Sunday, November 29, 2015

Rainy Days Get Me Down

When it rains, pours, day after day, you begin to think that the earth is turning to water. All I can see from my window is rain in the yard, the fields, and every other low spot in between. The skies are a hundred shades of gray.

It’s hard to let my sunny disposition shine when Mother Nature doesn’t cooperate. I have found myself thinking too much and doing too little. I’ve vegged out on the couch two days straight. I watched show after show. My listless, do-nothing self became my dominant trait. It’s the rain’s fault.

The fall decorations were clustered together waiting for me to get up the energy to put them away. I dragged out a few of my snowmen, one of my small trees, and other Christmas odds and ends. But the bulk of the decorations are in the garage in storage tubs. Then, I turned on the tree and flipped on the TV to watch a Hallmark Christmas show. About ten minutes in, I realized I’d already seen it.

I went to bed and read until about midnight. I’ve had trouble sleeping since it started raining. The thinker keeps on thinking, and my normal slumber-inducing methods aren’t working. For two days, the negative past swooped down on me and washed away the positive thoughts like so much driftwood.

I woke up this morning out of sorts. Testy and grumpy. At least I found the energy to tackle a few tasks.

As I sat down to write my blog post, I noticed a message on Google Plus. I called my mom to share what was written. A person on the other side of the globe wrote to comment on my special Mom after reading “Under Control” in Chicken Soup for the Soul Thanks To My Mom.

The note said, “I was very impressed with your mother’s unconditional love for you and for Jim when she tirelessly took care of him. She was still mothering you despite the fact that you have become a mother yourself. Mothering is not something perfect women do, it is something that perfects women. If she is still alive, please convey my greetings to her and tell her that someone across the globe is very proud of her.”

Happily, I responded that my mom was in excellent health and would be turning 89 in January. I had originally titled the story “Spicy Chicken Sandwich,” but the editors at Chicken Soup renamed it, which is probably why they have bestsellers and I don’t. It is always awesome to be in a Chicken Soup book. The competition is fierce.

This story didn’t make it so much on my writing merit as it did the story itself. A story of how my family became my support system when I was a caregiver. They put up with me on sunny days and rainy days to help me keep Jim at home as long as possible. In “Under Control,” I focused on my mom, because you can only say so much in 1200 words. The story could have been about Jim’s mom, my kids, my sisters (in-law and birth), cousins, friends, neighbors, and eventually professional caregivers.

Caregivers have a lot of rainy days. It seems that down days come in clusters.
Rain, and bad days, may seem like they are going to last forty days and forty nights. Just about the time you think you should get started on that Ark, the rainbow brings the promise that everything is going to be all right. Next thing you know, the sun pops through and dares those dark clouds to show their frowning gray faces.

Yep. It’s still raining here in Missouri, but I’ve passed through the gloom and doom. I’m ready to tackle the world—tomorrow.

Copyright © November 2015 by L.S. Fisher
http://earlyonset.blogspot.com

Wednesday, November 25, 2015

Welcome to My World

Volunteer Pumpkin
Still dressed in my PJ’s and first cup of coffee in hand, I headed toward my downstairs office yesterday morning. Harold had already forewarned me that as soon as the weather was warm enough we would return to painting fence posts and rails. I was determined to get an early start on my blog.

I sat in front of my PC trying to decide if I dare jump into writing my blog post, or if I should tackle my To-Do list first. I balanced the options in my head. If I worked on my To-Do list, I would be jumping from task to task spinning my figurative wheels in an attempt to multitask my multitasks. Hours would fly past while I whittled down my list only to add more. The list has a life of its own and is never ending.

Blog—a firm decision. I should have done it Friday, and here it was Tuesday so I was already four days behind. My quandary helped me decide on the title: “Welcome to My World.”

I placed my fingers on the keyboard and noticed my nail polish was worn and chipped. I would have done them Monday before the Alzheimer’s Board meeting, but the power was out when it was time to get ready and still out when I should have been done. Just as I had thrown everything in the car to go to the other house to shower, the power came back on.

I typed the title, and my phone sounded an alarm. Ignore it, my left brain said. Better look at it, my right brain replied.

Curiosity won. Hair appointment: 10 a.m. What? Well, that’s just dandy. Here it is 9:30, and I have to be dressed and in town in thirty minutes.

I abandoned my first cup of coffee and ran up the stairs knowing I’d need to be dressed in record time. Short of breath, I rushed into Harold’s office to tell him the good news. I threw on clothes and a little makeup. No need fussing with my hair—that’s my hairdresser’s job. No need for earrings—they would just get in the way.

After getting my hair cut and styled, I made a quick trip to the grocery store. As I put the groceries in the car, I saw the box of sponsor T-shirts in the backseat. It was a perfect day to deliver them, but too warm to leave groceries in the car. Besides, it was time to get home and paint. At least my hair looked great until I put on the paint mask and pulled the elastic to the back of my head.

So, seriously, welcome to my world. But then again, I think it’s everyone’s world now. I don’t hold the patent on crazy, busy days. Looking back on my life, it seems it has always been that way. When my kids were little, days blurred into weeks, into months, and years until they weren’t little anymore. Then, Jim became more dependent on me to provide his essential care. I became immersed in caring for him and added volunteering for the Alzheimer’s Association to the To-Do list.

