By Joan Wright, CDP, CADDCT
As one of six children, it was not unusual to be called every other family member’s name, including the dog’s, before my mother stumbled upon mine. This was a very normal occurrence in my childhood, and well before any thought of Alzheimer’s capturing my Mom. So decades later when in the throes of dementia, she’d have moments of calling me “Momma”, or introducing me as her sister (quite interesting since she was an only child), I wasn’t hurt but rather amused at who I might be at that moment. But when she asked me who the old man in the backyard was as we watched my father, her husband of nearly 50 years at the time, mow the lawn, I felt as if I had been punched in the gut. I was speechless and shocked and heartbroken. But it was the confusion and near fear in her eyes at that moment, that brought tears to mine.
We can educate and prepare ourselves for the losses and stages of Alzheimer’s and other dementias as they slowly steal away the cognitive parts of our loved ones. But nothing can brace ourselves for that moment when our loved ones not only don’t recognize the people who love them the most, but perhaps also mistrust or fear them.
Dementia takes our loved ones on a roller coaster ride of cognitive disconnects while memories and emotions and fragments of their lives often refashion themselves into confused distortions. It’s unsettling and often scary for them. When those rides go backwards in time as they often do, our loved ones may stop within the memory of a powerful moment from their life, and dwell in either the sadness or joy it brought. We pray for the joy but when it’s not, such time travel can cause disruptive behaviors if we can’t recognize where they might be along their “history” and their emotions connected to it.
When that time travel backwards returns them to periods before they were married, or had children, or knew any of the people presently in their lives, we need to be compassionately creative in our approach and response to them. This is an incredibly challenging task if we are the spouse not recognized. It is difficult to not feel the emotional hurt when a husband or wife forgets our years of marriage, appears confused by our presence, and asks us to leave our own home or bring them back to their mother’s house.
When this occurs, we must accept that dementia blinds them from seeing and understanding who we are. For at these moments, our loved ones with dementia believe they are decades younger. If they acknowledge being married, surely their spouses are as young as they believe themselves to be, not the gray and white haired husbands and wives standing before them. How could they be married to someone that old? How could they have adult children who are older than the ages they believe themselves to be in that moment?
This is a cruel consequence of dementia’s launch of backwards time travel. But if we can step back from the hurt of these moments, take a breath and realize that this is the disease talking – not our loved one’s heart, we can adjust our hearts to shift the pain and again, step forward to help our loved one feel safe. We must reframe the moment to what it is – our loved one’s unfortunate journey where dementia is driving the bus. They are unwitting passengers and we must ensure to the best of our ability they feel safe.
And that is our focus – their safety, their comfort. When do we want our mother? When do we want to go home? When we are frightened. Imagine awaking from a dream believing you were years younger and still in slumber’s fog, trying to make sense of the people in front of you. It’s startling, but we are able to shake ourselves awake and come back to present time. They are not. They are locked in that fog, unable to recognize us or make sense of where they are. And so they go into “fight or flight” mode. They try to get away or demand we go away, and declare they need to go home; they want their mother.
We must respond to their emotions, not ours in these moments. We need to reassure them they are safe. We may have to use fiblets to convince them that “mother knows you’re here and safe and staying here tonight. She is happy you are and she’s safe too.” We use few details and vague timelines such as “for now” or “right now”. We may have to introduce ourselves as “a friend” of their spouse (us) “who asked us to stay tonight to make sure you’re okay.” Emphasizing safety and trying to alleviate their worry are our main objectives. And internally, always acknowledging that their confusion about who we are comes from the disease, not their heart.
Knowing our loved ones’ histories will help us guide them towards comfort in these moments. Talking about an old favorable memory may encourage them to relax and let down their guard. Never trying to bring them to the present moment, it’s our job to make the most of where they are, the best we can.
Years after my gut punch in my mother’s kitchen and my father now dead, a visit to my Mom gave me a magical image of their courtship. Believing I was a friend and she was not yet married, my mother told me of a wonderful evening she had just had with her boyfriend, Al (my Dad). Her eyes lit up with excitement and joy and I could feel the love she felt for him. I listened and asked questions as if it had just happened, as if I was her best friend, as if she was newly in love. We giggled and smiled and it was like no other experience I had ever had with my Mom. And while I couldn’t (nor needed to) confirm a single fact of the “evening’s events,” I knew it represented the intensity of my parents’ love for each other. It was a blessing of Alzheimer’s – an opportunity for her to relive a wonderful moment and for me to witness her joy in doing so.
Time travel backwards can throw us into emotional havoc. But every so often, it provides a window into our loved one’s joy and an opportunity to gather invaluable pieces of who they are. May everyone on this journey have such a blessing.