Hospice care, gentle and loving, comes into the home and lightens the suffering

July 18, 1995|By ELISE T. CHISOLM

They came in like angels but without wings or halos. To help. All were imbued with medical know-how and loving hands for the sick.

Quietly, seemingly effortlessly, a young nurse so pretty, so natural, that it seemed as if she belonged there, sitting, talking, on the den sofa, like just plain folks. Everyone spoke of gardening, fall flowers and the heat; chitchat, just pleasantries. That is, after she had introduced herself as the hospice nurse from Union Memorial Hospital. A downtown place, but now they would bring the care into the house.

The doctor said he was sending the very best hospice people. And the bad news -- that the cancer of the bone had spread and the disease was now very progressive.

Quietly the nurse picked up the phone and gently ordered a hospital bed, a trapeze for the bed and equipment for a sick room. Just as calmly, another nice person brought the equipment and hooked it up and placed the things where they looked best. The day was Aug. 9, last year.

A volunteer, a splendid man, would come for a few hours one day a week to allow the care-taker to get out. A physical therapist would come and try to get the patient to move his legs. A home health aide, another angel with a smile, would come three times a week to bathe and assist.

The nurse took notes and gently interviewed us, and we in turn interviewed her.

How did she ever get into this, I wondered as I listened to the interchange of words, and then I wondered how did WE ever get into this? I looked around the room as if from a distance or through a glass darkly. I wondered how faithful will these people be who have been sent here to show us that dying can be made easier than we'd anticipated?

At first I was frightened.

Then, I thought, how amazing that life can change so quickly as new roles are assigned to ordinary people overnight. A role, I have to say, we'd never practiced or imagined.

The patient, my husband, had fallen three times and broken his cancer-ridden back in four places and damaged both legs. He was now confined to a bed.

After 11 years of battling cancer and some wonderful months of wellness, he was now losing the war. The doctors projected that he had about six months to live.

Later, after the first reaction to this quake-like shock, we embraced and whispered, "We've beaten it before."

Then I went to my room, closed the door and cried. Then I implored, petitioned and bargained, shook off my raging emotions and became calmer. I went back to the den where he lay happily talking to a neighbor from his hospital bed. No tears in front of him now, please, I begged myself.

If you've never had hospice or if you don't know about it, there are hospice programs all across the country. The National Hospice Organization reports that about 300,000 patients were treated with hospice care in the United States last year. The movement is an old concept that started in Europe as a place, a building, to go to die.

Now, the hospice movement has new edges and perks. Hospice can give in-house patient care. Most hospitals have a hospice program and facility. It is less expensive to give hospice care in the home than in an acute-care hospital situation. But sometimes the terminally ill have no one at home to help, and there are still independent hospices for the terminally ill.

In Baltimore there is the Joseph Richey House. There's Stella Maris Hospice, which has both at-home and in-patient care. Hospice of Baltimore, which is affiliated with Greater Baltimore Medical Center, has begun construction of the Gilchrist Center.

According to national reports, hospice is becoming a business, too, as people are living longer and the cancer rate is up. And then there's AIDS.

But back to the den. The hospice team made us feel that dying is not the worst thing that can happen. Suffering is.

Like rolling back the storm clouds on a summer day, hospice took away some of our dark anxieties. By seemingly magic management and morphine, suddenly the stormiest of days seemed brighter. A touch of the hand, a hug from caring people, showed us how pain control is hospice's maximum concern, and it worked.

Hospice is a philosophy for life, too, but it is not about prolonging life. It brings to the living who stand by and watch a sense of honesty to the illness, silver-lined with deep compassion.

Dying is part of life. I knew that.

So with grit and grace, together my family and hospice saw him through infections, shingles, symptoms and more symptoms while we struggled through a long, arduous winter.

It was a crying time and a laughing time as family, hospice and patient got to know one another better. The ending, or was it another beginning? In January, the new year became brighter. He got better, the therapist taught him how to walk again.

Hospice called and congratulated us. We had graduated from hospice to the hospital's home care program. He was not smug. He is not cured. We started counting our blessings, and we still let each day count.

For us, knowing hospice support is out there is like having a life-line.

I miss our "dream team." Just for now we have a sunlit space on our summer calendar.

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