A man lies in a coma, in the final hours of his fight with dementia, struggling for every breath that rattles through the respirator. At the bedside, his son sings him his favorite song. The father’s eyes open, express joy, and then . . .
Neurologists who study the effects of music on those with Alzheimer’s/dementia believe it can stimulate memory in startling and positive ways. Two theories are prevalent concerning why music can be so powerful where memory is concerned: first, music is essentially emotional content that can trigger some of our most powerful memories, and second, music taps into “procedural memory,” the kind we associate with repetitive experiences. Because dementia primarily affects areas of the brain associated with episodic experience, specific events are often lost to those with Alzheimer’s/dementia. But when they learn to recognize a piece of music, people utilize procedural memory
, which can be largely intact, despite the disease.
The following interview tells a touching story about precisely that kind of response between Tom and his son, Tim, who sang his father a song as he lay dying.
This feature is the third and final post about Tim and Tom, and it provides another dramatic example of how person-centered care can improve the depth and richness of the dementia experience. The first
is a story of how Tim took Tom (a World War II fighter pilot) up in a small plane, where both Tom’s memory and flying skills revived remarkably, so much so that the pilot handed the controls over to him, and the second
is about how Tom’s combined love of swimming and his wife Alice brought him renewed joy and surprising vigor late in his dementia experience.
Accompanying the interview is a video retrospective of Tom’s life, authored by Tim from family photo and film collections. The soundtrack of the video is a recording of Tim’s song, “Hold On,” the tune he lovingly sang to his father before his passing.
Following below is an audio presentation and the transcription of my interview with Tim.
Terry: Welcome. This is Terry, host of the CPI podcast series, Unrestrained
. Today in celebration of Father’s Day, I’ll be doing a feature interview with the Milwaukee native and dementia caregiver, Tim Goss. Hello and welcome.
Terry: Tim and his father, Tom, have been featured twice before in popular CPI blogs. So today is the third in the series of this fascinating look into person-centered care given from the perspective of an immediate family member. In many ways, Tim’s approach is reflected in the key aspects of the Warchol Best-Abilities Care Model
℠, something he became aware of through contact with Kim Warchol, but practiced in his own way before becoming aware of it as a defined care model.
Tim received his BS in material science and a BA in English from UW Madison and his master’s of arts in teaching from the National College of Education. Tim taught bilingual kindergarten at Milwaukee Public Schools throughout the 1990s. Following a career change into creative visual productions, Tim became a full-time caregiver for his father in 2008. Tim’s father had been diagnosed with dementia, and Tim’s care journey took him through all stages of his father’s dementia experience.
Today’s interview will focus on Tom’s love of music, his death, and the ultimate affirmation of remaining abilities. So Tim, in many ways, your father lived a very successful and somewhat remarkable life that can easily be seen in your wonderful video and the photographs of Tom from across the decades. Could we start today with a brief biographical sketch of your father, Tom Goss?
Tim: Sure. My dad was the fourth of six children born in the 1920s in Milwaukee, and he grew up in basically in the downtown area, near State Street. And his father, throughout his childhood, had steady employment working for Northwestern Mutual Life. Never missed a day of work, curiously. It was a very tight home, but there was also issues there too with my grandma who had early mental issues.
Anyhow, he attended school in Milwaukee, grade school, and high school, and went on to attend Marquette University. In his freshman year at Marquette University, though, he had taken a particular interest in learning how to fly. So every day after class in the fall semester, he would hitchhike out to Timmerman Field and get flying lessons. And then soon after that, he qualified as a young pilot and was recruited by the military to enlist for World War II, and he eventually joined the Marine Corps.
He served as a dive-bomber in World War II in the South Pacific arena, basically going on the maximum number of missions, target missions in targeting the Philippines. He was there on the very first day of the liberation of the Philippines, representing the Marine Corps. Anyhow, he returned from World War II in 1945 and immediately enrolled back into Marquette University where he eventually completed his undergraduate degree in engineering. Then he started law school there in about 1950, and that was immediately interrupted by a request from the military to go back into the service voluntarily for the Korean War.
Terry: To fly for them again?
Tim: To fly for them. They basically were sort of caught with their pants down, essentially. They had not trained a new group of Marine Corps dive-bombers, because they were not expecting another conflict so soon.
Terry: I see.
