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Dementia: A life changer

As the Alzheimer’s disease began to progress, an elderly woman who lived alone forgot about her thermostat to heat her apartment. Instead she used the oven to heat her home. The oven also stored her hot pads.     This was a sign to her grown children, that it was time for mom to go into an assisted living home.     This was just one of the many stories shared one day in October when family members, caregivers, and anyone interested in memory loss, gathered in Willmar at St. Mary’s Catholic Church to gain a better understanding of dementia, what their loved ones are experiencing and how family and care givers can communicate better with their loved one and understand why challenging behaviors occur.     The newly organized West Central Dementia Awareness Network sponsored this event in order to increase awareness of the many resources available to caregivers and families who have a loved one with dementia. They are focusing on early diagnosis of the disease so families have more time to plan for the future. According to the Alzheimer’s Foundation of America, dementia is a general term that describes symptoms related to the loss of memory, judgment, language and complex motor skills that interfere with daily living.     Alzheimer’s disease is the most common form of dementia in persons age 65 and older. Other types of dementia are vascular dementia, Lewy body dementia and alcohol-related dementia.     Alzheimer’s, the seventh leading cause of death in the United States, can also strike people in their 30s, however, the percentage is small.     Early diagnosis is good as medications are available that can slow progression of the disease.     “I want to know if I have it so I can plan my future,” said Mary Bauer, the Director of the Western Minnesota Regional Center of the Alzheimer’s Association based in St. Cloud. She was the guest speaker at the event in October who spoke about communication and the challenging behaviors of Alzheimer’s.     “One of the most important things to remember (about Alzheimer’s) is that although your loved one’s ability to communicate may decline, their feelings and emotions do not,” she stressed. “We must pay attention to how we communicate – our tone of voice, body language, gestures, and facial expression.”     She shared many helpful tips when communicating to a person with dementia. Speak to the person by name. Identify yourself each time you visit with the loved one. Ask one question at a time. Avoid pronouns such as him, her, it, etc. Name the person or item. Speak slowly with a calm and gentle low-pitched voice. Maintain eye contact with the loved one. Don’t stand over them but go down to their level when speaking to them.     If the loved one becomes irritated, change the subject and begin to reminisce. Alzheimer patients are more aware of the past than the present. Low light has a calming effect.     She noted that music is a good therapy and many people with severe Alzheimer’s are still able to play the piano.     Mary said it’s important to identify behavior of the loved one and to know if its observable, how frequently does it happen and can others see it. Behavior of the loved one can be violent at times and, in some cases, they may harm themselves or others. Causes of their behavior may be caused by their surroundings, their physical health, depression, or tasks they are attempting to do.     Caregivers need to understand the cause of bad behavior by their loved one and try to find out what is the under lying feeling, when and where does it happen, what occurs before, and who is there. It’s important to know what triggers the behavior.     Caregivers and family members need to adapt by setting realistic goals and choosing alternative approaches. “Dementia can scare other family members,” she said, “and they don’t want to deal with it.”     The Alzheimer’s Association has a helpline is available 24/7 by calling 1-800-272-3900 or checking the website at, which is the Minnesota / North Dakota chapter.     “We have to remember that this is a person with a rich history,” Mary said. “It’s a tough journey and a long road.” Mary reminded the caregivers, that “the simple life is the good life” and the caregiver should try to simplify the life of their loved one.     She urged caregivers to take care of themselves. She promoted brain health by eating a healthy diet, exercising, and remaining active as we age. They also need to take a break from giving care as it can be very tiring and stressful.     The caregiver plays an important role and there are many resources available to assist the caregivers, a goal that the West Central Dementia Awareness Network is working to achieve.      A Caregiver Shares . . .     Diane Minke gave up her job as the attendance secretary at Willmar High School to become the primary caregiver for her mother, Irene Nelson, a life-long resident of Willmar who has had Alzheimer’s for about eight years.     