'The hardest role I've ever filled'

Providing end of life care to a loved one in cognitive decline can seriously challenge the mental health of the caregiver

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After growing up with a parent with mental illness, extricating herself from a 20-year marriage wrecked by alcoholism, and working for years to understand her own mental health challenges and dysfunctional patterns, Susan Stasiak thought she understood as well as anyone how to manage stress, maintain balance and cope with adversity.

Not that it had been easy. Her mother struggled with what was then called manic depression (bipolar disorder), though the lack of awareness in the ‘40s and ‘50s meant it went undiagnosed and untreated. Her extreme mood swings and the alcohol she used to self-medicate put Stasiak and her three sisters in a constant state of wariness and anxiety. Their father reinforced the idea that his daughters should subdue their energy as much as possible and “tip-toe around” to avoid igniting their mother’s volatility. Her eldest sister took on many of the parental responsibilities and the siblings fell into an obedient line.

“The memories I have of those early years are actually kind of grim, “says Stasiak, who grew up in inner-city Massachusetts and lived most of her adult life in Ohio before retiring several years ago to Florida. “In that culture, no one recognized what my mother had. So at the time, in my child’s mind, I attributed it more to the environment than my mother.”

When Stasiak turned 9, her father, who worked for General Electric, was transferred to Hendersonville, North Carolina. The family rented a big house in the country with just one neighbor in sight and the girls were allowed a freedom they’d never felt before. Stasiak thrived on the fresh air and outdoor activity. Even her mother seemed happier, she remembers, spending her time puttering in the garden.

“I could feel the difference even at that young age,” she says. “I could feel how nature supported us, which goes along with what I know now, that I’m happier when I’m out in nature.”

But after only two years, her father was transferred back to Massachusetts and the family fell once again under the shadow of her mother’s illness. Fortunately, Stasiak was enrolled in an excellent school system, which fed her academic curiosity and, after high school, she commuted to college in nearby Boston.

But the imprint of the family dysfunction left its mark. Though she disparaged her mother’s heavy drinking, Stasiak nevertheless began to experiment with alcohol herself. When she met a man “who also came from a family with challenges and who had the same idea about drinking,” the familiarity of the situation led to marriage. The couple moved to the Midwest where they had two daughters and a home life marred by their mutual alcoholism. When worries, problems and arguments arose, Stasiak covered them up with alcohol, just as her mother had.

After 20 years of marriage, as her daughters’ prepared to leave home and a depression exacerbated by seasonal affective disorder deepened, Stasiak began entertaining thoughts of taking her own life. Even as she pursued a divorce and sobriety, the dark thoughts persisted. Fortunately, she reached out for professional help.

Diagnosed with “hypo mania” (a milder and usually shorter-lived period of the over-active and excited behavior than bipolar disorder presents), she was put on medication and embarked on a serious commitment to both traditional and alternative therapies. In talk sessions and peer support groups, she worked on dismantling her familial destructive coping techniques, resolving her traumatic history and learning – mostly through mindfulness and cognitive behavior techniques – to manage her emotions and thoughts and take responsibility for her choices and actions.

“I spent a lot of time working on myself and I’m proud of that because I needed to,” she says. “I’m really turned on by human development and growth. It’s definitely my mantra.”

Indeed, so turned on that she eventually chose to make it her career. It was a time when phrases like “leadership from the inside out,” “team development” and “customer service as service” had become a trending philosophy in the business world.  So enthused was Stasiak with the changes that had come about from her own personal growth,  she used them as the basis for creating a consulting business that provided corporations, government agencies and nonprofit organizations with training aimed at improving the success, productivity and contentment of their work force.

 For the next three decades Stasiak would provide coaching and workshops to clients hungry for the knowledge and practices she herself had absorbed. But, despite the power of her personal story, on the advice of those who knew her background and in keeping with the taboos of the time, she never shared that lived experience with her clients.

“I could use some of the knowledge that I was practicing on myself with these folks and, guess what? It worked,” she says. “But it was viewed perhaps at the time as unprofessional to talk about something as intimate as that, almost like using a group for your own well being and I didn’t think that was the place to do that.  And let’s not forget the stigma, which still exists today.”

She does remember one exception, when she developed a stress management workshop called “Care for the Caregiver” for foster parents, mostly grandparents of the children in custody. The effect of sharing her story in that case was tangible.

“I did reveal myself because it was more informal and some of the issues were so blatantly about dysfunctional families,” she recalls. “So this whole connection to what I was going through was very helpful and made me more authentic in teaching it. You have to earn your audience’s trust and one of the ways is by being as authentic as possible. The audience sits up taller, opens their ears wider when you have experience, because they can relate to it on an emotional level.”

At the time, she’d never been a caregiver nor did she anticipate being one. She couldn’t have imagined that one day she’d be coaching herself on the same subject.

After her divorce, Stasiak had dated casually, but her focus was on working to improve herself. So despite the encouragement of girlfriends, she initially “blew it off” when a man 11 years her senior began showing her some interest. She dismissed “Chuck” as too old and not her type – or at least not the type she’d always been drawn to in the past.  

“I’d always been attracted to an emotionally distant kind of person who did a lot of pouting, that’s what was familiar,” she says. “But I had changed. We started playing tennis together and I realized that this was a nice person. It was only my personal change that allowed for that to happen.”

Though they never married, she and Chuck were together for the next 25 years, until just recently, when he succumbed to a combination of Alzheimer’s, COPD and congestive heart failure. For the past seven years, as he steadily declined physically and cognitively, Stasiak was his caregiver. If she thought she’d been severely tested by the previous challenges in her life, she had no idea that end of life caregiving – “the hardest role I’ve ever filled” – was a hurdle that would push her close to the brink once again.

