Jordan Jhaveri still remembers what it feels like to be enveloped in her father’s arms.
As a little girl, Jordan would wait for Dad to walk through the front door after work. She would run to him and give him a big hug, breathing in his cologne. He would pick her up and twirl her around in circles.
“There are still times that I would like that,” said Jordan, now 15.
“I miss having his arms around me.”
But after Akhil Jhaveri’s ALS diagnosis in July 2011, Jordan and Akhil’s roles reversed. Now, unable to walk or move his arms, it’s Akhil who’s waiting to greet his daughter when she walks through the door of their Ridgefield home at the end of the day.
But Jordan is still just as eager to see her dad.
Each afternoon, Jordan tells her dad about every detail of her day — the words on her spelling quiz, her teachers’ moods, the funny things her friends said, what she ate for lunch, cheerleading practice.
“I always love telling him about my life,” Jordan said.
While Jordan, the youngest of the three kids, hasn’t had trouble connecting with her dad, it hasn’t been as easy for middle daughter Corinne, 20.
“I don’t know what to say,” Corinne said. “I don’t know what we can do to bond.”
“I want to make memories, especially these last few years,” she said.
As a child, Corinne remembers the fun games Akhil would play with her and her sisters, Jordan and Ashley, now 22. One of their favorites was “Sockball,” a game Akhil invented to get the girls to fold laundry. When they had finished folding the shirts and pants, they sat around a mound of socks.
“Whoever made the most pairs — matched them and threw them into the basket — wins,” Ashley explained.
When the game was over, the girls took turns getting laundry basket rides. They would climb into the empty basket, and Akhil would hoist it up on his shoulder and parade the girls around the house.
Akhil’s fun-loving, never-grow-up personality meant the girls’ childhood was full of laughter.
When Corinne was 12 years old, Akhil took her to her first concert. During the show, Akhil joined the rest of the tweens and teens jumping in the mosh pit.
But that was Akhil, Corinne said. Always outgoing, always the center of attention, always acting goofy.
“We liked to go out, and he would always embarrass me because he would talk to strangers,” Corinne said.
During a family trip to Utah when Ashley was 10 years old, she was the one laughing at her dad’s expense.
As they trekked through the snow, Ashley discreetly formed a snowball and lobbed it at her dad’s back. The snowball broke apart and sent slushy snow down Akhil’s pants.
“I was so proud of myself,” Ashley said. “He said he would get me back, but he never did.”
Jordan prided herself on being daddy’s helper.
No matter the size of the household project, Jordan was right by Akhil’s side. And Akhil always praised Jordan for her help, even the time she broke several sponge brushes because she was pushing too hard while painting a door frame.
“I think he was pretty much the picture-perfect dad,” Jordan said.
But Jordan also feels like her childhood was cut short. She was just 11 years old when she learned her dad had ALS. Her sisters went away to college not long after the diagnosis, and her mom, Laura, launched her own dessert business to support the family.
Now, as a teenager, Jordan relies on friends for rides after school and on weekends. She plans activities around her dad and his caregiver’s schedule since he can’t be left alone. And she doesn’t often see her dad in the audience during violin recitals because traveling in the car is difficult for him.
“This disease has taken over my life, as well as my dad’s,” Jordan said.
Facing his fears
This summer, Akhil lost a comrade — “a fellow warrior in this battle against ALS” — to the disease that will likely claim his life as well. The friend was about the same age as Akhil, had been fighting as long and also was the father to three children.
“At the end, he suffered daily and was not able to breathe, which is how he died. It is similar to drowning,” Akhil wrote on his blog, Me and ALS. “I understand that reality, but it is difficult to expect that as my future. It is scary and I am afraid. I find myself wanting to be done with this fight. I have to hold on to hope otherwise I will fall into depression.”
During a July visit with his neurologist, Akhil asked how much more his health would decline before his life ended. She told Akhil he’s already weathering the worst of it.
I laugh at all this stuff because it’s amazing how well I’m doing while I’m falling apart. Akhil Jhaveri
“I was very encouraged because I’m dealing with it, and now I’m getting good at it,” Akhil said.
Still, Akhil has noticed changes in his health in the year since complications from a cold nearly claimed his life.
His neck has weakened, making it more difficult to keep his head up. He also seems to be overproducing saliva, meaning he needs someone to suction the liquid in his mouth more often to keep him from choking and prevent it from getting into his lungs.
“I laugh at all this stuff because it’s amazing how well I’m doing while I’m falling apart,” Akhil said.
His family notices the changes, too.
Months may pass between Ashley’s and Corinne’s visits home from college. When they visit, they often struggle to understand their dad the first few days. They have to get used to his speech again and concentrate on what he’s trying to say.
Because Jordan sees her dad everyday, she doesn’t notice the disease’s progression. And she prefers to not see it — or think about it.
