“Thanks, we’re doing just fine”: A Disenfrachised Caregiver’s Lament

February 21, 2012

By Jeanne Denney

The following article was recently published in The Forum, Journal of the American Death Education Counsel (ADEC) (Vol. 38, Issue 1 January 2012) and is reproduced here with their permission. In it I share some of my own current struggles as a family caregiver.

As a hospice worker, counselor and death educator, I am no stranger to death. People in my community consider me a resource for support as they timidly approach their mortality questions or are hurled headlong into them by bodies and life events. It is fair to say that I am one. I regularly sit at bedsides and guide discussions on topics ranging from DNRs to green burial, from grief to NDEs, from hospice to headstones, from death anxiety to conscious dying. But this year, as my 90-year-old father’s heart and lungs began more obviously failing and my 61-year-old sister suddenly began a fight for her life from a rare and aggressive form of cancer, I got a sharp reminder that community identity does not necessarily translate to distant fam¬ily. While dealing with my own family, experience with death and illness has been more detraction than asset. Knowing what I know without active participation in care is stressful.

Long-distance caregivers have lots of special problems. I am faced with many of the usual: anticipatory grief, desire to be involved, guilt that I can’t be, overcompensation for guilt, worry about care, travel difficulty, loss of family from my regular life, frustration with communication. All this unfolds while I work through life review and relationship closure on my own. But there have also been unexpected struggles: family members’ startling independence and reconsignment to a historic family role, in my case “the baby,” and second family. Although most families struggle with too few hands and eyes for care at a distance, it is also common to find family members like me who want to participate in care but, for one reason or another, lack opportunity. Old patterns in family systems can add pain to guilt about absence and, in my case, to a hospice worker’s knowledge of what is to come. In this care story, my issues with being a somewhat marginal “second family” comingle with distance and fierce family autonomy to frustrate finding a role in care. It is a perfect setup for grief, anticipatory and disenfranchised at once (Doka, 1989).

Oregon
My father lives 3,000 miles from me on the cheerful west coast. I live in New York. Like many people, my Dad’s chief strategy for avoiding death has been to deny it: “Don’t let the bastards get you down.” Hey, who’s complaining? At 90, on oxygen with CHF and pulmonary fibrosis, he is entertaining, mentally competent and social. He loves showing up at parties, amazing people with his stamina and humor. Dad has been remarried for five years. Both he and his lovely 80-year-old godsend of a wife, Betty, present as overly wonderful specimens of aging. I visit him every few months for a few days, as long as I can without losing income. The rest of what I offer is by phone. Betty is a strong advocate of presenting the positive and gives me spritely hellos on the telephone. “Oh, we are just doing great! Your father is just coming in from the garden, would you like to speak with him?” “How are you, Betty?” “I am great, just getting your father his breakfast.” Overseeing a large house, holding the center of an extended family and caring for my father, she is generally too busy to talk. The edge in her voice under the cheerfulness sometimes betrays fatigue. Unfortunately I know about the toll of care on caregivers (Fleming, 2003). I also know that long-distance family’s opinions can feel meddlesome to caregivers on the ground.

The roles for Dad’s daughters at a distance are different than for our local brother and step-sisters. We don’t pop in for coffee, struggle over the politics of dinners or dog-sitting. I come, stay for a few days, eat, talk, make a few careful suggestions, try to help with this or that and then leave again. In short, I am company. My desire and intent is always to give respite and participate in care. But though help isn’t outright rejected, it isn’t, well…so welcome. Instead, at 51, my family-appointed job is to be my father’s sweet little girl. “Just relax, you have such a demanding life out there in New York. We just want you to rest.” When we come, Betty cooks and hosts big family dinners, then collapses from fatigue after our departure. We challenge this status quo, but it usually adds more stress than playing along. As a result I am cautious about visiting at all. Meanwhile, on my end, nothing could be more uncomfortable than not participating in Dad’s care. Nor, frankly, does anything hit a nerve much faster than being re-conscribed to “sweet little girl” status in the prime of life. Something like the family pet, I was valued but not quite considered a real in the family.

