M. Ellenbogen 10-9-2015 interview with S.A. Terman, Ph.D., M.D.
I am living with Young Onset Alzheimer's Disease.
My first symptoms came at age 39. I was not given the diagnosis until I was 49. I'm now 57. What I have to say applies to many dementia patients--especially younger ones who may live longer.
This is a very devastating disease. Until I got this diagnosis, I wanted to live as long as possible, like almost everyone else. Now my goal is different. I still want to live life to the fullest, but only until it is my last opportunity to control when I die. The reason is that Alzheimer's will take away my ability to control my destiny. Alzheimer's will take away my ability to remember and my ability to carry out my plan. If my plan fails, I will be forced to have a prolonged dying because others either cannot or will not allow us to die, when we would want.
So I do not want a prolonged dying after I reach the stage of Advanced Dementia. Here's why:
I have several illnesses that cause me pain. Gastric reflux, stomach pain, stiffness at night. When I reach Advanced Dementia, I won't be able to ask for help or for pain meds, or to fluff my pillow to get comfortable so I can enjoy life or sleep. Instead, I will feel tortured.
Your term, "Dementia Fear" is not just a theoretical fear. It's a real issue. I can imagine myself laying there, uncomfortable all night long. Also, my pain gets worse when I have nothing to distract me.
It is important to me to be remembered for the person I was--NOT the person I am becoming. When my daughter was interviewed on FOX, she said, "My father was very competent, the 'go-to' person in his company, but he is no longer that way. That really hit me hard. My current condition is so far from what it was, and it will only get worse. I really enjoyed being a high level manager and being an important part of what was going on, being creative, being a resource for others and giving people advice... so very different from how I am now.
Furthermore, I worked hard to have an enjoyable retirement. But if I lasted to the bitter end of Advanced Dementia, all the money I have saved would be spent on me, leaving nothing for my wife. That would not buy me anything I really wanted. It would just be time without quality of life. And it would not be fair to my wife.
What hobbies did you, and do you still enjoy?
I used to maneuver a boat with great skill, to navigate close calls, but now I can't enjoy this hobby anymore. I used to enjoy electronics as a hobby. Now if I touch anything, it falls apart. I might even electrocute myself.
I wake up every morning and have to remind myself that someday I will need to end my life. Whenever I decide, it will probably be too soon. But I worry that I will forget to actually do it while I still can, or if I do remember by then I may not be capable of carrying it out.
How will I know when "my last opportunity" will come? I won't, for sure. That's why I am certain that I will be ending my life too early. Or if my attempt to hasten my death fails, it might put me in a condition that is much worse. So I just hope my timing is not MUCH too early. And I hope it works smoothly.
I know a Young Onset Alzheimer's Disease patient whose friend promised to give him enough Oxycotin to kill himself. But then the friend changed his mind because he did not want to be responsible for the Alzheimer's patient dying. I can understand that, but now what are his options?
I am afraid of ordering drugs over the Internet. They could be FAKES or just make me sick and feel worse but not kill me. There are so many scammers these days. You can't trust. Who knows what hell could happen if I were to try this way.
I had a friend named Dena, another Young Onset dementia patient. Probably Lewy Body disease. She took her own life. While I don't know what I don't know, when she first told me about her intent to die, a few months before she did it--I was really upset. I thought her dementia was not much worse than mine. Now I still wonder if she died too early, much earlier than she had to.
I know several people who are still doing reasonably well, but have several tanks of Helium that could bring about their death stored in their home.
As I get to know many Young Onset Alzheimer's patients, I would estimate half or more think about wanting to die while they still can, because they don't want to die slowly in Advanced Dementia. While this of course NOT a valid survey, what I've found is this: The harder I try to get people to talk, the more they reveal their fear and share their wish for a plan they could trust.
One Alzheimer's patient I know died by inhaling car fumes in his closed garage. He taped a message to the steering wheel of his car. It said, "Sorry I had to do this now, but I was afraid to wait because I might forget that this is what I want to do."
For myself, I hope my plan works so I won't be forced to die slowly, than I would want. It is bad enough that I must deal with the mental anguish of living with dementia. Every day, I have frustration, confusion, anger and I hate what I have become. And it only gets worse.
