Memories are a funny thing. Most of the time, when we think about memories, we chuckle or shed a tear, thinking about the past. We remember our childhood home, an old teacher or two, a grandparent who passed away, or that vacation that left lasting impressions.
Yet, memories are more than just nostalgia. We rely on our memories in our every day. And nothing makes this more clear than when you have started to lose your memory or cared for somebody who has.
One of the tell-tale signs of memory loss is repetitive questions. A person may ask, “What’s for dinner?” Then, a short time later, “What’s for dinner?” Most of us remember that we eat dinner every night (thanks to routine). But, when memory is impaired, a feeling of panic or need for more clarity can take over, needing to find out this information.
When my daughter first lost her short-term memory, she asked me what was for dinner over and over, as if on a loop. At first, I thought she was trying to be funny. Then it occurred to me that she was asking with a lilt of annoyance in her voice because I wasn’t answering her question (and even laughing at her “jokes”). She truly did not remember that I answered her the first time or that she just asked me that question.
As a caregiver, answering the same question, multiple times in a short period of time, with a calm voice, is a skill that comes with time. And not answering calmly, all the time, is human. I may have fallen in the “human” camp more than once throughout the years of caring for my daughter. Afterall, how many times can a person answer the same question in a span of an hour without throwing their hands up in the air and responding with an exasperated voice? But I also apologized and let my daughter know that I would try to do better. And I worked on that skill – because it is a skill – time and time again. Patience truly is a virtue.
When my daughter’s memory was declining, we also noticed that she was flitting from one activity to another, no longer content to read a book or watch a TV show. We realized you need to remember what happens in the beginning of the story for the book to make sense in the middle or at the end. And the same with TV shows – have you ever started watching a TV show 10 minutes before it ended and tried to figure out what had happened in the beginning? It’s not enjoyable. We rely on our memories for the stories in books, TV shows, and movies to make sense.
So we found short stories she could follow. She watched movies and TV shows that she had seen before, over and over again. She could follow them. She knew who the characters were and could keep them straight. This was much more enjoyable than trying to follow a movie that you only remember minutes of at a time.
Along with the seemingly short attention span, came disorientation. When my daughter went back to school after her memory was impaired, she no longer knew how to get to the restroom or the nurse’s office of the school she had been at for years. Scarier, she couldn’t remember her new teacher’s name in order to ask for help to get back to the classroom.
Most of us can relate to that feeling of being lost (with my sense of direction I certainly can). Shortly after I moved away from my hometown, I flew back for a visit and borrowed my parent’s car to drive to a friend’s house a few towns away. Close to midnight, on my way home, I missed my exist. I panicked and got off the next one which only got me more disoriented (this was before cell phones with GPS). I ended up pulling over in this city that I was not familiar with and called my dad from a payphone to ask for help. But I couldn’t even tell my father where I was in order for him to give me directions! Tears, panic and adrenaline were rushing through my system. Finally, a police officer stopped and was able to direct me home.
Imagine this happening almost daily when someone’s memory is failing them. Even if a person gets lost going down a safe hallway to the restroom, feelings of panic and fear can arise. My daughter was soon assigned an aide at school who would escort her anywhere she went. Of course, we never let her go anywhere alone, either, if we left the house.
Over time we realized the biggest thing we could do to minimize the impact of my daughter’s memory impairment was to stick to a routine. She could rely on routine, rather than memory, to know what comes next in her day. When she was at home, with all the furniture in the same spot, with the blanket where it is supposed to be on the back of the couch, with the TV remote on the end table, with the drinking glasses in the same cabinet, my daughter could be comfortable and self-reliant. She could turn on the TV, put a blanket on her lap if she was chilly, and get herself a glass of water if she was thirsty. Such tiny things to most of us, but huge to someone with an impairment. It was a bit of independence she could hold onto.
If there’s a time in your life when you are a caregiver to someone with a memory impairment, work on that patience. And try to empathize with that person. It’s anxiety-producing to not know what comes next in your day. It’s scary to not know how to get to the restroom. And, it’s terrifying to not know all the information needed in order to ask for help. Try to stick to a routine and understand when the routine is disrupted (even for a fun occasion like a vacation), that person may experience more anxiety than usual. Keep your patience in check, comfort the person, and make some lasting memories – even if just for yourself.