Alzheimer's: Losing my dad
Me and my dad, in his final hours Two months ago, my dad died. The experience of losing him was slow and gradual, because he had Alzheimer's Disease. It was also quick, because the difference between near-death and actual death turns out to be pretty sudden and profound. But above all, my dad's death felt magical to me, because loving my dad was always a magical experience, from the time I was tiny and he was creating birthday magic shows, Halloween haunted houses, treasure hunts to the town dump and movies starring us kids, until the very late stages of his life with this challenging disease when he was asking me deep and caring questions about my view of the world. His death felt magical because it ended with singing. My mom, sister, brother and I all held hands around his bedside and sang "Dona Nobes Pacem" ("Bring Us Peace") - a favorite round in my family - in his final hours. What follows is one song about my dad and mom, in honor of National Alzheimer's Disease Awareness Month, and two others to round out the story of my dad and my family's journey with Alzheimer's.
WHAT GOES AWAY?
A whole lot goes away with the ravages of Alzheimer's. You have no idea how many things are tied to memory until you watch memories become slowly loosened and unmoored. We watched my dad forget little things, then bigger things, then entire decades at a time. It felt sometimes like his brain had become like Swiss cheese - one minute he would be on solid ground and remember that we had lived in New Jersey, say, and other times all ten years of that experience had evaporated - only to return mysteriously (sometimes) on a different day. No one saw and experienced the losses as much as my mom. My parents - college sweethearts - were almost never apart, so when these changes happened day by day, my mom felt the blow on a deep, visceral level.
Last year, I offered to co-create a song with my mom on the topic of her choosing. She chose for us to make a song for the many new friends she had found through her Alzheimer's support group. She saw this song as a chance to give voice to what it feels like to deal with such profound losses, day after day, and to keep seeking and savoring the spark and the connection, all the way along.
Last year, I offered to co-create a song with my mom on the topic of her choosing. She chose for us to make a song for the many new friends she had found through her Alzheimer's support group. She saw this song as a chance to give voice to what it feels like to deal with such profound losses, day after day, and to keep seeking and savoring the spark and the connection, all the way along.
I created the song "Out of the Blue" based on a short piece of the same name that my mom (author of the book "All My Mamas") had just written. We followed it up with an in-depth song interview together, and off I went to compose. I presented her song to her one weekend in New York City when my family was gathered (sadly without my dad, who could no longer travel) to celebrate my mom's 80th birthday. It felt poignant to perform it with so much of my extended family gathered. But my dad's absence - that booming, joyful laugh and his eternal curious inquiry - loomed large. There were very few dry eyes in the room.
I have only shared this song with a few people so far, but I am so pleased to share it with you now in honor of National Alzheimer's Disease Awareness Month. It speaks to my desire to raise awareness in all of us about what a challenging experience this disease serves up, not only for the patient, but for the primary caregiver as well. My mom was an ASTONISHING bright light and steady presence for nearly a decade with my dad - driven, by love and devotion, to re-calibrate over and over again to help maximize my dad's sense of connection and independence. Inspired by that, my son Ben made this heroic "Superwoman" rendering of my mom, with my dad, on one of their last visits to our home.
OUT OF THE BLUE
Dedicated to Alzheimer's Caregivers Everywhere
These days are not like all the others
You’re over there and you’ve forgotten almost all of
What we had and what we said and what we did
And I’m left holding all the bits
And you’re adrift and I’m adrift
I try to make things feel familiar
I sit there by your side and tell you all the news
About the people you once knew and we make the
Sounds we used to make
Same cadence; same pace
And you don’t know what it means
We’re still talking but I’m watching you recede
And then of the blue I see some little glimpse of you
The essence of the man I’ve always known
And then out of the blue I feel my own heart wake up too
It seems I only know the deepest part of me
In fleeting moments like these when I can see
The rare sweet sweetness of you
These days are not like all the others
I know you’re fading as I’m watching and I’m waiting
Yes I’m standing on the shore that we once shared
Growing stronger, growing sadder, growing scared
But I keep speaking because we both
Remember the sounds of the language
Of our love
Forever out of the blue I will hold memories of you
The essence the man I’ve always known
I will carry the truth of the love I have for you
Wherever, wherever I go
I am filled with all I know
Of loving you
WHAT REMAINS?
