Our lives changed drastically on February 17, 1992, at 5:00 p.m., when my aging, independent mother fell in her South Texas home and broke her hip. She dragged herself fifteen feet across the room to call her son and daughter-in-law next door for help. This feisty, 92-year old woman had driven herself to have her weekly shampoo and set and had bought her groceries only that morning. In the process of pre-surgery examination for hip replacement, the orthopedic surgeon uncovered a lump in Mother's breast.

Mother had thought that "large knot was arthritis." Her primary physician (a relationship of ten years!) had seen her at least four times a year and had either ignored or neglected discovery of this growing mass. Mother was lying in that hospital bed in excruciating pain, waiting for hip replacement. A surgeon who was called in for consultation examined Mother and said, "Yes, it's probably cancerous and we'll have to do a mastectomy." She heard "cancer" her mind was closed to hearing any more. The surgeon was so insensitive that he saw her only as his next scheduled surgery ... not as a total person with emotions and other problems confronting her. He displayed no regard for her present condition - in pain and waiting for relief.

Can you imagine? A woman is faced with relearning the skills of walking - with the aid of a walker- at 92; suddenly she learns that she has to learn to walk with a walker with the use of muscles of only one arm. Not only that! Maybe the cancer is going to kill her, anyway. Why would she be motivated to endure the agony of learning to walk, if her days are numbered? My husband, our cat (SweetPea), and I flew to Texas from Pennsylvania. My brother and sister-in-law, my husband and I regrouped. We discussed, we argued, we agonized- we researched, and we discussed more; we called a halt to the mastectomy scheduled four days after the hip replacement. We called in an oncologist who said "Yeah, it's a sizable mass. Yeah, it's probably malignant, but it's probably been growing slowly for years. Given your mother's age and the circumstances, I think we can approach this less radically, let her learn to walk, build up her strength, and keep a watch."

After the hip replacement, Mother was sent to the hospital-owned long-term care facility next to the hospital, ostensibly for rehabilitation and recovery before her lumpectomy. Assured that she was on the mend and with promises of excellent care, my husband and I flew back to Pennsylvania. Three days later my sister-in-law called to say that the promised physical therapy had not happened, that Mother was bedbound, that the lumpectomy was not scheduled. I waged war with physicians and the nursing home by telephone and by fax machine. I asked the orthopedist if Mother had been placed in that nursing home just to die. The next evening I was back in Texas, raising a ruckus in that South Texas medical community. Physical therapy began. Mother gathered strength. Her lumpectomy was performed, removing a great deal of affected tissue without the mastectomy. Yes, malignancy was confirmed as the dreaded reality. Given the option of being transported by family car or by ambulance to the rehabilitation hospital an hour away, she chose the backseat of her own car driven by her daughter, accompanied by her daughter-in-law, with her son following behind in case of trouble.

The rehab hospital was surprised by her arrival. Somebody at the referring hospital forgot to mention that she was coming. A place was found for her, and her medical watchdogs celebrated at lunch. We naively believed the worst was over and that our family would be whole again. That Mother would never return to her home to live in matriarchal independence became obvious during her 30 days of rehabilitation. We decided, and Mother agreed, that she would live with my husband and me in Pennsylvania. The team of four (son, daughter, and spouses) began the heartbreaking business of sorting a lifetime's accumulation of treasures, household supplies, appliances, and equipment, and ... stuff. Mother adamantly refused to participate. She refused to enter her home of sixty-two years or to take part in the sorting of "keeps," "sells," and "discards." We sold her household belongings; we sold her home; we sold her car ... symbols of her aged widow's independence.

During the month-long chapter of dismantling the old homestead, Mother, my husband, and I stayed with my brother and sister-in-law. The steadfast team of four shared cooking, tears and laughter, and taking care of Mother. We argued, discussed, and agonized some more! (How many daughters-in-law would welcome such an undertaking in their homes?) Caring for Mother became the vehicle for her adult children and their spouses to build a strong, loving relationship. On June 1, 1992, Mother, my husband, SweetPea, and I settled into our Silhouette mini-van for the four-day drive to Pennsylvania. The mighty sad team of four caregivers had hugged, kissed, and held each other a lot - no more arguing and discussing. The decisions were made. We had decided the junket from South Texas to Pennsylvania would be a more gradual and more interesting transition by car. Mother enjoyed traveling, restaurants, scenery, and the cat on her lap. She did get a bit testy when we urged her to exercise. Surely you'll know I do not jest when I say that learning to live together during the last year and two months has been a challenge!

The last eight months of caregiving have been more manageable because of the support of the original chapter of Children of Aging Parents (CAPS), Levittown, Pennsylvania. The once-a-month caregivers meetings continue to offer excellent resources, counseling, and hugs. Cancer has blemished the quality of Mother's life. Her breast cancer is progressively metastisizing in her bones (her right thigh, right hip, right arm, chest, ribs, vertebrae, lower back, and possibly her left hip). The pain continues to increase and to plague her. It has become apparent that the cancer had spread to her bones - even before the lump in her breast was discovered. The main focus of her medical care, now, is on pain management to keep her as comfortable as possible. She participated in a splendid hospice home care program in Newtown, PA. Her medical team, led by a geriatrician, included a nurse's aide, an R.N., a social worker, and a small legion of related staff members. They provided medical, physical, and emotional support for Mother and me - around the clock, if need be. For three months, Mother attended the adult day program two or three days a week. There, she could be monitored by trained staff members. The outside stimulus provided a social nucleus outside her lonely concentration on pain and depressed anger. We had some of our best times during her involvement in the adult day program.

Recently, Mother's own daughter hung up her Superwoman cape. Mother's physical needs command more than one person's full time care and more monitoring than I am trained for or am equipped to provide. Her crises are coming closer together, now. Dealing with my own small crises was becoming oppressive. An uninterrupted night's sleep was only a memory. I'm tired. Mother is now in a carefully chosen skilled nursing facility only six miles away. Once again, CAPS provided guidance and support in the research and selection process. My life has been on hold for more than a year and a half. Since I have relinquished primary caregiving responsibilities, our time together can be quality, loving intervals. We look at family photos, add pictures to the photo albums, share memories, add get-well cards to her scrapbook, and play with the resident rabbit whose name is Chester ... good times ... times of which memories are made.

The overwhelming truth is that this immeasurable pain (from metastitis) need not have been. Had the arrogant, busy-busy physician in Harlingen, Texas, been more responsible and given Mother an annual physical (including breast) examination, I believe the end of her life would have been more meaningful, less depressed and less painful. I'd like to sue him. I'd like to scare the socks off him. I need my time and energy to take care of Mother. Money isn't going to take away Mother's pain, or mine. I'll send him a copy of this article, instead. Watching Mother die from the ravages of slow moving cancer is heartbreaking (My heart literally hurts). She would have preferred, I'm sure, to die planting her spring garden or baking a twenty-one pound turkey at Thanksgiving in the 94th or 95th year of her life. Instead, she is shrinking, shriveling into herself.

This is a poignant story about real people and real pain. This could have been prevented and this story wouldn't need to have been written.

Barbara Thexton, Yardley, PA August 23, 1993
With the permission of Children of Aging Parents (CAPS). Taken from THE CAPSULE - Vol. 9. No. 5 1993.

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