Tim: So they asked all their previous flyers if they would consider coming back for the Korean War. And my dad and many of his friends agreed to do that without much hesitation. So he went back to Korea. He went back to the military and served in Korea, again doing his maximum number of missions over the course of about two years. He was then basically informed that he would soon be leaving the service because of accomplishing the maximum number of missions, and he came back to the United States.
And in the military, until the day you are actually formally discharged from the military, they train you and carry on like you’re full-time. So he was actually training in Carolina upon returning from the Korean War one day when he had his single engine plane. The engine died, and he crashed in a very, almost jungle-like area in North Carolina. And as a result of that, a year and a half later, they eventually had to amputate his leg. He then came back to Milwaukee, finished his law degree in 1956, and immediately started working for the Allis-Chalmers Corporation. By this time, he had three children and a fourth on the way. Incidentally, he had also been married in 1952.
Terry: That’s just for some funny clarity.
Terry: How many children ultimately did he have?
Tim: There are seven children in the family, which were born between 1952 and 1966. Anyhow, so he started, he quickly learned how to carry on in life as an amputee. He did have some very good mentoring from some amputees—veteran amputees here in Milwaukee, very critical help early on. And really had a very normal life as a father and a working adult.
Terry: I see.
Tim: And as I was growing up, I always thought that every father had one leg because that’s what I saw and that’s what he portrayed too that that was normal. So he was very at peace with his situation.
Terry: And remained athletic with it, too, didn’t he?
Tim: As best he could, yes.
Terry: As best he could.
Tim: He’d do a lot of swimming and things like that.
Terry: All right. So we get a good sketch of this guy: fought hard in the war, was asked to re-enlist and he did it cheerfully, lost his leg, became a lawyer, raised a family. Now, what is the situation where you start to become a full-time caregiver for Tom later in his life?
Tim: Yeah. Fast forward to during his later retirement when in his mid-80s. I was living nearby and I just noticed certain lapses in his brain functioning and started getting more involved in his day-to-day life just to make sure he was safe. The rest of the family concurred that something was going on so we kept a close eye on it and worked with the VA about it too. And eventually we determined that he and my mother would do better, they would prosper more, in a care facility where there are services there but still in an independent living arrangement.
They chose the Milwaukee Catholic Home. They were very happy to come here, and once they moved into the Catholic Home, I pretty much moved in myself and picked the couch for sleeping every night and have been doing that for probably about six and a half years.
Terry: I see. And as your father progresses in his dementia, your role, I imagine, gets more and more demanding?
Tim: Yes. It was very slow changes that happened—very slow changes that occurred—and so I was able to kind of make the adjustments as we went along. The good thing is we got along wonderfully, my parents and I, before this, so this was all kind of very fun to be in each other’s company. And my father slowly yielded control of decision making on very simple things to me as time went on and he became more compromised. And most critically, trusted me in my leadership basically of helping him to be safe and enjoy his life.
Terry: How did you—well, besides taking him flying again, how are some other ways you celebrated his remaining abilities? I mean, people can look, there’s a blog here
, which we will point to here where Tim actually took his father up with some advanced dementia into a two-seater plane and Tom not only flew the plane by himself but landed it. So we’ll put a link to that as well. But what are some of the other abilities-driven activities that you would do with your father?
Tim: Well, he always loved music from early on. He just loved music. He first learned how to sing when my grandfather would get up every morning for work, go into the bathroom, and shave, and he would make his two sons come in and sing with him.
Terry: All right.
Tim: He made them. There was no choice involved. And my dad at the time was probably six or seven. And so my grandfather would sing a melody; one I remember was “The World is Waiting for the Sunshine” or something like that. A Les Paul song.
Tim: And he taught my father and my uncle how to sing harmony, and so my dad’s one of those singers who just naturally hears a harmony part. Coincidentally, he also had a phenomenal voice, which his grandfather did not have, nor his siblings.
Terry: He had sort of the archetypal Irish tenor voice.
Terry: Yeah. He was a beautiful singer.
Tim: It was all there. Anyhow, so he had a love for music, which he pursued throughout his life. He was involved in grade school and in high school in choirs and stuff like that. He would always sing at parties, everything. He just loved singing, I would say even more than listening to music. He just loved to sing. Eventually that evolved into him being in the church choir when we finally got our home and he continued that throughout his adult life, singing. So I purposefully tried to emphasize music.
