Unfortunate Accident

Many years ago, Jim’s parents, Bill and Virginia, noticed a squirrel that hopped up on their patio, day after day. They started to feed the little fellow and looked forward to his daily visits.

One day the power went out. A couple of linemen from the electric cooperative where I worked drove out to fix the problem. The line superintendent called me on the intercom and said, “We found the problem. Their pet squirrel got into the transformer.”

Later, my grandson Colby told me that the squirrel had “an unfortunate accident.”

People have unfortunate accidents too. I recently read about a couple who heard the president talking about an anti-malarial drug, chloroquine, showing promise as a treatment for COVID-19. They knew that they had chloroquine phosphate to treat their koi. They mixed up a small amount and took it. They both immediately became ill. The woman vomited and lived; her husband, unfortunately, died.

Why would they do such a thing? They had probably heard about off-label use of drugs for years. Once they heard about the studies, they probably felt fortunate enough to have some on hand. Other people are enrolling in studies and trying other drugs to stave off or shorten the effects of COVID-19.

France and Italy are using hydroxychloroquine to treat COVID-19 although its effectiveness is unknown. The unfortunate thing about experimental off-label use of a drug in a pandemic is that people who take the drug for chronic conditions such as lupus, rheumatoid arthritis, or sarcoidosis find it “out of stock.”

India, where many of our drugs are manufactured, is not exporting the raw ingredients for hydroxychloroquine. They are recommending their medical professionals take the drug to prevent developing COVID-19. In the USA, pharmacists are reporting shortages as off-label use of the drug for the pandemic soars. People who have used the drugs for years to maintain their health are now finding it unavailable. It is unreasonable for healthy people to take a drug for off-label use when it might endanger the health of people whose lives depend on an uninterrupted supply of medication. These drugs have side-effects and it may be a case where the cure can be worse than the disease.

Off-label use can be a slippery slope. I took issue with the anti-psychotic drugs physicians prescribed for Jim. First, Jim was on a new Alzheimer’s drug that caused him to start bleeding and to feel bad. He had only been off the drug for a few days when he got into a scuffle with another resident and was kicked out of the nursing home. Fast forward to “regenerations.” They prescribed an anti-psychotic drug that made foam flow out of his mouth. Jim couldn’t eat or drink and he paced constantly, and acted as if he were an angry insane man. He dropped weight and appeared to be on the verge of dying.

My son and I told the doctor to him off the drug, or we would take him to a different hospital. The doctor said that the drug couldn’t have those side effects and that the hospital “would not be responsible” for how he acted without the drug.

We insisted. Signed papers, etc. Within a few days of being off the drug, he returned to his normal self. Throughout Jim’s disease, we fought the anti-psychotic drugs since most of them did not work on him and made him worse. Drugs that “calmed” or more accurately “zoned out” other residents would agitate Jim.

My feelings are that when using a drug off-label, use with extreme caution and only under a physician’s close supervision. If you start having strange side effects, stop taking the drug! In addition, don’t try a long shot off-label use when others need them for chronic conditions.

Maybe the best route to take with COVID-19 is to wait until the studies are complete. I wouldn’t want any of my friends or family to have an unfortunate accident.

Copyright © March 2020 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Decluttering the Calendar

My life is usually so busy that my calendar can have as many as three events on the same day. I toss so many balls into the air that occasionally one smacks me on top of my head.

Lately, meetings and events have been scheduled, and cancelled. My calendar was covered with so many changes, delays, and rescheduled events, that I finally gave up and bought a dry erase board. It’s been handy for changes, because I can just erase a date, or time, and write in the new info.

Sometimes, I don’t feel like I’m in Missouri anymore, but have entered a strange world where everything is just a half bubble out of plumb. Each day brings changes: social distancing, sheltering in place, self-quarantine, businesses closing, and the stock market changing at warp speed.

After the Alzheimer’s forum was cancelled, I thought I’d be able to go with the family band to play at the nursing homes. The first home cancelled because of the flu. Shortly after our first practice, all nursing homes were on lockdown—no visitors or volunteers.

I can’t help but think how stressful it would have been for me if I hadn’t been able to see Jim when he was in long-term care. When anyone asked me why I did things for him that the nursing home should have been doing, I had to admit that it was for my own peace of mind. It helped me to know that he was fed, dry, and clean.

Jim was like a part of me. He became dependent on me to see about his well-being. When he could no longer remember our life together, his memories lived with mine in my heart.

Looking back I see how crazy it was for us to get married when we did. Jim had to finish his tour in Vietnam. Then, he was stationed at Ft. Riley for a year. We lived in Manhattan, Kansas, in a one-room apartment. Yes, one room, not one bedroom. We had no air-conditioning and it must have been one of the hottest summers in history. Before Eric was born, we moved to a bigger apartment in the same house.

The point I’m getting at is that we barely had enough money to live on. We paid our rent and utilities and carefully shopped for a month’s worth of groceries. After Jim got out of the service, we lived below the poverty level until I went to work at the Rural Electric Cooperative ten years later.

We went through some hard times, but we always managed to have money in a savings account for even harder times. Jim could keep any old car running and he could fix anything. If the washing machine broke down, no problem. We had family, we had love, and that’s what makes a person’s heart wealthy.

So yeah, a lot of people are going to face some tough times. My 401k is taking a major hit right now, but just like the last recession—if worse comes to worse, I’m not afraid. I’ve been poor before and living through that time is what made me, me.

The economy doesn’t scare me for myself. I do worry about those who have never known how to budget, how to wear the same clothes and shoes for several years, or how to plan a healthy meal with limited funds. I hurt for the kids who depended on school for their only meals.

