The family of Lonnie McIntosh made a commitment: to care for their husband and father in their family’s Denver home as long as possible. For 15 years after he suffered a stroke, and five years after his Alzheimer’s diagnosis, wife Jan and their four children cared for Lonnie at home until he passed away a year ago, just a week after his 75th birthday.
“Alzheimer’s is a frightening but interesting process,” said Jan. “We went through phases. Fortunately, our doctors at Kaiser Permanente referred us to the Alzheimer’s Association, and they immediately embraced us. That’s what saved us.”
With the onset of Alzheimer’s disease, Lonnie’s interactions with his family became more challenging, although son Justin noted that “it never got to the point where he didn’t recognize us.”
Besides Lonnie’s overall health, one of the major changes was his personality, which became more unpredictable. At times, the family feared for Jan’s safety as Lonnie struggled with paranoid thoughts and would become agitated and aggressive.
“This is what I call the dark days,” said Jan. “I didn’t know what to do. The kids worried about my safety. We didn’t know if we would be able to continue to have him safely at home.”
“As a caregiver, I tried to be conscious of how his dementia was affecting me,” said Justin. “You’re going through it with him and it can affect you in a negative way. You need to reframe from time to time.”
Justin recalls driving down the street, fresh from an interaction with his father, where he had to keep reminding himself: “stop being mad…stop being mad.”
Working as a team
The McIntosh family took the approach that they needed to operate as a team to care for one another as well as Lonnie.
“We would hold family meetings to get things out,” said daughter Kara. “We needed to exercise patience with dad and patience with each other. It’s important to not feel guilty for needing time away.”
The family also realized the importance of learning from the experience of others. While each case of Alzheimer’s is unique, the changes the individual experiences and the adjustments the family must eventually make have a common thread. Connections to support groups through the Alzheimer’s Association helped provide Jan and her children with contacts with other caregivers – people who understand and can relate to the challenges they faced.
“It was good to hear from people in the support group who were ahead of us in the process,” said Jan. “Scary, but good.”
Sharing their experience
With a year of perspective on their experience as caregivers, the McIntosh family is looking to re-engage in the Alzheimer’s community in order to help others who are facing the same challenges.
“We want to help other people better understand this disease,” said Kara.
One of the important lessons they want to share is that the person living with Alzheimer’s should continue to be an involved member of the family.
“People can function for a long time with this disease,” said Jan. “There’s still life to be lived.”
That life should include as much social engagement as possible, not just sitting and watching television, Justin believes. “There should be a sense of normalcy, not just frustration.”
Lonnie and his family were active participants in programs for people in the early stages of Alzheimer’s.
Another lesson learned is that even while the loved one is alive, there will be grieving. And the grief does not end when the person passes away.
“I was grieving for a long time before he was actually gone,” said Justin. “There’s some relief (when death does finally come), but we’re still grieving.”
The importance of an early diagnosis
Finally, the McIntosh’s believe that other families should understand the benefit of receiving an early diagnosis for their loved one. While it doesn’t change the inevitable, it helps the family prepare and take advantage of educational programs and services, such as those offered at no charge by the Alzheimer’s Association.
“An earlier diagnosis would have helped us be more on the ball,” said Kara.
To learn more about Alzheimer’s Association educational programs and services, go to www.alz.org/co or call the Association’s free 24-hour Helpline at 800-272-3900.