This post first appeared on Maria Shriver’s Women’s Alzheimer’s Movement website at this link: http://thewomensalzheimersmovement.org/dont-you-remember-daniel-potts/
“The battle of being mortal is the battle to maintain the integrity of one’s life—to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be.”
― Atul Gawande, Being Mortal: Medicine and What Matters in the End
“Dad, you’ve already asked about that. Don’t you remember?”
(To which might be added, “If I had, why would I be asking the question again?” Or perhaps, “I have a disease that causes me trouble with my short-term memory, don’t you remember? I’ll always be your father. Don’t you still love and value me, despite some changes that are happening due to Dementia?)
Though diligent to guard against it, I’m guilty of having said something like the quote, above, to my father and others. Such language should not be used when communicating with someone who has Alzheimer’s disease or another cause of Dementia, because it has the potential to make her or him feel “less than” by calling attention to losses. Our goal in a Dementia-friendly society (any society) should be the upbuilding of others through honoring those elements of personhood that remain, enabling their expression and integration within a safe, supportive, creative, compassionate community. This will help to preserve the life integrity of which Gawande speaks in the aforementioned quote.
Instead of inadvertently tagging others with their deficits through the ways in which we communicate, we should help them to craft and raise beautiful banners of selfhood to honor the dignity and worth no child of God can ever lose. Our language, both in speaking to someone with Dementia, and in discussing the topic in general, should always destigmatize rather than label. This creates culture change, helping to bring about a culture of compassion.
Denial, universally experienced by care partners and loved ones of people who have Dementia, often underlies the language we use. When I expect my father to remember something that just happened or was said recently, I fail to face the reality that his immediate recall has been affected by a disease. This would be equivalent to inviting someone whom I know to have severe congestive heart failure to join me on a ten-mile hike, then asking “why” when she declines. I might as well remind her and tell everyone else that she has lost her ability to function like a “normal” person because of her disability.
In my experience as a Neurologist, I’ve noted that most of us fail to see conditions that affect the brain’s cognitive function in the same light as other physical ailments. Perhaps it is harder for us to accept illnesses that affect the personalities and communication skills of those whom we love, than illnesses that primarily have physical effects.
Additionally, it is likely that many of us are undereducated on the symptoms and manifestations of Alzheimer’s disease and other causes of Dementia. Because Alzheimer’s causes early damage to the hippocampus, the brain’s “save button,” new information has a hard time finding its way into memory, thus making it unavailable for later retrieval. How many times have I blamed my laptop for losing data, having failed, myself, to click “save”?
With denial comes another element common to the psyches of care partners, one that also finds its way into the language that we use: holding persons with Dementia accountable to continue to fill roles and constructed identities we assign them in our minds. I am who I am, in part, because my father has been my father in relation to me, through all the many facets of that relationship. If my father, because of Dementia, no longer completely resembles the image my mind created to represent him, then I will either 1) deny his losses to leave that image intact, 2) acknowledge his losses and resent the unfairness of it all and the suffering this causes him and me, or 3) accept, grieve for and adapt to his losses while affirming his remaining abilities. The latter is the only response that validates and honors his personhood while infusing life into our relationship. It is also the only response that calls forth my best human qualities as a care partner, including forgiveness for any past traumas associated with the relationship. We are human. We may harbor some resentment, even anger over what is happening, but we must move on to acceptance, adaptation and affirmation.
“Care giving is either a judgment of who we are or a fruition of who we are meant to be.” – Dr. James Houston
If I remain self-centered and wrapped (trapped) in my own ego, it will be very difficult for me to find any success as a care partner. Denial, resentment, self-pity, bitterness, anger, isolation, and depression will ensue, and emotional reactivity and my own uncontrolled anxiety will be harmful to both my loved one with Dementia and me, adversely affecting our relationship. Our language, both verbal and nonverbal, will convey this negative tone.
Making the transition (through conscious choice) to acceptance, adaptation and affirmation can be difficult, in part, because losses experienced by those we love are somehow our own losses, as well. Coming close to mortality in another produces a kind of death within ourselves. This is never easy, but can be a catalyst for growth, if we remain intentional and compassionate in our mindset and approach. We can do very little about Dementia, but we can do a lot about our response to it, a response that can make meaning of the time we have been given.
Expressed poignantly by Simone Campbell, “Touching that which causes us to weep can liberate the transforming fire of hope within us.” Such hope can then light the path we are privileged (yes, privileged) to walk with our loved one, birthing the gratitude that can bring life enrichment from the experiences of each new day.
The language with which we communicate with those who have Dementia, both verbal and non-verbal, lays the framework for the entire care partnership. This includes periods of silence and simple togetherness, which may heal and connect better than words. The foundation, of course, is love. Things will seem to fall apart at times, but the framework will stand if held together with compassion.
And we must also speak to ourselves, as care partners, with this same compassionate voice, lest we become disconnected from who [we] were or who [we] want to be.”
“Don’t you remember?” – people with Dementia may be asking this of us.
“Sometimes my memory fails me, too. But there’s nowhere I’d rather be than right here, right now, with you.”