Recently I had a conversation with a Death Doula. As you many of you know, I am exploring my options to end my life on my own terms when my Alzheimer’s disease progresses to a point that I feel I no longer have quality of life. I am very interested in doing death with dignity or medically aid in dying (MAID) but unfortunately that is not available in the United States for those of us with dementia or Alzheimer’s disease. I have done multiple interviews about my wishes an what I have learned which you can read and watch. I am a voracious reader and researcher and I came across the term “death doula” and started researching it. I decided to reach out to one and we met over the phone and she was very helpful.
A death doula is often well versed in the death with dignity laws in certain States that this has been approved in and can often help with the process. They also can provide these services:
- Trained in end-of-life care.
- Facilitates discussions about death and dying.
- Co-create an advance death care plan of death care wishes.
- Supports the family, friend or agent with care plans, or documentation such as advance directives.
- Offers family and community support in navigating the dying process
- Experience as grief counselors offering help before death and post death.
- Vigil: A supportive bedside presence through the dying process.
- Professional educators, creative arts ceremony, casket design, altar creation, and sacred space creation.
- Education on after death care for the body to lie in state at home for 1-3 days creating a home funeral setting.
In my particular case, I have already done the following which are all part of my Alzheimer’s Business Plan: made plans to donate my brain, prepared my will, trust, advanced directives, planned my funeral and purchased my urns. However I know a lot of my friends with Alzheimer’s and dementia have not done these things and although they can be done with an attorney, etc it may be worth discussing how a death doula may be able to assist as well. They can make the process of dying….or preparing to die much easier for those of you who are grappling with coming to terms with this. The Compassion and Choices website is an excellent resource that can be used to help guide you through the process in determining the type and level of care you want, how to tailor your advanced directive etc. They also have tools available for use by people specifically with dementia and Alzheimer’s.
One of the concepts that the Compassion and Choices website discusses is voluntarily stopping eating and drinking (VSED). Phyllis Shacter wrote a book called “Choosing to Die” (available on Amazon) about her experience with her husband who had Alzheimer’s who did VSED. In my case, I would need to do this while I am still mentally capable of making this decision so that my husband does not get charged with any crimes for harming me, but quite frankly I am ok with that. I don’t want to die any sooner than I need to but I prefer this over withering away at home and being a burden to my husband or being placed in a memory care unit. I would prefer to do death with dignity but I since it is not available I will also explore this option. It is so sad…..since I started speaking publicly about my desire to die with dignity with Alzheimer’s, I have been contacted by over 50 people with Alzheimer’s and dementia who all want to do the same. Some are planning on doing it with pills, two with a gun, and some are depressed and despondent. I am none of those things. I am trying to figure out a way to do it legally if possible and I am on a mission to get the laws changed to allow people with cognitive disorders to be able to do so. But if all else fails, it is good to know that VSED is an option for me.
For those of you who are interested in finding out more about Death Doula’s the Full Circle Living and Dying website has a comprehensive overview. Also, you can locate a death doula in your area at the INELDA website.