Saturday, June 26, 2010

Eye to Eye Communication

All eyes were on fathers last Sunday as we celebrated Fathers Day. During Sunday worship which naturally focused on fathers, our pastor talked about what a great father his son is to Lake. When Lake misbehaves, his dad gets on eye level to talk to him. That eye-to-eye contact is key to dealing with inappropriate behavior.

Communication is a problem in any relationship, and can become a major challenge when your loved one has dementia. To keep the lines of communication open, you can develop a strategy to focus on the feelings and not the words.

Jim sometimes said just the opposite of what he meant. If he said, “It’s cold in here!” and he was sweating, I knew he meant “hot.” As the disease progressed, and aphasia silenced Jim, I learned to read his body language and facial expressions to communicate with him. If he cried, I didn’t assume he was sad, I knew he might be hurting.

Some strategies to help keep the lines of communication open with your loved one:

  • Keep good eye contact as you speak.

  • Use short simple words and sentences, but don’t use Elderspeak or baby talk. You are communicating with an adult who has a disease that affects his or her ability to process information.

  • Pause to give your loved one time to process what you have said. Don’t expect a quick response, or even an appropriate one.

  • Use gestures to reinforce your words. Early in the disease when Jim was still able to drive I learned to point left, rather than say “Turn left.”

  • Tone of voice matters. When you speak in a sharp tone, the person may become anxious or combative. If you speak too rapidly or softly, they may not catch what you are saying.

  • Validate the person’s concerns.

One night at the nursing home, I observed a perfect example of how a visitor helped calm a resident by validating his concerns.

The resident, Frank, fidgeted and his brow was wrinkled with worry. He wore his heavy winter coat and paced the hallway. “I need to find a way out of here,” he said. “I have to tend to my cows and put the horses up.”

A man who was leaving after a visit with another resident passed Frank in the hallway and apparently knew what worried Frank and made him restless in the evenings. He stopped and made eye contact with Frank, and patted Frank on the arm as he spoke, “Frank, I’m going to go by your house and feed your cattle and put the horses in the barn.”

Frank turned and headed back to his room. Relief made his walk lighter. “Whew!” he said, “I’m sure glad that is taken care of.”

Just like the father who used eye level communication to get his point across, you show respect by giving the conversation your full attention. You are not talking down to your loved one, but have opened up a line of communication that goes beyond words.

Copyright(c) June 2010 L.S. Fisher

Thursday, June 24, 2010

Alzheimer's Reading Room: What is it like being an Alzheimer's caregiver? Unconditional Love

I submitted an article to Alzheimer's Reading Room about my caregiving experience. The Reading Room is an excellent source of information about Alzheimer's and includes everything from research information to personal stories like mine. Kudos to Bob DeMarco for maintaining and constantly updating this excellent site!

Alzheimer's Reading Room: What is it like being an Alzheimer's caregiver? Unconditional Love

Monday, June 21, 2010

ICARA Global Phase III Study

ICARA (Investigational Clinical Amyloid Research in Alzheimer’s) is conducting a global study on a drug called bapineuzumab which may slow the progression of Alzheimer’s. Trials will be conducted in more than 20 countries, including the United States.

Unlike many studies which exclude those with early onset Alzheimer’s, eligibility for the Bapi study starts at age 50. An online prescreening questionnaire is available to help you determine if you, or your family member, meet the other requirements for the study.

Whether you enter into a drug study has a lot to do with your personality. They are not for everyone. It may be ideal for you if you are the type of person who understands the study drug may not help you, and could cause undetermined side effects.

When Jim was in the early stages of Alzheimer’s we made the decision to enter him in a Phase III drug study. My sons helped me make the decision, because Jim had trouble communicating and I wasn’t sure that he understood the possibilities or the downside. They both agreed that since all the drugs available only treated symptoms, their dad would not want to bypass a chance to participate. As the primary caregiver I felt it was my responsibility to vet how a drug study works.

The upside to a drug study is you have the support of a medical team, laboratory services and testing without any cost. For those who are struggling with the costs of testing or expensive treatments, this is a big incentive.

Through the drug study Jim participated in, we found a neurologist who was considered the top in his field. Jim was given thorough exams, an MRI, and other tests without any charge to us or our insurance company. Jim developed side effects—mostly stomach distress—and had to discontinue the study. We kept the same neurologist who monitored Jim throughout the progression of his dementia. Even after Jim’s death, the neurologist read the brain autopsy report to let me know that Jim had corticobasal degeneration and not Alzheimer’s.

