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Thursday, May 5, 2016

It's a long goodbye for victims and families

Thursday, January 15, 2009

Many people have experienced some sort of lapse in memory. Forgetting the keys in the car or where the car is parked in a crowded parking lot are some common things to forget. Other times it's forgetting where one has placed things.

Most of the time, people blame their forgetfulness on old age or being distracted, but when people forget special memories, what they said two or three minutes ago, or even close family members and friends, that's when those around them start wondering if something is wrong.

These last few examples are some signs that a person might be suffering from Alzheimer's disease. The disease is often scarey both for the people suffering from it and for their loved ones who have to watch the psychological pain they are going through.

Elwin Kern, of Salem, wrote a piece for the Dec. 18 issue of The News titled, "I know you -- you are Love." Elwin visits his wife, Jeanne, in the Southfork River Therapy and Living Center about every day.

Jeanne barely recognizes her husband of 58 years, now. She was diagnosed with Alzheimer's about six years ago, according to her husband. Elwin said Jeanne's doctor believes she is in the final stage of the disease. "Most of the time, she doesn't know me," Elwin said. "I have a son that goes to see her, and it's getting harder and harder for him because she doesn't recognize him."

After Elwin retired in 2000, the couple moved from Las Vegas, Nev., to Glencoe and then to Salem four years ago. Elwin said he and Jeanne planned on traveling the beautiful country in Arkansas, but all their plans changed when Jeanne started forgetting things.

"Just before we moved out here, (Jeanne) started having problems remembering things," Elwin said. "We thought, well, you know we're 70-years-old, we're just forgetting things. But after we got here, we moved here, and started going to see Dr. (Griffin) Arnold and telling him the various things, we realized that it had been going on before we even moved out here and we just didn't realize it."

The decline of Jeanne's mental health has taken a toll on both of them. "You can't get very far away from the subject of love when you are dealing with a wife of 58 years who, now, rarely even recognizes you," Elwin wrote in his article for The News.

"We (Dr. Arnold and Elwin) really knew that it was Alzheimer's and not just forgetfulness (when) she started forgetting. She'd always been such a great cook, and she would forget ingredients and she'd forget the time to put something on, and Dr. Arnold told me, he said, 'Well, I tell you what, the most complicated thing, mentally, that a woman has to do is prepare a meal because when you stop and think about all the ingredients, the timing to put it together (and) all the preparing. You wouldn't think that (but) that'll be the place that you'll notice (Alzheimer's) really, really firmly,' and it was," Elwin said. "Also, about the same time, she lost interest in cooking, which was also another indication."

According to Alzheimer's Disease Research, a program of the American Health Assistance Foundation, "An estimated 5 million Americans are thought to have Alzheimer's disease, and as our population ages, the numbers will continue to grow at an alarming rate."

"Alzheimer's disease is a progressive, incurable and terminal disorder in which beta amyloid protein plaques and tau protein tangles in the brain, disrupt nerve cell communication and, eventually, lead to cell death. Those with the disease lose their mental ability to remember, communicate and reason," according to Alzheimer's Disease Research.

Alzheimer's disease is a form of dementia where age and genetics are some known risk factors. Other forms of dementia include Mild Cognitive Impairment, which could worsen and lead to Alzheimer's, and vascular dementia, which is caused by blood vessel blockage.

Though Alzheimer's and any other form of dementia can be frightening for anyone suffering from it, it often has negative affects on caregivers as well. "Caregivers suffer from depression, grief over loss of the person they once knew, stress and isolation," according to Alzheimer's Disease Research.

"Gradually, it (Jeanne's Alzheimer's symptoms) got more and more pronounced (and) one thing led to another," Elwin said. "He (Dr. Arnold) tried to get me to put her in a home two years before I did (put her in a nursing home). She's been there four years now. It got to the place where I just couldn't take care of her. For one thing, I didn't know how to cook and I couldn't prepare her meals for her. She also has diabetes, so she was having trouble getting around. She still wanted to do things. She wanted to go to the grocery store. She still wanted to do things like that, naturally, and it was so hard for her to get up and down steps and do things that you have to do. I tried to explain that to her and she couldn't understand. She couldn't understand why she couldn't keep doing these things. So, it (putting her in a nursing home) was the hardest thing that I have ever done in my life, the hardest decision I have ever had to make, because I had to lie to her and I always told her that I would not lie to her."

Elwin said the lie began when he and Dr. Arnold decided to tell her to just try out the nursing home for a while to see how things go. "I just couldn't tell her, 'I'm going to take you down there and leave you,'" Elwin said.

Sometimes, Jeanne's abusive childhood would come back to haunt her. At times, Elwin said, Jeanne was aggressive at the nursing home but there were always kind caregivers around to calm her down. Elwin said, he did know that his wife was abused as a child but he didn't know the extent of the abuse. He said he was afraid to question her about it because he thought that questioning her would hurt her more. After Jeanne graduated from high school, Elwin said, she left home and never went back.

"She was there (at the nursing home) for probably three months," Elwin said. "Every day she was asking me, 'When am I going home?' 'Well, as soon as the doctor releases you,' I'd say. '(The doctor) feels like you need more attention than I can give you. You know I can't cook.' (She'd say), 'Well, I can get along,' and I knew she couldn't because she just couldn't stand at the cabinet long enough to do that."

