By Sid Adelman
Note: Sid Adelman is a lecturer, author and occasional contributor to the Integrated MD Care blog. His clear, direct, and sometimes blunt writing style is designed to do one thing – get you to take action on important healthcare and life decisions. It is with gratitude to Sid that we present our readers his article.
I’ll start off this piece on the assumption that you do love your spouse or your partner and love your adult children and that you would not willingly choose to cause them immense suffering.
We know some things about how the forms of dementia affect the physical, social and mental state of the patient which could include fear, anger, frustration, depression, dependence, loss of dignity, incontinence, memory loss, and how you are going to be remembered.
“The morbidity and mortality of the caregivers
is sometimes worse than that of the patient.”
We also know even more about how the disease affects the caregivers, most often the spouse or partner or adult children. The morbidity and mortality of the caregivers is sometimes worse than that of the patient and the impact on their lives is horrendous.
Judith Schwartz wrote that “…being a caregiver for someone with cancer is a walk in the park compared to being a caregiver for someone with dementia.” Caregiver’s suffering is well known and well documented. There are so many stories of family dysfunction being exposed and the repercussions of disagreements related to a demented family member – probably nothing to worry about for your family.
Some people with an early diagnosis have stated that when things get bad – and they supposedly will know when that is – they will end their lives. Our (unsupported by any peer-reviewed studies) experience is that the percentage of people who follow through with this intention approaches zero.
Alice Waited Too Long
In the book and movie Still Alice, Alice waited too long and could not follow her explicit instructions about how to end her life. The people who wait too long have condemned themselves and their spouses/partners, adult children to see them through all the stages of the disease and eventual death.
Friends and other family members may say they will stay with you through thick and thin. A few will but most of the rest will thin out and may feel guilty as they abandon you.
Phyllis Shacter wrote a book and gave a TED talk about her husband’s decision to end his life before he was unable to carry it out. Her husband, Alan Shacter had an Alzheimer’s diagnosis and he was determined not to experience the disease’s trajectory, nor to expose his wife to the extraordinarily difficult impending years of caregiving.
You Have Choices – But Not the Time You Think
This discussion is about your choice if you are given a rock-solid diagnosis of one of the forms of dementia such as Alzheimer’s, Lewy Body, vascular dementia, frontotemporal or any of the other less known forms.
The confirmation of the diagnosis would eliminate the reversible causes of cognitive loss including certain medications, thyroid condition, vitamin B12 deficiency, dehydration, infection, depression, normal pressure hydrocephalus and sleep disorder.
No less than a second and third opinion by a neurologist [in another practice] should confirm the diagnosis before you would proceed.
This is about a choice you can make in a limited window of opportunity. You can choose to accept the disease for yourself and your spouse/partner/adult children or you can choose to end your life before you are mentally unable to do so.
A legal, accepted, and reasonably pain and suffering free method is voluntarily stopping eating and drinking (VSED). This process usually takes 10 to 15 days in which time hospice can make the transition controlled and comfortable. VSED references are provided at the bottom of this piece. (link to Dr. Bob’s story on end of life options act)
You will have to tell your spouse/partner and you should tell your adult children, and appropriate family and friends. It will make it so much easier for them if you tell them and if you do it the right way.
Here are some talking points and anticipated questions:
Voluntarily Stopping Eating and Drinking (VSED)
Talking points for family and friends
I’ve been diagnosed with Alzheimer’s. I’ve had [these tests] and the diagnosis was confirmed by two reputable neurologists. This disease is fatal and progressive.
I’ve researched how it does progress and I’m very aware of the fear, anger, frustration, hallucinations, delusions, language erosion, loss of dignity, incontinence, loss of memory, grief (at what was lost), untreated pain and discomfort (that can’t be expressed) and I know I don’t want any part of it.
And so I’ve decided to end my life before I’m unable to do so. I know that if I wait too long, I’ll lose the window of opportunity to do it and so I’ve chosen [date] to begin. I’m hoping you’ll support me and be with me to the end. Let me be clear, I’m making this choice for me and I want you to honor my wishes.
Let me be clear, I’m making this choice for me, not for you so don’t give me any push back about how honored you would be to watch me go downhill and to change my diapers.
I imagine (some of you) will hate to see me go and thank you for that thought but be assured that after the initial stage of the illness, it would no longer be me, it would only be the shell of who I was.
“Better a month too soon than a year too late.”
Q: Why so soon? Why can’t you wait until things get bad?
A: Almost everyone who did wait, did not end their lives. Not for me.
Q: How are you going to do it?
A: I’ll use a legal and relatively painless method called voluntarily stopping eating and drinking. Hospice (and I hope you) will help keep me comfortable during this time. It should take 10 – 15 days. I’ll have to hire a 24/7 caregiver during the first week to keep me from falling as I go to the bathroom and to help with hygiene requirements.
Q: I just saw a report on a new medication the FDA might be approving. Why not wait for that?
A: The only medication – even the one you are mentioning – will not stop or even slow down the progression and all the wonder drugs that will “cure” Alzheimer’s is bunk and some clinics that claim to stop Alzheimer’s from happening are a scam.
One more thing to consider: If your spouse/partner/adult children know you considered the option to end your life before the dementia sets in and you decided against it – also knowing the impact on the caregivers – they are likely to resent you even more than the average caregiver.
Taking Control of your Death by Stopping Eating and Drinking, Boudewijn Chabot
Still Alice, Lisa Genova
Choosing to Die: A Personal Story, Phyllis Shacter
On My Own, Diane Rehm
Dementia and Aging: Ethics, Values and Policy Choices Robert H. Binstock et.al.
The Moral Challenge of Alzheimer’s Disease: Ethical Issues from Diagnosis to Dying Stephen G Post