Mark Stephenson

Bill, language keeps changing. If we listen to the voices of people who are blind, you'll find many of them saying that it pains them to hear their blindness associated with "lacking perception, awareness, or discernment." Similarly, people who have intellectual disability with the word "retard." My understanding of 1984 is that Orwell was concerned with the increasing use of language to deceive people. One can easily talk about lack of perception and stupidity without resorting to words like "blind" or "regarded." 

kelib, thanks for your concern.

Dementia runs strongly in my mom's side of the family. So of course I wondered over the past few years (with dread) whether this might be the way I'll spend my final days as well. As mom's dementia has gotten worse, ironically, I have grown less concerned about experiencing the same end myself. With the help of some medications to calm her anxiety, she has been amazingly content and good humored most of the time. She's in a good Christian place where people genuinely care for her and the other residents. She is comfortable overall. Sometimes it seems that the biggest discomfort with the dementia is not experienced by my mom, but by we who love her. Maybe, if we took our cues from her, we would be less anxious about it as well. Could that be one of the blessings that God is bringing through this decline in my mom's life - a way in which the wound of seeing my mother's decline has brought me just a little more trust in my heavenly Father? Maybe.

Mind you, I'm not saying that God allowed her to get dementia for my sake. Not at all. But I wonder if this is one of the collateral blessings that God is bringing to mom's family through her dementia.

John, thanks for your comment. With your level of experience and your history of strong advocacy for employment of people with disabilities, your opinion holds a lot of weight with me. I just don't understand people who claim to be disability advocates and as part of their so-called advocacy seek to TAKE AWAY choices that some people who have disabilities want.

Elly, yes! Same with my mom whose journey with dementia lasted about 12 years. Though difficult in some ways, we still had a lot of good times together during those years, and mom shared her love with others in her own way nearly to the end of her life! What a loss if some doctor had decided that she did not have sufficient quality of life and euthanized her.

John, what a touching song. Not many popular songs are written as odes to people with dementia! Ms. Eikhard gives a beautiful gift to all of us who have a loved one with memory loss.

In the spirit of sharing, here's a link to a Parade Magazine article from yesterday's issue, "Unlocking the Silent Prison." The main point of the article is that research has shown that people with dementia find written communication much more useful/memorable than spoken communication. For example, one person wrote on a note for her dad, "We are going to the doctor," instead of just telling him. The written note made it possible for him to comprehend that they were going to the doctor, and he didn't repeatedly ask where they were going because he knew. I'm going to try this with mom. 

John, thanks for your comments. To me there is a vast difference between ceasing to prolong life by removing life support and actively snuffing out a life using poison or some other means. My understanding is that palliative care is so much better nowadays that nearly all people can face death without fear of painful suffering. A couple years ago, I wrote a reflection on the death of Dr. Jack Kevorkian. In response, Rev. George Vander Weit articulated some of the same arguments you make, and he made some additional points as well.

Great idea. I just did.

John, I never thought much about how one could reexperience life from one's younger years as memories regress. Could bring horror (as you describe) or joy depending on what is stored away. Also, could bring a questioning of one's salvation, if one's memories regress to the time before one received Christ. John Swinton has written an outstanding article reflecting on what it means to be a person when one loses more and more memory. He says, "Persons are not defined by what they do but by what they are, or perhaps better, as David Keck puts it, by whose they are.3 The paper develops a practical theological critique of contemporary notions of personhood as they relate to the experience of dementia and argues for a revised understanding centred in God’s commitment to human beings which is not defined by doing but by being with and for the other." (John Swinton, "Forgetting Whose We Are: Theological Reflections on Personhood, Faith and Dementia" Journal of Religion, Disability, and Health, Volume 11, Issue 1 April 2007 , pages 37 - 63)  The whole article, which can be found by searching for "dementia" at the Journal of Religion, Disability, and Health, can be read for free, at least until the end of November.