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Tuesday, February 28, 2017

Blowin' in the Wind

As usual, I was running late for an appointment this morning. As I turned onto the highway, I noticed my Sedalia Democrat had been delivered to my paper box. Deciding I could be on time if I didn’t waste the couple of minutes to pick up the paper, I left it.

After my appointment, I made my usual stop at Walmart. As I pushed my cart into the parking lot, I had to battle the wind to keep the cart going forward instead of sideways. Talk about a strong wind. The wind buffeted my car on the way home, and I parked at the end of the driveway to get my paper and mail. The paper was gone. I looked around and found it lying in the ditch.

After I retrieved the paper, I grabbed a stack of mail out of the mailbox. The wind ripped a few pieces out of my hands and whimsically scattered them into the aforementioned ditch. Have you ever chased paper that a gust of wind takes out of your reach time after time?

The Bob Dylan song “Blowin’ in the Wind” came to mind. Bits and pieces of the lyrics teased my memory. I remembered unanswered questions about manhood, white doves, cannon balls, mountains washing to the sea, and pretending not to notice freedom lost.

The most haunting line in Dylan’s song is about too many people dying. Every year 700,000 people die from Alzheimer’s, and so far we haven’t been about to do one thing to stop it. Not one single thing!

Alzheimer’s disease is the sixth leading cause of death in the United States. Approximately 5.4 million people are living, and dying, with the disease. Around 200,000 people younger than age 65 have Alzheimer’s. Many are much, much younger.

Each year I join other advocates nationally to advocate for more research funds. In our packets, we have information that compares research funds for Alzheimers compared to the amount allocated to fight other diseases. This dedication to fighting diseases has paid big dividends. At one time, a diagnosis of HIV/AIDS was a death sentence. Research has played a huge role in finding effective treatments for cancer and heart disease.

Lately, two promising drug therapies failed during drug trials. When these treatments failed, we were disappointed, but we haven’t given up!

Some of the brightest minds are working diligently to cure this incurable disease. In the meantime, it is important that caregivers and persons with dementia have the care and support they need to live life to the fullest. Those on the front lines need respite, home and community based support, family support, and a reason to hope. They need to know that we have their backs.

I was at the Missouri State Capitol on Memory Day advocating for respite funds. The Missouri state budget has been slashed, including a big reduction in the $450,000 service grants that our friends, neighbors, and families rely on for respite. This is a case of saving pennies and costing dollars. Respite helps keep persons with Alzheimer’s at home longer. A simple formula shows a possible cost savings of $2 million for the state. Here’s how it works:  800 respite families X $157 average NH Medicaid cost per day X 30 days delay in NH placement X 60% of NH residents on Medicaid = $2 million savings in Medicaid NH costs.

I’m going to D.C. at the end of March to visit Senator McCaskill, Senator Blunt and Congresswoman Hartzler. Although, I take the fight to Capitol Hill, each of us has the power to make a difference without leaving the comfort of home. Call, write, or email your legislators, especially when legislation is pending or advocates are visiting.

Become a voice. Answer the calls to action. By keeping up-to-date on Alzheimer’s legislation, you can learn how to be an effective advocate.

It may seem that the answer to a cure is blowing in the wind, but if we chase it hard enough, we will eventually find it.

Copyright © February 2017 by L.S. Fisher

Friday, February 17, 2017

Alzheimer’s Caregiving: A Voice of Experience

At the end of January, my friend, and mentor, Penny Braun passed away. Penny was my first contact with the Alzheimer’s Association. When Jim first developed dementia symptoms, I called the Mid-Missouri Chapter, located in Columbia. The executive director, Penny, answered the phone.

“I don’t know if I should be calling you because my husband has memory problems but has not been diagnosed with Alzheimer’s,” I said.

“You called the right place,” Penny assured me. “We have information that will help you, and you can call us anytime.” And I did.

Penny brought her beloved German shepherd, Victoria, with her when she came to the 1998 Sedalia Memory Walk. Penny wasn’t in any of the photos because she took them, but Victoria posed with the small group that walked that day.

In 2001, Penny asked asked me to go to the Alzheimer’s forum.

“We’re going to ask for a billion dollars,” she told me. “Maureen Reagan set that goal when she was on the national Alzheimer’s board.”

