Tag: care

Another Interview Coming Soon With John Wadsworth

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The soul doesn’t go anywhere;
​ it’s the body that dissolves and returns to the earth.

My friend and colleague, John Wadsworth, is a gifted photographer and videographer. He is the Founding Editor and Creative Director of the beautiful “Art of Dying” magazine. In the opening “Editor’s Note,” John says: “Death is approaching everyone. One moment we will no longer be who we have believed ourselves to be. Our bodies will be lifeless. And all that we have experienced, our loss, our hates, our successes and our failures, will dissipate as dreams. How we die is important.”
John interviewed me last year, and I shared intimate information about my husband’s death when he decided to VSED rather than live into the late stages of Alzheimer’s. Soon John will interview me again about my personal story and how I navigated that journey with Alan. 

John has collected the largest volume of quotes about death and dying. For some years now, he has put a daily quote on the internet about death and dying. You can find it at www.DeathKnells.com. These are quotes by philosophers, teachers, and sages of all persuasions.
One of the ways I start my day is by reading the daily quote on DeathKnells.com. I hope you’ll do the same. After you do this for a while, you’ll see that your perspective about death and dying may begin to change. Below is a recent quote.

 

Pure consciousness cannot be destroyed;
it can only be expressed.
Knowing this frees us from the fear of death
because nothing in the universe is ever lost;
it is only transformed.
If you and I are speaking on the phone,
and somebody cuts off the phone lines,
what happens to us?
Where do we go?
Nothing happens to us, and we don’t go anywhere.
So, too, when physical death occurs,
nothing happens to us.
Certain lines of communication
that use a certain nervous system
have temporarily been disrupted.
But we are still here.
The soul doesn’t go anywhere;
​ it’s the body that dissolves and returns to the earth.

Deepak Chopra:   Power, Freedom, and Grace: 
Living from the Source of Lasting Happiness 

Legality Surrounding the Choice to VSED

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Death and dying feels like a messy matter at times. If we haven’t come to terms with our mortality, how can we even begin to think about and exercise our choices.

It is complicated and often intense to think ahead of time about how we want to die. Considering our choices requires deep introspection. For example, VSED is a complicated choice and it requires sufficient support. First the individual has to determine if it is right for him or her. Then loved ones have to support the individual’s decision. It takes time and effort to communicate with medical and legal people to ensure that everything will be carried out properly.

In this blog, I want to focus on the legal issues. I highly recommend that someone who is considering VSED consults with an elder law attorney. Do this well in advance. Not all elder law attorneys will be comfortable with or knowledgeable about VSED. We were fortunate to have a forward thinking elder law attorney. She knew much more about VSED than an estate planning attorney or a family law attorney.

The elder attorney will draw up documents to ensure that your wishes are followed and are within the realm of the law. In our case, my husband had his Health Directive that was filled out and updated as needed. Because he had Alzheimer’s and was still mentally competent, he filled out the Alzheimer’s Advance Mental Health Directive. This can be found on the End of Life Washington website. It is excellent, and it often requires the assistance of an elder law attorney.

My husband was certain that he wanted to avoid ever living in a dementia facility, but he only had so much control. If he landed in a dementia facility, however, we had already talked about our financial assets with our elder law attorney so that there would be money to take care of him and also money left for me. It can be very complicated. The Alzheimer’s Directive also covers decisions involving day to day choices about where someone would like to be treated and cared for. Different scenarios and options are covered in this fine Directive.

Here is a link to the Alzheimer’s Disease and Dementia Mental Health Advance Directive.

Many people ask me about the legality of VSED. Yes, it is a legal option in the United States. I strongly encourage you to look at the white paper written by Thaddeus Pope and Lindsey Anderson called “Voluntarily  Stopping Eating and Drinking: A Legal Treatment Option at the End of Life. It was this document that convinced my husband to VSED.

Another document that our elder law attorney drew up was a document to eliminate risk to the caregivers, the doctor and myself. I also filled out a similar document. Both were witnessed and notarized.

So, there is lots to think about. I encourage you to read my book, Choosing to Die. All the details are covered in the book. It is both a memoir and a guidebook.

A Better Way To Care For The Dying

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With advances in modern medicine people are living longer. The Economist article states

“People in rich countries can spend eight to ten years seriously ill at the end of life”.