Feeling some level of guilt and a need to take care of his wife, Elwin said, he tried to bring her home after she had stayed at the nursing home for some time. "It was a mistake," Elwin said. "(The doctor) told me it would be a mistake and all the nurses told me it would be a mistake, but I just had to try it. We came home and she didn't even recognize the home as we drove up the driveway and we came up the steps and she had trouble getting up the steps and she came in and sat down and she said, 'Well, I don't really know where I am,' and I said, 'Well, this is your home.' She just couldn't remember, so I took her back. (It was) really, really hard to do."

After a while of living at the nursing home, Elwin said, Jeanne began to settle in and she no longer asks when she is going home. Elwin said when the Southfork River Therapy and Living Center moved to its more luxurious home, Jeanne acted like the couple was just getting a new home and moving. "She really liked it. Of course the new one is so nice, and she kind of equated that with us getting a new home and I just went right along with that," Elwin said.

Elwin praises the nursing home for all of its help and for all the caring employees. "They treat the people like they're their own family," Elwin said. "It (the type of treatment the employees give to patients) is above and beyond their job."

Elwin had some advice for caregivers or family members, based on his own experience, to cope with a loved one suffering from Alzheimer's. "Extreme patience, patience beyond all you can muster, because what they do and say, that's going to hurt you, they don't know. They don't have any idea, like her (Jeanne), she's always been such a kind and gentle person," Elwin said. "Of course, she's so different now."

"It's easy to make yourself believe that it's just old age," Elwin said. "The earlier, they can admit (it's something more), and at least go and get it diagnosed, the better chances they are going to have (of keeping their memories longer)."

"I noticed on the Internet, I've kind of become an Internet nut, that 91 percent of caregivers are depressed," Elwin said. "Then, I made my own note -- then comes the guilt. The guilt that you could've done something or maybe you did do something to bring this on and that's hard to deal with. It's really hard to deal with." There are many Web sites, support groups and Area Agencies on Aging that advise caregivers and family members to give themselves a break when taking care of a loved one, which includes letting go of the guilt.

There are many ways to help a loved one who is suffering from Alzheimer's in the early stages. Home Instead Senior Care's Web site, www.homeinstead.com, offers a list of suggestions to help caregivers keep their loved one around for a longer period of time. The list is in an article written by Joy Glenner, who is the president and founder of the George G. Glenner Alzheimer's Family Centers Inc. The article is called "Helping Families Cope: an Alzheimer's Resource Guide for Family Caregivers." The suggestions include:

* Limit choices -- Having fewer options makes deciding easier. Whether it is laying out clothes for dressing or choosing between coffee and tea, it is important to limit choices for easier decision-making. Reducing distractions also helps a person with Alzheimer's disease focus on one thing at a time.

* Involve your loved one as much as possible -- Set up successful accomplishments each day that allow your loved one to do tasks he or she is still able to do. This may require some cueing, prompting and patience. For example, you can place an electric razor or a hairbrush in your loved one's hand and use verbal cues such as "shave your face," or "brush your hair."

* Allow more time -- Keep in mind that everything takes more time when your loved one has Alzheimer's disease. Providing simple one-step instructions and allowing more time to perform a task may be necessary.

* Plan your loved one's schedule wisely -- Determine what time of the day your loved one functions the best and is the most agreeable. Schedule the most difficult tasks -- such as bathing or doctor's appointments -- during this time period.

* Establish a routine -- Routines make the day less confusing for a person with Alzheimer's disease. Develop a daily schedule and keep to it.

* Maintain flexibility -- A person's ability to function and his or her level of independence steadily declines as the disease progresses. As this occurs, it becomes even more important for you to be flexible and adapt daily routines as necessary.

* Relax your standards -- As a family caregiver, you shouldn't worry about the way things should be done. Allow you loved one to do as much as possible with the least amount of confusion and assistance. For example, if dad or mom insists on wearing the same clothing every day, buy a few identical pieces so laundry does not become an issue, and he or she can remain clean and groomed. Bathing every day may not be necessary if it upsets your loved one. Sponge baths between showers or tub baths can eliminate hygiene issues and any added stress.

* Maintain a safe environment -- Alzheimer's disease impairs good judgment and increases the risk of falls or injury. You need to safety-proof your loved one's home environment. Here are some recommendations:

* Avoid throw rugs and extension cords anywhere the person walks (to avoid falling).

* Install handrails on stairs and in bathrooms near the tub and toilet.

* Use bathroom equipment, such as a shower bench, raised toilet seat and a hand-held shower.

* Install locks where you store medicines, including over-the-counter products.

* If your loved one smokes, keep matches secure and do not allow him or her to smoke alone.

* Keep smoke detectors operational and maintain a fire extinguisher.

* Hide hats and coats from loved ones who may wander.

* Lower the bed to reduce the risk of falling and injury during the night.

* Use nightlights throughout the home, especially for someone who is restless or wanders at night.

Elwin had one more piece of advice to husbands who fear losing their wives to Alzheimer's. "My advice to all husbands is put your arms around your wife and hold her tight and tell her that you love her because she might not be able to understand one day," Elwin said.



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