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 TheWest 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”.
This week has been a doozy. While dancing at a wedding, I broke my foot. Nothing special there; apparently, it is called a “dancer’s fracture.” (Side lesson to be learned: keep your heels on because flip flops give no protection against missteps.) My crew took care of me with ice and Advil, and we all finished the night still smiling and laughing. I’m now in a fashionable boot hobbling around for the next 4-6 weeks.
Normally, my paramedic husband would have swooped in and triaged my injury. But, he was on Daddy Duty at home. We were supposed to sneak away for our first weekend, child free in four years. Unfortunately, we were unable to import our go-to babysitter, my mother. She was sidelined due to a family history of high blood pressure that decided that this very weekend was the one that no medication or exercise could decrease to an acceptable level for airline travel.
So, I’m hobble-chasing my toddler in between check-up calls to my mother. Hold your applause and sighs, my beloved readers. This snapshot of caring for a child AND a parent has become common place. Welcome to the Sandwich Generation!
I cannot take credit for the term, “sandwich generation.” A social worker named Dorothy Miller first used this moniker to describe women in their late 30’s and early 40’s who were taking care of aging parents at the same time they were raising younger children. A poll conducted by the Pew Research Center in 2013 discovered that 15% of people from ages 40-59 provide some financial support to an aging parent and a grown child. My concern, and newest focus for my private family counseling, is for the 38% of those same men and women whose grown children and parents rely on them for emotional support. When gifted with the opportunity to provide intergenerational counseling, here are some of the key concepts I hope I leave behind:
The Earlier, The Better: Conversations about aging have a terrible reputation for being morose and pessimistic. That is because we all wait too late to talk about any life change until we are in reactionary mode. Flip the switch! Be proactive by talking to aging parents before they are elderly. Don’t waste time talking about living wills or advanced directives, either. Spend every conversation laughing and smiling about the quality of life your parents have developed and take mental notes (if not physical notes) about how to preserve that quality of life. There is a fantastic card game created to start the discussion by the non-profit organization, Aging With Dignity, perfect for a family game night. I played it with my husband (similar to a game of Go Fish) and learned his top priority for aging is to be kept clean. It’s more important to him than trusting doctors or being with friends. He wants to be clean so he can always be touched. Lesson learned: 50 years (I hope) before this becomes a medical directive, I spend more time holding his hand, rubbing his arm…and I’m teaching our son that newfound family value by modeling what makes Daddy feel loved. How’s that for intergenerational counseling?
The Answer to Every “Why” Is “Once Upon a Time”: There are so many questions that crop up when one generation sits with another. Often, it is the younger parent asking why their childhood turned out a certain way in the hopes of not repeating the outcome for their child. (Give it a minute — intergenerational counseling is only complicated when I try to explain it in the abstract.) These questions get more uncomfortable
when the plans for an aging parent are being discussed. Why do you want to stay at home? Why don’t you want to give up your driver’s license? The answer is in a memory from your parent’s childhood or experience about how it feels when they saw others growing old. Get used to listening to “why” instead of judging it; within the silence of listening comes the calm of understanding.
We Are Family…Still!: If you aren’t singing the Sister Sledge song now, you should be. And, pay attention to the lyrics. The family dynamics that existed when you were growing up, my brother is the favorite, Mom bakes to avoid conflict, Dad defers his opinions to Mom, etc., will return with renewed fervor when Mom and Dad need more help. It doesn’t matter which child lives closest or knows more about the family medical history. The way your family of origin was set up will dictate the dynamics of how caring for aging parents play out now.
Spark Note Summary
Intergenerational counseling is more than legal rights and medical decisions for your parent and more than detailed educational planning for your child. Talking about the quality of life you want as an aging adult sets up the values that will become the legacy for your child to inherit. Don’t BE a peanut butter and jelly sandwich…MAKE one for yourself…and your mom and teach your son to make one for you….and your husband…
My son turned four years old on Sunday. That was also Mother’s Day. Anyone that pointed out that coincidence (which will happen roughly every seven years) heard me gush that without his birthday, I wouldn’t be able to celebrate Mother’s Day. Sounds sweet, doesn’t it?
Secretly, though, I was a little cranky about sharing my day. It has nothing to do with how much I adore my son. It has everything to do with losing the opportunity to be seen and celebrated. Like so many moms, motherhood put me one step further away from who I am as an individual void of relational terms. I used to be Amy. She was silly and smart, irreverent and intense, selfish and selfless. Every year, it seems like I add more titles, mother, supervisor, blogger, that load me up on external expectations and make it harder to see the individual behind those roles.
Part of my job is providing workshops for any and all individuals who devote their lives to others, firefighters, volunteers, moms… At the end of my Help for the Helpers workshop, I provide an acronym that helps keep people reconnect with the individual in the mirror. These are everyday tricks to lower stress based on what biologically happens in your brain and to your body.
Breathe in oxygen: When you are experiencing stress, your brain channels its activity to stay alert and keep you alive. The fight, flight and freeze responses stay active until the levels of adrenaline and cortisol let the body know you are safe. The problem is there is a lack of oxygen going to the prefrontal cortex, the part of the brain that you use to set priorities and regulate emotions. By surrounding yourself in an oxygen rich environment, you can force oxygen into the prefrontal cortex and help yourself return to a more rational, measured state of problem solving effectiveness.
Celebrate micro wins in a macro way: Finishing the laundry. Getting your child to complete homework without a fight. Getting praise for a project completed at work. These events are all worthy of a celebration. By recognizing that you are taking successful baby steps towards a larger goal, a clean house, an independent child, a successful business person, you can sustain yourself for the long haul.
Accept a compliment: You are unique, and the things you are able to accomplish are also unique. Plenty of people are parents or hold the same job title as you do. But, only you have achieved success in those arenas. Along with the micro win, you need the recognition from someone outside of the mirror to tell you that you did well. Our society is trained to connect accomplishment with pubic validation. We give our kids participation ribbons and employees premier parking to publicize their worth. There is nothing wrong with a barista telling you the time you spent before ordering your chai was worthwhile. When you dismiss your success, you distance yourself from the ability to celebrate the bigger win.
Let one day be all about you: Women are forever pushing themselves down the priority list. We sacrifice a manicure for a kid’s toy. We give up an hour of peace and quiet to let our husband have time out with his friends. For one day, treat yourself like you treat the ones you love. Commit with your whole heart and calendar a measurable chunk of time to appreciate and celebrate the individual you are by giving the cook, cleaning lady, scheduler, shopper, etc. a day off!
Music, music, music! – a no brainer: Research conducted with Alzheimer’s and dementia patients, and recorded in the documentary Alive Inside, has concluded that music accesses a part of the brain that connects individuals to parts of themselves and their brains that were once thought lost to disease. As pregnant mothers, we played Brahms and Mozart through headphones on our bellies because we understood the power of music on a developing brain. That brain functions much the same way at the other end of the life span. Grab your iPhone and give the family some headphones, or grab some headphones and ignore the family altogether, and blast the music from your childhood. Choose music that connects to when you had the least amount of titles, pre-mom and pre-wife and pre-bad ass businesswoman.
Spark Note Summary
The analogy about self-care that likens it to putting the oxygen mask on yourself before others in the event of a plane crash is problematic. It implies you only need to take care of yourself in a crisis. If you can take care of yourself a little every day, the chance that an event will feel like a crisis is…what? The same chance as being in plane crash?