By this time Stasiak had incorporated plenty of stress management techniques into her daily routine, from playing tennis, to taking walks, yoga and meditation. In addition, a “coaching” voice now ran constantly through her head, urging her to examine her emotions, triggers and reactions. But with a disease like Alzheimer’s, where the progression can be gradual and grueling – or sporadically, swift and startling -- all of that practice and knowledge couldn’t change the reality that she was on a journey over which she had little control.

“The knowledge of the stress did not help me not have stress,” Stasiak says. “And one of the challenges is like the lobster in the pot. Do you put this lobster in the cool water and let it heat up or do you put it straight into the boiling pot? Well, as the caregiver, like the lobster, we don’t have a choice. So you have to acclimate to whatever situations come along.”

When Chuck’s needs were immediate and dramatic, “I got right into the anxiety and the angst,” Stasiak admits.  But even the most subtle irritations accumulated and began to take on outsize proportions.  She recounts how frustrated she became when Chuck, after countless requests, refused to lean forward while eating so that the crumbs he dropped would land on the table rather than on the floor. It made her angry that he seemed to  intentionally disregard her request and her work load. So something that was a minor conflict grew into a heated argument and an evolving resentment.

One day the crumbs fell one time too many and furious that he was still ignoring her simple request, she turned to Chuck in anger and barked, “Do you hate me?” Seeing his blank, uncomprehending stare, she realized that his refusal had nothing to do with thoughtlessness and everything to do with the progression of his disease.

“No matter how much you do the stress relief practices and respite and caregiving groups, that keeps building up,” Stasiak says, “and when the caregiver is also facing the morbidity of their loved one, it’s even harder because the needs increase and it’s really hard to see your loved one diminishing mentally or physically. I came to realize that I was expecting Chuck to be like he used to be and that change was something I could not control and I that was what I was really angry about it.”

Stasiak remembers a “breaking point” toward the final months of her partner’s decline.  Chuck was in at-home hospice care, lying on a hospital bed in their living room. Stasiak, who’d been experiencing severe back pain, was lying on the sofa nearby. Her oldest sister, whose life she believes was shortened by the traumas of their childhood, had passed away a few years earlier at 74, an age Stasiak was approaching. And she clearly recalls thinking, “I’m exhausted, I’m getting old.. Maybe it’s my time.”

“I felt like putting my head down and dying too because, what the hell?” she recalls. “This was just too hard.”

AARP research estimates that of the 40 million family caregivers in this country, 40 to 60 percent actually die before the person they are caring for. This includes not just suicides, but deaths attributed to other causes that may well have been precipitated by destructive behaviors caregivers turned to in order to cope with unmanageable stress. Stasiak believes caregiver deaths are “endemic” and “flying under the radar.”

“Nobody says, ‘She died from overeating,’” says Stasiak, whose two remaining siblings both struggle with food issues. “They say she died from a heart attack or a stroke or liver failure, or something that was caused by their addiction. Stress is never on a death certificate; the outcome of the stress is on the death certificate.”

Though her difficult childhood had taught Stasiak and her siblings to “be resilient and do for ourselves,” it had also taught them to hide their vulnerabilities and leave their needs unexpressed. She came to appreciate the importance of “getting beyond my ego” and allowing other people to help and support her.

“These are the secrets you don’t want to tell anybody,” she confesses. “You don’t want people to know you’re yelling and screaming at this person you love, that you’re pulling your hair out and thinking maybe you should die too. But it’s reality. So I tried to be as transparent as I could with people.  You have to show your vulnerability and open your heart to the possibility that somebody has a message for you in some way. I think the greatest thing, looking back, was letting people know and finding out where they could help.”

The “work on myself” Stasiak had done in the past also helped her sort out where her feelings were coming from and when they inappropriately directed. Acting as her own coach, she tried constantly to process, examine and understand her reactions. In one instance she realized that the irritation and frustration she was feeling about a behavior Chuck was exhibiting was, in fact, “sideways anger.” His behavior had triggered memories of a never-healed emotional wound from her mother.

“I suddenly realized, ‘Oh my gosh, this is where I forgive my mother,” Stasiak says. “And my mother has been dead for 35 years.”

At one point, a concerned friend asked Stasiak, “Are you happy in this situation, Susan?” Instead of responding with the obvious – “Are you kidding me?” – she took the comment as food for thought and examined her caregiving goals. She realized that what she ultimately wanted was “to provide [Chuck] and me with a comfortable journey until he died, one that wasn’t rough with anxiety for me or which would cause him to be anxious.”

Now, just weeks after his passing, Stasiak believes she was largely able to achieve that goal -- and save herself in the process. She’s turning what she learned into a book of advice for caregivers (“Above the Fray” is the working title) and offering workshops she hopes will guide others through the stressful caregiving process.

“Somewhere in the middle of my caregiving period, someone said to me ‘Well done, my good and faithful servant,’” she says, reciting the Biblical line from Matthew 25:23. “And I always remembered that because that’s what I wanted to feel at the end of this journey. And you know what? I feel pretty damn good. Not happy, because I’m missing him so much of course, but oh my gosh, this was an amazing journey and I learned so much.

“I’m grateful for the opportunity because his illness and Chuck pulled out in me what are the most important things in my life – patience, love, compassion, showing kindness, being vulnerable. Those were all important things I already knew. But I had to learn them on a really deeper level.”

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