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Tuesday, March 26 , 2019, 2:36 am | Fair 48º

 
 
 
 
Advice

Amid Ravages of ALS, Heidi Good Swiacki’s Blog Told Story of Hope, Help and Indomitable Spirit

Solvang woman’s posts mix emotion of confronting death with advice for others; husband asserts wife ‘had no desire to end her life’

Heidi Good Swiacki and her family, husband Stephen, son Christopher and daughter Ashton. Before her 2005 diagnosis of amyotrophic lateral sclerosis, or ALS, Heidi worked as controller at Lucas & Lewellen Vineyards, coached her kids’ volleyball and soccer teams, and served in National Charity League with her daughter. Even as her conditioned worsened, she still kept the family’s books and dispensed advice about ALS to others living with the disease. Click to view larger
Heidi Good Swiacki and her family, husband Stephen, son Christopher and daughter Ashton. Before her 2005 diagnosis of amyotrophic lateral sclerosis, or ALS, Heidi worked as controller at Lucas & Lewellen Vineyards, coached her kids’ volleyball and soccer teams, and served in National Charity League with her daughter. Even as her conditioned worsened, she still kept the family’s books and dispensed advice about ALS to others living with the disease. (Swiacki family file photo)

[Noozhawk’s note: This is the second article in a three-part Noozhawk series exploring the 2013 death of Heidi Good Swiacki, who suffered from amyotrophic lateral sclerosis, or ALS. Information for the stories was derived from statements and evidence presented during criminal grand jury hearings that resulted in the Solvang woman’s mother and her caregiver being indicted on first-degree murder and conspiracy charges. Not-guilty pleas have been entered for the defendants, who are to stand trial in November. Click here for the first article, and click here for the third article.]

Heidi Good Swiacki wanted to live, but the Solvang mother of two who was immobilized by Lou Gehrig’s disease knew how she wanted to die.

Following Heidi’s death — and the twin indictments of her mother, Marjorie Good, and her caretaker, Wanda Nelson, on homicide charges — her husband wrote on his wife’s blog that this wasn’t a mercy killing and that she didn’t ask for the plug to be pulled.

The entry on the Good Times blog was made after the Santa Barbara County District Attorney’s Office announced first-degree murder indictments against Heidi’s mother, Marjorie Good, and a caretaker, Wanda Nelson.

Both women have entered not-guilty pleas, and their trial is to begin next month.

“I can assure anyone who is reading this blog, Heidi had no desire to end her life, she had her bucket list and it was not completed,” Stephen Swiacki wrote on May 10, 2015. “She was alive, smiling, laughing and could still light up the room with her wit.

“So please, don’t think Heidi wanted to end her life. She felt it was in God’s hands to take her when ready.”

Heidi and Stephen Swiacki had been married for 26 years; were the parents of two children, Ashton and Christopher; and enjoyed a life “filled with laughter, trust and love,” she wrote in the introduction to her blog, which she said would demonstrate that quality of life comes in many forms.

“I have to tell you up front that there will be some spiritual references,” she posted. “Don’t be afraid or turned off by that. Since I have had ALS, I have seen many miracles. Let’s be realistic, who can be a happy, nonverbal, ventilated quadriplegic without faith?

“I hope you will join me and make this an interesting, educational, inspirational forum. Humor and the ability to enjoy life is required!”

The Swiackis had moved to Solvang from Santa Barbara in 1998. She started a company called Good Books, working as a “controller for hire” to help start-up wineries set up their accounting systems and procedures.

Scroll down to see a timeline of events from those transcripts.

Heidi Good Swiacki with her children, Christopher and Ashton. Click to view larger
Heidi Good Swiacki with her children, Christopher and Ashton. (Swiacki family file photo)

With two young, active children, Heidi volunteered as a volleyball coach, soccer coach and club soccer team manager. She and Ashton belonged to National Charity League, a nonprofit mother-daughter organization committed to community service and leadership development.

One of her Good Books clients, Lucas & Lewellen Vineyards, was growing fast so Heidi gave up her business and became the full-time controller for the expanding winery.

In 2004, after completing a 60-mile breast cancer walk, Heidi noticed her gait was awkward while walking to work. She blamed her shoes, tossed them out and bought a new pair.

“This continued for a year,” she wrote on her blog. “I would limp and tell myself, and everyone else, that it was nothing.”

The weakness only worsened. In November 2005, she saw a neurologist in Santa Barbara. Tests rule out the obvious, like multiple sclerosis or Parkinson’s disease.

“Then he proceeds to tell us that if ‘they’ can’t figure it out then it is probably ALS,” she blogged. “He sends us to a specialist in L.A. for a 2nd opinion,” she said, adding that the Los Angeles doctor had confirmed the diagnosis.

At the age of 45, Heidi was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. The progressive terminal condition affects the nerves in the brain and spinal cord.

The disease is inconsistent in how it starts — some lose weakness in their throats and mouths. Others, like Heidi, lose strength in their limbs.

She continued her job as controller for Lucas & Lewellen​, fretting about news of her terminal disease affecting the company while it was in growth mode. But the upstairs office on Copenhagen Drive in Solvang was difficult to access, so she ended up working at home before quitting altogether once her replacement was named.

