At the age of 85, my mother-in-law faced a bladder cancer diagnosis. She underwent a radical cystectomy, which is the complete removal of the bladder. After recovery, she enjoyed several years of relatively good health. Then in 2012, she began to experience severe, chronic headaches. After an MRI, doctors informed her that the cancer had spread. A malignant tumor was growing near where the top of her spine met the base of her head, and the doctors could not proceed with any treatment because of her frailty. The oncologist estimated her life expectancy at six to nine months.

My husband and I had discussed options for assisted living with his mother occasionally over the years. However, now that the actual decision time had arrived, she began expressing resistance. We had visited local continuing care retirement communities, independent living facilities, and nursing homes. In each case, she insisted on staying in her own home.

With the discovery of the malignant tumor, we looked into home health care options. We explored in-home help with housekeeping, cooking and health care, including skilled nursing care. Each time we interviewed a candidate, my mother-in-law rejected the person. Sometimes the rejection seemed based on personality or lack of compassion on the part of the applicant; however, I believe many times she simply could not face her own mortality.

On the recommendation of her primary physician, we looked into in-home hospice care for my mother-in-law. We first learned that for patients receiving Medicare, certain specifications had to be met for Medicare to cover the costs. She was on Medicare, and she had to meet the following conditions:

• She had to be eligible for Medicare Part A.
• Her doctor had to certify that she was terminally ill and expected to live six months or less.
• She had to agree to palliative care rather than treatment to cure her illness.
• She had to sign a statement agreeing to hospice care rather than routine Medicare-covered treatments for terminal illness.

My mother-in-law’s health care provider was a large health maintenance organization, and the doctors and staff knew of and provided all of the correct documents to sign. This had its advantages and disadvantages. At times, my mother-in-aw went into denial, and we found that the well-organized palliative plan from the HMO made her feel rushed and pushed into a decision she was actively avoiding. For my husband and me, it took a great burden off our shoulders, especially my husband’s, because we did not have to spend hours on the phone with Medicare to make arrangements.

We tried not to push my mother-in-law, but she was declining quickly and losing her ability to walk and take care of herself. On the day she finally agreed to hospice care, she made it out to her car, got in and went “for a spin.” Good thing my husband insisted on going. She could not remove her foot from the accelerator, and he had to reach over and lift it off. He then got his leg over and his foot onto the brake. She accepted the need for care after that incident.

It took only a phone call to have her doctor certify her for hospice. He gave us a personal recommendation for a local organization. The next day, my husband received a phone call from the hospice group, which had a hospital bed ready to deliver and set up. The hospice representative asked if my husband would be home over the next several hours. The hospice workers arrived, moved my mother-in-law’s bed to another room, and set up the hospital bed. While we were waiting for the bed, my husband received another call to set up a visitation schedule starting the next day. Soon after that, a package arrived in the mail with medical supplies, including morphine pills for pain.

Although my husband stayed with his mother around the clock over the last months of her life, hospice came several days per week to check her vitals and help with bathing and other hygiene. We found that our particular hospice care providers were amazingly compassionate and caring. Moreover, they were excellent at communicating with us about my mother-in-law’s status. They had a way of delivering the message with a kindness that was very comforting to us — especially to my husband.

In addition, they were very skilled at dealing with the entire family. In many ways, the visiting nurses cared for our emotional needs as well as my mother-in-law’s physical needs. My husband was (and still is) estranged from his younger brother, who lives only 20 minutes away. Despite his proximity, he had not visited his mother in nearly 10 years. My husband asked if they could convince his brother to visit their mother. They placed the phone call, and miraculously, he showed up on a Saturday afternoon. He and my husband had a nice conversation together sitting next to their mother’s bed. I am sure it registered with her that her two sons were with her, even though she was unconscious.

She passed away two days later, on Memorial Day of 2013 at the age of 89.

What Would I Do Differently?

Since we had a good experience with a proactive hospice organization, the only thing I might do differently is to engage it more quickly and utilize more of its services, rather than interview other home health care providers. In addition, the hospice organization offered grief counseling to family members, and we would have benefited from that.

What Advice Would I Give to Others?

Seek out recommendations from your loved one’s physicians. They have the practical experience to know which hospice organizations provide compassionate and professional service.