Oct 4, 2013

My Hospice Care Decision for Dotty

Hospice allows a person who is critically ill to live their life to the end with compassion, great care, and dignity.

By Bob DeMarco
Alzheimer's Reading Room 

Previously I wrote - Is Hospice Care an After Thought?

In the comments section under the article our reader Judy K asked:
Bob --

Thanks for referencing the excellent article about Hospice utilization. Can you give us a little more detail about your statement, "There were two times when I thought it might be necessary for me to utilize Hospice to help care for Dotty. Two false alarms. She bounced back.

The third time there was no doubt - it was time for Hospice. Did you make the decision about "false alarm" or did hospice? I ask because I have had more than one doctor refer my husband to Hospice only to have the Hospice evaluating nurse say he did not qualify." Do you know if this is common?
This is an excellent question and gives me the opportunity to share my own experience with you.

You can click on the links as you read this article to get additional information, or follow the links under "Related Articles" for more information on Hospice and my experience with Dotty.


Related Articles

Let me start by saying that I had a crystal clear understanding of the types of care that Dotty wanted at the end of her life. We had these discussion more than 20 years prior to her death.

Dotty did not want to be resuscitated, put on an machines that prolonged her life for weeks or even days, and she did not want her life extended artificially.

I had an advance directive, and Power of Attorney, that gave me the legal power to make decisions concerning Dotty's end of life care. Or, for any care decision she could not make on her own. These documents were signed and executed well in advance.

Dotty's clear wish was to die at home and she wanted Hospice and Palliative care.

I started learning as much as I could about Hospice care and Alzheimer's in 2006 (Dotty went to Heaven in 2012). I was please to learn that Hospice did provide end of life care for dementia patients. At the time I believe about ten percent of Hospice patients were suffering from dementia.

I had a strong desire to learn as much as I could about Hospice care as I could in advance of our need for assistance from Hospice.

I learned that if I could go around the doctor and directly to Hospice if necessary.  I doubted this would ever be an issue for us because I was very thorough in the selection of Dotty's doctors.

I repeatedly asked questions to anyone that had direct hands on experience with Hospice like geriatric care managers +Carole Larkin  and Olga Brunner.

Let me make this clear to all my fellow Alzheimer's caregivers. My mother wanted to die at home. I understood this. I had an unending burning desire to make sure this happened.

I can say my major number one goal, all the time, was to keep Dotty at home until she died. I started caring for Dotty on November 17, 2003. Dotty went to Heaven on May 25, 2012. She died at home in her own bedroom.

There were a couple of times when I thought we might be approaching the time when Dotty needed Hospice care. However, until May, 2012 I never requested Hospice care, nor did Dotty need Hospice care.

I did discuss the issue of Hospice care for Dotty more than once with professionals I knew. In other words, I was fully prepared, in advance, to pull the trigger when and if necessary.

In 2011, Dotty became so sick that she could not get up and out of bed on her own. She could only walk a few feet. I was feeding her small glasses of Boost, and whatever food I could get into her.

This lasted for almost six weeks. During the first 2 weeks Dotty did not get worse, but she did not get better. I asked the doctor (we went once a week for 6 weeks) and other professionals I knew if Dotty was terminal.

I was worried that Dotty was "terminal",  that she was going to die soon. I asked our doctor, is her condition "dire". She told me straight out - no, she isn't dying.

Remarkably, right around 6 weeks Dotty stood up on her own, got out of bed, and then called out to me - "YouWho I am awake you know". I was startled and amazed. Dotty was back.

I should mention I made it through those six weeks thanks to the tremendous support of readers of the Alzheimer's Reading Room. 

We received their prayers. I understand the positive effects of support and prayers. The readers gave me great strength. I told Dotty about the emails and comments so I can only assume they brought her great strength also.

I should mention to reader Judy, we did have a similar but less dire situation in 2010. We did not call Hospice.

If your loved one can not stand up. Or if you loved one cannot eat, you should discuss Hospice with your doctor.

Or better yet, call Hospice, ask for a social worker, and describe your situation.

You should never be afraid to ask your doctor, how much experience he or she has with Hospice? Ask, do you know the people at Hospice?

If you are not crystal clear on the Hospice evaluation methods, or how Hospice evaluates dementia patients you should call them now. 

You can ask for the social worker for your area or the charge nurse.

You can ask Hospice to explain to you in layman's terms how Hospice works.

Many Hospice's offer meetings where they explain their service and criteria. Ask if this is available, or look on their website.

If you do not understand Palliative care, ask them to explain this type of care to you. Hospice offers maximum care, they do not offer maximum treatment.

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

Please read the following carefully.

Hospice allows a person who is critically ill to live their life to the end with compassion, great care, and dignity.

It did not seem to me that Hospice was with us to help my mother die. Quite the contrary.

I would suggest that you seek a non-profit Hospice if it is available.

The end of life can go smoothly, or I suppose it could be horrific.

One thing I know for certain - the stress is enormous. Because the stress is enormous it is imperative that you develop a plan well in advance. This plan could include Hospice.

One thing I was not going to let happen. I was not going to let anyone send my mother to the Hospital for even a day if Hospice care was an option.

Our goal was to get to Hospice for end of life care - we made it.

If your goal is to have Hospice assist you with end of life care, make your plan now.

Make sure you are ready to act well in advance.

You can learn more about my decision to use Hospice by reading the related content listed below. You can also enter the word - Hospice - into the search box on the right to explore the ARR Knowledge base. You might also search - DNR.