We Are Caregivers Too: Meet Nancy

“She was just sobbing. She walked down the hall of her nursing home and told every nurse and patient ‘my husband has died… did you know my husband died?’” remembers Nancy.

Nancy and her brother had just told their mother that their father and her husband had died. Nancy's mother had been diagnosed with Alzheimer's Disease five years ago, and her husband had been the primary caregiver for almost four years. But in September 2011 he fell ill and within four months Nancy lost him to renal failure.

Nancy and her brother stayed in their mother’s room as she grieved with the staff and patients in her nursing home.

“I just couldn’t stop crying. I lost that comfort of my parents. No matter how old you are it’s hard. You’re always a child and they’re always a parent.”

Nancy is not a weak woman. She is a nurse, a care coordinator at Long Term Solutions, a caregiver, a mother, a competitive sailor, and, up until recently, was legally blind. She was born with ocular albinism with nystagmus, a genetic condition which results in impaired vision. In September 2007, Nancy’s vision had unexpectedly decreased significantly, and she found herself at the Carroll Center for the Blind.

While at the Carroll Center, Nancy found her passion in competitive sailing with the SailBlind team. She went on to sail in the Blind Nationals, winning two first place titles and a second place title with the team. She recently competed with the team in California, and she was able to travel to New Zealand as an alternate with the team, which is commemorated on her leg in the form of a tattoo.

She learned to live with her vision impairments for three years, until she received a life altering surgery on December 10, 2010. Following the surgery, her vision drastically increased. She was able to read, see colors and see during the day. However, she is still unable to drive or see at night, and can only get around with the help of Giggs, her service dog. During all of this, Nancy became a caregiver, and her journey into caregiving began with her mother, who was diagnosed with Alzheimer’s Disease.

“She was first diagnosed five years ago, maybe it was longer. It just seems like all of a sudden she progressed. She’s young. She’s only 81,” she said.

At first, her father assumed the role of primary caregiver. He was a cancer survivor with one kidney, but he was strong and able to care for Nancy’s mother. Her mother suffered from confusion, she would wander, and she couldn’t be left alone. Her father assumed all of those responsibilities and more. He would pick out her outfits, make her meals, and he was always by her side. He made it possible for them to stay in their home, which was where her mother felt most comfortable.

This all changed in September 2011. Nancy was visiting when her father began complaining of chest pain. Nancy checked his vitals. He was quickly decreasing. She called 911, and her father was hospitalized for a possible cardiac issue. Since her father had been the primary caregiver, Nancy and her siblings weren’t completely prepared to take care of their mother, so they enrolled her into respite care at a local nursing home.

“After that, he was discharged to home. He didn’t do too well. We think it might have been the separation,” explained Nancy.

It wasn’t long before her father fell ill again. On Thanksgiving, Nancy received another call from her father. He was extremely confused and disoriented. He didn’t know where he was, and Nancy couldn’t understand what he was saying. She knew something was very wrong, so she immediately called her sister on another line and then 911 to send an ambulance to her father.

“I was sobbing out loud. I just couldn’t help it. He had been so healthy and so strong,” she said.

He was brought to the hospital again. In an effort to help her father recover, Nancy and her siblings decided to transfer him into the nursing home to be with her mother.

“He was separated from my mom, and the love of his life. As difficult as it was for him to be the caregiver, when they were apart for that short time, he gave up on his own life,” explained Nancy.

On December 9, 2011 Nancy received seven calls from her father in the middle of the night because he was in a lot of pain, so on December 10, 2011 she drove out to the nursing home. The first thing she did was request his health information, and, a year after her surgery allowed her to read, she read that her father was in renal failure.

“I called my brothers and sisters and said he’s going back home. They said ‘what are you talking about? We’ll get him home for Christmas.’ And I said, ‘he’s not going to make it to the first of the year’,” explained Nancy.

Nancy’s father refused to be transported to the emergency room for treatment, so Nancy tried calling multiple nephrologists to see if they could begin dialysis immediately. Neither of those worked, so Nancy and her sister watched as her father signed his own DNR order. The next day, he went home on hospice.

“It was the wonderful support of my peers, managers and the owners of Long Term Solutions that gave me the strength to keep going,” explained Nancy.

Nancy stayed with her daughter, and she commuted to work from her home town daily. Due to her vision impairment, she couldn’t drive in the dark. With the short winter days, she would leave her daughter’s home at 6:00 a.m., and, with the encouragement of her manager and peers, leave work in the afternoon to drive back to her father.

“They were so good to me. They really cared. Every morning I would wake up and I would have a message from my manager asking how things were going. I would call her back, and I just couldn’t control my crying,” said Nancy.

Nancy’s last day with her father was on December 29, 2011. Nancy went in to see her father at 5:00 p.m. on that day, and then went to meet her sisters for some dinner.

“I went back to be with him. I walked in the door, looked at him and thought ‘he’s going to die right now.’”
Nancy’s service dog, Giggs, ran under her father’s bed, while Nancy held her father as he took his last couple of breaths.

Nancy watched as her father, who was the primary caregiver for her mother, passed away.

In order to pay for their mother’s care, Nancy and her siblings had to sell their childhood home. It took them weeks to sort through everything, from the pins that her mother used to wear to German Hummel dolls her father had purchased for their mother.

“I wish I could bring her home to me, but I know it’s impossible. It’s so hard because I know I can’t see her for a while because I can’t drive there. I just don’t know when I can drive there.”