“I can do that,” I said with much more confidence than I felt. I had no concept of what a billion dollars looked like. Of course, the research funding was only a small fraction of that billion dollar goal.

Pennyand I shared a room on my first trip to Washington, D.C. We arrived late and when we tried to check in, the clerk clicked the keyboard on the computer, frowned and clicked some more.

“I don’t have a reservation for you,” he said, “and we’re booked solid.”

“We do have a reservation,” Penny said firmly, “I have the paperwork here.” Penny dug in her purse for the reservation. When she couldn’t find it, she turned on 
the charm. “We’re exhausted, and surely you can find one room we can have. Please, check with your manager and see if you can find a room for this old lady.”

When he left to check, she turned to me and said, “They always save one room in case the president or some important person needs a room. Oh, here it is!” She jubilantly pulled out the reservation, gave it a glance, and stuffed it back into her purse. “It begins tomorrow night,” she said in a stage whisper. About that time, the clerk returned all smiles, and handed us the keys to a beautiful suite. Mission accomplished.

After Penny retired from the Alzheimer’s Association to care for her husband, I saw her only occasionally. She was at the Alzheimer’s roast last spring. She, of course, gave me a big hug and asked how I was doing. “Have you read my book?” she asked.

When I admitted I hadn’t, she pulled a copy out of her purse and handed it to me. Alzheimer’s Caregiving: A Voice of Experience.
Penny knew the heartbreak of Alzheimer’s because her mother had the disease. Her family connection compelled her to open the office in Columbia, first as a volunteer. She later became the chapter’s first executive director.

Penny’s book has several examples of situations and solutions to problems that “might work.” She was smart enough to know that the same solutions don’t work for every person, nor do the same solutions always work for the same person.

I had to smile when I got to the “Three Right Answers.” She wrote, “As the disease progresses, three answers to problems seem inevitably right. The first two are music and ice cream.” The final right answer is the smile. “Use it warmly and often.”

Rest in peace, my friend. You left a legacy of hugs, smiles, and a caring heart.

Copyright © February 2017 by L.S. Fisher
http://earlyonset.blogspot.com

Monday, February 13, 2017

Seven Types of Love

When February 14 rolls around, hearts and minds everywhere focus on love. Some look forward to the day with unbridled anticipation, while others feel only trepidation. During our lifetimes, most of us will experience both feelings depending on how life is going at that moment.

Love can be enduring, or elusive. It can be the center of our dreams, or the crux of our nightmares. Love can bring us to the mountaintop or plunge us into the deepest, darkest valley.

Valentine’s Day celebrates all kinds of love. According to the ancient Greeks, there are seven different types of love. I’m not sure that all the emotions we humans call “love” can really be narrowed down to seven categories, but I suppose it’s a start.

1.      Eros, or erotic love, represents the physical body. This type of love has all the passion and desire to fuel a romance. It is because of Eros love that Cupid wears a blindfold.
2.      Philia, or affectionate love, is the love we feel for our friends who have our backs through the bad times in our lives. These trusted friends provide the chocolate cake when our romantic love hits rock bottom.
3.      Storge is familial love. Storge is the type of love we feel for our parents and children. It can also be the fondness we have toward childhood friends where the relationship is built on familiarity and acceptance.  
4.      The playful love of ludus is found during the early stages of falling in love. That’s when just seeing the interest of our affections can set our hearts all aflutter. Ludus can also describe the relationship of friends who enjoy hanging out with each other.
5.      Pragma is enduring or practical love. This kind of love is found in married couples who have made the effort to maintain their relationship through compromise, patience, and tolerance. It can also be found in couples who stay together for political, social, or other practical reasons.
6.      Philautia is self-love. In this sense, it is a good thing! In order to truly love someone else, it is necessary to first love yourself. Philautia is unhealthy when a person places himself before others.
7.      Agape is the purest love. It is selfless love free of expectations that accepts and forgives. Agape is unconditional love.

We all understand that in a romantic relationship, we give our hearts, and we expect that love to be reciprocated. Since Cupid is blindfolded, sometimes love is blind. We focus only on the good qualities and overlook the irritating ones. Whether we survive the good, bad, and ugly that makes up every human being on earth depends on how much effort we put into keeping the love alive.

