The Accidental Caregiver: An Interview With Gregor Collins
Posted on Monday, December 2nd, 2013 at 8:49 am by lifemediamatters
When Gregor Collins began caring for noted Austrian Holocaust refugee Maria Altmann nearly five years ago, he did not expect his experiences to evolve into the most profound and intimate relationship of his life. The aspiring actor/producer also did not foresee a critically acclaimed memoir detailing their unique bond, or his involvement in A Good Day To Die- an upcoming feature film exploring end of life issues with a comedic perspective.
Now 37, Collins spoke to Life Matters Media about his relationship with Altmann and his caregiving experiences. His first book, ‘The Accidental Caregiver,” was published in 2012. Altmann died in 2011 at age 94 with complications associated with dementia. She is remembered for her successful legal campaign against the Government of Austria to reclaim five family-owned paintings by the artist Gustav Klimt; the paintings were stolen by the Nazis during World War II.
How did you become a caregiver for Maria Altmann?
I was never drawn to it. Actually, it was never something I considered doing. I was just living this selfish life in Los Angeles and pursuing acting pretty heavily. A good friend of mine called me and said, ‘I’m taking care of this woman from Austria and she’s awesome, you have to meet her.’ I sort of blew him off a bunch of times, but then he told me that the family really wanted another caregiver. I finally agreed to meet her, and my life changed right there. It was like the first time in my life I cared for somebody besides myself, really.
I was definitely not a perfect caregiver. I didn’t have any skills or know anything about medicine. All I had was a good heart, and she was unbelievably amazing. She brought the best out of me. I was hired as a caregiver, but I became her companion- someone she wanted to have around to talk and laugh with. I wanted to be there every day. She was like a mother, a grandmother, a friend, even a lover from another lifetime.
Los Angeles is a lonely place, so it was nice to talk with her about art, the weather– she satisfied me in a romantic way, like we wished we could have met 70 years ago. We just clicked, you know.
What was the most difficult part of caring for someone?
Because I really fell in love with her, it was difficult to see the aging. It is really difficult to see someone you love and know that they won’t be around. That’s the hardest part.
Whenever I got emotional around her, I would leave the room. There were many occasions she would say something so sweet to me. One time we were driving and she said to me, ‘You’re going to miss me. I’m going to miss you.’ I started crying out the window, and she never knew. Towards the end, I cried in front of her for the first time, and I felt guilty- like she would know she is going to leave soon. But she almost giggled at me because she thought it was so cute.
How did you interact with Maria when she was feeling ill?
She developed some dementia towards the end. When I met her a few days shy of her 92nd birthday, she was right on the ball. After the Klimt case, her oldest son tells me that she was sharp as a tack until 90. She would talk to reporters in Italian and French and German, and would really get the media laughing and on their toes. After the paintings came in, she felt like she could wipe her hands and just be an older woman. It was never close to the point where she couldn’t recognize me, but I could leave the room and come back- and she would think I was coming back for the first time.
Often times with Maria, I saw firsthand how exposure to love and youth were more powerful than medicine. Instances where she was in pain or not her usual effervescent self, I would play her an opera, or I would walk in the room with a smile. These little things brought more life and joy and love to her face and body. The notion of ‘love is more powerful than medicine,’ I stand by it.
Also, I read that when it comes to Alzheimer’s and dementia, all the top doctors and medical professionals agree that medicine is not the most powerful or effective means to fight them– keeping minds active and stimulated is. I felt that was part of my job to keep her mind scintillated, and I really believe this extended her life and kept her dementia at bay as long as humanly possible.
Why did you choose to write ‘The Accidental Caregiver’?
I kind of wrote it because I felt like it was one of the most important things I could do in my life. I needed to preserve her legacy and our relationship. I also wrote it because I was so emotional, and it was an intensity. It was just me alone in a room at night crying or laughing about the day. It was really touching and surprising when people started to connect with it. I never expected the response.
