London mother given Home Care award
For Kazumi Alsemgeest, providing ’round the clock care to her children is just a part of parenting. However, on June 9, Kazumi received one of only four VHA Home Healthcare Heart of Home Care awards for the care she provides two of her three children suffering with Batten Disease.
Kazumi and her husband, David, have three children Rey, 8 Mei, 5 and Ken, 13. Their two youngest were both diagnosed with late infantile Batten Disease – a degenerative neurological disorder that is the most common form of Neuronal Ceroid Lipofuscinoses (NCL).
Children with Batten Disease eventually suffer from seizures, mental and physical impairments and loss of sight and motor skills. It is fatal.
On one side of the family’s living room is a large dining room table dominated by a computer, a care schedule and binders of nursing reports. The other side is occupied by a hospital bed.
Rey is home from school today, so Kazumi is kept busy with different tasks as the interview is conducted.
David sits in front of the computer, bringing up photos of the family and the award ceremony. He was the one initially nominated for the award by a nurse at the Kids Country Club in London. However, he suggested the nomination be transferred to Kazumi, who he noted is always 100 per cent focused on her children’s care.
“If you could see how dedicated she is to the children,” he said. “How at any given point in time she is thinking not only about the kids’ immediate needs but calculating their future needs for the next hour or the next week.”
David wrote a reply to VHA, but it was too late for the deadline. Still, the judges could not ignore their story or their dedication.
“We were just all immediately struck by the story,” said Pam Stoikopolous, Communications Manager at VHA Home Healthcare and one of the judges for the awards panel. “We had already made a decision on the winner but none of us could deny them the award. We basically gave out an extra because we couldn’t say no to their story and to the level of care they give to their children.”
David describes Batten Disease as a fast-acting Alzheimer’s that mainly affects children. Only a few people in a hundred thousand get the disease.
Both Rey and Mei are 100 per cent dependent on caregivers, and the Alsemgeests do as much as they can themselves. Kazumi asks the nurses who work in their home to teach her various procedures such as administering seizure medication or using suction or feeding tubes. It took a while for her comfort level to get where it needed to be, but she said it is all about giving her children the best quality of life possible. Routine, she said, is everything.
The entire family is involved in caring for Rey and Mei. The couple’s oldest son Ken, is also very much a part of caring for his siblings. While Rey is immobile, Mei still has the ability to crawl and use a walker, and is able to be fed.
“People think of quality of life differently,” Kazumi said. For her, it means taking Mei outside and seeing her smile, or seeing basic expression from Rey. Not only is the interaction good for the two children, but for Kazumi, David and Ken as well.
Though the award focuses on Kazumi’s dedicated support, she is quick to point out the family doesn’t do it alone.
“There are a lot of people involved in Rey and Mei’s care,” Kazumi said. “We shouldn’t forget everyone fighting with us.”
Home caregivers are the heart and soul of the healthcare system in Ontario, though their work is seldom recognized outside their homes. Stoikopolous said from VHA’s perspective, the Alsemgeest family all deserve recognition.
Still, as David puts it: “This story is as much a story about a family fighting against the odds to remain as much of a family as possible – thanks to Kazumi and her dedication to all.”