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Struggles of dementia documented in book

Most of us know someone who has either had dementia or a caretaker for a person with dementia. But most of us probably don’t know what goes on behind the scenes of a family dealing with the lifestyle changes dementia means for both the patient and the family caring for the patient. The curtains covering what happens are pulled back in the book “Dad’s Last Hunt” by Sharon and Mike Larson, wife and son of Donald Larson, whose six-year journey through dementia covered by the book ended February 25, 2011. The story leads one through the glimpses of hope and the incidents of despair that one experiences in watching a loved one cease being the person that one previously knew and loved. The book project comes from journals kept by Sharon and Mike Larson as they dealt with Donny’s gradual slide deeper into dementia. “It was a work in progress for a long time,” said Sharon Larson of the book. “We’ve known people who have had to deal with this but we didn’t know what was going on in their homes. It is happening in many homes.” “We didn’t write it for self pity, we wrote it to help other people,” she said. “It is important to know that you are not alone as you deal with this.” And, at the end, the book offers suggestions to those starting their own walks down this path in terms of what to do and how to prepare. Sharon Larson spent her career as a nurse and served as Director of Nurses at Glacial Ridge Hospital so she knows a little about medicine, and found it both helpful and frightening as she worked to care for her husband. The book opens with Mike’s story about the last hunting trip, a trip to Wyoming in the fall of 2005, a trip Donny was getting nervous about. For a couple of years he had been experiencing irrational behavior and various tests were showing changes in the frontal lobes of his brain. Since Donny’s father had died from Alzheimer’s, which affects the temporal or side lobes, there were concerns about what was happening. It was the mood swings that were of the most concern to family, the occasional memory lapses were easier things to deal with. Efforts were made to control the mood swings with various medications, some of which worked better than others. The chapter starting August 2006 begins: “We were in Rochester again, August 2 and 3, and, as of yet, no written report,” she wrote. “They discontinued the Namenda.  Apparently it’s not doing any good.  They started Donny on Seroquel 25 mg three times a day for his mood swings. After two doses he was like a zombie, so I stopped it. Now, when he gets very agitated, I give him one and a half hour later he is ready for a nap. The doctors at Mayo could see deterioration of his mental ability. “They also told him he should not drive any more.  Although I was concerned about he’s going to take that news, it has been going better than I thought it would,” she wrote. Six months later, after a continual slide in his ability to care for himself or for Sharon to care for him, Donny was placed in a facility in the Meeker County Hospital in Litchfield in April and for several months kind of bounced around different facilities. His irrational behavior made him a patient that tested the resources of various facilities. In June of 2007 Donny suffered a grand mal seizure in Litchfield and it was thought he might have suffered a massive stroke. However, later that day he was able to walk around. Sharon was having trouble finding places that would care for him because of his history of violence but the grand mal seizure seemed to solve that. After a stint in a nursing home in Cosmos, she was able to get him into Glenwood Retirement Village, which was much closer to home. Having Donny so far away had made it a strain for regular visits. At Glenwood Retirement Village she now had the issue of how to deal with Donny’s mother, who was also a resident of Glenwood Retirement Village. There were questions of what to tell his mother and when and what his mother’s reaction might be. They had kept the true nature of Donny’s illness from her in their regular visits with her. The two lived under the same roof but were kept separate for a week or so and then they decided to tell Donny’s mother. When told she accepted the news as well as might be expected. In June of 2009, Donny’s mother died. In January of 2010 Sharon wrote: “It’s been two and a half years since Donny has been in GRV and going on three years since he has been in my home. When reading over my past notes, we are not facing the acute problems that we had in 2007. I would hate to go through anything like that again. It’s still difficult, but in a different way. I’m back on antidepressants.” “When people ask about him I tell them he’s ‘just there,’” and is unable to walk, talk or feed himself.” Late in 2010 Sharon and Donny should have shared their 50th wedding anniversary. Their children arranged a social event for Sharon with friends at which the anniversary was not mentioned. In February 2011 Donny threw up after breakfast one morning. He was apparently suffering from internal bleeding. Efforts were made to keep him comfortable that day. She went home that night. A nurse, Sharon wrote in her journal, “Soon after I arrived in the morning I knew this was the day he would die.” “When he actually died, I felt a profound sense of peace come over me. This past Sunday I’d heard a sermon about having mountain moments – times when you know God is present. Donny’s death was a mountain moment for me. We had all said our goodbyes and he, too, was at peace at last.” The book concludes with some detailed advice based on their experiences. For example, the importance of things like long-term care insurance and the importance of getting a lawyer experienced with long-term, terminal health issues involved. It also points out some resources for families and the importance of taking advantage of those resources. “It is hard to ask for help,” said Larson. But she remembers clearly the importance of those who offered to help by taking Donny for rides in the country when he was able to do so. She also points out the importance of taking good notes. Often it is hard to talk with a doctor with the patient present so she recommends taking notes and writing down behavior patterns to give to the doctor during a visit. And she learned to really appreciate general practice physicians. Visiting a variety of specialists can get to be confusing, even for a person with medical training. “They (the general practice physicians) can pull it all together,” she said. The book is available through Amazon books. It is also available from Larson through email at for $13.35, which includes postage and handling. People may also write her at 24327 County Road 24, Glenwood, MN 56334.

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