My Disappearing Mom: Alzheimers joins the family.

Distance made it easier to see, but distance also made it more difficult to provide protection against the brain virus: Alzheimers.  When we talked on the phone between California and Illinois, mom’s conditioned mode of talking and subject content masked the silent steps of the mental intruder . Phone conversations had been a half-century practiced habit of my mom, because many of her friendships were maintained by phone as she constantly moved across the country.

I would ask mom something specific whenever my mind gave me tiny cues of something amiss, but she always successfully redefined and redirected me away from the suspicion.  Until one day, when there was no chance of redefining what she asked me directly. Her parents, my grandparents, had passed on over twenty years previously, yet she asked me two main things: “Have you heard from the Reids lately ?” and ” Isn’t that weird that I’m thinking of them ?”  And that’s the moment I dropped the ball big time because of fear. I was afraid to tell my mom she was “losing it” over the phone. So I lied to her by saying the Reids were on their annual vacation in the northeast part of the country and they’d  probably be back soon. I could not pull back from the lie once I spoke it. To me, I was buying time for help from her friend of thirty years who lived within fifteen minutes from her.

There is a strange defense of the human mind when this disease strikes. It is a connection between the mind and the spirit, almost as if the mind is the spirit–or the main housing of the spirit–contrary to how we usually express spirit by pointing to our hearts. I say this because of my mom’s severe negative reactions and harsh cursing language to her dear friend’s attempts to help her reorganize her life with a calendar and helpful tips. The denial that anything is wrong with one’s mind is ultra protective. The fight is stronger than giving up the car keys because the time has come. Freedom and self-respect are at risk now. If I cannot be me as I recognize myself then I cannot know anything for certain. That is the fear, the conditioned truth–maybe the real truth. Order is shaped by structure which gives us holding points like handle bars, to get around easier by the connections made in our minds.

Everything MUST connect somehow–as a like or dislike–with a connecting history we can explain in time and space sequence. Alzheimers totally shuffles the sequences of time and space or place, even sounds and sights. It is an amazing  disease in how it takes over and remakes a person on the inside. BUT it’s NOT like a personality-changing effect which I’ve heard happens often to people who suffer from severe head concussions or super hard hits to the brain. My mom’s hand gestures–all of her body language–and all of her usual vocal expressions never changed. That’s one of the things that make this disease so damned frustrating to the families. They see the usual actions and reactions and hear the same voice tones but cannot understand why mom or dad are not making any sense. This element took me almost half a year to pick up on. One afternoon, in the middle of talking, mom quickly leaned forward, frowned, put her finger to her lips and loudly said ”shhhh”, like telling a child to stop talking. She leaned her head to one side and said in a whisper, “Someone’s in the garage. Hear that ?”  I reacted in sync, frowning, titling my head, squinting my eyes, and looking the same direction as her for ten seconds. Then I nodded, sighed, straightened up and said, “It’s ok now, they’re gone, mom.” How do you know?”, she said. ” I just heard them leave and close the door.” She relaxed and became ok again.

As part of releiving stress for families, I tell them to make a little test.  The next time they visit mom or dad, to figure how advanced the disease is, call your mom and dad by their first names instead of saying ”hi, mom”.  Most people still say hi, mom, etc. I believe that your mom or dad will say something to you about it if they are ok, and that they won’t even flinch if the disease has become deeper entrenched. The value of this is two-fold. One, accept them in their state, because they remain the same people with the same memories although shuffled or lost in the back room so to speak. Two, the most valuable of all, you now have a chance to listen to some of their history and dreams and hopes never before heard which they tell only to strangers. This was true in my mom’s case. The hospice lady would call me to verify some of the stories my mom told but also to tell me things I never knew. My mom wanted to be a dancer. She told this to the lady with emotion. I wish I had done this little test myself.

Besides shuffling all of the life experience pages in our minds, mixing the dates and times and places like cut-outs and re-glues to other pages, this disease creates conscious illusions like living your sleep dreams in real time. This disease also takes memories from past dates and places and holograms them into the current time and place which makes for some strange scenarios. I finally got to the point of never asking mom how she was nor what she thought and never did I ask what she did for the day. I simply commented on the weather and started telling her what I did for the day. She would always have something to say or add, whether or not it made sense to me. Conversations became speaking drills of verbal collage or something that would resemble a Picasso painting.

In our case, flying to California to bring mom back to Illinois, we were fortunate for a simple accident that made her stay out of our way for the packing of her things for the trip. We transferred her from the hospital to our hotel room where she stayed the three days we had for our mission.  She had fallen the night before and could not stand up. We reached a neighbor of hers and he discovered her condition which prompted us to ask him to call for an ambulance. We had only three days to work everything around. This required a lot of giving away of furniture and some clothes to neighbors in the gated community. I told them mom always preached giving to the poor, which everyone was in the apartment community. Yet, one day, my son said he felt it was wrong doing what we did. “I don’t feel right about this, dad”, he said. I explained that while the disease tore everything up within her mind, it also required us, in our circumstances and situation–time constraint, long distance travel and limited finances–to tear apart much of the physical belongings she accumulated over the past forty years. When we settled into the van of her friend, who was able to get mom’s ok to drive us to the airport, mom looked out the front window and said, ” This is a lovely place, Don. What’s the name of it ?” He had to compose himself a few seconds before answering, ” Sacramento.” It was only at THAT point I realized mom thought she was in a completely different city upon entering our hotel from the hospital. She never knew she was only three blocks away from her apartment.

My mom’s mind had such a strong dedication to surviving that I believe her mind/spirit was able to create deceptions to those outside of her or far away from her for more than a year.  Some of this deception was consciously created but half of it was the mind taking over, as crazy as that may sound. I think this because of the third night she was in the health care center. I came to visit. She was asleep. I sat by her bed watching her sleep and I suddenly realized she looked very different: pale, suddenly older by a decade, totally worn out. I thought she was going to die that night or that week. I was stunned and saddened. I returned two days later and her disposition was a bit more calmed, and her face and color had changed again to more normal appearance. So I wondered if I had witnessed the brain finally letting go of its protection mode because of the fact she was now in a very protective and happy environment with other people and care takers. I am always going to believe that is what I saw.

Perceptions make happiness and sadness, success and failure, love and hate, marriage and divorce. Perceptions are mentally created yet emotionally supported. Your MIND is the BIG deal of your conscious existence. Alzheimers attacks the perceptions department. Memories are the structure and scaffolding of beliefs and thoughts and life experience interpretations. Altered reality from this disease is much like the M. C. Escher lithograph ‘Relativity’–all those impossible staircases. The experience seems like being possessed by another’s interpretation of your life experiences. Someone shook up the slide show and placed every period of life in random order and some of those went in upside down or sideways.

So, what to do about all this ? Nothing. Keep up to date with new possible meds yet with close scrutiny of the side effects–which can be worse than the disease. Make no expectations or demands of your loved one who is affected. You never know when the reality shifts will take place. There is no schedule. Realize that some of the victims feel great frustration. Help make life easier, happier in every way possible. the greatest expectation should be from yourself to give the gift of  keeping life simple and as joyous as possible. You can handle every bit of it if you’re committed.

My mom lived almost one year more when we brought her to our town. She was happy to have others to relate to. I was overjoyed at the care she received from the healthcare staff and the hospice lady. I can say I did bring her to the best life she could have had for her last year. When she passed on I imagined her traveling back to the time of a photograph I have where she and my dad and two friends are toasting each other in bathing suit clothing on board a cabin cruiser on some lake. They were college grads and just starting their new graduate lives.           The End, as far as I know.