Hospice – Marilyn R. Gardner

On Saturday, my youngest daughter, my mom, and I shared laughter and joy in an unlikely space – a women’s fitting room.

We began with tea and decadent sweets at a European tea house and restaurant. In an elegant space we sipped our tea while whipped cream, chocolate, raspberries, strawberries, almond cream, and meringue mixed together in fruit tarts, chocolate mousse cups, and Viennese Torts. It was delightful in every way.

Satisfied and full of whipped cream we headed off to shop for dresses for my mom. Some may say that dress shopping after whipped cream is not a good idea. They would be wrong.

Earlier in the day my mom looked at my dad and said “I’m going to buy a dress.” She added, slightly defiantly “I might even buy two dresses!” He looked at her from his recliner, nodded, and without hesitating said “One for my funeral and one for your birthday.”

Just one day prior, my father had officially gone on hospice. Hospice – where you know the end is near, but you don’t know how near; when what you’ve done all your life to keep as healthy as possible changes. Instead, you weigh the options with the goal to be as comfortable as possible as you journey toward the end.

It doesn’t matter how much you have sat and talked with friends who have lost parents, when it happens to you, it’s all new. It is a new map with a final destination. The stops along the way are sacred and hard. They include both hard talks and soft moments; funeral plans and sipping tea.

So this weekend held the hard and the soft. The tea, whipped cream, and dress buying was the soft.

We marched in to the store with a purpose: Two dresses. One for a funeral. One for a birthday party. My daughter and I scooped up florals and plains, ones with little jackets and others with none; navy, teal, tan, and burgundy. We loudly found the fitting room and the fun began.

The old clothes came off and the new were tried on. Over and over we erupted into oohs and aahs followed by laughter.

“That’s beautiful Grandma!”

“Well, it would be if it zipped up.”

“Oh.”

“Try this!”

“I look like an old lady!” (My mother is not old. She is 89.)

All three of us looked in the mirror. Three generations stared back.

“You’re right! You look like Grandma K!” (Grandma K is my maternal grandmother.)

“And I look like you!” (That was me looking in the mirror.)

“And I look like Marilyn!” (That was my daughter looking in the mirror.)

We women know what it is to watch our bodies change. We have watched this all our lives. We see ourselves in mirrors and sigh, even as we know that mirrors can never tell the true story of our bodies; will never reveal true beauty. True beauty is revealed through the eyes of another.

Women’s fitting rooms can be horror shows or sacred spaces. When we are alone with our own thoughts and imperfections, it’s like watching a horror show unfold. The aging female body, with its bulges and bruises, scars and wrinkles does not do justice to the lives we have lived, the loves we have known, and the sorrows we have wept over. But when we are with those who love us and see us through the eyes of love, those horror shows become sacred spaces of laughter and love. Each bulge and scar is a badge of honor, for battles won – or lost, but at least fought.

The same is true as we walk through death and the dying process. It can be a horror show or a sacred space. We, along with the person dying, bear witness to bodies that betray their owners. We can no longer laugh about bulges and scars, because each breath is a labor. But when we walk this same journey and see it through the eyes of love, it becomes a sacred space, a sacred journey.

My mom now has a funeral dress. When she put it on my daughter and I gasped and said “You look like the queen!”

The truth is that I wish she would never have to wear it. I wish that life didn’t include death. I wish that all of this was easier. I wish our world wasn’t broken. I wish there was no Aleppo.

But my wishes will not make it so. Instead, I will choose the sacred space. I will walk this sacred journey with all the love I can. And while I do I will drink tea, eat whipped cream, and thank God for the joy of generations in a women’s fitting room.

In an appropriate follow-up to yesterday’s post, Jan Klingberg takes us into the realities of hospice care. Hospice care is often misunderstood and I’m grateful to Jan for giving us first hand information about this important service.