“It’s been hard,” she said. “It’s like watching someone you love so much, their condition just fall apart.”
For Laura, watching Akhil’s deterioration — seeing her strong, charismatic husband turn into someone who needs constant care — has been difficult. But seeing the impact the illness has had on their daughters has been the toughest.
Not long ago, Corinne made a comment that struck Laura. Corinne was putting shoes on Akhil.
“She said, ‘Dad, this isn’t how it’s supposed to be. You helped me put my shoes on,’ ” Laura said, tears welling in her eyes. “That’s probably been the hardest.”
But the disease has also been the best thing that’s ever happened to them, Ashley said.
“I was really stuck on small things,” she explained. “Now that we’re living in this place where we face death every day, it makes you wonder what you’re doing and why.”
“I also feel like people don’t appreciate their parents enough,”she added.
When friends complain about their parents, Ashley wishes she could tell them to spend two days in her shoes. Then, she said, they would value what they have.
“Before my dad got sick, I think I was one of those people,” Ashley said. “I took it for granted.”
“You can’t ever get back to that place,” she said.
A father’s wish
While the disease has changed the family, it hasn’t changed Akhil’s hopes for his three daughters.
“I want the same thing for them that I’ve always wanted for them,” he said. “I want them to be able to help other people and, in doing so, to have a happy life, like mine. Because I really enjoy helping others, and my children need that.”
Akhil has always told his daughters that they should be the type of people to make others happier to have known them. As he thinks about the people and the life he will leave behind, Akhil hopes others will say the same about him.
“I want to be an awesome memory,” Akhil said.
I want my story to be one of strength and perseverance. Akhil Jhaveri
“I want to make people smile when they think of me,” he said. “That’s a wonderful thing to leave behind.”
But more than that, he wants people to remember how he and his family faced ALS head on. How they banded together. How they grew closer. How they lived every moment.
“I want my story to be one of strength and perseverance,” Akhil said. “We are showing the world how we triumph over tragedy.”
Hospice care about more than the end of a life
It focuses on quality of life and helping patients live their final days as they choose
Akhil Jhaveri enrolled in hospice care after complications from a cold nearly claimed his life last December.
Akhil, 49, was diagnosed with ALS in July 2011. When he was hospitalized late last year, doctors told him he didn’t have much time left.
Though Akhil recovered, his health had declined.
For Akhil’s wife, Laura, the decision to accept hospice care was an easy one.
“I think it’s a misconception that once you enter hospice, you’re knocking on death’s door,” she said. “I welcomed the support and the help.”
“When you’re in this kind of situation, you need all of the help and support you can get,” she added.
Hospice is medical, emotional and spiritual care provided to people in the final stages of a life-threatening illness. The focus of hospice care is on quality of life and ensuring that patients live their final days as they choose.
“It used to be that hospice care was just about the end of life,” said Sue Curry, nurse manager at Hospice Southwest in Vancouver. “But now, it’s so much more.”
What is ALS?
ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. The disease causes nerve cells to gradually break down and die, leading people with ALS to lose the ability to control the muscles needed to move, speak, eat and breathe. There is no cure.
Hospice care is provided by a team that may include registered nurses, medical social workers, dietitians, physical therapists, bath aides, chaplains and volunteers. Hospice care also encompasses the family, Curry said.
And hospice care is provided in a variety of places, including patients’ homes, nursing homes, foster homes and hospice centers, she said.
For Akhil, hospice care includes weekly visits from a nurse, who manages his pain and keeps him comfortable, and a bath aide, who performs hygiene tasks, such as shaving Akhil’s face or filing his nails. A chaplain also visits Akhil to talk about scripture, to answer questions and to pray. And a social worker has met with Laura and their three daughters to offer support and grief counseling.
Under Medicare requirements — the insurance coverage for the majority of hospice patients — hospice is considered appropriate when a doctor certifies that a patient is within six months of the end of life if the disease follows the normal course, Curry said. The average amount of time a person spends in hospice care is 40 days, she said.
If a patient lives longer than six months, he or she is not automatically removed from hospice care. Medicare only requires a steady decline — no matter how slow it may be — for a person to remain on hospice care, Curry said.
Curry once had a patient who spent three years in hospice care before dying. That patient’s health was up and down. But the upswing after each downturn was always a little less “up” than the time before, she said.
“Just because hospice is mentioned, it doesn’t mean you will die right now,” said Linda Shill, Akhil’s hospice nurse. “It means you have a disease that will ultimately take your life.”
Shill reminds her patients that they don’t have to lie in bed and wait for death. They can enjoy the living they have left.
“Just because (you’re) going to die, that doesn’t mean today,” she said.
Marissa Harshman: 360-735-4546; firstname.lastname@example.org; twitter.com/MarissaHarshman