More From Life Matters Media
Double Mastectomy And Fear Of Death Can Dampen Intimate Desires
Posted on Friday, November 29th, 2013 at 10:33 am by lifemediamatters
“Can’t you see I’m starving? For as much love as I get from you, I could be living on the moon. Are we ever going to resume our sex life? Because if I wanted to live like a nun I would have joined a convent. Your sex aversion is making me sick.”
I want to introduce you to my friend Holly.
She is 43 and a graphic artist. She had a double mastectomy three years ago and has been cancer-free since. She shares a home with her wife, Jean, and their teenage daughter, Annie.
A beautiful smile radiates from Holly’s full, mocha-colored face. Oodles of thick jet-black braids spring from her head as from a fountain gone mad. Her frequent laughter is like music, making her whole body dance and shake. However, her levity masks a somberness and apprehension.
She tells me: “I have become consumed with worries about getting sick again. My fears can turn into a paralyzing dread that takes days and sometimes weeks to shake. I know that until I can accept the possibility of my own death, I’ll never be able to embrace all the great things that are right in front of me.”
Later in our conversation, she lets me know she’s struggling with her body image. The mastectomy scarred her not only physically, but psychologically as well. “For a good six months after the surgery, I was so sick from all that poison, that the thought of sex of any kind made me nauseous,” she says. “I didn’t even want to have Jean in the same bed with me, and it was awful.”
Over time, the nausea diminished. Holly was able to resume some semblance of intimacy with Jean. They watched TV while holding hands, as long as it was not sexual.
A couple of months ago, however, Jean and Holly had a blowout. “We were screaming and yelling when she finally blurts out, ‘Can’t you see I’m starving?’” Holly recounts. “Jean tells me, ‘I have needs too, you know. For as much intimacy as I get from you, I could be living on the moon. Are we ever going to resume our sex life? Because if I wanted to live like a nun I would have joined a convent. Your sex aversion is making me sick.’”
The intensity of Jean’s outburst blew Holly away. She had completely forgotten about her needs. After the surgery, Holly didn’t feel like a woman.
When things simmered down, Jean could tell she wounded Holly deeply. But she knew Holly needed to address it.
Jean was right- Holly was starving too, but she was too afraid and ashamed to admit it. The pair made attempts to move past the status quo, but it’s not like the old days.
Holly wonders how she can make a gift of herself to someone if she’s not feeling much like a treasure. She still feels shame about losing her breasts. “I’m not a whole person anymore,” she says.
That’s where Holly is mistaken, and I jump in.
“Where did you lose your breasts, at the laundromat?” I laugh. “You didn’t lose your breasts- you had cancer, and they were removed to save your life. There’s no shame in that!”
It doesn’t sound like Jean thinks of her as “damaged goods,” and the attraction remains.
The couple needs to let their love heal Holly of shame and self-doubt.
Has Holly ever taken the time to grieve the loss of her breasts? Could she ask Jean to hold her while she weeps for what is no longer hers? “Share it with her,” I tell her. “Don’t carry this alone.”
Holly counters that her sex drive is non-existent.
The first couple of months after chemo and radiation, she experienced a weird feeling when Jean would attempt closeness. “It was like a bad acid trip,” she says. “I felt as though my body was there with her, but I felt nothing. I would lie there asking if I would ever feel normal again, and wondering how many more opportunities I would have to be with Jean before I died.”
Back then, Holly was fighting for her life. That fight is bound to alter a person’s perspective.
I suggest that she talk with Jean about her concerns. A neutral time- not during an intimate moment- is best. Then, Holly can speak freely without fear of Jean misinterpreting her comments as sexual rejection.
“But what if I screw up?” Holly asks. “If this somehow scars Jean for the rest of her life, I wouldn’t be able to forgive myself.”
Holly needs to reassure Jean that she is committed to working through this impasse. In return, Holly could ask for her patience. She needs to give Jean some sort of timeline- or Holly may put this off indefinitely.
“You didn’t lose your breasts- you had cancer, and they were removed to save your life. There’s no shame in that!”
I recommend they begin to explore what is possible now in their sex life together. Avoid comparison to the past. Keep the exploration simple. Don’t create a goal to be achieved.
