“To love a person is to learn the song in their heart and sing it to them when they have forgotten.”
~ Arne Garborga
My son recently posted on social media a line from a song – “I left you there … I left me there, too”.
This resonated with me on a very deep level after the last year. My Mother-in-Law was diagnosed with early dementia, and it became evident she was not safe to live alone.
The role of becoming a caretaker for family members is not one most of us are prepared to take on. It is more difficult for us to become the safety net for those who have traditionally taken care of us, than to give care to a stranger. The same is true of accepting needed care – if I don’t know you, don’t have a history with you, it is easier to accept help.
In the early stages of the disease, those diagnosed with dementia have a memory that flickers – some days they remember most if not everything, other days it is difficult to grab onto the memory, the thought that is … just right there, but so elusive. Loved ones are often confused by this on again off again experience. It makes you second guess the diagnosis, the care path you’ve chosen for your loved one, and extends the highs of hope then crushing pain of reality. Repeatedly. Those with dementia seem to know how we are feeling; even if they don’t understand why, it is easy for them to feel our unexpressed disappointment. They take it personally; not understanding it’s the disease, not the person, that is frustrating us.
This leads me full circle back to how I started. Our loved ones with dementia leave us there in their memory, not in the present. But they also leave themselves there in their memories. As the disease progresses, those memories, those “leavings”, become further and further from where we are today.
How do we keep the fragile thread of connection to this person who means so much? It requires creating a new relationship – not just once, but probably over and over as the disease progresses. We need to honor not only who they were, but who they are and meet them where they need, not where we want.
Connect instead of correct – don’t take it personally if your loved one doesn’t remember you, your kids, or where you fit in with their lives. Introduce yourself with clues – "Hi Mom, I’m Cindy, your oldest daughter". Reminisce rather than ask if they remember a person, place or event – use I statements – "I remember the time we all went to the lake".
Focus on the things the person living with dementia can do instead of what they can’t. Celebrate rather than commiserate.
Do things with the person instead of for them. Monitor to make sure you are helping enough, but not leaving them feeling left out and unseen.
They may have left us in their memory loss, but they’ve also left part of themselves, too. Be kind, be loving, celebrate and enjoy the person in front of you.
~Ruth Kaminski August 2023