Featured Article:
My Hospice Care Experience

By: Bob DeMarco | Alzheimer’s Reading Room

Hospice care is designed to bring the highest quality of life to persons that are living with a serious illness, and are often close to death.

There is a common notion that Hospice helps people die. I don’t see it that way.
Both of my parents, Frank and Dotty, died at home in their bedroom with the assistance of Hospice by the Sea, Boca Raton, Florida.

Hospice did not help my parents to die, they helped them live to the very end of their life with dignity and compassion.

Hospice accomplishes their mission with a coordinated team of healthcare professionals. Hospice care is designed to bring the highest quality of life to persons that are living with a serious illness, and are often, but not always, close to death.

A typical hospice team includes: a doctor, a team of nurses, a case manager, social worker, chaplain, bereavement coordinator, and often volunteers.

If you want or prefer maximum treatment, your love one will most likely be taken to a hospital. The doctors then take over.

When Hospice arrives on the scene they keep the patient comfortable, alleviate symptoms of pain, and in the case of in-home care, allow the patient to stay in a familiar setting, with familiar sounds and voices. They do not treat the existing illness.

Hospice also has short term acute care units available. The patient, if eligible can be moved to one of those locations.

Based on my experience Hospice is not well understood.

I often get asked, when is it time to call Hospice?

The first person you should be asking this question to is your doctor. Don’t operate under the erroneous impression that the doctor will tell you when it is time.

Some doctors don’t like to talk about death, and sometimes they don’t know if death is imminent. Ask your doctor to contact Hospice. Once Hospice receives the instruction from the doctor, they will call you. It is that easy.

If you doctor refuses for any reason to call Hospice and you feel you need their help, call Hospice and ask for a social worker. Find the appropriate person at the hospice and describe your situation and ask for an evaluation.

Many people ask me How did you know it was time to call Hospice for Dotty?

I was thinking about and asking questions about Hospice care for years. I made sure I understood the process and timing. If you don’t understand Hospice care, call them, and they will make sure you get educated about their service.

For many years I told my friends that my main goal was to make it to Hospice care with Dotty. Dotty wanted to stay home, she wanted me to take care of her. We were able to grant Dotty her greatest wish.

In 2011, I thought it might be time to call Hospice. Dotty was very sick and I thought we might be near the end. As it turned out, there was a ‘bug’ going around and this was what made Dotty so very very sick. After a few weeks Dotty was clearly improving and eventually she returned to good health.

However, in May, 2012, I knew immediately that it was time for Hospice. Dotty was having trouble walking without my assistance. Then from one day to the next, she couldn’t get up on her own, and when I walked her to the bathroom she felt “very heavy”. I knew instinctively, the time is now.

The next day, I took her to the doctor and he sent the instruction to Hospice.

Hospice received the instruction around 11 AM. By 2:30 PM, a Hospice admissions nurse was in our home. She evaluated Dotty and shortly thereafter Dotty was approved for Hospice care.

Over the next three hours I did all the paperwork along with the nurse, received all the necessary equipment including a hospital bed and oxygen, and Dotty was moved into the hospital bed. I had them place the hospital bed right next to Dotty’s bed in her bedroom.

We were good to go in under 6 hours from the time we left our doctor’s office.

Dotty was not approved for Hospice care because she was suffering from Alzheimer’s. She was admitted because she could not get up on her own, couldn’t walk, and was not eating properly.

If you think you need Hospice care discuss this with your doctor. Do not wait for the doctor to tell you need Hospice. Take control of your life.

There is no penalty in asking for Hospice care. There is no shame. Either your loved one will be admitted or they won’t. Don’t stress yourself out wondering if you should get a Hospice evaluation. Act.

Not all patients that are admitted to Hospice. Some care die. Some get better. For example, they start eating again, and their health improves.

The Hospice people are wonderful. Ask every question you can think of. They are very patient. They will answer your questions. Almost of the Hospice people I met seemed very peaceful. You feel the empathy.

One of my greatest fears was that Dotty would end up in the hospital near the end of her life. I knew this would be a horrific experience for her, or for any person suffering from dementia. Thank God I got to keep here at home.

Note: Bob DeMarco, the author and passionate advocate behind this wonderful web site, became an important pen pal for me. Our lives crossed when each of our mothers were struggling in the final stages of Alzheimer’s, complicated by other medical issues. Our email chats helped sustain us both. Our mothers died 2 months apart in 2012, each receiving all the amazing benefits of hospice care. A word of advice: DO NOT DELAY, call now for an evaluation. The worst decision about hospice is waiting too long to call.

Regina McNamara RN MSN MPH, owner Always There Home Care ■