Woman with dementia seeking graceful, self-determined death

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Dying isn’t ever easy. Faith – of St. Paul, Minneapolis knows that and she seems to have a good grasp as to what is involved with the evolution of her dementia. Faith’s young daughter and her daughter’s baby live with her in her Minneapolis home, downstairs in an area that is frequently filled with too much noise and too many peripheral distractions for a mind that is clearly declining and cannot stand the additional mental clutter.

Due to changes in her visual perceptions, even the carpet downstairs is too distracting. It appears three-dimensional and is difficult to walk across. The baby cries. Caregivers walk in and out creating noise, conversation, and confusion.

On a good day, she calms the static in her mind by caring for her elderly mother upstairs. Faith is her mother’s sole caregiver, folding clothes and cleaning in the quiet space of her mother’s room where she fills her time with caretaking duties.

A spirited and attractive woman, Faith’s most recent IQ test measured around 90. She still possesses a respectable capacity for dealing with life. Before her diagnosis of dementia, her IQ measured above 150, with an intellect and capacity for deciphering and processing information that allowed her to excel as a paralegal.

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As she describes the dementia that is now chiseling away at her thought processes, she pictures her mind functioning as concentric circles, each circle slowly becoming fuzzy around the outer edges. Thoughts become disrupted, she forgets words, and soon she notices that the thoughts and words no longer even come to mind and that ring of consciousness vanishes, diminishing to the next ring. She does not know how many rings are left or at what stage her mind will no longer be lucid at all.

Faith is now considering the normally unthinkable. She is considering ending the progression of her disease by ending her life. Consulting the Internet, she has found an organization that will educate her on how to achieve a peaceful death.

The organization, Final Exit Network, caters only to its members – over 3,000 in 50 states – who believe that a suffering person should not be forced to continue life once their circumstances diminish the individual’s capacity to have a good quality of life. In Minnesota, in Dakota County, a jury trial last year ended with a verdict that cost the organization over $33,000 and banned members from talking about end-of-life options to other members within the state. An appeal was filed in early April and the organization is arguing for a reversal of the verdict.

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For that reason, Faith traveled to North Carolina this week to visit one of Final Exit Network’s “exit guides.” Once in North Carolina, she learned the mechanics of ending her life gracefully, calmly, and without government intervention.

For now, Faith is able to tap into state and federal resources for help, but the caregivers sent by the state programs are only so helpful, with limitations on their time and responsibilities.

She has a service dog. He, too, is limited in his ability to help. Just as with her caregivers, he needs direction. When she takes him outside, she doesn’t know how long it will be before her dementia progresses and she will no longer remember to return home. Who will give him the command to return if she can’t remember? On a cold day, her diminished capacity to detect pain or process the fact that she is getting cold will become life-threatening.

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Thankfully, spring is in the air and this particular fear is waning as the days grow longer and the weather turns warmer.

As for her future plans for a peaceful, self-determined exit? She says she will know when it is time. Since she is in Minnesota, however, no one can talk with her about it and no one can sit with her when the time comes. It will be a solitary decision and she will be alone. She says that’s ok. She also says a terrible burden has been lifted now that she is armed with information to make this very personal choice. “It’s like someone has come along and lifted a huge backpack, a huge burden, off my shoulders. Like they just came along and said, here, let me hold that for you. And now they are carrying it for me. What a relief to know people who finally understand.”

For more information, contact Fran Schindler with Final Exit Network  by phone at 919-932-1504, or visit the Network’s website at www.finalexitnetwork.org. – PRNewswire

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