I eventually became a musician, and he was quite delighted with that. And so when I was taking care of him, I was very vigilant about including my music with him. I would write songs in front of him; I would write songs for him; I would perform. I did a lot of concerts here. And I also played a lot of the music that he and my mother listened to in their young adult life, basically Billboard hits from the 40s and 50s. I purposefully went out and sought that and found a 10-CD collection and played it night and day here, and it just delighted them to hear that stuff. So I did use the music component.
He also loved to swim
, so I would take him swimming three to five times a week at his usual pool, and then towards the end of his life, at a pool that was nearby the Catholic Home that worked well for him.
Terry: Now, there’s a song that’s behind the—now you talked about writing songs that your father liked—there is a song which is the bedtrack for the video that you saw. Could you talk about writing that song and how that became so special to Tom?
Tim: Yes. In the late 80s, I had the good fortune of stumbling into a black gospel church and immediately fell in love with the music and, essentially, invited myself into the band and got immersed in black gospel music. Several years later, I ended up writing a gospel song called “Hold On,” which was very melodic, a pretty melody, and my dad just immediately latched onto that song. It just soon became his favorite, and every time I would see him, he would ask me to sing that song to him.
Terry: That’s beautiful.
Tim: To his dying day. In fact, in his dying days, I went into the studio and recorded it with one of the lead singers from my local gospel group so that he would have that song in his room.
Terry:And that ties in with our question here—the Warchol Best-Abilities Care Model
℠ emphasizes ability at every level, and you have a beautiful story about Tom’s ability in his last days concerning that music. Could you share that with us?
Tim: Sure. During the last week of my father’s life, on a Monday, the doctors basically stated that he was now in a coma. And so all the family assembled the following day on a Tuesday and went to his room in the special care unit and sort of held vigil with him there. The whole time he was in bed, obviously oblivious at least to our presence as far as we knew. When we would look down at him and his eyes were open, he would look right through us. It wouldn’t register in his eyes that we were there. The whole family was there.
I got there and it felt very crowded and of course it was every challenging for me and I just wasn't in the mood for spending much time there. So I left. Later that early evening, I went and picked up a friend at the airport, and on the way home, asked her if she would be interested in visiting my father, whom she had known throughout her life. And she was very excited about doing that. So we went back up to his room. It was very different when I walked in there. The light was off. There was a small night light on next to his bed. He was curled to his side, struggling to breathe, struggling tremendously to breathe with a respirator.
Terry: So your father is at the very, very end stage of dementia here and it’s about to claim him?
Tim: Yeah. Dementia was killing him. He was dying.
Tim: And that was the first time I had ever gone to my father’s room where I just didn’t know what to do.
Tim: Like I always had a trick for grabbing his attention, redirecting him, getting him to focus on something positive and real. So I looked at my friend and I just said, “Boy, I don’t know what to do.” And then I thought, sing a song. I immediately thought of my dad’s favorite song of mine and I knelt down next to him, his face was about a foot and a half away from me, and I started singing this song to him. And I got to the second from last line and all along his eyes had been shut, and then suddenly they popped open. That was quite remarkable.
But then I looked at his eyes and I could tell immediately he saw me. It wasn’t that vacant stare. He was looking right at me and his eyes were basically smiling at me. And I was just blown away by this and of course I felt obliged to finish the song. So I did and I got to the end of the song, and he broke into a smile and he just had this big long smile looking at me, and I was stunned by all of this. And then he puckered his lips twice and gave me two kisses at the end of the song.
Tim: And I was just shocked. I looked up at my friend after that, and then he closed his eyes again. Looked up at my friend and asked, “Did this just happen?” She said, “Absolutely. I was here. It did.” And I knew my father was dying, so I made the decision right there and then that was the last time I was going to see him. So I stood up to leave, looked down at my father one more time, and made one last observation, which just blew me away. His breathing had normalized. It was completely normal. He was sleeping and breathing just very normally and I felt very good about that. And I left and went home and told my mom the story, asked for her permission not to visit my dad again, and she was all for that. So that’s the last time I actually saw him. He gave me that gift.
Terry: Well, thank you, Tim. What a tremendous story about the remaining ability that Tom had to recognize you and the music and to embrace you, and the last thing that you remember is your father and him being in peace. Well, my guest today has been Timothy Goss. Thank you so much for this reminiscence, Tim.
Terry: All right. And that will conclude our interview today.
What have you done to make sure your loved one with Alzheimer's/dementia is living life to the fullness of their abilities?