I hope that we work together as decent human beings to change the trajectory of this virus. When we come out on the other side, more people are going to learn that hard times make us stronger. When life, as well as our calendars, is decluttered, we will rediscover the worth of simpler times.

Copyright © March 2020 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Something Important to Say

“I have something important to say,” I said to my husband. He got a worried look on his face with this preface to an announcement. We had been talking about COVID-19 so he may have thought I had a fever.

“What’s that?” he asked, cautiously.

“I love you,” I said, thinking that we just didn’t say it enough.

“I have something important to say too,” he said. I smiled in anticipation of words of love. “You snore.” He then proceeded to tell me he had spent several hours in the living room watching TV and eventually catching some ZZZs.

Life has certainly changed over the past few weeks. We Americans are used to going where we want and socializing often. Now to stem COVID-19, we are spending more alone time than ever.

The first indication that things were getting serious in my world was the cancellation of the Alzheimer’s Impact Movement (AIM) Forum in DC. My mom and my husband both had tried to talk  me out of going to DC and were thankful the decision had been taken out of my hands. I spent a day cancelling hotel rooms and plane tickets.

To stop the spread of  COVID-19, we as a nation and as individuals are taking extreme action. People have been placed in quarantine, and prohibited large group gatherings have shrunk from  1,000 people to 50 or less. It’s not easy or inexpensive to shut down venues, concerts, schools, after school activities, professional sporting events, and to hang out the CLOSED sign on restaurants, small businesses, and physical therapy clinics.

Today, our pastor announced our church would be closed for deep cleaning and they have postponed other activities. The next Sedalia Business Women’s meeting has been cancelled, and other upcoming meetings will probably be cancelled too.

Personally, I’ve been in a funk and can’t seem to get motivated to do much of anything. Lack of sleep and not going and doing as usual, has zapped my enthusiasm.

I have something important to say:  Although the AIM Forum has been cancelled, advocacy work must go on.

·         Approximately 5.8 million Americans have Alzheimer’s disease. Presently, there is no cure or effective treatment for Alzheimer’s. This is why research funding is so important!

·         In 2019, unpaid caregivers provided 18.6 billion hours of care for people with Alzheimer’s, at a value of $244 billion.

·         Two-thirds of Americans with Alzheimer’s are women

·         Two-thirds of dementia caregivers are women. Thirty percent are older than 65. Only 10% are caregivers for their spouse while over half provide care for a parent or in-law.

I have some upcoming telephone conferences, and possibly video conferences. I dread video because that means I should fix my hair and put on makeup. That’s been optional for a while. The only place I’ve been lately was to practice music at my brother’s house. We’ve decided to have more jam sessions while we wait for the nursing homes to open their doors to volunteers.

I just need to keep reminding myself that there’s still work to be done and, eventually, life will get back to normal.

When my husband left home the day of our conversation, I asked him, “Don’t you have anything important to say?”

“I love you,” he promptly replied.

“I love you,” I said, “but you snore too!”

Copyright © March 2020 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Memory Day Thoughts

On Memory Day, March 4, at the Missouri State Capitol, advocates from across the state spoke with their legislators about establishing the Missouri Alzheimer’s State Plan Taskforce, fund Alzheimer’s grants for respite, and to Build a Dementia-Capable Workforce.

After our visits, we gather in the rotunda for a Memory Day Ceremony. This year, I was asked to share some of my thoughts as an advocate. Here are my thoughts:

My Fellow Advocates,

Some of you have been Alzheimer’s advocates for years, and for some of you this is your first time. For you who are first-timers, I have to warn you—advocacy gets into your blood.

Each of us has a story that brings us to Capitol Hill. The pinwheel flower shows your connection to the disease. I always select a purple flower because I have lost a loved one.

My husband Jim developed dementia at 49 years old. For the next ten years, the disease stole him away from me, his sons, and his grandchildren. He never met his youngest grandson.

Caregiving for a loved one with Alzheimer’s is on-the-job training for a job that you never wanted to do. From the time you wake up in the morning, until you wake up again the next morning, you are on-the-job. When Jim lived at home, I averaged about four hours sleep each night—and not always consecutive hours.

I was in my forties and worked fulltime. I was lucky to have an abundance of family support. Jim’s mom, his sisters, my mom and my sisters, our sons and daughters-in-law all pitched in to keep him at home for as long as we could. No matter how hard we tried to keep him safe, Jim kept wandering off. 

When I made the heartbreaking decision to put Jim in long-term care, I never relinquished my role as his primary caregiver. My daily routine was to feed him, toilet him, and bathe him. It is safe to say that Jim had more family members dropping by the home than any other resident.

Becoming an advocate gave me power over a disease that made me feel powerless. I’ve been an advocate on the state and national levels for two decades. When more than 1,000 Alzheimer’s advocates wearing purple sashes storm our nation’s capitol, everyone notices! We hear “thank yous” and stories from passersby. We hear “go-get-’em” and “God bless you.”

An important part of being an advocate is building relationships with your senators and representative. That does not happen with one visit a year—it happens through district visits, mobile offices, emails, thank you notes, phone calls, using social media, and letters to the editor.

One of the best things I did was to join AIM, the Alzheimer’s Impact Movement. AIM provides the tools to make me the best advocate I can be.

Don’t let your advocacy for 2020 end here today; let it be a beginning. Take the power you have as an individual and become passionate about legislation that improves quality of life for persons with the disease and their caregivers. Let’s work together to end Alzheimer’s before our target date of 2025. Know that your voice is powerful, and you, individually, and all of you collectively can make a difference.

As an advocate, I do not vote red or blue, I vote purple. Being an advocate is not just what I do; it is what I am.

  

Copyright © March 2020 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