They can start with cuddling and spoon breathing- Jean’s front to Holly’s back. They can match one another’s breathing pattern. First, Jean will try to match Holly’s breathing. Then, they switch positions. It’s the ideal place to start rebuilding a sense of confidence about being physically together.
Spoon breathing embraces could become more adventuresome. When Holly is feeling up to it, she can take one of Jean’s hands in one of her own and guide it over her body in a way that feels pleasurable and comfortable. This will be a very effective way of reestablishing a threshold for what is possible now, as well as moving forward.
“Keep these exercises playful and honor your limits,” I remind Holly- and ask her to let me know how it goes.
“Time To Die” Means Time To Talk
Posted on Tuesday, November 26th, 2013 at 2:44 pm by lifemediamatters
Media images of dying surround us everyday. In an average hour of dramatic television, bodies fly across the screen as they are shot, knifed, bled, disintegrated, run over, and even decapitated. Heroes in these shows regularly kill the bad guys and in one case, the hero is the bad guy as serial murderer. And that’s before the news comes on.
While we are surrounded by death in our entertainment, these depictions have been blamed for numbing us to mortality and make us less likely to stare death in the face. The more we see outrageous death on television, the easier it makes for us to deny it in real life. Just avoid a zombie bite or a sword-wielding soldier and life will continue.
True and accurate portrayals of death are hard to find. Perhaps one of the best is from the play (and later HBO film), Wit by Margaret Edson, a staple in death & dying courses and medical classes. Documentaries and movies in recent years have explored physician-assisted suicide. Even these deaths are viewed as happening to an “other.” In Wit, Vivian Bearing is a person who has managed to go through life without making any connections to other people. Assisted suicide is not common and is still illegal in most places. We watch, but we do not identify.
Now a new mini-series on the premium cable channel Showtime is bringing conversations about end-of-life into living rooms across the nation. According to the show’s official website “Time of Death offers an unflinching, intimate look at remarkable people facing their own mortality. Cameras follow these brave, terminally ill individuals as they live out the end of their lives.” In short, for the first time, an audience can see how a person just like them dies.
Each of the 6, 1-hour episodes features two people who are dealing with their end of days. One person’s story arcs across the whole series, Maria who suffers from stage IV breast cancer. We view her mood swings as she undergoes radiation therapy for a brain metastasis and the steroids she takes to control brain swelling. Viewers see her two youngest children talk about their fears of losing their mom. And at the center of this saga is Little, the 25-year-old daughter who is supporting her mother but mainly, making plans to take care of her two siblings after their mother dies.
Each series also contains a shorter story of another person’s death. In episode 1, Michael is a Navy vet dying from cancer, surrounded by his family. Episode 2 has the story of Lenore, a 75-year-old grief therapist dying from cancer. Her scene opens with a final party, recognizing that her life is at an end. Eschewing all treatment, we watch her decline into a world where she is too weak to leave her bed.
The series is edited to play with our emotions, to make us feel empathy and sympathy for the patients and families experiencing these deaths. This is not surprising considering that the series is produced by the reality series creators of “Project Runway” and “Top Chef.” These stories offer another opportunity for reflecting on the great equalizer, the fact that each of us will someday die.
Most of us are looking forward to sitting down to overindulgence and time with friends and family in the coming weeks. While these are times of celebration, take advantage of this opportunity with your loved ones to talk about your end of life wishes. It’s not enough to watch other people dying. It’s necessary for all us to think about how we want to die. Avoiding the conversation does not put off the inevitable or increase the chances of immortality.
Consider the information that you want others to know about your end of life wishes and what you want to know about theirs. Encourage your family to view one or more episodes from the series. Watching them together is best. Other useful tools include the The Conversation Project, Five Wishes and (for teens and young adults) Voicing My Choices.
Perhaps Lenore summarizes the importance of this series and the conversations it should elicit in all of us, “We live in a death-denying culture.” With “Time to Die,” we can’t deny it any longer.
Step One – Buck Up And Talk About It
Posted on Saturday, November 23rd, 2013 at 10:32 am by lifemediamatters
A few years ago, I was driving one of my daughters home from the dance studio. She was in the back of the vehicle, sitting in just the right place so that I could see her in my rear-view mirror. It is a relatively short commute from the studio to our home, but in that short time, fantastic conversations take place. I cherish those drives.
