As our American families rush inexorably into our dementia epidemic, the most frequently unspoken question is, “when is the individual gone”? Or put more prosaically, if my mom can no longer recognize her children, is my mother gone and is the husk of her body a simple vestige of only my memory, but not her soul as her spiritual journey has seemingly ended. This is the heart wrenching dilemma of what some mistakenly call the state of the living dead.
This issue of continued presence or vacancy of a loved one goes to the heart of the dementia tragedy, and equally important, how we care for and support those afflicted. After 20 years as a dementia care provider, and many successes and setbacks, I feel that as a society, we err on the side of resignation and aversion, and are very quick to let go and give the care over to a stultifying institutional model of care. This is a tragedy for both the needs of the victim, and the needs of family caregivers. The benefit of unconditional love after all goes both ways.
I feel that there are two basic reasons we tend to turn away from loved ones with dementia: 1) they often do fail to recognize their family and friends at a certain point in the progression of the disease which tends to force a surrender to hopelessness, and 2) they can sometimes become agitated and even angry when they are visited thus discouraging the effort. I think this is why up to 80 percent of my residents fail to receive any regular family visitors and in many nursing homes this number is much higher.
To understand these reactions, one needs to appreciate the disease process. Essentially, most forms of dementia are caused by a corrosive protein buildup on our brain cells that govern our short term memories. This will progress and cause mild short term memory loss, depression and agitation, but that is just the beginning. This confusion will progress to a point of a greater loss not only of memory, but also a sense of time and place and lead to bewilderment. Ultimately, communication skills completely break down leading to periods of random repetitive motion, and finally, to a vegetative state.
Perhaps one should think of the dementia experience with advancing short term memory loss, as one living increasingly with long term memories captured on an old time movie reel that plays in the back of their minds that becomes increasingly dominant over time. Progressively, as they lose short term memory, they will live, quite literally, in their past.
When people tell me they stop visiting Mom because she doesn’t recognize them or mistake them for someone else, I remind them, that they remember them as younger, without weight gain or loss or graying of hair. Maybe you really do look like Uncle Bob now? And as to the agitation and anger, that can be explained by considering whether their long term memories were not very good ones. Perhaps the marriage was abusive? Financially strained? Difficult years growing up? Drugs or alcohol involved? When I see angry behavior in dementia residents, I understand that they are probably responding to some memory in their past which is largely unconnected to their immediate environment. And in that sense, one can argue that time travel really is not only possible, but happens every day.
So let’s go back to the opening question of when has the dementia victim left us, or when has her soul departed and the spiritual peregrination ended?
For me, I believe that the soul abides, and the journey continues right up to the end. And I say this for three reasons which I think is demonstrably true:
First, all sentient human beings never lose a sense of time and space. Think about it and close your eyes and try to imagine time stopping or try to imagine one’s non- existence. It cannot be done; time never stops, one cannot imagine nothingness. We are simply hard wired for time and space. And what this means in the context of the dementia patient is that they are ever present and living in the world of time and space as we all do constantly. Loss of short term memory has nothing to do with living in the world but it does change.
Second, because the dementia victim dwells largely in one’s long term memories, spiritual insights and constructs will remain vital as they are usually imbedded in our individual and youthful memories. I may have become a raging atheist in my twenties, but I was also an altar boy at ten, and those early memories will always nurture a sense of comfort, reverence and wonder. It is in this very real sense, that God will remain constant to those, of whatever faith, if He was embraced in their early years.
And third, though a dementia sufferer may lose some powers of reason and speech, they never lose their intuition. They know who is kind, impatient, or indifferent. They recognize and respond to a loving word, a gentle touch or a familiar smoothing melody. They are still in the world and reacting to the way they are treated by their world.
So with these considerations in mind, I think the most common mistake families make in dealing with dementia is to insist upon dwelling in the present. While this is understandable because we fear a complete abandonment, it is likely to only cause frustration for all concerned. When in conversation, I suggest that discussions about fond memories of the past would elicit more comfort and joy such as a marriage, birth, parents or meaningful victories of whatever type. Another consideration would be to share religious themes and rituals such as the rosary, the Haggadah, or Gospels. In this way they can be touched and comforted in a way that penetrates multiple emotional layers and needs.
I appreciate the difficulty that the adult child or spouse has in maintaining an active and loving relationship when so little love is returned and the disappointments so frequent. But any care aid that has walked this journey to the end, knows how gratifying and rewarding the effort of love can be for even of the frailest among us. Often times because our dementia victims are left alone by their families, and our care aids become the last primary relationship in their lives, those aids know with certainty that they are doing God’s work and reap the benefits of unconditional love.
So to those families suffering in the grip of dementia, I urge you to be more patient, and trust your intuition that the loved one is ever abiding, and the spiritual journey continues for both of you.
Stephen Sarsfield Bowman
President of Peregrine Senior Living based in Syracuse, New York
Stephen Sarsfield Bowman is the President of Peregrine Senior Living, which is based in Syracuse, New York, and which develops and operates long term care facilities in the eastern United States. Peregrine’s primary focus is memory care, and over the last 20 years has developed a compassionate and dynamic model of care. Known as the Peregrine Way, this model embraces the long-term memory of its residents and the frequently unmet emotional needs of their families. He worked for many years on state and federal campaigns including those of Mario Cuomo and Walter Mondale. The highlight of these efforts occurred in 1986 when he was the campaign manager for Mark Green’s U.S Senate race (N.Y.) where he had the pleasure of working with Michael Waldman, David Corn, Jeremy Karpatkin, John Siegel and Amy Schewel. This passion, however, peaked in 1988 when he ran for the U.S. Congress and lost, badly, realizing that he campaigned a lot like he golfs; with great enthusiasm but disappointing results.