This is the first time I have stolen a title for my blog. But, I’m in good company. Patti Reagan “stole” this title for her 2004 memoir about her father, President Reagan. Her mother, Nancy Reagan, coined the term “long goodbye” in 2002 to describe the last years with Alzheimer’s sufferer, President Ronald Reagan. I first saw this term as the title for an episode of The West Wing, my favorite political drama. The episode aired in 2003 and focused on the relationship between the White House Press Secretary and her father, who was diagnosed with Alzheimer’s Disease.
Television’s allows America to show us who we are so we question if that mirror is accurate. I haven’t seen or heard of any show that has committed itself to exploring the diseases associated with aging. I’m sad to say that our treatment of loved ones aging is accurately mirrored in pop culture; it doesn’t exist. The Alzheimer’s Association advocates for the more than 5 million Americans living with the disease. I’m hoping this post helps their caregivers who provide 18.2 billion hours of unpaid assistance to their loved ones.
It is natural to disassociate ourselves from thoughts of loved ones dying, one of our nation’s biggest fears. Fear puts us in survival mode. We are ready to run, fight, or freeze. We just want to be left alone. But, the consequences of asking your aging parent to deal with this part of life alone are profound. (Consider this: the worst penalty that can be imposed on a criminal short of death is the same technique used in torture, isolation.) It is hard to talk about the end of a wonderful journey. It is hard to get in the car and spend time with someone who may or may not know who you are. But, you can use these tips to increase your chances of smiling when you make the effort.
The key to maintaining a meaningful relationship with a loved one who memories are slipping away is to personalize each minute. I love how A Dignified Life introduces the concept for caring for loved ones with dementia and Alzheimer’s, a Best Friend. Best Friends are the living photo album, memory book, and memorial candle who can bring about meaningful moments with someone who is just beyond reality.
- Folly: Gathering intel is fun but requires a level of dissociation from the detective. You cannot presume to know what is important to your aging parent based on what was prioritized in your home. Religious observances, for example, may have just been a marital compromise. My grandparents were very observant Jews. They walked to temple, had separate dishes for meat and dairy, and even a separate kitchen for holidays that required cooking in a separate oven. But, my grandmother used to sneak me out of the house to share pork-filled wontons and other Chinese foods. Additionally, getting older ironically awakens the young, mischievous sides of us. In fact, based on the shrinking brain and decreased efficacy of neural pathways, the elderly act just as impulsively as adolescents. Stories like this one of mischief and mayhem are great ways to wake up a sleeping brain.
- Triggers: I love fires. I went to overnight camp since I was 5 years old. My husband and I expressed our love in front of a fireplace. Whereas most of my friends share the warmth and comfort of a fire, it would be a mistake to think everyone has positive memories or impressions of huddling around a campfire. My father-in-law was badly burned as a child when trying to stamp out an innocent fire in the alley behind his apartment. It may make sense to share this story of how his son fell in love as a way to remember who I am or enjoy the shared experiences of finding love. Except, sharing the intimacy of the memory would nearly guarantee a traumatic response from my father-in-law. Taking the time to learn which memories are painful is just as important as learning which memories are pleasurable.
- Labels: My father loved to create nicknames for us. I loved to create nicknames for my students. Uncovering nicknames (not teasing, shameful name-calling) from childhood are helpful to grab your loved one out of their isolating zone. My father-in-law used his legal name, Harvey, all through school. But, he used his middle name, Scott, as an adult. This piece of family history is helpful insomuch a using the childhood name is more likely to create bonding moments.Aging works in reverse chronological order, the newer memories are the first ones to go. Our favorite possessions also have their own fond names. My mom and I had sequential license plates starting with the letters “LF” when I got my first car. We used them as proud monikers for the “lead foot” bestowed upon us by HER father, the man who urged everyone with a new car to open up the engine early to train it in case a need ever arose.
- Visitors: Grandchildren are a gift. My mother insists that being a grandmother
is intensely different and deeper than being a mother. Unfortunately, grandchildren and aging parents do not match. The increased energy of the child in combination with the quiz questions, “Who is this?” or “Don’t you know who this is?”, make someone in the throes of Alzheimer’s or dementia angry, sad, and frustrated. In fact, mislabeling a child, calling your daughter by your name, is a common source of agitation for caregivers. Correcting your loved one becomes a common source of agitation for the aging. Where your mother may have missed a generation, she still knew the child was family. It is best to agree with your mom and chat about a memory you have shared. More often than not, she will recognize your daughter before the story is over. It’s also not a time to find beautiful albums or frames for those little ones. Memory-related disease does not necessarily mean there are other health problems. But, poor eyesight is a given for all who age. It can be frustrating to be surrounded by pictures you cannot see.
Spark Note Summary
We have become a generation of avoiders and hoarders. We want to hold onto to our loved ones as long as possible…over there. Those years do not have to be wrought with anguish, for the loving or loved. Take the decades before diseases of aging rob you of your loved ones to learn how special their lives have been. That way, the “hello” has much more impact than the “goodbye”.