My baby sister will celebrate her 81st birthday next Tuesday. Those who have followed this blog for a while know that she is an Alzheimer’s victim. I visit her every Tuesday and Friday afternoon without fail.
Usually, I draw up a chair near her recliner and hold her hand. The T.V. is always on with old reruns of “The Waltons” and “Little House on the Prairie.” We talk quietly, or she talks and I listen, ignoring the programs, which we could both recite verbatim.
She talks incessantly without ever being able to finish a sentence or explain herself. I can sometimes see the sorrow in her eyes as she gives up. At other times she laughs and says, “Oh, I’m just crazy or I didn’t do that right.”
Alzheimer’s disease causes memory deficits and makes it hard for people afflicted with it to stay in the current moment. I have learned that people with Alzheimer’s continually struggle to make sense of the world in the face of their declining cognitive function, and it’s a deeply lonely and isolating experience. So, I realize that my sister, growing more confused by the day, knows what is going on, but has no control over the downward spiral. Is she afraid?
June is always happy to see me. At times she is very sweet telling me how much she loves me and how beautiful I am. She still likes to joke.
When she says, “You are very pretty today,” I ask, “Oh really?” She replies, with a twinkle in her eyes, “No, not really.”
At other times, and lately, more often, she is engrossed with the activity outside her window living in an imaginary world. There are people out there, people that I cannot see, some she knows and some she does not know. They are doing all kinds of interesting things. Tuesday there was a child in the group, who does not like her.
Of course, she is hallucinating. A hallucination can be understood as a sensory experience that is imagined. In other words, she sees, hears, smells, tastes or even feels something that is not really there. So far, June only sees and hears people, and she does talk back to them. If they invade her room, she tells them to go away. “This is my house.”
These false perceptions are caused by change within the brain that usually occurs in the middle to later stages of the disease. Hallucination is associated with a faster decline in Alzheimer’s victims.
That fact makes me very sad. How much longer will I have my little sister?
June is also delusional. A delusion involves a set of false beliefs. She frequently tells me the caregivers hate her or they are stealing her stuff or one of the men is in love with her. I have learned that everything in her room must remain in its place. If anything is moved, she believes it has been stolen. It’s the disease that causes these behaviors.
I am trying desperately to learn how to deal with my sister’s illness. For this impatient, sassy gal, who is known for saying it like it is, this journey is sometimes one step forward and two steps backward. There is no way to deal with it rationally. You cannot reason it out. Seldom do I disagree with June, but yesterday, when she said that our Mama was outside her window with those other people, I said, “No!” Mama is not out there. She is in heaven with Ted and baby Eric waiting for you.”
“Who is Ted,” she asked.
“He’s your husband, and Eric is your baby,” I replied.
“I had a baby,” she asked with wonder, and then she was back to her friends just outside the window.
The experts tell us that caregivers and loved ones must:
Remain calm and resist the urge to argue.
Try not to reason.
Listen and flow with the moment.
Be gentle and concerning regarding any fears.
Maintain a routine.
Use distraction. (Doesn’t work—she will not be distracted.)
I am slowly mastering the art of dealing with Alzheimer’s, but I have discovered that I must first “Lead with my love.” So, I go with gifts—chocolate one day and a Wendy’s Frosty the next. I feed the goodies to my sister one bite at a time. She can no longer grip anything with her fingers. Then I hold her hand, and sometimes we sing. She still remembers the words to many of our old church songs. Our favorite: “Jesus, Hold My Hand.”
I am losing my sister. With every confusing moment, she is slipping away. To one degree or another, I have taken care of June all her life. What will I do when she is gone? I know life for me will be much easier, but, oh, so lonely.
Before I leave, I always pray with her asking God’s protection and assurance of His love toward her. Then, overcome with weariness, I make my way home having spent every ounce of energy I could muster, but it’s all worth it.
Galatians 6:9, “And let us not grow weary in doing good, for in due season we shall reap if we do not lose heart.”
Be good to your suffering loved one.
REMEMBER, THE SUN WILL COME OUT TOMORROW!