I painfully remember the conversation I had with my Grandma on Christmas Day 1996.
"Hello?"
"Hi Grandma, it's Leah."
"Who?" She sounded confused.
"It's Leah," I said, raising my voice.
"Oh, well hello, Sweet."
"How are you doing?"
"Well we're fine." She paused, then said, "Sweet, how did you get this number?"
Her question stunned me because the number I'd dialed had been her phone number since 1981.
"Grandma, you gave me this number. This is your telephone number...."
Clearly something was wrong, but I hadn't known what to do. Each time we talked, she seemed a little worse, and I would come away feeling helpless.
She was ultimately diagnosed with Alzheimer's disease, and her husband, my grandfather, was found to have a severe level of dementia at the same time. Since their son, my biological father, had abandoned them in 1985, they had designated me to have durable power of attorney for them. The time came for me to assume that role on January 15, 1997. I was 29 years old and had been married for only eight months when I received a call from one of their neighbors. They had been found sitting in their car with a flat tire on the side of the road in Forrest City, Ark., about two hours from their home.
And so began this incredible journey for me as well as for my grandparents, Euther and Ima Maxwell. It's ironic because when I was born, I was a baby unable to speak or act for myself. Somewhere along the way, we had eclipsed; I became for them what they had once been for me. My new role called for me to be their protector and voice. Through their legal documents they had entrusted me to guard them and to handle all of their business.
When Alzheimer's disease struck my grandparents it was totally new to me, and I was overwhelmed by the knowledge that the choices I made would directly impact two other lives--not my own. I loved them so deeply, and that's what made it hurt so much. I would have given my own life if it could have made them right again, but at the height of their Alzheimer's nightmare, I remember hearing Jesus' loving and gentle voice say to me, "You don't have to give your life to restore them; I've already given Mine." Death finally separated us, but I praise God that, because they each knew Jesus as Savior, I will see them again in eternity where, even now, they are more fully alive than they ever were in this life.
The ordeal of being a caregiver took its toll on me in every imaginable way. I had to bring them from their home near Hardy, Arkansas to Memphis. They endured medical testing to determine the exact nature of the dementia that held them fast. I had to face the fact that they didn't have the financial resources to move into a nice assisted living facility, and the level of care they were both going to require was more than I could provide. The only recourse I had was to put them in a nursing home, and the guilt I experienced from doing that almost ate me alive.
Another devastating aspect of our situation was repeatedly having to explain that the Maxwells' son had been missing for 12 years, having abandoned them by his own choice, and that was why their granddaughter was doing everything. My mother, Judy Sutton, had divorced my biological father because of his bigamy when I was a year old. She remarried three years later. Her second husband, Larry Sutton, is truly my Dad. Both of them were wonderful towers of strength for me, but the shame and embarrassment I felt over my biological father never quite went away. Any time I referred to "my parents" people looked at me funny, and I had to awkwardly explain why the granddaughter was handling everything and not the Maxwells' own child.
In time I got them settled in a nursing home where the level of care was acceptable. I made frequent visits in an effort to be certain they were being properly cared for. I made it a point to know the nurses by name so I could call to see how things were going.
But life in the nursing home did not sit well with my grandfather. He had always been a very active, out-of-doors person, and the confining life of a nursing home was more than he could take. Together my grandparents made repeated attempts to leave. They would tell the nurses to call them a "street car" because they needed to get home. Grandma was always telling me that she needed to go home because she needed to make supper. As his dementia advanced, my grandfather became belligerent with the nurses. I received call after call from the staff telling me things that my grandfather had done, like slapping a staff member or pushing a nurse into the street. The emotional toll of receiving those reports was enormous. I felt helpless, and it seemed like it would never end.
I wound up seeing Bonnie Wallace through Central Church's counseling department. She was finally able to help me deal with the pain and guilt of being a caregiver. After several sessions, it all came down to something Bonnie said as I wept bitterly in her office. I'd been telling her about this awful thing I'd done by putting my precious grandparents in a nursing home. I thought I was the most horrible person in the world.