Many people participate in drug trials not particularly for their own benefit, but to be a part of the investigative process to help people who have not yet developed the disease. Effective treatment for Alzheimer’s is the key to preventing a national crisis as the baby boomers age.

The study drug, bapineuzumab, is not a cure for Alzheimer’s, but slowing the progression of the disease can ease the emotional and financial burden of Alzheimer’s. What are some of the benefits from slowing the progression of Alzheimer’s?

• People would remain in the mild stages longer.
• People with dementia could remain in their home longer before requiring long term care.
• Fewer people would be in the severe stages.

In the early stages, our greatest hope was to stop whatever was affecting Jim’s cognitive ability. As we worked through eliminating other treatable disorders, we often said, “If he doesn’t get any worse, we can deal with this.” Jim had changed, but he could still play his guitar, enjoy his grandchildren, and could have continued on with a productive, happy life.

When the world was faced with an AIDS crisis, research made it possible for some people to live with HIV and never develop AIDS. Why is it beyond the realm of possibility that a drug may someday be available to slow the progression of Alzheimer’s so that our loved ones would never move into the late stages of Alzheimer’s? This drug does not promise to be a cure, but it is a step in the right direction.

Call 1-888-770-6366 or visit for more information about the ICARA study.

copyright(c)June 2010 L.S. Fisher

Saturday, June 12, 2010

Let’s Cream Alzheimer’s

It’s hard to believe that our “Let’s Cream Alzheimer’s” Ice Cream Social and Balderdash Championship is only a week away. We don’t expect to make a lot of money at the social; in fact, we are relying on free will donations. What we hope to do is raise awareness of Alzheimer’s and our Memory Walk, and have fun, of course.

The ice cream social is a new idea and a learning experience for us and has been somewhat of a challenge because our Memory Walk committee is so small. We will be depending a lot on our friends at Fairview, relatives, and the youth group at church. Never having had a social before, we aren’t sure how much ice cream we’ll need. We don’t know if people will show up. Will we have enough Balderdash players?

The problem with a disease like Alzheimer’s is caregivers are often too tied down taking care of their loved ones to participate in fundraisers. A caregiver can be worn slick from having to make a lot of hard decisions. Those that have been through the gamut of caring for and losing a loved one to Alzheimer’s often want to put the past behind them. I can’t blame them for trying to get their lives back on an even keel.

Alzheimer’s is not a glamorous disease, and often one that people try to hide from the world. The person with dementia does not want to be treated like a child, and families may be embarrassed by their loved one’s behavior.

Too often caregivers don’t realize how much they can benefit from Alzheimer’s Association employees and volunteers. A speaker at one of our support group meetings helped me deal with Jim’s quirkiness. The speaker said to gauge behavior by asking yourself, “So what?” If the problem isn’t endangering anyone, “So what?”

His practical advice helped me through some sticky situations. One day Jim’s mom called to tell me he was out in the yard naked and wouldn’t come inside. She couldn’t get him to put his clothes back on. She was so distressed.

“I’ll be right home,” I assured her. “He probably had a reason for taking his clothes off. He’s either too hot, or he’s had an accident.”

“But he’s out in the yard without any clothes on.”

“Don’t worry about it,” I said. We lived in the country on a gravel road without much traffic. “So what if someone comes by? If they don’t want to see a naked man, they can keep their eyes on the road. After all, he’s is our yard.”

Recently, I saw a letter on a health Website written by a woman whose husband had Alzheimer’s. She was so embarrassed by her husband’s behavior that she didn’t want to take him out in public. She felt like people were staring at them. My comment was, “Jim didn’t notice people staring, and I got to the point where I didn’t care.”

We continued to go places that Jim enjoyed and didn’t worry about what others might think. I always considered Penny Braun, former executive director of the Mid-Missouri Chapter, to be my mentor about Alzheimer’s. Penny always said, “Ice cream solves a lot of problems.”
Following the advice of a wise lady, I took Jim to Dairy Queen almost daily.

A few days ago, I was looking for a specific picture of Jim. Digging through the boxes of pictures I don’t have in albums yet, I came across pictures of Jim in all stages of the disease. It tugged at my heart to see him in the early stages when he wore his cowboy hat, boots, and 501 Levis. He and his brother sat on the patio playing guitars together. I remember that day—Jim was having trouble finding the right chords to play. Jim, the master guitarist missing a simple chord change and forgetting the lyrics to songs he had sung for years.