During one of these commutes, out of the blue, my daughter asks me, “Dad…”.
“Yes?” I responded.
“What does ‘doing it’ mean?”
At that moment, every book on ‘How To Talk To Your Kids About The Birds and the Bees’ flooded my mind, as I searched for an answer on how to respond to that dreaded question…especially while driving.
“Well…um…it means…uhhh…sex,” I said– not all that confidently.
“Oh,” my daughter responded, clearly pondering my answer. A few minutes passed, then a few more– it felt like an eternity.
“Dad,” my daughter broke the silence.
“Yes?” I asked nervously.
“What is sex?” she asked, inquisitively.
Oh Crap, I thought. Now I have to address it. There is no escape.
“Well…umm…well…it is how mommies and daddies make babies,” I said trying to cover-up all self-doubt with a facade of manufactured confidence.
An eternity passed.
“Oh,” my daughter replied, still clearly pondering.
That was it. That was all she had to say. No more questions. The conversation, for the time being, was over.
I will remember that short conversation as long as I shall live, both as a nervous moment of parenting, but also as a lesson and a reminder of what it means to be human, sharing this experience of life with others.
However, it strikes me that as difficult, scary, nerve-racking and uncomfortable the conversation about sex might be, we as a culture encourage this kind of dialogue, as well as conversations about drugs and other behaviors, with far more vigor and urgency than we do about the one thing that all of us, all of humanity with absolutely no exception, shares in common.
That other topic that we seem to refuse to talk about? Mortality. Death. Our death. The death of others. The afterlife. We simply do not talk about it. Do you?
I have no idea why we don’t. Maybe it is because some people’s confidence and “know it all” experience of faith and the afterlife makes the rest of us feel inadequate on the topic. Therefore, we don’t talk about it at all. Maybe it is because the differences of opinion on the subject are more contentious than a conversation on modern American politics. Or maybe it is because we simply don’t know what happens after we die, and it worries or scares us. It even scares people of deep faith.
As a pastor, I see families struggle with the big questions of the afterlife, faith, God and death at the time when it is the most difficult to do so…after a loved one has passed, causing all kinds of doubt, questions, uncertainty and fear.
As my first column here, I do not intend to drive home a specific spiritual or theological doctrine, nor do I intend to convert anyone to any particular spiritual ideology. I admit that my perspective is grounded in Lutheran Christian theological training, but it is not the only perspective.
My point in this installment is to encourage everyone to talk about matters of faith, life, death and the afterlife with the same vigor and urgency as we encourage other conversations.
Don’t try to come to conclusions, but embrace the bigger questions. Embrace the questions and the conversation not because of what some of us may or may not believe happens after death (a conversation for another time perhaps), but rather to begin to prepare each of us for the inevitable. Only then can we begin to embrace the possibility of faith and spirituality in our lives…and in our deaths.
Delivering The Bad News
Posted on Thursday, October 31st, 2013 at 10:10 am by lifemediamatters
By Andrew Thurston, MD
Friends and family often wonder how I can give bad news day in and day out – how I can stomach it, how I can come home at the end of the day and not feel crushed by an overwhelming sadness. How I am happy and satisfied with my life, and not perpetually depressed.
“How do you do it?” they ask. “How do you tell people they’re dying? Isn’t it hard? Doesn’t it make you sad?”
I’ve often reflected on the nature of my work, and the honest answer is: yes, it makes me sad. Immensely. Sometimes so much so that I think of nothing else for days. For months, even. But as I dive deeper into my career, I find myself clinging to this sadness. It’s something I hope to never lose – this visceral reaction to suffering, the overwhelming humanity of it all.
I think the day I stop being humbled by death is the day I must move on in life.
