Update on My Fight to Die with Dignity with Alzheimers

On July 29th I published a blog called I Want To Die With Dignity With Alzheimer’s. I had just done an interview with Deborah Kan of Being Patient regarding my desire to do so. I was frustrated because nowhere in the United States will they allow you to do this if you have a cognitive disorder like Alzheimers, Lou Gehrigs, or Parkinsons disease.

Since that time, I have reluctantly become a Right to Die advocate for people with Alzheimer’s disease. I have done extensive research, joined countless Right to Die organizations within the United States and several other countries. I have spoken to two agencies in Switzerland as well as the doctors in the Netherlands about pursuing it there. Switzerland is an option but I would need to do it soon because they require that you be cognitively capable to administer the drug yourself. That means I would need to do it within a few years. Canada is going to consider it within the next 18 months.

I also did a Courageous Conversation with Teepa Snow from the Positive Approach to Care Organization regarding a video I made documenting why I want to do it and how frustrated I am that animals are treated more humanely than humans. My dog was put peacefully to sleep when it was his time, but I don’t have that option. If I make the decision now, and put all the appropriate legal documents in place stating this is what I want to when I reach a lack of quality of life (and clearly defined by me while cognitive), I would like the opportunity to do so.

I was very emotional when I made this video below. I had must put my end life life plans in order. I had just finalized my will, trust, advanced directives. I also had just made plans to donate my brain, met with the coroner and funeral home, planned my funeral and purchased my urns. I’m a planner……I want everything wrapped up and organized by me so my husband doesn’t have to worry about it. All of these things are difficult to do, but even more difficult for someone of a fairly young age of 59.

Since my original blog post regarding this topic on July 29, 2020 I have received over fifty contacts from people with cognitive disorders who would also like to die with dignity. They are looking for assistance. Several indicated that if they don’t find it they will resort to suicide if they can’t find a way to die with dignity. Many of them already have it planned out.

Talking about the desire to die with dignity seems to be taboo in the Alzheimer’s community. How sad is that? That is why I am speaking out. Sticking your head in the sand does not make it go away. It’s a shame that people have to make clandestine plans, suffer in silence rather than get the support and peace of mind that they need and deserve in the final years of their life. I truly recognize that medically aided dying is not for everyone, but it’s an option that many of us want.

Because I don’t have any good avenues available to me right now, and I am NOT suicidal, I will work on option A (keep researching) and plan B: make plans for a memory care unit. You can be damn sure though that I am NOT going down without a fight. Alzheimer’s is not going to take me any sooner than it has to.

Not today, Alzheimer’s Not Today!

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14 thoughts on “Update on My Fight to Die with Dignity with Alzheimers

  1. Hi Kelly,

    Your video is very touching. In the late 80’s, we did a number of mailing projects for The Hemlock Society, which was attempting to have states legalize assisted dying.

    Keep fighting the battle.

    Bob

    On Tue, Jan 12, 2021 at 11:30 AM Living My Best Life With Alzheimer’s wrote:

    > Kelly posted: ” On July 29th I published a blog called I Want To Die With > Dignity With Alzheimer’s. I had just done an interview with Deborah Kan of > Being Patient regarding my desire to do so. I was frustrated because > nowhere in the United States will they allow yo” >

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    1. Thanks, Bob. The Hemlock Society has been disbanded but now goes by the Right to Die Network. I of course have been in contact with them. Thanks for your support.

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  2. Hello Kelly. Thank you for sharing, and working to change things. I have told my kids for two decades that I will kill myself if I can see I have developed Alzheimers. My cousin died of early onset A before he was sixty. My aunt, Mom, and grandfather all lingered with worsening conditions. I will not put my kids through that. Have you heard of The Peaceful Pill handbook??

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      1. I know the drugs are hard to come by. I have the courage and ability to take my life another way.

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  3. Love you madly, but still disagree. I have children, a granddaughter, friends all over the world. There are many days when I feel lonely, depressed and just not needed until someone…breaks that emotional bondage and I can help them, even with a simple smile or an open ear/heart. Yes, I will die from a dementia-related event. Yet, for some strange reason I will never understand, God has given me the gift to keep fighting for LIFE. And to encourage others to do so, even when they are facing a large mountain. I will die. When it’s my “time” to die.

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    1. I understand your point of view. Having seen my Mom, Uncle and Grandma die from this its not the way I want to go. I will fight until I can’t fight any longer, but then I want the option for a peaceful and quick end to my life. Hope you are doing well, Jim! Take care.

