“Who are you?” No, that is not the person with dementia asking. If your loved one moves to a Skilled Nursing Facility (SNF) or Care Home, their past may be virtually a blank slate. Perhaps this question comes from a compassionate CNA or other health care worker, or one of the many other persons who are now engaging in your loved one’s life.
They may know the clinical diagnoses along with personal information such as name, age medical conditions, and even emergency contact numbers, but not who your loved one was prior to dementia. Not what they enjoyed, their sense of humor, what they were passionate about or even disliked. What were their favorite songs, TV shows, and movies? Where did they live throughout their lifetime and what did they do for a living?
Don’t wait, its never too early to prepare
Often, by the time someone is moved to a Care Home or SNF, they have reached the point where they are not able to adequately care for themselves, make quality decisions, or carry on comprehensive conversations.
After my Mama had surgery for a broken hip, she moved into a skilled nursing facility. We thought it would be a temporary arrangement while she recovered from her operation. As it turned out, her surgery went well, and her hip repair healed up nicely. The unexpected part was that her brain could no longer give her feet ‘walking commands’. No matter how strong her body was, if she could not think, ‘Move left foot, then right foot’, she couldn’t walk. Her temporary stay became permanent.
Share who your loved one was prior to dementia
Our family was fortunate. We lived in a small town, and it was easy to pop into her care home on a regular basis. My sister, brother, husband, and I became frequent visitors. We got to know the folks who worked there. We made it a point to share important details of Mama’s life with those who cared for her.
Our family wanted them to know she was more than the person in the bed by the window. Mama loved her family and had a keen sense of humor. She worked as a laboratory scientist – and was highly intelligent. We brought cards and letters from friends and family to display on her nightstand and the bulletin board on the wall behind her bed.
One of the most fascinating things about Mama was her love for musicals – especially music written by Rodgers and Hammerstein. ‘The Sound of Music‘ was her favorite. She loved to sing! Mama could still sing long after her conversational skills diminished, and her voice faded. As I wrote in a previous post, “The Magic of Music in Memories”, we sang all the time – her favorite was ‘My Wild, Irish Rose’. Over time, it became more and more difficult for her to rouse enough to sing, it took persistence and patience – I said over and over, “Sing with me, Mama, sing with me.”, then I would begin, “My wild, Irish rose, the sweetest flower that grows…”. Eventually, she would join in. Her voice would become stronger as we repeated the verse over and over.
Become your loved one’s advocate
As time went on, our role in acquainting the new employees with Mama was never over as there was natural turnover at the care home. We loved being Mama’s advocate; folks were so kind. It became well known that if there was any musical event, such as a band or singing group in the activity room, Mama attended. Sometimes, one of the caregivers would tell me that when they had a few extra minutes, they would sit by Mama’s bed and sing with her. Mama was also a lifelong Episcopalian. When I asked her priest to bring communion to the care home, she readily agreed.
We were able to advocate for Mama and be her ambassadors because we knew her – we knew her stories and her songs. I understand that it is not always possible to learn these things once dementia begins stealing memories and abilities. Dementia can make it more difficult to discover someone’s preferences, but not impossible. Play or sing the songs that were popular from their ‘formative’ years and see if one sparks a memory. Even if your loved one cannot sing, if you find a song that gets a positive reaction, you can do the singing part. Christmas songs and Happy Birthday are likely known and loved.
Record your own stories and memories
Finally, do not become the unknown person in the bed by the window. Share your songs and learn one another’s stories. Write down childhood memories, favorite foods, places, and songs.
Several years ago, my oldest son gave me a book called, “Mom, I Want to Hear Your Story”. It was a very comprehensive fill-in-the-blank and answer-questions notebook. The process made me do some thinking and pondering. I was glad he wanted to know more about me, so I happily filled it out and sent it back to him.
Recently, my daughter gave me something that goes a step further. It is a journal called, “Like Mother, Like Daughter”. It was designed for us to learn more about each other. She also gave me a beautiful set of colorful pens to do my writing. The book came with some of the daughter portions filled in. I truly enjoyed reading what she wrote. It is now my turn to go through and fill in some of the sections. Then I will pass it back to her. The idea is not simply to fill out our part, but for us to thoughtfully answer, explain, and share in a back-and-forth rhythm. This will be a lovely process that will expand our understanding of one another. I look forward to the journey.
Share your stories and memories with others
Journaling is something everyone can do for their future selves. Don’t put it off. If you can’t afford a book or journal, at least get a notebook, and begin recording your stories. Write down your earliest memories. Share your favorites and dislikes of everything you can think of. Entries don’t have to be in a certain order – the important thing is to write them down. Keep your notebook with your personal belongings, so when memories occur, you can add to it over time. This book will become a treasure for future generations.
Should you ever end up in an unimaginable situation where you were unable to speak for yourself, imagine the delight of family members, caretakers, or friends who discover your memoir holding the answer to that question, “Who are you?”.
Has your world been touched by dementia?
My book, “FinishingWell: Finding the Joy in Dementia”, is a collection of stories and tips about doing life with my Mama. May it encourage and inspire you to find joy on your own, unique journey.
Documenting memories and identity is so important! I’m really glad that you made Grammy‘s life finish well. I hope that folks, myself included, take this article to heart. I’ll be sure to share it.
Thank you Bambi! Recognizing the value of our loved-ones benefits everyone.