After the Swiacki family moved to Solvang, Heidi started her own bookkeeping company helping start-up wineries set up their accounting systems and procedures. Click to view larger
After the Swiacki family moved to Solvang, Heidi started her own bookkeeping company helping start-up wineries set up their accounting systems and procedures. (Swiacki family file photo)

Heidi started her blog in 2011, with many posts geared to helping people with ALS or PALS (Peopel with ALS).

“You will be in shock and you will be angry,” she wrote in March 2012, after learning of her diagnosis. “You have just learned that you have an incurable disease that will piece by piece take your body away from you, eventually leaving you paralyzed and mute.

“It affects everyone you know. On the bright side, it does not affect your brain, you retain body sensation and feeling, there is no pain, except pain from overcompensating, and your eyes still work. You still can make a difference in the world and you gain a new appreciation for life.”

The blogs offers tips for getting needed beds, walking aids, wheelchairs, toilets and more.

She also reserved a post for the women who were her caretakers.

“I trust each one with my life, I have to,” she wrote in October 2012. “That was a very humbling hurdle for me.”

Heidi praised both women now accused of conspiring to give her a toxic level of drugs and tamper with the ventilator, leading to her death by asphyxiation on March 25, 2013.

“When we go to see a doctor, they ALWAYS say how lucky I am to be with her,” she wrote. “I am truly blessed to have a friend like her. Wanda has blessed my life with her caring, empathy and patience.”

Despite then being 86 years old, her mother “has the spirit of 40 and the energy of 60,” Heidi continued.

Good received daily reports from caregivers and kept the house in order.

Heidi Good Swiacki out for a “roll” with her mother, Marjorie Good, left, and her caregiver, Wanda Nelson, the two women who eventually would be charged with her murder. In a 2012 blog post, Heidi praised the pair. “I trust each one with my life, I have to,” she wrote. “That was a very humbling hurdle for me.” Good and Nelson have entered not-guilty pleas and are to stand trial in November. Click to view larger
Heidi Good Swiacki out for a “roll” with her mother, Marjorie Good, left, and her caregiver, Wanda Nelson, the two women who eventually would be charged with her murder. In a 2012 blog post, Heidi praised the pair. “I trust each one with my life, I have to,” she wrote. “That was a very humbling hurdle for me.” Good and Nelson have entered not-guilty pleas and are to stand trial in November. (Swiacki family file photo)

“She is Wanda’s wing man when we go on outings,” she wrote. “It’s difficult to live with your mother, most difficult for Steve. But we make it through. It’s nice to have her here.”

In all, Heidi’s care cost $100,000 annually.

Later, caretakers would tell grand jurors, Heidi intended to tell her mother she had to move out of the house after the woman allegedly slapped her grandson.

And Nelson had complained to other caretakers about financial problems regarding taxes she hadn’t paid to the Internal Revenue Service since the family considered her an independent contractor.

Since his wife’s death, Swiacki continued periodic blog posts, many aimed at helping other families of people living with ALS.

About caregivers, he wrote, they had no experience in the topic before Heidi needed them.

Most, if not all, of your 24-hour-per-day expenses caregivers will be out of pocket, Stephen advised, explaining that the responsibilities otherwise fall on the spouse, children and adult parents.

Medicare and MediCal weren’t options since the caregivers provided were not trained in how to address the needs of a quadriplegic. One such caregiver ended up dropping Heidi, requiring a call to the Santa Barbara County Fire Department for help lifting her back into bed.

Still, Swiacki advised that once a caretaker is chosen, you’re “really rolling the dice on mental stability, honesty and integrity.”

In another post, he recalled writing advanced directives with Heidi to ensure her end-of-life wishes were followed.

Stephen Swiacki, in a contemplative moment during a memorial service for his wife, Heidi. “I can assure anyone who is reading this blog, Heidi had no desire to end her life, she had her bucket list and it was not completed,” he wrote on his wife’s blog after her death. “She was alive, smiling, laughing and could still light up the room with her wit. So please, don’t think Heidi wanted to end her life. She felt it was in God’s hands to take her when ready.” Click to view larger
Stephen Swiacki, in a contemplative moment during a memorial service for his wife, Heidi. “I can assure anyone who is reading this blog, Heidi had no desire to end her life, she had her bucket list and it was not completed,” he wrote on his wife’s blog after her death. “She was alive, smiling, laughing and could still light up the room with her wit. So please, don’t think Heidi wanted to end her life. She felt it was in God’s hands to take her when ready.” (Swiacki family file photo)

“You and I wrote ours together, we got it done but not without tears,” he wrote, noting mortality is not an easy subject at 48 years old.

The couple figured death would come as it does for most ALS patients, in the form of complications with her lungs.

The plan called for playing George Winston music, reading the Bible, and sharing stories with friends and family while holding Heidi’s hand.

“You wanted to donate your organs to science, as you thought the medical community could benefit and learn from a woman who beat the statistics (remember average lifespan of a PALS is 3-5 years),” he wrote. “You exceeded this by a ton. It was just like you to want to continue to give.

“It was unfortunate that the last people to see you alive disregarded your advanced directive.”

Instead of helping science, Heidi’s body became evidence in a homicide case.

Noozhawk North County editor Janene Scully can be reached at .(JavaScript must be enabled to view this email address). Follow Noozhawk on Twitter: @noozhawk, @NoozhawkNews and @NoozhawkBiz. Connect with Noozhawk on Facebook.

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