I remember walking into my parents’ house to see Mom and Dad. We talked about innocuous things. But all of a sudden, Mom would explode into a rage. I’d stand there trying to figure out what had just happened, what had been said or done to cause the very sudden outrage. Then I would let go the futility of understanding it and seek a way to defuse the situation. And I learned that the fight was with Alzheimer’s, not my mother.
If I thought I understood what my dad had to manage in being her caregiver, I didn’t really understand all. One day the doctor asked him what he thought about Mom’s condition. She might be doing a little better, Dad said. She isn’t going to get better, the doctor said. She is going to get progressively worse. Dad nearly cried … and my dad hadn’t cried since the death of his mother in 1966.
There were things none of us on the outside knew because Alzheimer’s is so deceptive. The caretakers are the ones who are on the front line of the battles. However, when my father died, I stayed with Mom at her house for several months trying to keep her in her own home where she wanted to be.
Each morning I woke early to put on a fresh pot of coffee and to retrieve the newspaper from the front porch, read it and put it on the sofa where Mom would find it when she came downstairs at precisely 8 a.m. She took her first medication, then carried a cup of coffee to her usual place on the sofa. I was usually at the computer composing.
I remember how she worried about forgetting. “It will be OK, Mom. I will remember for both of us.” She would look up with relief on her face, smiling when her eyes met mine. “OK.”
One midsummer morning she came downstairs with that smile, and went through the usual morning routine: medicine, coffee, newspaper. I was working on a Family Recovery article. She spoke.
“I think our living together is working well.”
I agreed with her and smiled.
After a while she went into the bathroom and closed the door. My husband came into the house and sat down in Dad’s recliner. The woman who stormed out of the bathroom was not the same woman who had gone in just a few minutes before. I didn’t know whether to sit at that desk with my back to her or stand up and face her, face the Alzheimer’s, but because my husband was just around the corner I stood up and turned around. I was just a bit taller than her, enough that she had to look up to meet my eyes. That must have intimidated her because she calmed down immediately.
“You have a home of your own, a husband. You need to be there,” she said.
“I can’t. You want to be here. You can’t be alone. If something happened to you, nobody would know. I have to be here.”
“I want you to go home,” she insisted. “I don’t need a babysitter.”
I finally relented, gave in. “OK. I will see to the arrangements.”
I remembered the day my mother had sat down with me, not long after her diagnosis. I knew I was not going to like what she was going to say because she asked me not to say anything until she finished.
“When I can’t take care of myself anymore, I want you to put me in a nursing home.”
“… and when I don’t know who you are anymore, stop coming to see me. I won’t be there.”
How many times can a heart break?
Some of the truths of Alzheimer’s are that one person can’t take care of an Alzheimer’s patient around the clock singlehandedly. You can’t fight with Alzheimer’s and win the argument. You learn to make adjustments and establish a routine that never changes so – you hope – your loved one won’t feel afraid and over-react. You learn to read the person and the triggers. You learn that whatever they say is OK whether it’s right or not. Silence is golden. You learn patience because you know some day it could be you in the dementia shoes. How will you want to be treated?
The Ohio Association of Area Agencies on Aging (OAAAA) recently provided written testimony at the State House regarding Ohio H.B. 23, emphasizing the importance of providing education and training for first responders to best help someone who has wandered away and is lost, or stopping people who should not be driving a car, rescuing them from abuse, all things the dementia patient doesn’t realize are wrong. First responders need to understand that a person becomes combative, difficult to handle, when they are having a difficult time communicating and understanding what is happening around them.
Larke Reechie, CEO of OAAAA wrote, “… We are all aging, and we are living longer. In Ohio we have the sixth largest population age 65 or older in the nation, and our ranks are continuing to grow. By 2030 Ohio’s population age 65 and older will increase by 40 percent compared to 2015.
“Aging is the number one risk factor of dementia, and roughly 10 percent of those age 65 years and older are living with Alzheimer’s disease today. Ohio is projected to see nearly a 20 percent increase in those living with Alzheimer’s and other dementias by 2030.”
I used to think it was a terrible thing for a person to go through, losing their memories, forgetting who they are, who their loved ones are, all of the experiences in their lifetimes that make them uniquely them. But I learned it’s much worse for the loved ones who watch the decline, who swallow their frustrations and continue to look after their loved one, yearn for periods of cognition and lucidity to talk and laugh and reminisce. To enjoy time together.
Family Recovery Center helps families to find ways to navigate through these challenging times. For more information about the agency’s treatment and education programs, contact FRC at 964 N. Market St., Lisbon; phone, 330-424-1468, or email, email@example.com. FRC is funded in part by the Columbiana County Mental Health and Recovery Services Board.