On Loving Someone with Alzheimer's
Editor's Note: Our friend Franne Golde lost her beloved Paul shortly before the new year. We wanted to share this beautiful tribute she wrote in his honor.
My beautiful, brave, sweet, kind husband, Paulie Paul Fox, passed away peacefully yesterday. As many of you know he has lived with Early Onset Alzheimer’s for a little over a decade. He never gave up hope, never complained. His mission was always to help others and find a cure. He walked the halls of congress; he went to the state capital, he volunteered at the Alzheimer’s Association, and he adopted Clark Terry’s motto, “Keep On Keepin’ On” and lived it to the fullest.
His unconditional love, acceptance and patience were extraordinary. He spread joy wherever he went and as his disease progressed, he became more vulnerable and never held back his feelings and in turn was able to give this tremendous gift to help others get in touch with their own.
I fell madly in love with Paul in August of 1983 and have never stopped.
It has been an absolute honor and privilege to love and care for him, a man so humble, compassionate, and dignified. Everyone who has helped him along the way always pointed out how gracious and kind he was. As much language as he lost, he never forgot to say thank you and was so appreciative.
Alzheimer’s is a horrible disease and eventually robs you of everything.
He made the absolute best of it, but this last year was a tough one, as he declined rapidly. I couldn’t have cared for him without the help of several wonderful caregivers and of course his main caregiver, Cecile Corpuz, who was like a sister to him.
I want to thank all our friends who have been on this journey with us and his beloved Nine Treasures Yoga community.
Paul was my everything and I will miss him more than I could ever express. He taught me the true meaning of unconditional love, tolerance, and vulnerability. What a gift to have been given and what a wonderful life we had. I love you so and you will live in my heart forever my darling Paulie. I’m so grateful I got to share life with you.
I think our son Syd summed it up best:
“Dad will always be loved no matter where he goes.”
May 22, 1954 – December 25, 2022
“Does he still recognize you?”
That’s the number one question I get asked. By everybody. Yes, Paul still recognizes me and our son Syd. Well, most of the time. I’m not sure if he knows what a family, wife, or child are, but I know that somewhere deep down, he knows our souls, our voices, our touch, our hearts, and he always smiles through tears at the sight of either of us.
I sometimes imagine my dad coming home from World War II. No one has heard from him in months, and they imagine the worst. Suddenly, there he is, walking through the front door and his family—relieved, shocked, elated—runs to hug and kiss him with tears, smiles, and joy.
This past Saturday was Paul’s and my 34th wedding anniversary, and I went to visit him. I walked into the activity room at the memory care facility, the one that—after many months of searching and researching—I believe is the right place for him. The residents, along with the activity director, are in the middle of tossing a red balloon through the air from one person to another. Some people are unable to connect to what’s going on and sit, aimless and distant. Paul reaches to tap the balloon, something he would have never done in his other life.
A few minutes go by, and suddenly he notices me. I smile and our eyes lock. His jaw drops as if he’s in shock, and tears stream down his face. His chin quivers and then his mouth turns into a huge childlike smile, ear to ear. He is overjoyed. I open my arms and walk towards him as fast as I can without disturbing the others. I fall into his arms. I’m home, with my husband, my life, my love, my family, my past, being bathed in blankets of pure love, knowing I’m wanted, important, needed, safe, perfect, protected, and loved unconditionally.
I want desperately to hold on to this moment, but I feel it slipping. Wait, please, not yet. I swallow hard as he slips through my arms. I look into his eyes, tears well, he’s slipping, slipping through my hands, my fingertips, and just like that, he’s gone.
Why am I always expecting, hoping for more? I pull it together.
“I brought you something yummy. Come.”
I take his hand and walk him outside to the terrace where there’s a table and chairs and only us. I help him sit. He has a blank stare until I open a brown bag and pull out a big piece of carrot cake with cream cheese frosting and walnuts. Our favorite.
“It’s our anniversary today,” I say, but only I know it. I open the clear box and he immediately goes to grab the entire piece of cake with an outstretched hand.
“No, no, no. Look, Paulie.”
I take a fork and bring it to my mouth while he watches, and I hand it to him. He takes the fork and digs in and so do I. Four bites in and he puts the fork down and grabs a piece with his fingers. Fuck it. I join him, and we are eating cake like two toddlers. I pull an ice-cold bottle of milk out of the brown bag, pop the top and hand it to him. He takes a big chug.
“Good!” he says shaking his head yes, and he’s back in the moment, for a moment.
He finishes his cake and the rest of the milk. I grab some napkins and clean my hands, then his.
“Look, it’s an anniversary card. It’s our anniversary. The day we got married. Do you like it?”
He smiles, but it’s like the smile of a child. Can he read anymore? Or does he like the picture of the big ladybug? He likes when I bring him greeting cards. The good news is he’s saved all the cards Syd and I ever gave him. There are enough to last a lifetime and they are always new to him.
“Let’s go home,” I say. Home being his room. I want him to feel safe here, in his new home. He knows the word home and says he wants to go home often. I still feel guilty and sad when he says it, like a punch in my gut. I’ve read that it refers to the sense of home rather than home itself. Is that supposed to make me feel better?
Home represents so much. Comfort, security, a place we—he—felt relaxed and happy. And safe. My heart breaks that he’ll never go to our home again.
We walk the long hallway to his room and sit on the loveseat together.
“Look, I brought some pictures. This is you, me, and Syd. And this is you and? Who’s this?” It’s a wedding picture and he doesn’t recognize me. “Franne, it’s me, Franne.”
“Franne,” he says. Does he know or is he mimicking me?
“Here you are in the studio, producing a record.” He nods his head. He knows it’s him.
The radio is playing “What A Fool Believes“by The Doobie Brothers.
"No wise man has the power to reason away what seems to be," Michael sings.
Paul looks at me knowingly. Music is in his DNA and always has been. He plays drums on his leg and then plays piano in the air. I sing along and we’re together inside the music.
“Did you produce that one?”
“Yes,” he says. I love that he thinks he’s produced every song he hears.
He’s completely in the moment. He’s forgotten what happened seconds ago and has no idea what a future is. I guess that’s the part of this awful disease that’s a blessing. I want the good moments to last and a future, with my husband past.
He’s lost most of his language, but still remembers most of the lyrics to all the songs he loves, as well as guitar solos, bass lines, and drum parts, and if there are strings, he conducts. He often does an air fade as a song is ending.
I know he’s declined, but his essence is still in there and I want to feel every drop, as long as I can.
He’s getting tired. I take his shoes off and we lay on his bed, him on his back propped up by two fluffy pillows and me on my side, as we’ve done a million times. His arm instinctively goes around me and I snuggle under his arm and into his chest and wrap my leg on top of his. More gibberish. I wish I knew what he was trying to say.
“Shh,” I whisper in a very slow, calming tone. “Shh.”
I take off his glasses and put them aside. His eyes close. I close mine. It’s quiet, so quiet, except for the faint sound of “Africa” by Toto coming from the Sirius radio I bought him, his tranquilizer.
I hear his heart beating in my ear, my hand on his chest, and now everything seems so normal, so safe—something only attained by Ativan these days. I want to stay here forever, take my last breath, and end the pain. Tears well in my eyes again. I have to live. I’ve been chosen—for our son, for Paul, and for whatever else I’m meant to do here.