When we look at the different kinds of love, it is easy to see that agape, or unconditional love, is the type of love that caregivers have for their loved ones with dementia. When Jim developed dementia, my love for him became multidimensional and included both pragma and storge.  I often likened my love for Jim to that of a mother for her child. More importantly, I don’t believe that the love of a caregiver fits neatly into some Greek or psychologist’s category.

Each of us is a unique individual with an individual capacity for love. Not even a scientist can accurately measure the love one person has for another.

A lot of hearts given on Valentine’s Day are not worth the paper they are printed on. The real value of a Valentine’s heart is determined by how we treat the ones we love the other 364 days of the year and throughout the years of a lifetime.



Resources:
https://lonerwolf.com/different-types-of-love/
https://www.psychologytoday.com/blog/hide-and-seek/201606/the-7-types-love

Copyright © February 2017 by L.S. Fisher

Saturday, February 4, 2017

You Know What I Hate?

It seems that people are getting bolder and nastier in their communications. I’m not much of a hater, but when I thought about it, there were a few things at the top of my list.

I hate consecutive months with dates that fall on the same day of the week. This has caused me grief in the past and came close to causing me grief this week. Let me explain. My hairdresser called me at work one day wondering why I hadn’t shown up for my appointment. “I don’t have it on my calendar,” I said. Flipped the calendar and sure enough there it was—same day of the week, same date, different month. This week, I’ve been planning to go to a conference Friday and Saturday. It was on the wall calendar for February 3-4, but while setting up a conference call for next month, I saw the conference on my electronic calendar for March 3-4. Holy moly, sure glad I didn’t drive to Jefferson City an entire month early.

I hate the paint MO-Dot uses on the roads. It doesn’t take long for the lines to fade away and I don’t have confidence that I’m inside my lane. This is especially dicey driving through town in the rain with streetlights and car lights glaring off the pavement. The older I get, the harder it is to see the lines. I want glow in the dark paint on our highways like the Netherlands has. Is that too much to ask?

I hate tax time. It isn’t even so much paying the taxes as it is gathering all the papers together, bringing everything up to date in Quicken, and then putting the info on TurboTax. Everything is complicated, and it makes my head hurt. I’d so much rather be doing something else. Much, much rather, be doing just about anything else.

I hate junk mail and junk email. Try as I might, I can’t get rid of those two. I unsubscribe, report as spam, block, grit my teeth, and swear. Nothing helps. Right up there with junk email is email that requires me to complete a task when I’d rather be relaxing. It’s easy to be sucked into a project that’s taking much more of my time than is warranted.

I hate debilitating disease especially Alzheimer’s. And Cancer. And heart disease. And diabetes. And anything that makes a person suffer. I hate to watch someone dying. I wish we could live long, healthy lives, and when it was our time, we’d leap on that chariot of fire and ascend into heaven in a blaze of glory.

I hate homelessness. Every time I go to D.C. for the Alzheimer’s forum, I see dozens of the 11,623 homeless people that live in that city. No one should have to curl up on a park bench or huddle in a doorway on a cold winter’s night. One year, I was sitting in the lobby of a five-star D.C. hotel when this lady walked inside. She was dressed in a long flowing dress, but I noticed she wasn’t wearing a bra.

A hotel worker rushed out from behind the desk and confronted her. “You have to leave or I’ll call the police,”  he told her.

“Please don’t call the police. I don’t have any place to stay and it’s cold outside,” she replied in a soft voice.

“There’s a homeless shelter a couple of blocks from here,” he said. Then, he showed her the door on a cold winter’s night, and she went on her way.

I hate that we are never going to have world peace. It is impossible in a world where power means more than people, and religion means more than faith, and we focus on our differences rather than our commonalities.

I hate Cajun toast. The identical twin look of Cajun and cinnamon seasonings caused me to serve my granddaughter Cajun toast when she was little. To be sure, it had some sugar in it, but it was still nasty. Earlier this week I went to sprinkle cinnamon sugar on my toast and I reached for the Rubbermaid mini container where I keep it. Well, I also keep cinnamon creamer in an identical container, but caught myself. I reached into the cabinet and pulled out another container thinking this was surely the right one. The smell was a clue that my husband used one of the minis for something that smelled suspiciously like Cajun seasoning. Finally, third time was a charm.

Yes, there are a few things I hate in this world, but many, many more that I love.       
   
Copyright © February 2017 by L.S. Fisher