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  4. Keep it up, Kelly! My wife has early onset Alzheimer’s and I’m her FT caregiver. She’s thought about suicide but, even it she were to get serious about it, she probably wouldn’t be able to carry out at this time. What you are doing is important and I fully agree and support right to die in the US for everyone, including those with Alzheimer’s.

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  5. Just a thought on the reluctance among Alzheimer’s Groups, among others, to have open conversations about death and dying. It isn’t about the patients it is about the survivors who will live to sue and punish the care givers and owners of facilities for “letting” their loved one die. Same reason ambulance companies do not have to acknowledge living wills and DNI/DNR documents unless they are signed by a physician.

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  6. Kelly,
    What a beautiful and brave woman you are! I happened upon your interview with Deborah Kan via “Being Patient”, as I, too, research incessantly about Alzheimer’s. I lost my mom to it last January (2020) and was fraught with anxiety and fear after learning at her memorial that Alzheimer’s also runs in my family. I have more relatives than I had previously known about, a great grandparent, a great aunt, a great uncle, a grandmother, as well as my mother, suffer and pass from this horrible disease.

    I was touched by the video here, “Courageous Conversations: Dementia and Dying with Dignity”. It is so frustrating how those with cognitive diseases are excluded from consideration for Death with Dignity. I harbor the same anger in terms of responding to anyone, whether they are lawmakers, doctors, other professionals or other citizens or friends, when considering and discussing this issue. Dementia should be included within that legislation.

    The legislation seemingly holds three conditions to be of utmost importance when allowing one to choose Death with Dignity: having a terminal illness (with pain and suffering playing a part), having less than or equal to six months to live, and having mental capacity to choose.

    All forms of dementia are terminal illnesses. Although we cannot truly measure the “pain” that one with dementia might experience or endure, either physical or mental, due to inability to perhaps communicate the severity of it, that is hardly the point. Those with any form of dementia lose the ability to communicate and interact with others in meaningful ways, lose their memory, and, most importantly, lose the ability to recognize their one’s loved ones (family members and friends). To be sure, no one would choose those symptoms and living with them for years that may go beyond a decade. This certainly speaks to another kind of pain, one that the dementia sufferer is possibly aware of at times (they can react with fear, anxiety, or agitation, as they try to remember or are unsure of who they are with at the time). And that pain and anguish is thus felt by others, the ones close to the dementia sufferer, as relationships involve more than one person. Even more absurd then, is considering how often those with dementia have physical ailments or pain that they cannot express to others due to the aforementioned impact on their communication skills. Suffering, again.

    Many use hypothetical situations or anecdotal evidence to say that those with dementia may be “happy” or may “enjoy” life, albeit with limited cognitive functioning. They note that they might be calm, smile at people, or focus on things happening around them to support this claim. At best, this is dangerous inference. We can’t know with certainty what one with dementia feels or thinks, as they cannot effectively communicate after the disease has taken hold.

    Data has been collected for those who access the process for Death with Dignity, and by far the main reason given for accessing this choice (acquiring the prescription) is fearing loss of dignity. This is certainly attributable to quality of life considerations. In that way, I believe that those who suffer from any form of dementia certainly align there, as well. Those with dementia will inevitably lose the ability to take care of themselves (eating, dressing, bathing, and toileting, etc). I can’t provide a more clear set of examples for the loss of dignity.

    I helped my dad as best I could with the care of my mother. I am an educator and had girls going through middle school and high school at the time her disease had progressed to the point it became taxing on my dad. I traveled to see him and my mom every chance I got, going to be there five-six times a year towards the end of her struggle. I saw firsthand the emotional and physical tolls the disease took on both my parents. My dad hired caregivers to come into his house for a few hours each day, excluding the weekends; my brothers also helped him, as they lived in the town my parents did.

    To care for one with dementia accrues other costs as well–financial. I don’t have to quote the cost of memory care to any reading your blog or this post. I cannot believe those costs, certainly more than the average family can afford, regardless of how well they “planned for the future”. People can lose a lifetime of savings, homes and other assets, in order to get the care they might need should they not be able to care for their loved one with dementia at home. It makes me wonder who is actually making money in this case, as greed seems the only reason we would ask people to suffer so and pay for it in multiple ways for such a long time.

    And then we arrive at the slippery slopes–knowing how long one with dementia actually has left to live and determining if their choice to end their lives would change from earlier self to future self. I agree with you that stating clearly the symptoms that present and their impact on quality of life could be used instead of the time phrase, “with six months or left to live”. There has been research done to delineate the stages dementia, so a person entering the stage at which they can no longer recognize or interact with loved ones and/or care for themselves with dignity should suffice. It is a time phrase.