But what many don’t understand is that it’s not the delivery of bad news that’s hard – it’s what happens after the delivery that’s the challenge. The bad news itself is just words. Syllables strung together, sometimes not even a complete sentence. The actual delivery of bad news can be as simple as dropping a package off at a stranger’s door – you can toss it from hand to hand, kick it around a bit, watch it land in a heavy lump on the ground. You may think it crass and insensitive, but I’ve seen it done before. I’ve seen people hurl the news at the door and walk away, only to watch from a distance as the family struggles to carry the thing inside, and find a place for it in their lives. I’ve seen it done because I’ve done it myself, before I knew any better.
My approach is very different now – evolved, in many ways; it has matured with time and experience, and is, hopefully, more respectful. I am now an obsessive preparer. I make sure people are home, I make sure the timing is right. I carry the thing into their home, help unpack it for them, answer any questions, figure out where it might fit in among their other things. And I make sure to stick around for as long as I am needed, waiting and listening as they cry and shout and react in their own way – not wanting anything more in their already overcrowded lives.
The delivery of bad news is not the hard part (though there are many ways to deliver it gently, and many other ways to break it) – it’s wading through the emotional flood after the delivery that’s tough. It’s the reason why, I think, many physicians hate giving bad news – because it can be so uncomfortable, so vulnerable, so very raw.
But more than this, I suspect that the moment after bad news is delivered is the one time in medicine when physicians feel completely and utterly helpless- no longer in “control” of the situation. A physician crosses a boundary in the moments after bad news – an emotional threshold of sorts, entering into the often unexplored psychosocial-spiritual domain of the patient as a person. It’s unfamiliar territory, and foreign, and can be – at times – a frightening place. I suspect that many physicians see a reflection of their own humanity, and mortality, in the eyes of their dying patients: a reminder that all life, and all medicine, ultimately answers to the same end.
I wonder if many physicians give bad news and then awkwardly leave, or spend the time sidestepping emotional land mines, due to this discomfort and vulnerability. I wonder if many physicians talk instead about tangible things in tangible charts, things like creatinine and white blood cells, due to a fear of the unknown.
I wonder if avoidance is the most effective, or perhaps most accessible, coping mechanism for some.
I used to take this path of least resistance, but it doesn’t work for me anymore. I think avoidance would just feed my inner dialogue, and I would shuffle home at night and sit in a dark corner and think about all the suffering I had seen. These days, I face the emotion head-on, not only because I’m convinced it helps patients and families deal with a difficult situation (though this isn’t always the case), but because I’m convinced it helps me deal with the stress of death and dying. When I take the time to sincerely listen and explore the terrifying implications of the end of life, I often feel like I’ve helped families find some clarity in the chaos- some “good” in a “bad” situation. And this helps me go home at night, be with my own family and play with my son without a heavy heart and without limbs of lead.
Of course, there are days and there are situations from which I walk away unsatisfied, and unfulfilled – I think I would be a hopeless optimist, and a little bit of a fool, if I said otherwise. But I find myself, over time, better equipped to handle these days – in part because I’m not entirely altruistic in my work. I realize that I have to take care of myself – as a person, as a husband, as a father – so that I can take care of others as a physician. And so the things I do – the planning, the conversations, the debriefing and the emotional exploration – are as much for me as they are for my patients.
In the beginning, when people asked me if I felt sad or depressed by the work that I do, I said no, not really. Now I say yes, it makes me sad – but I’m not afraid of feeling sad. In fact, there are times when I need to know sadness – heartbreaking sadness, perspective-redefining sadness – because maybe, in some small or perhaps significant way, exploring the murky depths of death helps me better appreciate and cherish what we, as people, can have in life.
And because, at the end of an often very long day, what I do for a living is ultimately more about life itself than it is about death.
Andrew Thurston, MD, is a Clinical Assistant Professor of Medicine, Division of General Internal Medicine, Section of Palliative Care and Medical Ethics at the University of Pittsburgh. He completed his medical school training at the Baylor College of Medicine, and his residency at Northwestern Memorial Hospital. He subsequently completed a Geriatrics Fellowship and a Palliative Medicine Fellowship at Northwestern Memorial Hospital.
His clinical activities include supportive and palliative medicine inpatient consult service at UPMC Mercy Hospital.
Current areas of interest include the application of palliative principles to geriatric syndromes and disease, and the incorporation of literature and civic reflection in medicine.
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