My story began with my return to South Florida and the doctor's assurance that Mother had but two months to live. Not knowing that I would be there for ten weeks, ten months or as it worked out, ten years, I began touring all the nursing homes and continuing-care retirement communities in the area, I found over crowding, long waiting lists and, from the best homes, more interest in our family assets than my mother.

Caring for my mother had been my grandmother's main objective in life, and together we continued her home care for an additional sixteen months. Because we wanted to prevent the inevitable, at the end Mom was rushed to the hospital and both Nana and I felt guilty we hadn't honored her final request to die at home. The panic of the visiting nurse, the arrival of the ambulance, the rush to the hospital, and Mom's admission into intensive care were so hectic and confusing, after the luxury of home care, that we never said good-bye.

Nana had often expressed her opinion that children and the frail elderly were two groups most in need of the important values of family and home. It became obvious that Nana's ability to remain at home would now be in my hands. She had never been seriously ill for a day in her life, and I was now cast in the roll of caregiver to insure her continued well-being.

For the first few years Nana was somewhat independent, but after she fell and broke her hip the resulting trauma of surgery and the anesthesia left her permanently demented. The very week of her accident, Medicare had shortened the paid time allowed for hospital care and the staff advised an additional week. I spent days with the home filling out forms and arranging details. The morning of her release, the nursing home failed to pick up Nana from the hospital. When I called assuming they had just forgotten her release date, I found that the nursing home staff had denied her admission, based on their incorrect assumption that I was deserting Nana. What really made me angry was their decision to say nothing to me or to the hospital, forcing us to cope with last minute substitute arrangements. The hospital and medical supply houses flew into action, my stress level went sky high, and by noon Nana was home.

There was no time to dwell on the apparent roll reversal of Nana as care recipient and mine as caregiver. The androgynous factors inherent to caregiving weren't a problem for my male nature. By confronting her deterioration, I understood that all the care I was giving would never restore Nana to good health. As the dementia set in and the frailty took over, I was getting a certain amount of emotional satisfaction from caregiving.

The lack of professional advice and the necessity for me to remain at home with Nana were the worst aspects of home care. Our doctor felt that, if caregiving was becoming too much for me, I should institutionalize Nana. Without any help from him, I arranged private home nursing. The first nurse was very helpful and well worth the $40 an hour I was paying. Talking with her, I saw how isolated caregivers become and how much we benefit from professional home care advice. Nevertheless, after that first visit I never saw her again. The next group of home health aides weren't very interested in helping me, the caregiver, and performed their duties only for the benefit of the patient. I was torn between leaving the house and grabbing some respite or staying home and observing their techniques.

When the money ran out to pay for private support, I swallowed my pride and tried to plug into the public sector. Wrongly assuming that home care relief was already well established, I was dumbfounded to discover that public home care assistance had almost nothing to offer. Due to a maze of budget cuts, no available funds, and cracks in the system, what little help was accessible didn't translate to our economic level, It was my fault because I lived with the client and paid all the bills, therefore placing us over the home care cutoff limits. While we didn't qualify for home care coverage, local authorities offered to pay $2,000 a month for institutional care. By advising me about existing institutional policies, all agencies thought they had addressed my long-term needs. The dreaded move toward institutional dependence seemed to be the only solution while long-term home care still waited for policy support and policy action. Certainly I was not receiving encouragement from outside sources to continue caregiving. If long term care was to continue for Nana, then I knew self-education was my alternative. I read every book written on home care, I spent all my free time telephoning any likely source of home care information, I rented video lessons on nursing, organized caregiver support groups, completed a Red Cross training session, and eventually established a comfortable home care routine.

As the aging process built toward the undeniable end, I was able to ease Nana's final years by becoming more informed and acting as her personal understudy to society's inadequate long term home care policy. I knew the end was near. There were numerous little signs. Nana wasn't lucky enough to have a detectable illness; she was just old, and the doctor could not write the six-month prognosis that would bring hospice to our door. I needed every ounce of fortitude to persevere.

Rather than being authorized with or awarded assistance, the disordered and deficient policies on long term care made me feel deserted. After so many frustrating years, I was afraid the reality of long-term home care had penetrated my personality and abandoned me to bitterness.

The day Nana died I was alone with her, and nothing short of a miracle occurred. Holding her hand she smiled, and in a remarkably clear voice said I would be blessed for all my care and devotion. As she departed this life, all the anxiety and frustration I had felt departed too. The angst of my caregiving years vanished. I had never experienced such abundant adoration and comfort. Her words came true. I had been blessed. How else could I explain the overwhelming impression of my being a family caregiver, thereby ensuring the gatekeeper function, so that when my loved one left this world I became what I had given? Personal consolation was a priceless and unexpected reward. Then I called the doctor, who expressed his sorrow and told me to call the funeral home. This I did. When the hearse arrived the attendant's first request was to see the doctor's death report. I had only spoken to the doctor on the phone and had no report, so the attendant called the police. When the authorities arrived they treated me like a suspect in Nana's death. rAfter ten years of total home care, in the eyes of the police I had murdered her. I was questioned for hours, she was examined, all because I had never been in this position before. When the police discovered no hint of foul play, the neighbors were called and vouched for my long term home care dedication. Reluctantly, the authorities relented and looked at me with new respect. as offending as this episode was I witnessed it with complete and sympathetic understanding. The confusion seemed appropriate to any outsider dealing with the final chapter of unsupervised long term home care of the frail elderly.

Even though I felt personally rewarded and complete, the system wasn't finished with me yet. I didn't qualify for my grandmother's social security death benefit, my own social security record now had a ten-year gap in unpaid contributions, the caregiving interrupted my professional resume, and I wasn't qualified to seek employment within the health-care system. Nowhere were there incentives for the home caregiver. What benefits the caregiver receives don't come from the outside. I graduated into the emptiness of economic devastation, forgotten efforts, and no formal acknowledgment. Yet with or without help, caregivers will continue to guard their own frail elderly, and government-supported payment mechanisms for institutionalization will continue to minimalize components for home care alternatives. Why? It is because the love of family and the personal rewards of home care are not included and supported in the planning for a growing, frail elderly population. Incorporating the needs of the caregivers who are willing to help their elderly friends and family members could synthesize the entire long-term care campaign.