Also 3/5 of current deaths come “after years of relapse and recovery.” What this brings to the current status quo is unnecessary pain and suffering for many elderly individuals and their families who do not have an end-of-life care plan. This issue comes not only from people’s challenge with having the difficult conversation but also with the medical profession. Susan Block of Harvard Medical School says “Every doctor needs to be an expert in communicating”.

Doctors tend to be overly optimistic about how long terminally ill patients have to live. This causes many to leave things unsaid and end-of-life wishes unwritten. Recently Americans have seen a rise in planning for treatment care in case of incapacity. However, we are far away from where we need to be. The medical profession as well as individuals must become better at dealing with the inevitability of death.

We can find our ways to deal with the inevitability of death.  Some of us may not find these ways. That is our choice. I learned a great deal observing my husband as he prepared for his death. He acknowledged that he was going to die soon and he dealt with unfinished issues in the last six months of his life. For him, he needed to resolve issues that he had with his mother who was no longer alive. With the help of a therapist, he was able to do this. This brought him deep peace. In addition, he and I met with a chaplain two months before he died. She has much experience in helping people, who are close to death, to prepare for their own. Alan was able to talk about the kind of death he wanted to have. Because he had chosen to VSED (voluntarily stop eating and drinking), he knew approximately when he was going to die. He planned the music he wanted to listen to. We talked about what people would be around him during this time. He talked about what his legacy would be to others. This two-hour conversation covered many issues.

Death By Design

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More people than ever are choosing to be cremated, yet crematoriums are often grim places.”

In America and Europe, the decision and demand to be cremated is growing faster than what the crematoriums are capable of handling. Yet everyone wants to have proper ceremony and decorum surrounding the death of a loved one. Dominic Nicholls writes the story of architects attempting to provide a suitable space where people can remember their loved ones after choosing to be cremated.“…Death is a part of life. Once we leave the Earth we are still part of the universe, and architecture can help connect the two.”

Companies like RCR and Sacred Stones are trying to create a new model for burial services to meet the rising desire for cremation. This currently comes in the form of a sleek looking room that provides intimacy and privacy, or iconic burial mounds found in Anglo-Saxon areas of Europe. Both ultimately give people the same thing. A place to quietly have a moment to reflect on the memory of the ones no longer with them.

Death By Design Article

We’re Not Too Young

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As newly weds it was important to have a discussion about what matters most at the end of life so we can make the right decisions for each other when the time comes

I hope that someday everyone fills out a health directive when they become an adult at 18. Our parents are legally responsible for us in the United States until then. At 18 ideally everyone should fill out a health directive. If you don’t do this and you are in an accident or get a terminal disease doctors and hospitals have a the legal right to make all decisions for you. Your health directive ensures that your loved ones will be able to represent you and your wishes. I filled out my first health directive when I was 40. I still didn’t believe I was going to die someday. I know It is challenging to think about a health directive when you think you are immortal. They vary from state to state, but what is important is what you write. Nevertheless, we are all going to die and we all want to have a good death. We are all familiar with death and through figuring out what what state we want to live into is something only you can decide. That is why preparing is important even when we are young and do not think about death.

A touching story of two Newlyweds 

How to Talk about End-of-Life Care When a Loved One Has Alzheimer’s Disease

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When my husband was diagnosed with Alzheimer’s disease, instead of living into the late stages, he chose to vsed. I was his advocate. We discussed everything. He had excellent support. In order for my husband to have a good quality of death there was a lot to talk about. Being able to comfortably talk about end of life is essential in order to prepare for a good quality of death.. Informing ourselves and others without judgment is key to living a good life and having a good death. Cultivating support systems will help yourself and others.

This article reiterates the difficulty of discussing end of life with someone in every stage of Alzheimer’s disease and how you can try to communicate how they want to leave their body

The Conversation Project is a great resource for end of life preparation and support.

How to Talk about End-of-Life Care When a Loved One Has Alzheimer’s Disease

End of Life Choices For Young People With Life Limiting Conditions

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Many parts of Europe are far more enlightened about end of life choices and the compassion that surrounds it. It is horribly sad when we think about young people dying early in their life. Yet when this occurs, we want to have compassionate choice available to us. End of Life choices affect not only elder people but young people too. Below is a link to a full case study and guideline recommendations on how to deal with end of life care, compassion and choices with young people 0-17 with life limiting conditions. 

https://www.nice.org.uk/guidance/ng61