Kristine’s husband, Gerry, returned home from the hospital with end-stage cancer after his doctor bluntly told him to get his affairs in order. The family panicked. How would they manage? Especially with twin preschoolers at home.

During many years as a communications and fundraising professional for a hospice program in Illinois, I have seen firsthand the challenges of life-threatening illness—for the patient and family alike. When treatment becomes futile at best, hope for a cure disappears and hopelessness can set in.

But what if instead of being hooked up to machines in the hospital or going it alone at home, your loved one could be cared for in a program that would reawaken hope—a hope for comfort, peace and dignity …

Encircle you and your loved one with care and support tailored to your needs,
Arrange for the delivery of a hospital bed, supplies and medication,
Visit your loved one regularly to provide medical care and other treatment to ease pain and discomfort,
Be at the other end of the phone 24 hours a day, and
Support you when your loved one is dying and for months afterward.

Our hospice program became Kristine and Gerry’s lifeline that made their last weeks together bearable. A team of professionals and volunteers surrounded the family with a multitude of services and strong support. Medical care addressed Gerry’s pain; counselors helped Kristine journey through her despair over losing her husband; social workers helped the extended family work through some tough issues; volunteers ran errands and shared babysitting shifts; experts in children’s grief worked with the twins and coached Kristine. And even when Gerry’s pain soared out of control at home, he was able to spend a few nights at our specialized hospice inpatient unit where 24-hour nursing care helped stabilize him.

Were the family’s last weeks together easy? Of course not. But they were transformed into a manageable journey that allowed Gerry to die comfortably at home, his wife and kids at his side. He was reassured to know that after his death, Kristine and the twins would be carried through their grief rather than being left alone with their terrible loss.

In the years prior to my retirement last fall, I became aware of many stories similar to Kristine and Gerry’s. The overwhelming emotion of family members after the death of their loved one was gratitude—for providing support and restoring hope. And I don’t believe I ever heard anyone say, “We called hospice too soon.” If anything, many were disappointed that they had waited too long before engaging a care system that could surround them and their loved one with what they needed to live life to the fullest in the time that remained.

Hospice has been a lifeline to thousands of people around the world for decades. The modern hospice concept actually got its start in the late 1960s in England where specialized care for the dying showed dramatic improvement in symptom control. This new unique blend of medical, emotional, spiritual and psychosocial care—palliative care—comprehensively treats the person rather than solely the medical condition.

Then amid the phenomenal medical advances of the 1970s, dedicated healthcare professionals and community volunteers in the U.S. saw the need stateside for an interdisciplinary and compassionate approach to end-of-life care. From the first U.S. hospice program in 1974 to the current 5,000+ programs nationwide, hospice professionals have relieved pain and suffering day after day, year after year. My own family—mom, dad, aunt—were cared for by hospice programs in other states. Though they operate slightly differently from the one I worked for, they have the same core belief that drives the care they provide—everyone has the right to live with dignity until the last moment.

A long-time friend—a control freak who lived alone and had every loose end tied up—said when she became one of our patients and entrusted her care to my colleagues, “It is such a relief knowing that I don’t have to manage alone anymore. These people know what they are doing … they’re the pros.”

When a loved one has a life-threatening illness and the prognosis becomes months and not years … when the goal for care becomes comfort and symptom management … why not choose the hospice experts who promote quality of life until the very end of life?

AUTHOR’S NOTES:

The National Hospice and Palliative Care Organization (NHPCO) has a wealth of information about hospice care and can help you find a program near you.
The NHPCO service, Caring Connections, offers resources for advance care planning, caregiving and living with a serious illness.
A high percentage of hospice programs are certified by Medicare. This means that they have core services provided by a hospice team (physicians, nurses, nurse’s aides, social workers, grief counselors, chaplains and volunteers) and can receive reimbursement for the care of a patient who has Medicare Part A. Many private insurance companies and state Medicaid programs have modeled their payment systems after the Medicare Hospice Benefit, so the costs of care are covered for most patients who are eligible for hospice.