Yes, those days are behind me now, but I believe those of us who have finished our journeys should help those who are still traveling. I hope we “cream” Alzheimer’s in my lifetime. All I know is that we can’t give up on finding a cure.

If some of us don’t step out of our comfort zone and put effort into bringing Alzheimer’s to the forefront, millions of Americans will always struggle with the daily challenges of caregiving and the heartache of a cruel and debilitating disease. We need to put the research spotlight on the challenge to end Alzheimer’s.

“Let’s Cream Alzheimer’s” is a good way to join a mission statement and a fun event. So if you are in Sedalia on June 19, join us 7 PM at the Celebration Center while we “cream” Alzheimer’s. It’s a time to relax and enjoy. The hardest decision you will need to make is “two scoops, or one?”

Copyright (c) June 2010 L. S. Fisher

Sunday, June 6, 2010

Remembering Furry Friends

Between Memorial Day and writing two stories about pets to submit to Chicken Soup for the Soul, I’ve found myself thinking a lot about special pets our family has had over the years. This was further reinforced by seeing two families giving away pets in Wal-Mart’s parking lot today.

I couldn’t help but think about the time we did that. Lacy was a stray dog came to live at our house. She promptly delivered a litter of puppies and then got hit by a car. We had six puppies to hand feed. I named one little long-haired puppy Ragamuffin, and figured I might as well get used to her because I didn’t think we could give her away. Today, I was trying to remember the names of all the puppies, and was a little surprised that I couldn’t. I remembered the long-haired male was Jiffy. Two little puppies looked so much alike we named them Eppie and Popo. I’m blank on the other names.

I remember when we took them to the parking lot a family came over and their little boy started manhandling the puppies. I cringed inside and worried about the puppy when the boy walked off clutching him around his middle.

Ragamuffin was shortened to Muffin, a name that suited the loving sweet-natured dog. She was a member of our household for several years until she disappeared one Thanksgiving Day. I was heartbroken and swore I would never let myself get that close to a dog again.

Jim and I were lying in bed reading on a cold February night when Eric announced he had adopted a puppy at the pound and had named him Tuffy. Jim was really upset with him and said, “Take that dog back!” Eric showed the puppy to his dad, but Jim said, “I’m not holding it!”

Eric picked up the dog and was gone for a while. When he came back, Jim said, “What did you do with the puppy.”

“I dumped him,” Eric said.

Jim jumped out of bed and started getting dressed. “We have to go find him! He’ll freeze to death!”

“I’ll go get him,” Eric said. “He’s out in the garage.”

“You go get him right now,” Jim said, “and bring him here.”

Well, Jim held “Tuffy” and decided his name had to be Bubba. Along with renaming the dog, he staked a claim as owner. Eventually, Eric gave him the dog.

When Jim went on vacation to visit his family in Idaho, he called every night checking on us, but mostly checking on Bubba. His cousin told me, “I could understand Jim being homesick for you and the kids, but he’s coming home early because he misses his dog!”

Jim and Bubba were inseparable. Even after Jim was in the nursing home, I could mention Bubba and a sparkle lit up Jim’s eyes. “I took Bubba to the vet today,” I told Jim one night at the while I fed him. Jim had become silent, but his eyes shifted away from the TV and toward me. “You know what the vet told me? He said Bubba needed to go on a diet.” Jim smiled slightly. The vet had been telling us for years that Bubba was too fat. Well, he did weigh 90 pounds, but he was really big boned and had ten pounds of fur we had sheared off in the summertime.

“You know what I told him?” I asked Jim. He gave me a look that showed he was really listening to the story. After all, I was talking about Bubba, his best furry friend. “I told the vet ‘Bubba is twelve years old. He is fat, has always been fat, and always will be fat. I’m not about to put him on a diet now!’” Jim laughed. Yep, that was the way it was with Bubba. He had never gone hungry and there was no need to try it in his old age.

Bubba died while Jim was in the nursing home. I talked about Bubba from time to time and never indicated that he was gone. In Jim’s heart, his dog Bubba was always happy enough to wag his whole body, just like always.

It is hard to lose a pet, and sometimes you don’t think you ever want to go through the heartbreak again. But when you don’t take that chance, you miss out on so much. Jim thought he didn’t want another dog, but dementia couldn’t erase the spot in his heart reserved for Bubba.

Copyright © June 2010 L. S. Fisher