It's very simple, I have found. What remains is love. When everything else is peeled back - all the memories, all the stories, all the situational elements - what gets uncovered are feelings pure and resilient and beautiful, flowing both ways. One powerful example of this was a couple of years ago, when I invited my dad, who was pretty deep into Alzheimer's by then, to write a song with me that he could gift to my mom for Christmas. He was well past the point of going out and buying a gift, but I knew there was so much in his heart left to say.
We did a song interview where I moved, conversationally, very gently, at his new "Alzheimer's speed," even if it sometimes involved repetitions or confusions. What emerged was quite incredible. I was amazed to discover how very much he remembered about my parents' early courtship years, in particular. "I loved her at first sight" he told me. I had never heard this before, and it became the opening line of the song. Too, he was keenly aware of how very much my mom was doing to take care of him, and wanted to be sure she knew it. I took careful notes and tried to catch his words exactly - to fit them into something unique to him, specifically for my mom. A few months later, when I returned with this simple recording of the song, my dad was no longer able to remember that we were working on a project together, that he had sat for this song interview, or what it was he might have said. But when I played the recording for him be burst into sobs. "This is me!" he said, with tears streaming down his cheeks. "I said these things! This is exactly what I want to say to your mother!"
We did a song interview where I moved, conversationally, very gently, at his new "Alzheimer's speed," even if it sometimes involved repetitions or confusions. What emerged was quite incredible. I was amazed to discover how very much he remembered about my parents' early courtship years, in particular. "I loved her at first sight" he told me. I had never heard this before, and it became the opening line of the song. Too, he was keenly aware of how very much my mom was doing to take care of him, and wanted to be sure she knew it. I took careful notes and tried to catch his words exactly - to fit them into something unique to him, specifically for my mom. A few months later, when I returned with this simple recording of the song, my dad was no longer able to remember that we were working on a project together, that he had sat for this song interview, or what it was he might have said. But when I played the recording for him be burst into sobs. "This is me!" he said, with tears streaming down his cheeks. "I said these things! This is exactly what I want to say to your mother!"
SHE WALKS IN BEAUTY
For Colleen at Christmas, 2013, with Love From Bill
I loved you at first sight
And I have loved you ever since
And I will love you for the rest of my life
I love the way you love me
To me, you are love
The way you make your place beside me for us
And you have always
Walked in Beauty
That is what I see
You have always
Walked in Beauty
And you are so beautiful to me
I love the way you look out for others
And the way they turn to you
I know what that feels like, through and through
And I love the way you give and give to me
Especially of late
And I will love you for the rest of my life
Every day
Every day
And you have always
Walked in Beauty
That is what I see
You have always
Walked in Beauty
And you are so beautiful to me
Can you see? What a blessing
Can you see? Such a blessing
Can you see
How beautiful you are to me...
On Christmas morning, we presented the song to my mom. Once again, it was new all over again for my dad. He was hearing it "for the first time." And yet, once again, he cried, and he knew... He could hear himself and the truth of his love in these words. Having this song has turned out to be a mainstay for my mom - a way to hear the specifics of his love and appreciation for her, in words that became no longer easy for him to put together on his own.
WHAT IS REGAINED?
The night my dad died, there was a gigantic full moon, we had all just been in the room with him, and his physical state clearly demonstrated that it was time. Even so, I was unprepared for the utter SLAM to my system that I felt about ten minutes after he was gone. The room began to spin and I felt like I was literally coming unhinged. I felt shaky and weak - completely unmoored - like every single cell in my body was desperately trying to reconcile the reality of what I had clearly seen coming for months and even years. His presence had suddenly, irrevocably, become an absence.
The night my dad died, there was a gigantic full moon, we had all just been in the room with him, and his physical state clearly demonstrated that it was time. Even so, I was unprepared for the utter SLAM to my system that I felt about ten minutes after he was gone. The room began to spin and I felt like I was literally coming unhinged. I felt shaky and weak - completely unmoored - like every single cell in my body was desperately trying to reconcile the reality of what I had clearly seen coming for months and even years. His presence had suddenly, irrevocably, become an absence.