The disease was actually diagnosed five years ago by a neurologist. Now at the age of 89, Irene has lived the past two years at Compassionate Cottage in Willmar, an assisted living home that offers 24-hour customized care.     Diane recalled the first major sign that her mother may have some form of dementia.     “Mom was the kitchen chairperson at her church for 30 years,” she said, “but one day she called me and told me that she didn’t know how to use the crock pot.”     Other signs noticed by Diane and her family included Irene repeating herself, misplacing things, and with all her experience in the kitchen, she was unable to follow a recipe.     Diane said her mother knew something was wrong. “When she found out that it was Alzheimer’s, she didn’t become alarmed or upset. I think she was relieved that she knew the reason. This wasn’t an early onset of the disease. She was in her 80s and had already lived a good life.”     That good life includes being one of the triplets born to Fred and Marie Carlson in 1920. The Carlson triplets, Ione, Inez and Irene, are one of the longest living set of triplets in the world. (A story on the sisters was published in 2006 of the Senior Perspective.)     After graduating from Willmar High School in 1939, all three girls worked in the same grocery store.  Irene married Myron Nelson in 1943. The couple owned a dairy farm on the south edge of Willmar and raised four daughters and one son.  She also has six grandchildren.     Irene helped with the farming operation, always had a large garden and the five children kept her very busy. She has a strong Christian faith and was very active in her church.     Myron died in 1984 and Irene lived alone in their home for 25 years until the symptoms of Alzheimer’s increased and she moved into Compassionate Cottage.     “When the spouse is still living, he or she can cover the early signs of Alzheimer’s of their spouse so that the children won’t notice,” said Diane, “but Mom was alone so we were the ones who first noticed.”     To help Irene’s family in the care of their mother, staff from Compassionate Care went to Irene’s home one hour per day which gradually increased to all day coverage when Irene moved into Compassionate Cottage two years ago.     Diane is the primary caregiver along with the Compassionate Cottage staff. She tries to visit her mother four days a week from noon to 4 p.m.     “I make plans for things for us to do like going out to lunch,” explained Diane, “but she can have good days and bad days. Some days she just wants to sleep and doesn’t want to go anywhere. So plans can always change. It’s just another challenge.”     Diane added that caregivers and family members also need to develop a good sense of humor, remembering the day she went to visit her mother at the Cottage and two of her sisters were also there.     “When I arrived, Mom told the Cottage staff that I was her adopted daughter,” Diane laughed, “and my sisters and I look very much alike, so we did have a good laugh.”     Remembering the past, and not the future, is symbolic with Alzheimer’s Diane noted, adding that that her mother talks a lot about her mother as if she was still living, but who actually died in the 1960s.     “One day the Cottage called me to say that mom was crying because she said my dad had just died, but he died 25 years ago,” said Diane. “She has no concept of time.”     Irene also talks a lot about going home, but which home?     “She talks about heaven and wants to go home and tells me that she’s ready to go,” Diane added. “But right now she is a very healthy woman except for the Alzheimer’s. She gets around with a walker, eats well and is a physically healthy woman. There is longevity in her family.”     Irene’s triplet sisters, Ione and Inez, are quite healthy along with other siblings, some of whom are now in their 90s.     Diane shared that there are two losses with a loved one who has the disease. First, she lost the mother she knows, and eventually she will lose the physical body of her mom. (See poem, Two Mothers Remembered.)     “So I encourage caregivers and family to enjoy the time they have with their loved one. There’s a lot of good information out there. You don’t have to be a primary caregiver. There are many fabulous agencies out there to help with respite care and to help make the journey with us. I can’t say enough about the staff of Compassionate Care and the Cottage for the love and support they have given Mom and us.”     Caregivers and families are also urged to join support groups and get as much information as they can about the disease.     Diane says that she has two very good friends who lost their mother to Alzheimer’s. They give Diane added support, knowing what he is going through. She said that everyone deals with Alzheimer’s differently and that is okay.     “I have my faith and I know some day that I will lose Mom, but she will go to heaven and no longer have the disease,” Diane concluded, with her voice breaking. “But I will see her again someday.”

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