Nov 8, 2018

My Hospice Care Experience

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.

Hospice care is designed to bring the highest quality of life to a persons that is close to death.
Bob DeMarco
Alzheimer's Reading Room

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.

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

Hospice offers maximum care. They do not offer maximum treatment.

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If you want or prefer maximum treatment, your love one will most likely be taken to a hospital in an ambulance, be placed in a critical care unit, and be put on a ventilator if necessary. The doctors take over and there you go.

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 critical care units available. The patient if eligible can be moved to one of those locations.

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You might be surprised to learn that both my Dad and my Mom died in the same bedroom at home with the assistance of Hospice. Mom outlived Dad by twenty years.

It seems to me that based on my experience that 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 are in need of 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. They will advise you.

Now I am getting asked, how did you know it was time to call Hospice for Dotty?

Let me start by saying 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, and she wanted me to take care of her. Along with Hospice, we were able to grant Dotty her greatest wish.

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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. At the time, 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, Monday, 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. I moved her bed over and moved the excess furniture out of her room.

We were good to go in under 6 hours from the time we left our doctors 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 really eating properly, or even close to properly.

Please read this closely.

If you think you are in need of Hospice care discuss this with your doctor. Ask him to get a Hospice evaluation for you. Do not wait for the doctor to tell you 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. Take action.

Please note and read carefully. Not all patients that are admitted to Hospice 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 all of the Hospice people I met with Dotty and Frank seemed very peaceful. You feel the empathy.

Before I close I want to tell you this. 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.

I want to say a special thanks to Beth, Nicole, and Betsy. I hope each of you understands how wonderful and important you are.

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Bob DeMarco is the Founder and Editor of the Alzheimer's Reading Room (ARR). Bob is a recognized influencer, speaker, and expert in the Alzheimer's and Dementia Community Worldwide.

Originally published July, 2012
Alzheimer's Reading Room