If life is a journey then Alzheimer’s is the cruelest path of all. Just ask Jean Schuelke and her daughter, Diane Vanlandingham.
Don Schuelke, Jean’s husband and Diane’s father, was an outgoing and very much loved community figure before he passed away from Alzheimer’s Disease two years ago. He was born and raised in Rhinelander and served as a teacher and eventually the principal of Rhinelander High School for many years. And he was loved by all. “He was the outgoing one in the family,” said Jean. “I don’t think he ever had an enemy. Everyone liked and respected Don.”
After retiring in 1989, Don and Jean settled into Edgewater Homes Park and traveled to Arizona every winter for a few months. They led an active and fun-filled social life with many friends. “Don had a lot of interests,” said Jean. “People were just naturally drawn to him.”
And then in 2004 Don started noticing that he was forgetting things. Alzheimer’s Disease was his worst fear because his mother and sister, both died from it. “Don realized his family history and we were lucky in that he wanted to get tested,” Jean said. “He really diagnosed himself.”
In 2005 Don was officially tested and his worst fear was realized. Thinking only of his family and the rough road he knew was ahead, he worked diligently to make arrangements while he could. The family visited a lawyer to get wills and final arrangements in place. “That was really a smart move,” said Diane. “It was so much easier in the end. There was no guessing, we all knew what he wanted.”
After the initial shock of Don’s diagnosis the family settled in to make the most of his good days. One of Don’s hobbies was riding his motorcycle and that proved to be a challenge, and a big worry, soon enough. “I was afraid he would drive off and forget how to get home,” said Jean. “But it wasn’t easy convincing him of that.”
Finally Don agreed to be tested on his ability to drive but he flunked the test. Diane chuckles wryly. “When we were walking out he turned to me and told me he could pass the driving test if he could try it one more time,” she said. “He was willing to give it another try but I know giving up that freedom was a blow.”
Jean and Diane soon realized that talking to others who had traveled down this path was beneficial so they joined a support group sponsored by the Alzheimer’s Association that allowed both caregivers and Alzheimer’s patients to participate. “Dad found a lot of comfort in these sessions,” said Diane. “He looked forward to attending these meetings and so did we.”
As the disease progressed the family adjusted but each step was difficult. “We used to go to church and then out for breakfast,” said Jean. “Don loved to go to high school basketball games but he eventually decided he didn’t want to do that either. It was a gradual thing but as time passed Don just didn’t want to do as much.”
And yet this kind and thoughtful man was always thinking of others. “When he did go out he always had a smile on,” said Diane. “I think lots of times he didn’t remember someone but he never let them know. He put on a good front.”
But it soon became apparent that caring for Don was taking its toll on Jean. “Caregivers also suffer,” said Diane and Jean agrees. “Some days Don wouldn’t talk to me about it. He would just shut down.”
Once again, the family turned to the local Alzheimer Association affiliate in Rhinelander for help. “I don’t know what we would have done without them,” said Diane. “I was so grateful that we could turn to them with questions.”
They were put in touch with a caregiver who would come in a few hours a week and give Jean and Diane a break. “At first I wasn’t sure, I felt sort of guilty leaving Don,” said Jean. “But once I got out I knew how important it was that I get away once in a while. It was better for me and better for Don.”
That fact also taught Diane a lesson. “If you have a loved one or friend suffering with this disease don’t wait for them to ask for help,” she said. “I would often go over and sit with my dad so mom could get out. Now I look back on that and I’m glad I did it. It was special spending time with Dad like that.”
Things came to a head one day when Jean called Diane very upset. “He woke up one morning and didn’t know me,” said Jean. “I just couldn’t take it.” So the family decided maybe what would be best would be to find a place they where there was care available 24 hours a day.
Milestone Living provided just what the family was looking for, but Jean did not let Don go alone. “We had a double room and so we moved in there together,” she said. A few months after that Don came down with pneumonia. He was hospitalized and a few days later suffered a heart attack. Eventually he succumbed to his illnesses.
These days Jean and Diane still find comfort in seeing the friends they made while Don was ill, especially those affiliated with the Alzheimer’s Association. In fact next Saturday, May 19, they are looking forward to attending the 10th annual Memories and Melodies fundraising event that will be held at the Northwoods Banquet Center from 4 to 10 p.m. “We have gone for the last couple of years and really have fun,” said Jean. “And I feel good about being able to raise money for this organization. They are there when people really need them.”
It will be two years next month since Don has passed, and for Jean and Diane there is a definite void in life. But the haze of grief is lifting and in the end they can look back with fond memories of Don’s fun loving spirit and his way with people.
“You can stay stuck or move forward,” said Diane. “Dad wasn’t one to stay stuck, and I know he wouldn’t want us to be either.”
Editor’s note: For more information or to register for the Memories and Melodies fundraising event, call (715) 362-7779. You can also register online at org/gwwi, and then click on “special events.” To contact the Alzheimer’s Association call (800) 272-3900.