My father gets on the phone. “Hello, gorgeous,” he says with as much enthusiasm as he can muster, “How is the love of my life?” He tells me that he has had a few great days, but was short of breath this morning. We talk about blood pressure, hydration, taxes and as many other details of his life as he remembers. We don’t talk of the agonizing episodes at night when he has chest pains, can’t breathe, doesn’t want to wake Betty, and doesn’t know who to call. I track my nagging feeling that they should have support for these more and more frequent occurrences. They should (by my standards). I know that with an in-home palliative care program, he will live longer and better (Goodlin, 2009; Beckelman, Hutt, Masoudi, Kutner, & Rumsfeld, 2008). But for them, this means giving in to illness, changing their newly made life together and acknowledging coming debility. Sometimes I tell Dad about hospice work and make suggestions. These uncomfortable conversations by phone usually feel like pushing through granite. He doesn’t understand hospice or palliative care. He doesn’t want to die or talk about it. He doesn’t want help or information. Meanwhile, I quietly ruminate that someone should be monitoring his oxygen and medications and helping with things like sleep and bowels. Betty, a diabetic, has given herself single-mindedly to his care for five years. I’m concerned about her health too and the energy my father’s care exacts. Is she really ok? Is he? By whose standards will I evaluate? So it is that we all work our anticipatory grief, trying to complete our stories as we might wish to have them.

Missouri
One thousand miles away, I offer what support I can by phone to my sister with cancer. A PhD in molecular biology, Mary has a brilliant mind for medical science that amazes the doctors treating her for a rare cancer of the blood vessels. They treat her like a colleague when discussing her case, which is at times a problem. For a left-brain scientist, Mary is receptive to talking with me about the psycho-spiritual aspects of my work with cancer. Still, I am conscious of the limits to what I can offer as a younger sister. I am vulnerable to remarks that take me back to feeling five again. Most of my “care” involves balancing a desire to share experience that might be useful with personal emotions and deceptively difficult detachment in the face of her illness.

I call my brother-in-law to check on Mary. She has had a particularly bad response to chemo that has landed her in the hospital with next to no immune system for a few days. Four months into their ordeal, her devoted husband sounds a bit shaken and drained. My husband, stopping in on a business trip, reports that the refrigerator is a bit spare; they might benefit from someone around to empty the dishwasher and just be around for cooking and emotional support. Feeling a little helpless, I send an article on support for care-giving and offer to come out for a few days. Often people look for support for when they are sickest. My sister looks at the chemo schedule to see when she might feel good enough for me to come. My brother-in-law, meanwhile, takes mild offense at my awkward gestures: “Just come to visit and be a sister,” he says reproachfully, “I don’t need help….and you have a busy life.” Perhaps because being the family inept wasn’t great fun, I find the “just visit” program hard to embrace. I don’t yet know what it means to be a sister without emptying the dishwasher, bringing tea or cooking a meal. I buy a plane ticket to find out and plan to do my best to be present and un-heroic, “just a sister,” without being a burden.

How complex it is. How tightly we clutch what seems precious: family roles, identities, our personal heroism, all that we’ve known. How impotent I feel. My sister’s brilliant rational mind, her sense that she has to take care of me and fear of receiving help won’t change this week or next. What my father wants most from me is not help to the bathroom, cooking or discussions about his care or the future. He wants to be received and admired for how well he is doing it. Admiring him (my job in the family) shores his identity even as it sometimes burdens mine. For now, though, it is apparently my only way of helping.

Meanwhile, I struggle to disable the narcissistic helper within, she who avoids helplessness and sorrow by being really needed. This family-honed strategy is harder to resist than ever. Still, maybe the clumsy ways I hang in for family, failures and all, is occasionally, unconsciously and by some miracle “a help,” whatever help really is (Dass & Goreman, 1985). Maybe showing up to awkwardly fail is love, even and especially while touching the familiar feelings of being a disenfranchised youngest child. I remind myself that this isn’t my ride. They are just fine. If my father dies in the night without an on-call nurse, calls 911 and ends up on a vent, or if my sister’s refrigerator is empty and the sink is full, well…they’ve done it their way. I have supported the dignity of their independence. But let’s be clear. Detachment mastered with others isn’t easy with our own families. We are so a part of the play.

