Hospice Isn't Just For Cancer Patients

My Dad was a hospice patient during the last six months of his life. He didn't have cancer. He was just old and dying. Dad wasn't dying of any one particular thing. He had a whole host of problems: diabetes, neuropathy, heart disease, hardening of the arteries and a touch of dementia. He'd had some small strokes -- little TIAs -- nothing that left him physically or mentally debilitated in any particularly noticeable way, just small losses. He forgot things sometimes, but people do when they get older. He wasn't too steady on his feet and seemed to fall a lot, but then he was stubborn about using his cane, and later the walker, so a few bumps and bruises seemed to go with the territory. Dad was just getting old. He was 83. We didn't expect him to live into the next decade, but we did think he had a couple of good years left.

Dad's balance issues worsened. He had another little stroke. Then he broke his ankle which put him in a wheelchair and a nursing home for two months. He started to have trouble swallowing; things would go down the wrong tube and he'd cough a lot. Some days he couldn't remember "when" it was; his internal timeline seemed to be a little jumbled up. As the months went by, he slept more and got up and around less. He lost weight. His legs got weaker. He started to have trouble picking things up and holding onto them. His body was just wearing out. With Dad there was never one thing you could point to and say, "This is the cause." Dad just lost ability bit by bit. In the medical community, they call it "failure to thrive."

By mid-May, Dad's ankle had finally mended and we wanted to bring him home from the nursing home. But Dad had lost a lot of ground in the past two months and Mom was having a hard time figuring out how she was going to manage to care for him, even with help. I suggested calling hospice. Most people still think hospice is just for cancer patients, but it isn't. Hospice offers palliative care for anyone facing the end of life. Hospice professionals are dedicated to providing comprehensive care and comfort to those who are in the final months of life and to their families. Hospice is not generally a specialized care center, though it can be. It is more a philosophy of care, an acceptance that life is ending and a desire to make the patient's final months as comfortable as possible.

There are several hospice providers in our city, some independent, others connected with hospitals. It was recommended that we work with a center close to my parents' home. Mom, my sister and I met with a HomeReach Hospice nurse and explained our concerns about Dad's health, our desire to bring and keep him at home, and our worries about providing for his care. The nurse later talked with Dad at the nursing home and spoke to the staff. You do have to qualify for hospice, and the patient must meet certain federal medicare/medicaid guidelines. The nurse considered Dad a borderline case. There are three general criteria the patient needs to meet, though the there seems to be some leeway that is left to the experienced judgment of the hospice nurse.

• The patient is no longer improving. Should a person be accepted by hospice and begin to improve after a time, hospice simply discharges the patient. The patient can re-enter hospice at a later time should he begin to fail again.


• The patient is no longer seeking a cure. The emphasis in hospice is on quality, not length of life. Palliative care, not curative treatment is provided. The patient is made as comfortable as possible. Professional medical care is provided with an emphasis on symptom relief and pain management.


• The end of life is expected within the next six months. There is latitude here also. Patients are evaluated periodically. Hospice can be extended past the six-month period as necessary.

Mom was reluctant to consider hospice. She believed Dad would live well past six months, perhaps even three to five more years. And there was considerable hope that Dad would improve once he left the nursing home and came home. With his ankle just healed, Dad was anxious to work on building up his leg muscles and walking again. My parents elected to work with a home health care agency that would provide physical and occupational therapists to work with Dad. They still felt that he would be able to re-achieve his pre-stroke, pre-break level of ability.

The next six weeks were a series of ups and downs. Dad would gain a little, then lose ground again. Physical therapy was a tremendous effort and very frustrating. Dad wanted to spend most of his time sleeping and seemed to be losing interest in life. At the end of June, a urinary tract infection sent him to the hospital for a week. It became apparent that Dad was not going to improve and that hospice would provide the nursing help, medical equipment, medications, health aides and financial relief that would allow us to keep Dad at home. It was time to call hospice.

I can't say enough wonderful things about hospice. Everything hospice provided through the final six months of Dad's life was provided without charge to Mom. Hospice seemed to absorb anything Medicare didn't pay for. Mom hired and paid for home health aides to come in to help with the heavy lifting, and she paid for Dad's regular prescription drugs, diapers, lotions, wipes, etc.; but hospice provided everything else. When he came home from the hospital, Dad was unable to get in and out of bed on his own, so hospice brought over a hospital bed with bars and a trapeze he could use to help maneuver his body. He came home from the hospital with a bed sore, so hospice brought in a fancy air mattress to relieve pressure on his body. He couldn't walk on his own, even with the walker, so they sent over a wheelchair. They sent a physical therapist to teach him exercises to keep his muscles flexible. They sent a bath aide three times a week. They sent a massage therapist. And, most importantly, they sent Betsy.

Betsy was Dad's nurse. Always smiling and upbeat, Betsy came by two to three times a week, joked with Dad while she checked his vital signs, discussed his care and medications with Mom (and the latest episode of Dancing with the Stars), talked to his doctors about medication issues, taught us how to care for Dad, answered our questions, told us what to expect, and always checked to see that Mom and my sister were doing okay. She arranged for aides and equipment, brought supplies and medicines, and made suggestions for making Dad for comfortable and our life easier. She was never more than a phone call away and always responded immediately when we had a concern. Betsy was the glue that held our family together those last six months.