I think that makes it just that much more amazing that so much of what happened in the next few days turned out to be an unexpected resurrection. Some longtime family friends, one of whom is the UU minister Carol Haag, just happened to be arriving for a visit the following day. Carol and her husband Carl sat with me, my mom, my brother and my sister and invited each of us, one after another, to talk about who my dad was. Slowly, piece by piece, I watched the man who had been so vibrant, such a creative and loving force, become resurrected in place of that frail and confused man I had had to say goodbye to a few short hours before. No longer bound by that final image of him, much more lively, hilarious, impressive images, memories, and feelings began to spring forth. The familiar stories rekindled a feeling of connection, and the new ones I had never heard began teaching me yet more about how someone can continue to unfold before you even after they are no longer on this earth.
My dad's memorial service was a standing-room only packed house! Each member of the family got up to speak or give a reading, including my two teenage sons, Ben and Sam. I performed "Out of the Blue" and then sang harmonies while my niece Mara did a beautiful job singing the lead vocals on "She Walks in Beauty." We rounded out the music by my getting to sing three-part harmonies with my brother, Al and my sister Amy on one of the Simon and Garfunkel songs dad was always playing in the house throughout our New Jersey childhood: "Leaves that are Green." I had never stood up and sung like that with my siblings before, and I was delighted at the way it so easily came together. On my own, I have performed original songs at many funerals and memorial services, and one of my great challenges has always been trying to remain composed and not feel too deeply the ache of the words and melody. But on this day, it was different. I was filled, from bottom to top, with great joy! Our singing did not make me sad at all! I felt my dad everywhere in the room, in all the faces of his friends who had traveled from afar or from right down the hall. I saw him in the pictures we had laid out. And I felt him delighting in all we had to say about him, and singing along. One of the attendees sent me this video of that moment. It's rough, and taken from afar, but I treasure it and am happy to share it here for those die-hard listeners who are still reading along!
We closed out the event with my incredibly inspirational and loving mom leading the entire room in singing "Dona Nobis Pacem" in a round. "Bring Us Peace" is a big request, but the most sacred and important request any of us can make, in my opinion. And on that day, knowing my dad's difficult journey was complete, and singing from the most joyful place within my heart to help usher all the members of my larger family into whatever comes next, I did not feel I even needed to ask. Peace was already here.
May it remain.
May it remain.
ABOUT THE ARTIST
Anna Huckabee Tull is an Award-Winning Singer-Songwriter, a longtime Life Coach, and the author of the upcoming 2017 book Living the Deeper YES. She has one of the coolest jobs on the planet, creating original songs of love, loss, birth, growth, and celebration for individuals all over the US - and the world - who feel called to commission and co-create a song. Anna lives in the woods of Concord, Mass with her supportive and dashing husband and her two lively and creative teenage boys. She performs monthly in a psych ward lockdown unit and teaches guitar to prison inmates.
Anna Huckabee Tull is an Award-Winning Singer-Songwriter, a longtime Life Coach, and the author of the upcoming 2017 book Living the Deeper YES. She has one of the coolest jobs on the planet, creating original songs of love, loss, birth, growth, and celebration for individuals all over the US - and the world - who feel called to commission and co-create a song. Anna lives in the woods of Concord, Mass with her supportive and dashing husband and her two lively and creative teenage boys. She performs monthly in a psych ward lockdown unit and teaches guitar to prison inmates.
OF SPECIAL NOTE: The Colonial Sound Studio recording of "Out of the Blue" marked the first time I collaborated musically with my 16-year-old son Ben, who composed and recorded all of the additional instrumentation on that song. Even at just sixteen, he has the gift!! I have been watching Ben compose and engineer much of the music for his original short films, and have been quite blown away. Check out his movie "Multi Tool" for which he created all 25 tracks of the opening soundtrack, as well as just about everything else (special effects galore). Or check out any of the other many movies on his Legacy Films YouTube Channel and you'll see what I mean.
If you have been touched by the experience of dementia or Alzheimer's in a loved one, please consider posting here. And thanks for listening! - Anna
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