Be the memory keeper and you won’t lose your loved one twice
Two of the most common questions I hear from families and people who work with those experiencing dementia are: “How do I help someone with dementia remember their own memories?” and “How do I help them stop repeating the same stories?” Knowing how to deal with lost memory is important, because our memories enrich not only the present, but every relationship. And, each of us have a few select memories or stories that express who we see ourselves to be and what is most important to us.
Helping people stay in touch with their own favorite memories and stories is an essential part of being a care partner in dementia. If we don’t have companions who will do this for us, we can’t help but lose knowledge of who we are and once were. We lose ourselves and our loved ones lose us, too.
We are far more than just our memories, though. Daniel Kahneman wrote about our two psychological selves in his book Thinking, Fast and Slow. His book is named for our two sets of thinking skills, intuitive thinking and rational thinking, but he also explains our remembering selves and experiential selves.
When we are not experiencing dementia, we have both selves. Our memory skills allow us to visit the past and our experiential skills allow us to enjoy the present. Having both, we often find ourselves lost in nostalgia or reverie: thinking about something that happened before and enjoying it, or wishing it had turned out differently and replaying what we wish we had said or done. The drawback to having a remembering self is that when we are lost in our memories, we miss out on what we could be experiencing in the present—with the experiential self. And the present is where all the most enjoyable things in life exist: companionship, beauty, and rich emotions such as joy, empathy and love.
Dementia takes away only the remembering self
When we are experiencing dementia, however, we lose our memory skills and become unable to leave the present (we also lose our rational thinking skills, which give us access to the future). When someone loses their remembering self, they lose both the bad and the good: the unpleasant memories they might prefer to forget anyway, but also knowledge of who they were and are. I found with my clients that what they most needed to know was who loves them, who they love, and all the things they have done in their earlier lives that makes life worthwhile to them.
Dementia and “wanting to go home” is caused by the loss of the remembering self
Dementia takes away our ability to retain what we most need to know about the past. Much of what gives us a sense of self—that story of where we come from and who we now are—comes from our remembering selves. It is also our ability to recognize and sense the familiar. (Once our memory skills are gone, we can’t help but want to go home: we’ve become unable to recognize what is around us and feel that we are where we should be.)
Become the memory keeper and storyteller
When someone loses their memory skills, they need help from us, their companions, or they will become lost—to themselves and to their loved ones. That loss is not necessary: we can use our memory skills for them. We can listen to their memories and stories whenever they tell them and memorize what they are still able to share with us. If someone has memory skills, hearing them repeat things often will be boring or frustrating. But when someone has lost their memory skills, it is our chance to memorize what is important to them in their own words so we can become their memory keepers.
And once we know their memories, we can become their storytellers. Sit down beside someone who’s experiencing dementia and tell them who you are, who they are, and how you know each other. Then begin telling them their favorite stories. For each of my clients, their care partners would memorize their favorite stories, share them with their family members, and tell and retell them often. I have seen people who haven’t spoken in weeks slowly open their eyes, begin to listen, and then laugh and chuckle and beam with joy, and reach out to take my hands.
Bring joyful memories, not silent sorrow
It is difficult to watch someone you love lose skills. It’s much easier to care for someone who is gaining skills. However, never confuse the loss of skills with the loss of self. We do not lose the essence of ourselves to dementia, because our experiential self lives until we die (I think of the experiential self as the soul). We lose knowledge of the past; we lose the ability to plan or initiate or bring up a topic or ask a question. But we do not lose the ability to love and enjoy whatever our companions bring to us.
It is difficult to put aside grief and concern when you walk into the room. But if you can bring to your loved one their memories as stories, putting aside your hurt over what they can’t remember and your concern about their losses, you will find they are still there, living in the present. Be the person who lovingly retells the happy stories and good times from their earlier years—who tells them who they love, who loves them, and how good of a life they have lived.