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Ohio Department of Aging Boomerang: It all comes back to you!

Boomerang: It all comes back to you!

My Family - August 2010

Locked in the Moment: A Personal Story About Grief and Advance Directives
One Ohio Family Struggles When a Loved One's Wishes Are Not Followed

Editor's note: The following story was submitted to Boomerang by Cinde Blank Boles. We thank Cinde for sharing her family's ordeal so that other families will be aware that it's not enough just to have advance directives - such as a living will, durable power of attorney and, in this case, a do-not-resuscitate order - families must be diligent to ensure they are followed.

Feb. 6, 2010 - It's 5:00 in the morning and I can't sleep because my heart hurts. I need to tell her story.

Her laugh is contagious. Her smile brightens the room. Her dark, guarded secret is safe from the casual acquaintance. Our Mom has Alzheimer's and is locked in the moment.

There are four of us children - eight, really, when you count our devoted spouses. We were all raised the old fashioned way: with hugs and an occasional spanking. We were taught to appreciate what we were given and work hard for what we wanted. Even as we four grew older, we gathered often at our parents' home, adding more and more chairs around the tables as our families grew. We were blessed that a chair was rarely removed. We know the value of a close family. Today, although we walk different paths, we are all united by our love for our mom and dad.

Alzheimer's is such a cruel disease. It robs people of their dignity and, worse, their ability to identify their loved ones.Two years ago, I was fortunate enough to be able to resign from my work and help my parents. Our wonderful Dad had been diagnosed with cancer and Mom's condition was worsening. I thank God and my husband for the chance to share more time with Dad in his last year with us. The pain of our loss of him is still fresh.

Because we siblings and our spouses shared the work, we were able to keep Mom at home for a year after Dad passed. We used to tease Mom by telling her that it only took two of them to raise us but it was taking eight of us, plus the grandchildren, to care for her. We called her a princess and did our best to assure that she felt like one. Then, one heart wrenching day, we had to place her in assisted living.

Alzheimer's is such a cruel disease. It robs people of their dignity and, worse, their ability to identify their loved ones. There was always a sparkle in my Mom's eyes as they greeted me. I never noticed it until it was gone. On that day, you could have ripped my heart out, thrown it on the floor and stomped on it. Even that graphic description can't relate the depth of sadness and loss that I felt. Now it's a crap shoot as to if she recognizes us or not... mostly not.

Our parents really enjoyed life and had no regrets. We had always suspected that to be true, but they confirmed it one day when they told us so. They also told us how they did not want to continue living if there was no quality to their lives. They had all the appropriate papers in place so that we would not be burdened with decisions at a crucial time. Our father was fortunate not to have suffered too long. Our mother, at 83, is not so lucky. A short time ago, we thought she would get her wish and pass peacefully, but it was not to be.

Mom had been hospitalized from an infection and seemed to be slipping from us. On one visit, my older sister and I heard Mom talking to Dad, saying she'd be home soon to fix his supper. We smiled, not realizing how almost true that was. The next day my husband received a call from that sister. She and her husband were on their way to the hospital. She was sobbing and telling my husband that we should get to the hospital. I called her back when we were on our way. She was beside herself with grief and anger. It seems that even though Mom had signed the order for "DNR," do not resuscitate, they brought her back when her heart stopped!

Brought her back to what?! A life of confusion and sense of loss?! The decision she had so carefully made was ignored! The hospital said they did not know she had a DNR.

By the time we got to the hospital, our brother and his family were already there. I don't know if the hospital had ever seen such an immediate gathering of love and fury. The hospital could not locate the DNR paperwork and therefore did not acknowledge it. My sister had brought a copy of it with her but at Mom's bedside they had her sign another. Through her sobs and with our support, my sister did the signing, our brother at one side of her and me on the other. A dreadful thing only made bearable by the knowledge that it was Mom's wish.

Regretfully, Mom survived the ordeal. Before you judge me for saying this, please realize that, as a result of the Alzheimer's, my beloved Mom exists only in my memories. The woman who possesses her body is a stranger to me, and most times to herself. Mom would be appalled to see herself as she has become, and it will only get worse. She will regress until she is bed-confined, unable to speak or comprehend. There is no cure for Alzheimer's, only sorrow.

Mom is in a nursing facility now and is well cared for. My siblings and I take turns visiting so that she sees one of us every day. Sadly, it only takes a blink after we're gone and she doesn't remember anyone was there. When we visit, we laugh with her and wheel her through the hallways. We tell her stories over and over and patiently answer her repetitive questions over and over. I put up a good front, but for me every visit is another day of mourning.

Someday, when my sister and I can wrap our minds around the task, we intend to do something to encourage medical facilities to find a better system to help patients carry out their wishes. DNR papers need to be prominent. DNR wrist bands should be bright red or orange or any color that will stand out. The wrist bands need to be bold enough to grab the attention of a dedicated caregiver during a crisis. The caregiver - who is trained to save lives - must then be strong enough to stop when they see the DNR wrist band. Stop and let God take over.

I share my Mom's story in hopes of saving others from the heartache we have endured and will continue to endure until Mom and Dad can be together again.

June. 27, 2010 - Mom is 84 now and no longer qualifies for assisted living. Her condition requires the skilled nursing area of the facility. Her body and mind keep deteriorating. Now she must be fed and have every need attended to. Before she was admitted, she could not taste or smell, due to medication, we suspect. Now she cannot walk and she has become blind, perhaps due to a small stroke or to the fact that she can no longer process what she sees. She can only hear and feel. We sing songs to her along with the CD player and listen to her tell us about the world she sees in her mind. She responds sometimes to stories about the family, but as a disinterested listener. Even when we tell her who we are, she no longer knows us, not even occasionally. She doesn't smile or laugh anymore. We are all heartbroken. We can only wait and pray for the day she will be at peace and we can begin to heal.