By: John Silva – April 2021
Alzheimer’s is a devastating disease. It slowly erodes the memories of those we love until there is nothing left. And, it’s confusing, mixed up, and backwards. Patients and caregivers often feel confused. Patients often remember things that happened fifty years ago, but are unable to remember something that happened just now or ten minutes ago… or was it yesterday… nah, probably last month… but on the other hand, maybe it was last year? I don’t know… I can’t remember.
Do you recall Hal the supercomputer in Stanley Kubick’s movie 2001 a Space Odyssey? Hal flawlessly orchestrates the spaceship’s complex life support, propulsion, and navigational systems. However, small mistakes begin to occur in his performance, and eventually he has a major meltdown and he kills the astronauts traveling in stasis and then he tries to terminate the remaining members of the crew.
As Hal’s hard drives are being removed, he realizes he is losing his ability to function, and he feels himself losing control. He tries to assure the remaining astronauts everything is alright and all he needs are some minor repairs. Hal, who once processed billions of bytes of information per second, can’t recite “Mary had a little Lamb” and ceases to exist. It is eerie to see how much of this movie is a harbinger of what we are now experiencing in the wake of Alzheimer’s disease.
Another huge box office smash was Avatar where computer generated images are created that act out the feelings and thoughts of the people they portray. I posit that avatars may be a solution to the very difficult problem of interacting with people who have Alzheimer’s disease. Because avatars don’t have a history with the patient, and they don’t have feelings which can be hurt, they could be very useful.
For example, you are visiting your mother who has late stage Alzheimer’s. Elizabeth has no memory of your many previous visits and she doesn’t know who you are. What could be more hurtful than having her say… Do I know you? It’s heartbreaking… but not hopeless. Because even if she has no idea of who you are, you can still bring happiness and joy into her life.
How would this work? You enter Elizabeth’s room not as her daughter but as an avatar who can be your stand-in. By becoming your own avatar you can easily transition from a confused and hurt son or daughter into the role of a kind visitor. You open the door to your mother’s room and enter with a huge smile and assume the role of Mary, a happy and cheerful visitor.
When Mary, the avatar, enters the room, she announces that she has a gift for Elizabeth and she presents her with the soft fluffy baby hippo which she deftly trades for buttons the cabbage patch doll she left with her yesterday. She has given and regiven these two precious gifts many, many times, and Elizabeth enjoys them each and every time she receives one. Mary smiles and gives her a hug and asks how she is doing. Our patient is pleasantly surprised, but she has no idea that Mary is her daughter and that she faithfully visits her everyday.
Via the avatar, Mary brings Elizabeth the news of the day which will soon turn to vapor and disappear, but no matter… it will have done its magic. Elizabeth is happy and she enjoys the attention and the visit. Mary ends her visit by telling Elizabeth she has a message from her daughter who loves and misses her. She gives Elizabeth all of the current news as to what is happening in her daughter’s life which meets her needs as well as those of Elizabeth’s.
Why does Mary need an avatar? Why can’t she just be herself? Elizabeth’s last memory of her daughter is when she was twenty years old. And all of her memories from the time her daughter was twenty years old to the present are hit-and-miss or just gone. At times, most of those thirty years simply don’t exist in Elizabeth’s mind. If Mary were to insist she is Elizabeth’s daughter who is fifty years old instead of twenty, it would be more than Elizabeth could comprehend, and it would upset her.
A similar situation occurs when Elizabeth looks at herself in a mirror, and she asks why is there a stranger in my room? Because she remembers herself when she was forty, she doesn’t recognize herself as being seventy. For this reason, mirrors are not encouraged in memory units as Alzheimer facilities are currently called.
By letting the avatar stand in as a visitor, Elizabeth can just accept her as a pleasant person. She will not have to go to red alert because someone is impersonating her twenty year old daughter for some unknown and probably dastardly purpose. And, her daughter posing as Mary, the avatar, can share news of her children and grandchildren with her mother. She can also tell her mother how much her daughter loves her and by her avatar, share her own memories of when she was twenty something. In addition, she can share her dreams for the future.
Alzheimer’s disease isn’t a straight line. Patients drift in and out of reality, and they can be in different weeks, years, or even decades depending which synaptic paths may or may not be working at the time.
So, if your loved one with Alzheimer’s happens to be lucid on the day you visit, celebrate it as a precious gift to both of you and do your best to enjoy it fully. And, when they are not, as an avatar, create amazing adventures you can both enjoy. Get into your trusty open cockpit bi-plane and let the wind blow your hair and take trips to exotic places full of romance and wonder… create great masterpieces of art and make scientific discoveries that save the world. Create awesome and magnificent trips to alien worlds and meet magical children and talking elephants that can fly. Create delight and triumph over sadness and despair.
So, until all is quiet and the lights go out, view yourself as the one chosen to bring huge buckets of sunshine to drench the life of that precious person whom you love. Whether they know who you are isn’t important. What is important is that while they are still with us, love them, enjoy them, and help them to laugh and when the time comes to part hold their hand and bring comfort to them as they are embraced by the open arms of life everlasting. Because life is everlasting it is also patiently waiting for us as well. When it is time to embrace the hereafter, we can reunite with those we love and our eternal and loving Creator.