After 58 years, Mom and I have finally had the talk. No, not that talk. This was a conversation where Mom truly opened up and said what she really thinks; she spoke from the depths of her heart. My wife refers to such things as “Holy Moments.”
It sounded, at first, like complaining, and Mom never complains. “They serve too much food,” she said. “Too many starches, too much salt. Not enough green leafy vegetables. The meals are almost never served hot enough.”
And there were complaints about other aspects of service, too. Ice poured into her water pitcher at midnight. Emptying the waste basket at 5am. Medication at 5:30. How’s a person to sleep?
And then it was my turn. Mom complained that I blow into her room like a little tornado, check stock in the refrigerator, check stock in the bathroom, gather laundry, spend only a few minutes without anything fresh to say, and then go to conduct business with various members of the staff. And when I drive her to church, well, I don’t talk much then, either.
When we completed an in-room conference with her doctor the other day, I asked to speak with the doc in the hallway about another matter. Mom thought, “Why aren’t they talking about it with me? It’s my health.”
Mom’s point was that among the people with whom she interacts frequently, she isn’t being respected. No one listens to her. No one knows what she thinks, what she needs or wants, how she really feels.
I asked a question: “When someone asks how you are, what’s your answer?”
“I’m fine. Everything’s in God’s hands. Have a good day. God bless you” (or a number of variations on the theme).
“Right,” I said. “And when the head nurse asks how your are?”
“I’m fine. Everything’s in God’s hands. Have a good day. God bless you.”
“Right, again. And I’ll just tell you that I get the very same answer whenever I ask how you are.”
I continued. “It’s a wonderful thing to be able to assert that everything’s alright all the time. It’s self-affirmation. It’s a statement of faith and submission to the Almighty. It’s an inarguably good thing to live in a completely positive state.
“But my question is this: After getting the same answer a dozen times, why would anyone bother to ask you how you are?”
Mom’s mentation level has been very strong since her hospitalization in April. She understood my point and acknowledged her contribution to the problem. At the same time, I pledged to be more transparent with her both about my own affairs and about her healthcare. I told her that I was excited about this new way of communicating; excited to see what good things would come of it.
Mom is an experienced speaker. Years ago, she would drive all over the region to tell her life story to those who’d invited her. Later, armed with his learner’s permit, Michael did the driving.
Knowing that I attend several Alzheimer’s support groups, Mom thought out loud that she’d like to address these groups; to tell them, from her side of the issue, what it was like to have her ability to think questioned at every turn; to live in an institution; how she felt about the treatment rendered by her caregivers.
She then realized that the speech has already been given. It comes in the form of a posting on the wall outside the head nurse’s office. Ten Requests of an Alzheimer’s Patient was written by Rick Phelps who suffers, himself, from the disease. This, of course, is one of seventy forms of dementia. Rick’s is early-onset Alzheimer’s.
Ten Requests of an Alzheimer’s Patient
PLEASE BE PATIENT WITH ME Remember, I am the helpless victim of an organic brain disease which is out of my control. TALK TO ME Even though I cannot always answer you, I can hear your voice and sometimes comprehend your words. BE KIND TO ME for each day of my life is a long and desperate struggle. Your kindness may be the most special and important event of my day. CONSIDER MY FEELINGS for they are still very much alive within me. TREAT ME WITH DIGNITY AND RESPECT as I would have gladly treated you if you had been in this bed. REMEMBER MY PAST for I was once a healthy, vibrant person full of life, love and laughter, with abilities and intelligence. REMEMBER MY PRESENT I am a fearful person, a loving husband, mother, grandmother, grandfather and dear friend who misses my family and home very much. REMEMBER MY FUTURE Though it may seem bleak to you, I am always filled with hope for tomorrow. PRAY FOR ME for I am a person who lingers in the mists that drift between time and eternity. Your presence may do more for me than any of the outreach of compassion you could extend to me. LOVE ME and the gifts of love you give will be a blessing which will fill both of our lives with light forever.