritual are needed more than the physical care.
I agree with you, and I'm glad to hear you learned about caring and supporting the "entire person" in nursing school.
I'm glad you feel the "Details of the Heart." represents some of what you learnend.
I agree about the importance of dignity and respect in all relationships.
My MIL died this month after a 9 year battle with Alzheimers. My BIL moved close to care for her. I begged to have her come to my state but she wanted the warmth of CA. We couldn't make it there nearly as often as we wanted and we feel very sad that she was mostly in the care of a professional caregiver.
It can be very, very hard and sad.
I'm sorry to hear about the death of your MIL. It's difficult for so many families to be together geographically, but there are so many ways a family can participate in the day-to-day care of a loved one. And hiring a caregiver is a very good solution for many families -- I have worked with so many fabulous private caregivers who are in touch with the families of their patients for decades after the patient passes away.