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Hospice care as seen by a grateful daughter

by Carol Bradley Bursack, Editor-in-Chief

The decision to place a loved one on hospice care is very difficult because we must first overcome the denial of impending death. Both of my parents had hospice care. That's when I learned first hand that no one should have to die in pain. Overcoming denial was a small price to pay for this result.

My dad's body language told those of us who knew him well that he was in pain. As he reclined in his bed, he'd raise himself on an elbow and pound his fist into his opposing hand, grimacing as he did so. Over and over he'd slam fist into palm. He was trying to beat away the pain. Still, we saw the pain even though he couldn't articulate it. I talked with the nurses and they all agreed with me that hospice was the next move. He was dying in a manner that was unacceptable.

The head nurse pushed the doctor in charge to approve hospice care, but he refused. Because Dad was in a nursing home and on medications, he slept quite a bit. Some days he slept too much. It was fitful sleep, but the records kept by the nursing home said he slept. After checking the records, he said if Dad slept that much he couldn't be in pain. This doctor swept through the nursing home once a month (a nurse practitioner was there once a week). He read the records. That was that.

The nurse, however, was not one to back down and one day, while I was working at my job as a news librarian, I got the call. The doctor finally authorized hospice care. I was thrilled in that I knew our local hospice, Hospice of the Red River Valley, was one of the best. True, I was sickened in that I knew then we'd all have to admit that, yes, Dad was dying. But I knew it was time.

Accepting a Loved One's Impending Death

When hospice called me at work, they offered to come to the newspaper library so we could do the paper work. Within an hour, a nice young man and I sat at an old power file full of dusty, historical news clippings and filled out the forms necessary to get Dad on hospice. In my naivety, I asked him if Mom could be spared knowing Dad was going on hospice care. He kindly, but firmly, said no. She would get support and as much help as she needed, but she would be told. Their chaplain would be there to help her through it.

Mom and Dad, who'd spent many years in private rooms at the same nursing home, were together in one room for their last months. The hospice volunteers, the nurses and the seamless coordination between the nursing home and hospice, I had yet to witness. I was simply worried that when Mom knew Dad was on hospice, she would be upset.

She was upset, but they were right. The chaplain helped her accept the truth. Once hospice took over Dad's primary health care, shared with the same nursing home staff he'd had loving care from for years, he was peaceful. Even Mom came to accept that his death was inevitable and that he was now much more comfortable. She said, "I want that when it's my time."

Dad died in my arms a couple of months later. As his body let go, I felt his spirit with me, alive and whole, for the first time since he came out of brain surgery--demented--a decade earlier.

Dealing with Hospice Care a Second Time

Mom's time came a few months later. Her pain was not helped by anything the nursing home could provide. This time, getting hospice care was easy. It's was obvious to everyone that Mom needed it, and I'd been through the paperwork before. When I met with the hospice people, we went over her unique needs and her care began. Hospice gave her a bone cancer drug and she was out of pain for the first time in many years.

Eventually, my little 85-pound mother lay dying in her bed. My sister and I sat with her day and night. Every part of her was dying but her heart. Her limbs were mottling, but her heart wouldn't quit.

I saw, once, that her color changed dramatically, and she didn't seem comfortable. When this happened, I ran for the nurse, who then called hospice. It turned out the nursing home wasn't giving her a drug that had been ordered to ease her breathing, as they didn't think she needed it. She did need it, though for a less obvious reason. Within minutes of the shot being administered, she relaxed and was serene. It took three days for her heart to give up, but my sister, Beth, and I stuck to the end. As Beth and I were viewing old photos of Mom's dead sisters and talking about them, Mom shifted slightly, her eyes fluttered and she was gone. Again, there was peace.

For both of our parents, we rejoiced. We were sad, of course, to let the last we had of them--their bodies--go. But both were in such misery that we were relieved to have them released from pain.

Hospice Care: Don't Wait too Long

Hospice care is, in my opinion, the most humane way to usher a suffering person through the death process. If you ask any hospice what people most often say after the death of a loved one, most often, you may hear: "I wish we'd called sooner."

Too many people wait until the last days of their loved one's life to call hospice. Death could be a more peaceful process for many if they had the trained care of those who have made it their mission to help people through the inevitable transition we must all one day face. For we all will die. Not everyone has a choice in how that happens. But most of us would like it to be as free of pain as possible.

Good hospice care can make that happen.