Players on a human journey of grieving and loss, hospice workers or not, it is hard for us not to long for the unlikely happy ending to childhood sorrows at the end of a parent’s life. This experience is surely intensified by distance. I can’t help wishing someone would ask me to be just a little heroic and say “We need you. Can you come?,” “Could you do dinner?” or “Could you start some laundry?” Crazy, but given my history, I envy people healing old wounds by feeding their parent pureed foods three times daily. It is unlikely that I will have that opportunity. But like them, I sit vigil for the opening.

References

Beckelman, D., Hutt, E., Masoudi, F.A., Kutner, J.S., & Rumsfeld, J.S. (2008). Defining the role of palliative care in
older adults with heart failure. International Journal of Cardiology, 125 (2), 183-190.
Dass, R., & Goreman, P. (1985). How can I help? Stories and reflections on service. New York: Knopf.
Doka, K. (1989). Disenfranchised grief: Recognizing hidden sorrow. Lanham, MD: Lexington Books.
Fleming, D. (2003). The burden of caregiving at the end of life. Missouri Medicine, 100 (1), 80-84.
Goodlin, S. (2009). Palliative care in congestive heart failure. Journal of the American College of Cardiology, 54 (5),
386-396.
Morris, V. (2004). How to care for aging parents. New York: Workman Publishing Company.
Okun, B. & Nowinski, J. (2001). Saying goodbye: How families can find renewal through loss. New York: Berkley
Hardcover.
Rolland, J. (1994). Families, illness and disability: An integrative approach. New York: Basic Books.
Smith, C. (2006). Engaging the emotional, financial, and physical ramifications of long-distance caregiving. Home Health
Care Management & Practice, 18(6), 463-466.

About the Author
Jeanne Denney, MA, is a hospice worker and body psychotherapist in and around New York City. She offers death education in her community and teaches Death and Dying at Ramapo College of New Jersey. She has also served as Spiritual Care Coordinator for United Hospice of Rockland. E-mail: jdenney@email.com.

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10 Responses to ““Thanks, we’re doing just fine”: A Disenfrachised Caregiver’s Lament”

  1. Mark Brady said

    Seems like caregiving at the end of life presents us with similar challenges that caregiving at the beginning of life does: practice with living the profoundly self-examined life?

    • I was just thinking the same thing Mr. Brady, like it reminds me a bit of…parenting! To win while failing, or as Antonio Machado said “Our job is to die, to die making roads, roads over the sea.” (or doing the impossible). Thanks for your voice here.

      j.

    • Susan said

      Thank you for pulling this article out of the depths. I found myself nodding throughout, and even though I was not a youngest child I recognize in my own experience of long distance care giving such resonate themes.

      Somehow, just reading your words brings me a ray of warmth today. With gratitude.

  2. Barbara R. Smith said

    As always, Jeanne, your openess and honesty when discussing these sometimes painful and very real issues is an inspiration.

  3. Joan Hummel said

    Thank you for such a well-documented personal tale of trials and tribulations that so many of us experience but haven’t given a name to – it IS disenfranchising to have such a wide array of gifts in end-of-life care yet to not only be states away, but to also be in the position of knowing the expertise in hand isn’t what some in the family may want to face! My folks in their mid-80’s are in Idaho still rehabbing after a car wreck last summer, I’m in Colorado (along with a brother), and I am so grateful for my siblings who are nearby my parents and who have done an extraordinary job of managing their changing needs for independence and support. However, the guilt of being far away and unable to be “hands-on” wears at times when I spend my professional life being a hospice caregiver to everybody else’s family!

  4. Dear Jeanne,
    a wonderful article! Thank you for sharing it.
    Fritz

    • Fritz! How wonderful to hear from you! I bet you could relate to some of this Denney family dynamic. Dad passed away in early November. It was an event that actually had a lot of healing in it, and he was ready. Would love to connect in another venue. Much love to you and your family.

      Jeanne

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