I found Alzheimer’s Disease to be a very powerful teacher over the course of my Mom’s 17-year journey through it. I want to share with you a couple of the most enlightening, soul-changing lessons it taught me:
1.) Acceptance -- Alzheimer’s is a “kick in the gut” kind of disease. The diagnosis knocks the wind out of you like falling off a galloping horse and hitting the ground at great speed. It hurts like hell and leaves you bruised and aching. You have a visceral, deep, grief reaction, as if you’d been told someone you love died. And, in a sense, Alzheimer’s can be thought of as a very slow, mind-stealing, personality-altering thief of life. But it doesn’t have to be!
When my mother was diagnosed, first I got very angry and railed at the Universe that such a sweet, wonderful person, who gave selflessly to others all her life, could possibly be punished with this affliction. Once I moved beyond that, I wanted to stick my head firmly in the sands of denial and keep it there for a decade or two. But I couldn’t. I had to help her through it. I had to accept what was -- reality. But I’m not talking about curling-up-in-a-small-ball-of misery-and-waving-the-white-flag-of-surrender kind of acceptance. No, indeed! What I’m advocating is a sort of life-affirming, defiant acceptance. The kind where you look fear (and Alzheimer’s) in the face and say, “I may not be able to stop you from taking precious pieces of my loved one, but you can’t take away our love, devotion, dignity and simple human pleasures of living. You can’t define who my mother is or who I am. You can’t take away the joy of being alive!”
My defiant acceptance approach served us very well over the years. It gave me perspective on things and helped me navigate the very tough choices that had to be made on a day by day, sometimes moment by moment basis. Defiant acceptance allowed me to be not only the best advocate for my mother, but also the best daughter I could be. Both are vital. So, if you face a diagnosis of AD (I’m calling it AD from here on because it’s shorter to type), you can take the defiant acceptance approach, for yourself or your loved one. Cultivate the positive treasures of life, and wring every single drop of love and joy and satisfaction from each moment. It may not change the outcome, but it will make the journey rich, abundant, & beautiful beyond measure. Life worth living…
2.) Patience -- I don’t know about you, but for me Patience with a capital “P” has been a life-long lesson. Apparently, I’m a slow learner, so I’ve been given zillions of opportunities with this one! But Patience, like Acceptance, has many faces or facets. I found I was absolutely no good at sitting back in resigned silence, waiting for things to change or un-change back to what they were. I’m not that kind of person. I have way too much energy, passion and purpose for changing the world to be patient with injustice, with evil, with willful destruction of our planet, with man’s inhumanity to man, with greed, cruelty or unnecessary suffering -- all of which are crippling our world. So, in some circumstances at least, impatience is called for as a driving motivator for change, a call to action. Maybe I’m just trying to put my flaw in the best possible light :) But, be that as it may, I have lived my life learning patience over and over. Alzheimer’s Disease is a wonderful teacher of patience. Oh boy, is it ever!
I had to learn to hear unlimited repetition -- of stories, of sayings, of poems, of songs, of questions, of observations -- I called this the endless-loop feature of AD. My Mom would just get “stuck” in an endless loop of repeating the same thing. For example, we were stranded in an airport after missing a connection (due to weather) and had a 5 hour wait for the flight home from a wedding. This was the last time I traveled with her alone by air. It had already been a very stressful trip. One in which my mother, as is common with AD, got very confused being in unfamiliar surroundings, out of her routine. I was sad that even while visiting the house where she was born and grew up, where her sister was still living, she remembered it not at all. So much for long term memory, I thought. So, as we were sitting in the airport (a place full of noise and commotion and distraction), I wasn’t able to leave her side, even for a minute--to get food, or tend to a call of nature. We were joined at the hip for five very long torturous hours. She must have asked the question, “Where are we going?” at least a thousand times. I’m not exaggerating. I started out telling her, in detail that we were going home from a wedding, I told her where we had been, whom we had seen, etc., but after the 248th repetition of this explanation, I got creative. Realizing that whatever I said wasn’t “sticking” in her brain, I just made up destinations -- like, Timbuktu, Crazy Wanna Come, Somewhere Over the Rainbow, and on like that. It became a kind of game, to distract her and keep me from going over the edge into insanity. It worked! It even entertained our seatmate on the plane, where Mom continued to ask the question and receive my very outlandish creative answers. It was harmless enough, and a rather good coping skill.
But seriously, AD pushes anyone’s patience to the max. Even a saint might be sorely tried by the level of patience required 24/7/365. I’m not a saint (as those who know me will attest). But, I found the deep well of patience was there for me to draw upon in dealing with Mom’s condition, over and over, day after day, year after year. No, I wasn’t perfect, God no. I made mistakes. We all do. Here’s the big secret: as a caregiver, you don’t have to be perfect. You just have to be “there” and willing. That’s it! I just gave you perhaps the most valuable tool you’ll ever get -- you can forgive and be gentle with yourself. Your compassion for your loved one can spill over for yourself and that’s perfectly fine. So, try your hand at practicing Creative Patience, or Selective Patience, and see how it changes your inner self and eases the journey.
I’ll continue these Lessons from AD in future blog posts. Stay tuned for more action and adventure on the journey of care giving!
Karen is a compassionate, enthusiastic student of life, who cared for her mother for 17 years. She brings her insights, compassion, experience and desire to share knowledge and healing to this ongoing conversation with others on the caregiving path. If you are caring for a parent, spouse, friend or other loved one this site offers sanity-saving tips, open-hearted self-care ideas, and an open forum for discussion, connection and sharing resources for the journey.
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