Recently, a salesman came to my front door and am so short-fused that I kept yelling at him, on and on and on. I really rip into people for the littlest thing. Later that same day I couldn't even remember what set me off. Bottom line: I do not like what is happening to me, the person I am becoming. It's bad now, and it will only get worse. And from what I have been reading, I have the kind of personality that will really cause problems as my dementia gets worse.
In addition, I must also burden myself daily about WHEN I should end my life--which I don't even like thinking about, but I must keep it fresh in my mind so I don't forget it. This makes life much less enjoyable living.
If the laws changed, I would not have to live this way. I wish we had a system that would allow me to live my life without worries so I could be sure--when I meet my specific criteria--I will no longer be forced to die slowly. I want to know that others would follow my previous directions that I stated in my Living Will and recorded on video--when my mind was sound.
How would I like to die and when? When I reach my criteria in my Living Will, give me a lethal cocktail. But our society and medical community are not ready for this. Yet I still ask: Why must I dehydrate for two weeks when the end result is the same, when I will die anyway? I will not only suffer more but will put my family with even more pain. Why should it be this way? I wish I could have one last great meal with them but I can't. If you were in this situation, wouldn't that make sense to you? Right now, I am already dying very slowly from Alzheimer's dementia, why must these thoughts also torture me? My dog died better than that.
I think the answer is that the system is absolutely broken. Our laws and our physicians just can't meet this need. And it affects so many people. As I said, maybe half of younger dementia patients will admit they want to die before they reach Advanced Dementia and that they worry a lot about this--if you can get them to talk about what they really feel.
Don't get me wrong. I am not saying that dying instead of living in Advanced Dementia is for everyone. It's only for those who said they made the decision to die while they were still competent. Physician-Assisted Dying can allow patients to die, but only competent patients. Why can't my wish be honored? I don't understand. If I decide, that is, make up my mind when while it still works, why must my mind still work just before I want to die?
So I want people like you--members of the American Society for Bioethics and Humanities--to help come up with a solution for me and people like me. We really need your help to have a choice, to live better and longer.
If you and others take a blind eye to our additional source of suffering, more people will worry and will suffer, and some will take their lives much, much early than they need to. We may never know how many people, like the man who left the note on the steering wheel, who feared not being able to wait longer, will have taken their lives when they would have waited if they had another choice that they could count on.
While Dr Stan Terman has a very good system to die somewhat earlier--to stop being fed and given liquid... and while it's probably the best out there... it is still not good enough. The problem is that 20 percent or more of us will still be able to stick food in our mouths--even after we have lost much of our other abilities and we meet most of our criteria for Advanced Dementia.
To possibly move up the time, Dr Terman asked me to try thickened nourishment. I never would have tried it, if he hadn't recommended it. So I experimented with "Thick and Easy." Doctors prescribe to prevent choking on food and drinks they don't go down the wrong way since the next thing that can happen is pneumonia. But have you ever tasted it? It's horrible--even when mixed with my favorite drink. Don't ever give me that stuff--even if my life depends on it. I'd rather die by dehydration. By the way, I added this statement to my Living Will.
Along these lines, I hope physicians and others get this message: Stop thinking of what can make me live longer when I reach Advanced Dementia. Instead, follow what I say now about what I really want. Listen to me. Remember what I ask for. Please!
I am revealing myself, my diagnosis, my wishes, and I am pleading with you: Please take action to change our laws. It may surprise you but a NEW law that will let us die when we want, will save our lives. We'll live longer. It will also lower our fears so we can spend the last few years of good living without this awful worry, that our last wishes will not be carried out.
I know many patients whose wishes were NOT followed because of incompetence or unwillingness on the part of their doctors. That absolutely must change so we can have confidence... otherwise some of us will kill ourselves when we can. The laws and Doctor's beliefs should not get in the way of what's so important to us.
Many right-to-die organizations have their own ideas on how one should die. And they do not get along with other organizations. To them I say: It is not about you or what your organization stands for. It's about the patients you say your organization is trying to help. Break down your silos. Figure out ways to work together to reach a better solution for this horrible problem and this devastating disease.