The Long Goodbye: A Family Caregiver's Story
by Sherrie Norris
As a retired nurse, Eilers knows much about caring for the sick and dying, but she admits, the "job" feels different when you are caring for your own loved ones.
Eilers mother died in 2010, but not before Eilers knew her experience must serve to help others who were plunged into the caregiving role. She eventually became a member of the board of directors for the HCCF, but has recently stepped aside from active service because history is repeating itself, this time through her husband's rapidly declining health.
Losing more than independence
"We have your mother in the emergency room. How fast can you get here?" Eilers will never forget that phone call. "It was a four- hour drive from my home in Raleigh to the Newport News, Va., hospital," she said, "and I made it in record time." "I knew what I would find when I got there. The signs had started a couple years before Mom's 85th birthday."
Upon her arrival at the hospital ER, Eilers found her wide-eyed mother with childlike fear on her face. "I could feel her physical relief that I had arrived. Pounding in my head and gripping my heart was the ugly thought that this was the beginning of the end for my mom -- and I hugged her tighter," she said.
"After a monthlong bout of flu, mom was hospitalized for extreme dehydration and weight loss," Eilers said. " After many hospitalizations, I came to realize that this was mom's way of letting me know she needed me to take care of her; a request she could never make or words she could never utter."
Eilers knew it would be hard, but she thought she could do it and do it well. After all, she was a nurse, and a psychiatric nurse, at that. "How wrong I was," she said.
Describing her mother as a strong and very proud woman, Eilers said, "Mom had been telling her friends for a decade, as they, one by one, broke up housekeeping to go live with their children, that there was no way she'd go live with her daughter, and she meant it."
Living alone, and "losing her mind," Eilers said, "mom's fear and panic overwhelmed her and finally manifested themselves physically, which was largely self-induced."
We've all heard the term "cry for help," Eilers said. " Well, that's exactly what her medical crisis was all about. She needed me to take care of her, but pride would not let her say the words; fear of losing her secure life in her own home turned her life into a nightmare."
Role reversal becomes real
Eilers stayed with her mother for five months before putting her into the car and bringing her to Linville "My mother didn't come to live with me," she said. "She came to die with me."
It was clear, too, that their roles were quickly reversing.
The Alzheimer diagnosis added fuel to a growing inferno. As Eiler's tried to meet her mother's needs, denial reared its ugly head.
"I'm really uncomfortable when people praise me for caring for my mother because I know it was not all pretty," she said. "In earlier caring for my grandmother and father, there were none of the personality issues that existed between my mother and me. I bear the shame of my worst tempered moments."
Having been intimidated by her mother since childhood "and walking on egg shells to avoid upsetting her and sending her into one of her tirades," Eilers said, "I knew I had to stop mom's verbally abusive behavior when she cursed me in my own home, or she would run over me and I would lose control of a situation that put me in charge."
During those times, Eilers tried hard to keep in mind that her mother had been tricked out of her home of 50 years, taken away from her life-long friends, and into a house where she was a guest and had limited personal belongings.
"She, as so many displaced parents experience, are depersonalized when they move in with their children," Eilers said. "I tried to imagine what I would feel like in her place. But I couldn't dwell on it much. It was just too painful."
The outbursts continued and paranoia, as well as denial, set in. One difficult situation followed another.
"Alzheimer's can turn the sweetest little granny into a foul mouth, angry, paranoid person you don't recognize," Eilers said. "For my mom, who we predicted would be difficult in her old age, Alzheimer's was Mom on steroids!"
Mildred, her mother's best friend in Virginia, saw it coming on earlier. "Mom was once the most energetic and colorful member of their swimcize class of 22 years that met thrice weekly," she said. "When she began to get out of step, and no longer able to follow the routine, Mildred saw it. When Mom stood in the driveway on the wrong days waiting for her ride to class, Mildred knew something was wrong."
Help in the High Country
As in most family caregiving situations, help is needed, and Eiler's found it. "Several amazing women here in the High Country stepped in to walk with me and Mom through this last long walk down the last long road," she said. "I think of them as Angels on High -- the High Country, that is. If space allowed me, I could recap, in detail, how each of them was instrumental in helping me care for my mother -- including those with High Country Caregiver Foundation, Caregiver Haven at Avery Senior Center, and volunteers from the church."
And, she said, she could share how the painful process of Alzheimer's/dementia -- for everyone involved -- changes family dynamics, results in role reversals, stresses the caregiver, and so much more."
"As I prepared for this interview, and Sherrie requested a photo of Mom and me together, I was rattled," she said. "I remember looking at the annual birthday photos of Mom and of our trips together and realizing, that beginning in 2006, something was wrong. It was like the light had gone from her eyes. Her mouth opened and her cheeks made a smile, but the eyes were vacant. If I had been more observant in those years I would have seen that flat smile as a harbinger of worse to come. Mom wasn't disinterested, she was lifeless. I chose to provide a photo of the two of us in the last best times."
Journaling for the Journey
Having kept journals through her caregiving experience, Eilers intended to write a book after her mother died, "to share with Alzheimer's support groups, respite care centers and any groups trying to help the caregiver deal with the firestorm of emotions in dealing with the dark side of caregiving," she said. But, she hasn't been able to finish it.
"In the end, after my mother passed, I pulled out my journals to write, but it became such a dark place for me to be that I gave up on the writing," she said. "And, I felt guilty knowing there are many others out there who suffer angst because they can never measure up to the image of loving caregiver 24-7. As much as a person may love their relative, tempers flare, insecurities simmer, and long-standing grudges and resentments bubble to the surface, which results in less than sweet TLC."
In a perfect world, the caregiver would always be kind, and patient, Eilers said, "and just smother their loved one in warm fuzzies as their condition worsens and the caregiving responsibilities, expand and suffocate you."
Eilers is being encouraged to finish the book by those closest to her, but it might be a while before she can do so.
Another Long Goodbye
In the last year, Eiler's husband Tom has begun what she considers "another long goodbye," as his failing health has resulted in numerous hospitalizations, forced him to retire, sell their home in Raleigh and move everything to the mountains.
"We've raised children, run marathons together, skied every year from Colorado mountains to New Zealand glaciers, biked Vermont and the Creeper Trail," she said. "We've hiked a Maine Outward Bound challenge course and the Appalachian Trail, we've danced together, traveled together, led motivational speeches, laughed and had wonderful friends."
The "long goodbye," she said, "means that everyday you watch your loved one say one more goodbye to one more memory, one more skill, one more ability. He is still here. He still knows who he loves and what he likes. The feelings are still there, it's just the details that are leaving him."
Help is on the way
If you or someone you know are making that long goodbye with someone in you life, Eilers encourages you to reach out. You don't have to do it alone.
High Country Caregivers Foundation is a nonprofit organization that currently provides respite care and other supportive services to family caregivers in Ashe, Avery, Mitchell, Watauga and Wilkes counties.
For more information, contact Brenda Reece at (828) 265-5434, Ext. 128, or toll free at (866) 219-3643, ext. 128; visit http://www. http://www.highcountrycaregiverfoundation.org or follow HCCF on Facebook.