Hospice also sent a wonderful chaplain, Chris, to visit Dad. At first they talked about ordinary things: Dad's life growing up, business accomplishments, World War II, raising a family, his hopes and fears for the world he was leaving. Dad was never a demonstrative person and emotional issues were difficult for him. Somehow Chris was able to bridge that gap and develop a rapport that provided Dad the comfort he needed and the acceptance that was necessary. In talking with Chris, Dad found the courage to accept the fact that life was ending. He was able to come to terms with the necessity of relinquishing his role as the family provider and caretaker. He was able to tell each of us that he loved us and listen while we said our goodbyes, a gift we will always cherish. Toward the end, he even dictated a fanciful obituary to Chris, his sense of humor ever present. Chris soothed Dad's spirit and ours. In her compassion, she always found just the right words to say. She weathered Dad's emotional storms and ours, always making time for our fears and worries when she visited. Chris was our anchor during Dad's last months.

The night Dad died, a hospice nurse came right out. She informed the authorities and funeral home and took care of all the administrative details of death so we didn't have to. Then she stayed with us awhile and shared our grief.

For my family, hospice was a lifesaver. Without fail, everyone we met or had contact with through HomeReach Hospice in Columbus, Ohio was compassionate, professional and kind, from the man who delivered and set up the equipment, to the lady who answered the phone. Hospice gave us the support, assistance, tools and courage to care for Dad at home so that he could die at peace, surrounded by the people that loved him. If someone you love is nearing the end of life, I urge you to contact hospice. You can locate a hospice provider near you by contacting the National Hospice and Palliative Care Organization. For more information about hospice, visit http://www.hospicenet.org/.

Even Superman Has to Die

My Dad died just before Christmas. He was 83. Dad suffered a long, hard road these past few years as his body lost strength and ability. With each loss came frustration, anger and fight -- the desire to overcome the latest frailty. The last nine months were a rocky series of ups and downs. There was another small stroke, then a badly broken ankle that necessitated two months in a nursing home. He deteriorated in the nursing home, hating the confinement and loss of independence. When he could finally put weight on his ankle again, we were able to bring him home. It wasn't easy to provide the necessary level of care Dad now needed, but it was so nice to have him at home.

Mom hired caregivers and my sister came over every afternoon to help out. Dad cracked jokes and directed the rearranging of the furniture to accommodate his wheelchair. But every few weeks Dad seemed to take another little step down. Therapy would go well and he'd improve a bit, then he'd lose ground. He never really regained the ability to walk and gradually his muscles got weaker and his body less dependable. A urinary tract infection took a tremendous toll and Dad didn't seem to be recovering.

Hospice agreed to come in and brought with them equipment, medicine, a wonderful nurse, bathing help, a physical therapist, a massage therapist, a social worker and a chaplain. Most of all, they brought expertise, experience, support and comfort -- for Dad, Mom and all of us. Life for my family became considerably easier. At each new step down, at each new problem, Betsy, our hospice nurse, was there to help. She joked with Dad during her twice weekly checkups, reassured Mom, ran interference with doctors, and brought the drugs and supplies Dad needed. She made sure we could give Dad the very best possible care and helped us cope as caregivers.

For quite a long time Dad had trouble accepting what was happening to his body. He wasn't ready to die yet. He hated that his body wouldn't respond and do what he wanted, but mentally there were still things he wanted to do. At first we all thought death was many months, if not years, away. But as Dad's health deteriorated, we could see that his body was failing, even though his spirit was still strong. Accepting the inevitable was perhaps the hardest part of dying for Dad. Though never much of a churchgoer, Dad was a Christian who followed Christ's teachings in his daily life. He was honest, thoughtful and deeply loved his family. He was the most honorable man I have ever had the privilege of knowing.

When Chris, the hospice chaplain, started coming to visit, she and Dad chatted about his life, the business accomplishments he was proud of, his years in the South Pacific during the war, his escapades growing up in Cincinnati, his frustration with his body and health. But as time went on, Dad talked to Chris about the inevitable, who would take care of Mom, how his children would manage, missing his grandchildren growing up. Dad always took care of all of us and it was hard for him to relinquish that role.

As time grew shorter, with Chris' help, he was able to accept that he was dying and be at peace with the ending of life. He asked us to take care of Mom and each other. And then he gave us each the most important gift he's ever given. He allowed each of us to tell him what we needed to say, to clear the slate, to say how grateful we were for all he had done for us, and to tell him how much we loved him. Dad was able to tell each of us that he loved us, that he was proud of us and that he knew we would succeed in life. It was a powerful gift.

As Dad's health failed over the past years, we jokingly called him "Duct Tape Man." The doctors kept patching him up and he just kept on going. He was like that old TV ad for Timex watches: "Takes a lickin' but keeps on tickin'." Even as we watched Dad age, we thought he'd be there forever. But even Superman has to die. For all the months Dad spent dying by frustrating inches, finally confined to his bed and able to do little for himself; when the end came, it was quick and peaceful. He was home, he was with family, and he just drifted quietly away in his sleep.

I miss my Dad but I know he will always be with me. He helped me become the person I am. He was teacher, mentor and friend, someone I looked up to and will always love and respect. Dad loved telling jokes. After Sunday dinner, he'd regale us with one great story after another. I like to think of him in heaven now, trading jokes with the angels. Tell them the one about the penguins, Dad; it was always my favorite.