Dr. Cheryl Woodson

Losing Them in Pieces. Dealing with the “Living Grief” of Caring for a Parent with Dementia.

Recently on Good Morning America, Robin Roberts interviewed actress Kimberly Williams-Paisley, about her family’s struggle with the dementia that’s claiming her mom. People have called dementia “The SLOW Walk Home,” meaning that we lose the person long before she actually dies. With death, sweet memories can offer comfort. That doesn’t happen when you have to watch your loved one change over time, knowing that they are losing themselves, and realizing that you are losing your relationship with them. Reality blocks memories of the good times, eroding any possible comfort. I call this “living grief” in my book TO SURVIVE CAREGIVING: A Daughter’s Experience, A Doctor’s Advice.

Seven years into a ten year caregiving relationship, my mother looked at me, and said, “Do I know you?” Mother created me. Even though she did not graduate from high school, she was a force of nature, inspiring, supporting me and my brother to advanced degrees and professional success. Mother was my shero, and with her determination and strength, my role model. Those four words hurt so much that I redesigned Mother’s wedding rings into the necklace I always wear. I thought it would keep her near me, but it didn’t. I got through the hard times only with the support of family, friends, and other caregivers.

Ms. Williams-Paisley said her family is only talking about their struggle now because her mom didn’t want anyone to know, but she realizes that her father was “fading away.” I understand the family’s wish to honor a loved one’s wishes and support her dignity, but isolation may have made her dad fade more quickly. Silence is deadly, compressing hidden secrets that become more powerful, eroding caregiver strength and spirit from the inside. This adds to the risk of physical problems caused by stress and self-neglect. Stress compromises complex thinking, memory, sleep, and the immune system. It also aggravates the risk factors for heart disease. Caregivers are usually on top of their loved one’s medications and doctor appointments, but often, they ignore their own health. In my practice, a 58 year-old caregiver dropped dead, leaving two 80 year-olds behind. Illness and early death are not uncommon among caregivers.

Ms. Williams-Paisley said her family decided to speak now because they had “gotten to the point where [they thought] their information could help someone else.” I suspect, they waited until the dementia had stolen so much from her mother that the senior could no longer feel embarrassed, or hurt. Unfortunately, while waiting may support seniors, it hurts them by endangering their most important resource: the caregiver.

Silence also deprives caregivers of the wisdom and experience of others who’ve already navigated the roads we’re on, and it leaves us without help for the journey. “Don’t Ask; Don’t Tell, Won’t Work” is the 3rd of my 5 Keys to Caregiver Survival. We expand our caregiving capability when we recruit extra eyes, ears, hands, and feet (as well as laps to cuddle in.)  People can’t help us if they don’t know we need it.

Even if Ms. Williams-Paisley’s family chose not to share their pain with friends and neighbors, they could have gotten support through the Alzheimer’s Association, local caregiver groups, and on-line caregiver communities. Her mother need never have known, but she would have enjoyed the benefit of an emotionally and physically healthier caregiver.

Reach out to an understanding and supportive community. Let other caregivers help and hold you through your living grief.

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