“Why don’t you get on with your life?”That was the question raised to a friend whose wife is in a memory care facility.
For six years, he has visited her daily between 1:00 and 3:00 p.m. Since the disease has taken her language, he mostly sits silently beside her, gently holding her hand. She responds with an occasional smile or a momentary twinkle in her eyes.
The casual observer assumes that she no longer knows her husband, rendering his visits meaningless. As I often hear from medical staff, family members, and friends, “They aren’t there anymore. She/he is already gone.”
If they are already gone, why continue to invest time and energy in relating to them? Or as one daughter said about not visiting her mother, “She’s not the mother I’ve known. I want to remember her as she was.”
A pastor remarked, “They don’t recognize me when I visit or remember that I’ve been there. I have so many other things to do. They aren’t really there, so what purpose does a visit serve?”
Pat Robertson suggested in response to a caller on his television program that a husband can justifiably divorce his wife with dementia. His reasoning: “. . . I hate Alzheimer’s. It is one of the most awful things because here is a loved one—this is the woman or man that you have loved for 20, 30, 40 years. And suddenly that person is gone. They’re gone. They are gone.“
Since the person with Alzheimer’s is “gone,” it seems permissible that “you get on with your life!”
The advice may be well intended. Neurocognitive diseases do change people, stripping from them capacities to remember, communicate, and reason. Personality changes are real and often dramatic. Difficult behaviors emerge. Reciprocity vanishes or diminishes. Dependency escalates with ever-weighty demands on spouses and family.
Caregiving can be all consuming, with devastating physical and emotional consequences for the spouse. Relentless grieving and pervasive sadness take their toll. Therefore, there is some value in suggesting that “you get on with your life.”
The advice, however, is based on a devastating myth: Identity and worth lie in our capacity to think clearly, remember rightly, communicate plainly, and behave appropriately. It is the popular acceptance of Descartes’ dictum, “I think, therefore, I am.”
My friend responded succinctly and firmly to the suggestion that he get a life. He said simply, “This is my life!” He added that he enjoys spending time with his wife. Love is central to who he is. She may not always cognitively know him, but he knows who she has been and who she IS; and he loves her for all she has been AND for all she is! Love gives life, joy, connection to both!
Those of us who refuse to live by the myth know something very important: THEY ARE STILL THERE! We are more than our thoughts or capacities or behaviors. We are distinct, beloved children of God, whose worth and identity are held permanently by God!
Those who take the time and energy to be attentive, to get inside the world of loved ones, to listen to the feelings behind the incoherent language, to really BE PRESENT know the person is still there!
Sometimes we see it in a faint twinkle in the eyes, or a characteristic gesture, or a fleeting smile, or a slight squeeze of the hand. When it happens, there emerges a profound joy which may last only a moment. But the joy is real for both, and the residual effects endure longer than can be measured.
On the rare days when my friend does not arrive at the memory care facility at 1:00, his wife can be seen standing at the window looking out toward the parking lot. Mysteriously and inexplicably, she knows it’s time for her husband to come. She is STILL THERE! And he knows it!
Thank you so much. If it were my spouse, I would be there every day also. Love remains.
I was just introduced to your blog today by Susan Mobley, MPUMC. At 65 my wife and I have been members there since 1978. We have been in The Alzheimer’s family since my wife’s MCI diagnosis in 2010. Now in stage 7, “She is still there”. Occasional seizures bring her an awakening for a few days with language and understanding. Even after this subsides, she still understands a lot of what I say to her. Yes, me being her 24/7 caregiver here AT HOME for 3 years is stressful and some days are endless, however I thank that extra love and care is benefitting us both. She is still my bride after 45 years and I know that I am doing God’s Will.
Thank you for your witness to the enduring power of love! May you be sustained and blessed as you care for your beloved wife. I consider care-giving one of God’s highest callings!
Ken your writings are beautiful! God Bless.
Thank you, Louise! I hope you are doing well.
In sickness and in health–I cannot imagine abandoning someone you have loved so many years. It is not exactly the same, but I remember our family going to visit my daddy in the hospital on Christmas Day. He had not known us for several years. I walked into the room, and my daddy said, “Why Ellen, I am so glad you came to see me!” Had I thought he “was not there” I would have missed this moment that I shall never forget.
Thank you, Ellen, for sharing your experience with your father.