I am coming up to the 20th anniversary of my beloved father, Jerry Atkins’s death. Born in 1921, he died in 1994. He had Alzheimer’s Disease for about 12 years prior to his death. He was younger than I am now when he became ill.
My father’s Alzheimer’s changed my life. It changed the way I see myself, the world, and everyone in it. During the time that he was ill, I experienced some of the oddest, most wonderful experiences with him when I “went down the rabbit hole.” I did this so I could be with him “in his world.” When he “saw” people with knives about to attack him, rather than trying to repeatedly reassure him that nobody was threatening him, I raised an imaginary weapon, and with intense fury, stabbed the air hard…assuring my scared father that “I got them!”
His whole demeanor changed within moments; until we would repeat this charade (which I believe was NOT a charade because it was TOTALLY REAL to him.) He calmed down and felt safe. This tactic of falling down the rabbit hole worked!
Years into the Alzheimer’s. when my father could no longer have a conversation, he heard his favorite prayer melody. Then, he would immediately sing every word, on tune, loud and clear; so obviously filled with emotion, that tears would stream down his cheeks.
After years of myriad “rabbit hole” experiences with my dad, I continue to wonder what a person who has Alzheimer’s (and other forms of dementia) thinks about. I question what the world looks, sounds, and feels like to them.
Once I understood that it did not make sense to try to convince my dad, right after he ate, that he probably was not still hungry, even though he said that he was hungry, things changed…I changed. Why not just accept that he did not remember that we had just had lunch and agree with him? It seemed easy enough to say, “Sure Dad, sounds good. We’ll eat something delicious. Maybe some grilled cheese and tomato. You love grilled cheese and tomato.” Needless to say, that conversation would induce a smile (and a little lip smacking.) Till 2 minutes later, when we would have it again. Maybe this time I would suggest tuna on rye! Then, after another minute or two, same thing, only this time I suggested egg salad. I went through all of his favorite sandwiches, which, triggered in me, all of the fun lunches we had…picnics, diner counters, you name it…so there were many pluses for both of us with this approach.
When the minds of the people we love direct them differently from our own minds, we need to change the way we relate and talk to them. What they tell us is their truth. Their reality. They are not making it up. It reflects the way they see the world.
Because they cannot hold onto the response to the question you just answered for them, they will ask the same question. Again and again. And again and again. And again and again. If we get upset, they will too. They will pick up on our frustration, disappointment, and anger but they won’t have a clue why we are behaving the way we are. As we wonder what is wrong with them; why are they so forgetful? I question whether they wonder what is wrong with us? Why are we so angry?
Both of us are living in our own realities with our own truths. And for the most part, we do not understand the other person’s reality or truths at all.
What is easy for us to remember is impossible for the person with Alzheimer’s to recall. They are not withholding information or being difficult. The information is just not there. They are speaking to us from their world and it makes sense to them. If you don’t have any recollection, no stored memory of what you just said, why wouldn’t you say it? You have no idea you are repeating yourself. You have no idea you don’t remember.
Falling down the rabbit hole is the first step in accepting and adapting to the world my father lived in till he died. I came as close as I could even though I could not see it, live it, hear it, or experience it as he did. I just knew that I did not want him to be alone.
How to do it? Forget about being right. Forget about showing the person the “true” reality. Yours is not within their reach. Theirs is their true reality.
Not just entering but embracing the world that my father lived in made it possible for us to have amazing moments together. Often, when other people saw us and heard us, I am sure they thought we were both rather crazy. At some point, I don’t remember when, it could have been when we were tap dancing along main street, laughing our heads off, that I realized I didn’t care what anyone else thought. I only cared about my dad feeling safe and happy. When we laughed, I felt that together, we scored a home run. I was happy.
I had a choice. Be positive or be negative. Until my father died, he was able to feel a full and rich emotional life. How did I know this? I observed him. I noticed when he was frightened, when he was tired, when he was annoyed, when he was confused. I noticed when something startled him…and when he looked pleased. It became important to him and by extension to me, to join him in a peaceful environment, without interruptions, loud noises or sudden movements. My father flourished when we sat or walked outdoors, listening to the breeze, watching the birds, singing songs, recalling happy memories. Even when it was I, telling the stories that he told me when I was young, he seemed to listen…or not…but he appeared calm. I knew he would not choose to be in the condition he was in, in this different reality, but he did not have a choice. The only one with a choice was me. And I chose to enter his world.