(bottom row left to right) Lisa Bocchini, Kay Miller, Cindy Howley
(top row) Mark Miller, Randy Miller
“It’s been a journey,” said Cindy Howley, primary caregiver for her mom, Kay Miller, who has struggled with short term memory loss since early in 2000. “Life as a caregiver doesn’t stay the same. You need to know what ‘s out there for the next part of your journey.”
At the beginning of their journey, Cindy and her three siblings had little to no expertise in caregiving. They were all busy people with families and successful careers. Cindy worked for the Kohler Company as Manager of Stewardship and Associate Events, a job she describes as “full-time plus”. And yet because of proximity to her mother, she became lead caregiver for the family.
Kay, a widow, had lived at home alone since her husband died in 1996. It was important to the family to allow her to be independent for as long as possible. But safety was a concern. Cindy quickly realized that to be successful as a working caregiver, she would need to develop connections and find available resources within the caregiving community. A brief comment made to a co-worker led her to a geriatric care management organization that currently assists by taking Kay shopping once a week, making sure the food in the refrigerator isn’t dated, and provides transportation to doctors appointments and the pharmacy, and most importantly, is available to take on more responsibilities at a moment’s notice.
Last year, Cindy and her sister, Lisa Bocchini and brother, Randy Miller attended the Alzheimer’s Association Dementia Caregiver Conference in Sheboygan. “We all went to different seminars and came out equipped with actionable things we could do as caregivers,” said Cindy. “There are many things we learned about that can help Mom be successful.” One thing the family implemented was the purchase of a Presto machine. It is a printer that receives e-mails and attachments only from those who are authorized to send them. The caregivers and Randy share the responsibility of sending the daily plans to Kay so she has them first thing each morning. They learned that it is critical that she needs one place to look when not sure what is planned for her day. It also enables Mark Miller, who lives in Madison, to send messages and the care management organization to forward written communication to Kay as well.
Last year at the Dementia Caregiver Conference the family also learned about a program in Sheboygan Falls called Memory Matters. Kay now attends the program every Thursday where she enjoys memory strengthening activities including exercise, cooking, books, museum visits and guest speakers.
“When challenges arise, the primary caregiver gets the first call,” said Cindy. “I put out the fires, because I am nearby. But my brothers and sister all participate, communicate, and work closely together so mom’s needs are met. Most importantly, we utilize and trust outside resources.” Cindy is the first to tell you that the caregivers journey is continuously evolving. “We have now learned that in our community there are a lot of resources. Meals on Wheels. Lifeline. You can age in your own home. And for someone with Alzheimer’s disease – that is such a good thing.”