    In response to the notation about mental capacity, I perhaps become the most angry. To hypothetically suggest that a future, mind you mentally incapacitated self, should overrule my decision about what quality of life means to me when I am functionally well cognitively makes absolutely no sense. If we asked lawmakers to interact with those with dementia and the lawmakers witnessed them being afraid, agitated, anxious, drooling, asleep during the day in a wheelchair due to chemical (medication) restraints, unable to interact with others in a meaningful way (whether a loved one, friend, or stranger), and unable to care for themselves, perhaps that would change a few minds.

    Those in the medical profession have also expressed reservation about allowing Death with Dignity for those with a neurological disorder. They often cite that they wish to “do no harm”, quoting the promise they make when becoming a medical professional. I would ask them about the harm inflicted and well documented in terms of those with dementia and in care facilities–use of chemical restraint causes emotional distress, further cognitive impairment, potential falls, and thus unnecessary medical visits and procedures. How can this not be causing harm?

    I did want to end this by truly just reaching out to you. I have not been diagnosed with dementia yet, although I fear that my family history makes that inevitable. I am trying, like you, to navigate the fear. I feel so alone, as my family and friends try to rally and tell me “not to worry, God’s got this”, and “why worry–you have so many years left–you are wasting your time and energy in the now worrying about your future”. And, to the latter claim, I would concede that they are right. I do need to live in the now and enjoy the blessings I do have. But, those that give such advice are not in my boat, seemingly on a rough sea of uncertainty, facing a likely disease for which there is no treatment and no cure. Should I get this disease, I will experience social stigma, further emotional distress, and costs in terms of pain and finances. I fear the burden I will become to my family. And like you, I have an amazing husband who also offers to take care of me, and I have lovely children, who all try to reassure me of the same. But, I know I would become a burden, despite their love and best intentions to care for me.

    I cry with you, albeit we are separated by many miles, and wish I could alleviate your fear and frustration. Please know you are not alone. I have the fear, the anxiety, and also participate in the incessant research, trying to find another answer to alleviate the aforementioned feelings. I, too, beat my head against the same wall, as no matter how many times I research, the answers are all the same, disheartening and seemingly hopeless.

    I truly wish I could meet you and give you a hug. And, as a woman struggling to hold onto her faith, I admit I am angry at God, too. I don’t know why such suffering exists, and I constantly wonder why He would allow it to such extents. It baffles the mind, no pun intended. Please listen to Jason Gray’s, “Remind Me You’re Here”, and JJ Heller’s, “Your Hands”. Small senses of solace, but perhaps they can minister to your weary heart and soul in place of meeting someone like me who is seemingly your “soul sister” in all of this. May God truly bless you and yours and hold you close. My heart aches for us both.

    With Love,
    Kimberley Carlson

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  7. Kelly,
    I attempted to leave a post yesterday showing my solidarity with you in regards to allowing Death with Dignity for those suffering from dementia but sadly do not see what I wrote posted today.

    I have a familial history of Alzheimer’s and lost my mom to the disease in January of 2020. I, too, am fearful of the disease and constantly research along those lines. I saw your interview with Deborah Kan via the website, “Being Patient: The Latest Developments for Alzheimer’s Disease”. I then accessed your blog and attempted to delineate the many reasons I agree with you that Death with Dignity should be an option for those suffering from a form of dementia.

    I won’t reiterate all that i wrote yesterday. But, I do agree with you on this issue, because all forms of dementia are terminal illnesses for patients. All forms of dementia cause the loss of quality of life, suffering in many forms (physical, cognitive, emotional, and financial), and certainly make it so one loses dignity during the final stages. I really believe, as you do, the option for Death with Dignity should be allowed for those suffering from any/all forms of dementia.

    My heart breaks for you and so many others. I wish I could meet you and tell you what an amazing person you are, so beautiful and so brave. I am sorry you are fearful and distraught. I wish there was something I could do or so to alleviate those feelings for you. I guess we need to speak up when we can and hope our voices are heard in regards to this subject that impacts so many.

    Peace and Blessings to You,
    Kimberley Carlson

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    1. Hi Kimberly,

      Thank you for the nice uplifting post. I just saw your comments today and approved them on my blog that’s probably why you could not see them. I am going to be meeting with some people who all have early onset Alzheimer’s who all want the ability to choose to die with dignity to see if we can figure out a way to form an alliance and get legislation passed to support this. Strength in numbers. I appreciate your support. I wish you were here to give me a hug! Enjoy your week.

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