And Who Are You?
An essay written by one of our caregivers, with permission.
The late afternoon sun floats through thin blinds onto the fuzzy blue blanket that almost covers my husband Peter and me as we lie side by side on his narrow hospital bed. His 15-D black Velcro shoes stick out of the covering at the end of his six-foot, two-inch frame. I have more snuggle room since I am five-foot one.
Peter’s room in the memory care center is always toasty. To remind him of his early years as a believe-it-or-not cowboy in Texas and Colorado, pictures and statues and curtains with horses surround us at every angle. I don’t like horses, but I rode with Peter for 45 of our 53 years of marriage until Sunny bucked me off. My doctor said she was surprised that I didn’t break something “at my age.”
From the hallway we hear another resident’s startlingly loud laughter as he pushes his friend, another resident, in a wheelchair. We hear a woman who lives on the same hallway with her habitual counting as she steps her feet to move her wheelchair forward. A gentleman’s rocking chair at the end of the hall creaks rhythmically. I don’t know what type of dementia these neighbors have. Peter has had Alzheimer’s for about ten years, not counting our time in denial.
Our nearly daily visits begin with cuddle time. After maybe ten minutes together on this fall day, Peter murmurs, “I like being close to you.” Then he pops up to sitting, turns to look down at me, and asks, “And who are you?” I laugh and tease him, “And how many other women come into your bed?” He doesn’t understand. His Alzheimer’s is in the advanced stages, according to his doctors.
Peter started asking me what my name was last January. That didn’t bother me much since he had already lost the meaning of many words. A few months later, though, he asked if I had seen his wife. That hurt. Deeply. Now he repeatedly wants to know who I am and when his wife is coming back. The questions form a continuous loop in spite of answers I offer.
One recent evening at dinner, Peter told me he would hug his wife if only she were here. I said that he could because I am his wife. He jumped up from his meal with a grin and wrapped his arms around me. A nearby observer advised me to tuck this memory in my heart and I have.
Peter’s questions make me question my own identity in this relationship. Being married over half a century is no small feat. In truth, our marriage has died twice and, thanks to prayer and gifted counselors, it has been resurrected to deeper love and respect twice. We had only eight years of truly self-giving mutual love the last time before Alzheimer’s crept into his brain and changed us.
If the husband I married no longer exists, does that make me a widow? He looks like the same man. His voice sounds the same. He still sings with a strong resonate bass voice. Yet everything that made his personality so big and sometimes challenging has died. Everything that set him apart from others has evaporated. I grieve the loss of our deep conversations, even our disagreements. I mourn the absence of the complex relationship we shared. Still, I cannot be a widow, not yet.
Then I must be single. I live alone for the first time. Six weeks after graduating from Queens College, we were married and I moved into the parsonage Peter had prepared in Laurinburg, NC where he served as a Lutheran pastor. When Alzheimer’s began to cripple us both 48 years later, we sold our dream ranch home of 28 years near Southpark and downsized to an apartment in a continuing care retirement community. I downsized there again after Peter moved into the memory center. Although I am a severe introvert and Peter is intensely independent, the first six months of separation were nearly lethal for both of us.
No, I am neither a widow nor single. I am still married and I want to be. I look forward to melting into Peter’s warmth, even when he has no clue who I am. I look forward to holding his strong hand as we walk to supper at the casual market grill where imperfect manners are accepted. I look forward to strolling around winding trails under green arches as birds compose songs just for us. In truth, I even look forward to figuring out how to answer his questions about who I am and who he is and where we are.
Perhaps our marriage has died a third time during the onslaught of Alzheimer’s. If so, it surely has been resurrected again. Tender moments that remain are precious. I know in my core that, whether Peter realizes it or not, our souls still connect.
“Writing Your Spiritual Autobiography Journey” Retreat
Wildacres, Little Switzerland, NC
September 28, 2019
Beautifully tender, honest and inspiring. Thank you for your vulnerability.
Beautiful Sue, beautiful… As is your witness if Christ and the Church in your precious marriage. Thanks be to God, faithful one.
I know somewhat of what you’re going through, Sue, since my mother came to Southminster from California in 2004 having been diagnosed with Alzheimer’s. She didn’t know me or my daughter while she was here for seven years. It’s tough, I know.
Thank you for sharing. I feel your pain—it is a lonely journey. I like you miss our conversations about meaningful things.
This is so beautiful yet heartbreaking. I cared for my mother in her final years and it was so disheartening when she would be looking outside. I would ask what she was looking at and she’d reply, “I’m looking for Anita” Susie you are in my heart and prayers. Much Love to you both. ❤️
I love your honesty. No reason for you not to be. I missed you this past Christmas. Still have your gift. Would love to see you whenever you can get together. May God bless you and Peter as you move through the rest of this journey. Nancy♥️
My heart just breaks for you. Please know you both are in my daily prayers. Sometimes we just don’t understand the “why”. Peter was such an awesome pastor. Much love to you.
Oh Sue,
That was so very lovely in its poignancy.
You are both in my heart, sister.
Let me know if you would like me to come and play for you again,
Love,
Margaret
Sue, what a lovely and strong woman you are! You’re an amazing person and are in my prayers so many times!
I don’t know how you found the generosity for sharing this piece, but I know it must help others who are being asked similar questions by their spouse or parent. I’m
very happy that you still have precious moments with Peter.
You’ve always been an inspiration to me, with your beautiful smile and the graceful way you’ve always lived your life. It’s evident to me you are living your life being led by, and filled with, the Holy Spirit. Even during these heartbreaking times you continue to be an inspiration to me and many others, I am sure! All the best to you, Sue Setzer!!!
GLYASDI, Carolyn
❤️