"But don't you see, Leah?" she said confidently. "You put them in the nursing home, yes. Your name is on the documents, yes. But was it really cruel, in light of the reality your grandparents are facing? No, it's not. Cruelty would have been if you had left them in Arkansas with their own car--what if they had been killed driving that car? Or what if they had killed someone else while driving that car? You brought them to Memphis to care for them. And you're caring for them because you love them. That's all you're ‘guilty' of--loving them."
I know now that was the truth, but in the heat of the situation I had trouble buying it. I wanted to know why they couldn't just miraculously get better, and if they couldn't do that then why couldn't they just go on and be with Jesus?
For two years my grandparents lived in the nursing home, and things eventually settled into a type of normal. The end of it all began rather unexpectedly when my grandfather developed pneumonia. They sent him to the hospital, and he and I spent the day together waiting on medical tests. We talked about all sorts of things, but several times throughout that day he looked at me and said, "I sure am glad you're here with me." I told him I sure was glad to be with him, too. By evening the hospital staff sent him back to the nursing home in an ambulance. I saw him safely tucked in, then turned to walk back to my car. After I crossed the street, I glanced back, smiled and waved to him. He raised his hand and smiled back at me. It turned out to be the last time he saw me. Less than a week later, he was sent back to the hospital because the pneumonia had gotten worse. His doctor called me at work and was talking about his condition, then suddenly said to me, "Now you don't want a Harvey Team, right?" In that moment I realized how serious his condition was, and when I saw him that evening, he was unconscious on oxygen, and his breathing was heavily labored. I left the hospital with a "deer in the headlights" expression, and at 5:30 the next morning the hospital called to tell me he was gone.
I never told Grandma that he had died. Only once did she mention that she didn't know where he was. She looked around the room and finally said, "I guess he's gone fishing." I assured her that that was undoubtedly where he was.
One month after his death, my husband Chris and I learned that I was pregnant with our first child. Drew was born in October, and I took him to see Grandma on Thanksgiving Day, 1999, after feeling a deep sense of urgency to let her see him. She smiled brightly as he grasped her finger.
"He's strong!" she said.
Four days later Grandma fell and hit the back of her head. She was sent to the hospital, and they had to shave part of her hair to treat her wound. When I came in to see her, our eyes met and her face brightened. The nurse saw the change and asked, "Who is that?"
"That's my granddaughter!" she said with a smile. She didn't know much of anything else, but she knew me to the very end of her life, and that was a precious gift from God in the midst of the horror we had been living.
Five days later, during the overnight hours of December 11, 1999, Grandma lapsed into unconsciousness, and at 2:30 a.m., the nursing home called to say that she had "breathed her last."
Given what had taken place between January 1997 and December 1999, it was truly easier to bury them than to see them in that nursing home. When the end came and I knew I had to let them go, I had to let my guilt go as well. I know today that I did everything possible for them. I was there for them, trimming nails, doing laundry, spending time visiting and talking. I was very vocal about substandard care, and I fought battles for them with indifferent nurses and doctors who were more interested in receiving fees than in providing care.
It's been 10 years since it all began, and having the benefit of hindsight I can see that God's wisdom really guided me through everything. There were times that seemed so difficult I didn't even know how to pray, but still God was there, unshakable and all-knowing. I had survived the role of caregiver with the tremendous support of people around me. No caregiver can function alone. Those providing care for family members need to utilize support groups and counselors who can help people deal with the weight of emotional stress. The support of a listening ear or a gentle hug can do immeasurable good.
Today I'm a stay-at-home mother with a 7-year-old son and a 5-year-old daughter, and I'm trying to lavish love on them the way my grandparents always did on me. I love opportunities to tell them about their great-grandparents. Sometimes I catch Drew looking at photographs of them when they were young.
"She's pretty, Mom. Was this your Grandma?"
I smile and say, "Yes. Let me tell you about both of them."
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