As if working, being a caregiver, and volunteer work wasn’t enough, I went back to college. How did I do it? I have no clue. I just took it a day at a time. Heck, sometimes it was minute to minute.

I wonder how any of us do it. Do we take on more than humanly possible, or are we just making the most of the time we have allotted to us? Are we doing the things we love, or are we fulfilling obligations and pushing aside what we really want to do?

The bottom line is that it’s all about balance. I don’t want to be the kind of person that blows off obligations, but I don’t want to be the kind of person that only has time for obligations. I don’t mind standing in the freezing cold to ring the bell for Salvation Army any more than sitting in the comfort of my home writing a press release for scholarships.

Variety is as important as balance. This is how I’ve chosen to live, so I’m sharing, not complaining. I’ve been blessed in so many ways and am thankful for the world I’ve been given. I appreciate life’s special surprises, like the imperfect, but determined, volunteer pumpkin that grew in our yard this year. With a smile, I welcome you to my world.

Copyright © November 2015 by L.S. Fisher
http://earlyonset.blogspot

Saturday, November 14, 2015

November Is Alzheimer's Awareness Month

Linda Fisher and Janna Worsham at Coffee with Congress
The month of November is a month of pumpkins, fall décor, thanksgiving, and the onslaught of the Christmas season. It is also Alzheimer’s Awareness Month.

I recently attended a “Coffee with Congress” at Provision Living Center in Columbia. I consider this as a “kickoff” to Alzheimer’s Awareness month.

It probably should have been called Coffee with Congress(ional) staff. Newbies to advocacy often become irate when they think they are going to talk to a member of Congress and instead talk to a staff member. I’ve seen perfectly capable advocates waste an opportunity to wholeheartedly share their message. Staff members are focused on what you have to say and they will share the relevant information with their boss.

In this instance, we met with three staff members. I had a great visit with Janna Worsham with Congresswoman Vicky Hartzler’s office, Sarah Barfield Graff with Senator Roy Blunt’s office, and Kyle Klemp with Senator Claire McCaskill’s office. We talked about funding for Alzheimer’s research and thanked them for their support.

We are proud of our Missouri group. Senator Blunt has requested $350 million additional funds for Alzheimer’s research. That is $50 million more than our ask. Senator McCaskill is the top ranking democrat on the special committee on aging. We saw her in action at the Alzheimer’s Public policy forum when she joined Chairman Susan Collins (R-Maine) to head a bipartisan hearing focusing on the financial, economic, and emotional challenges facing those with Alzheimer’s disease and their families.

In addition, I wanted to thank Congresswoman Vicky Hartzler for her unwavering support for Alzheimer’s research. One year when we brought a letter asking for a modest increase in Alzheimer’s research, she had already sent a request for $1 billion. She also uses Facebook, Twitter, and her newsletter to create her own storm of Alzheimer’s awareness. She and I connect on a personal level because we know the heartbreak of losing a loved one to dementia.

We also discussed the HOPE for Alzheimer’s Act and the asset the Act would be for families dealing with the disease. The Act is a common sense approach to providing Medicare coverage for comprehensive care planning services for newly diagnosed individuals and his or her caregiver, ensure that a diagnosis and care planning are included in medical records, and to require the Department of Health and Human Services to educate providers about the benefits.

As a caregiver, I kept track of Jim’s medical conditions—symptoms, diagnosis, tests run, side effects of prescription medications, and any information relative to his health. I took prints of the spreadsheet to every appointment. This kept him from being prescribed medications that he couldn’t take, duplication of tests, and helped me fill out all those darned forms. What happens to the people who don’t have someone to tell every specialist what others have done? The HOPE Act doesn’t have a “Score” which is an indication of what it would cost the government. Somehow, I think that instead of a cost to the government, it would save patients and the government by reducing duplication of services or writing prescriptions for medicine that has already created problems.

We heard caregiver stories including a care partner who was there with his lovely wife. He told of their problems with getting a diagnosis of early-onset Alzheimer’s. I shared some of my caregiving experiences. Several Greater Missouri Chapter staff and Board members were present to tell their stories and share their passion.

The meeting was informative, encouraging, and relevant. Those of us attending the Coffee with Congress left with a conviction to do everything within our power to end this horrible disease. We look forward to the day that Alzheimer’s becomes a manageable disorder, or better yet, when researchers find a cure.

#ENDALZ

Copyright © November 2015 by L.S. Fisher

http://earlyonset.blogspot.com

Sunday, November 1, 2015

Turn Back Time

Today we turned our clocks back one hour. My cell phone and computer both did it for me, but the dozen or so other clocks remain an hour ahead until they are changed.

I always remember which way to turn the clocks by “spring forward” for daylight saving time  and “fall back” to return to standard time. In one place, I saw it referred to as “turn back time.”

Turning back time is completely appropriate for another reason than standard time on November 1. This is the day after Halloween and the religious holiday of “All Saints Day” or as it is celebrated in some countries, “Day of the Dead.”

Is there any better way to turn back time than to remember those who have already passed away? It’s strange that I’ve never thought of this day as the Day of the Dead and never knew much about that tradition. On this day, millions of people will make annual pilgrimages to cemeteries and churches. Graves will be decorated with offerings of sugar skulls, flowers, or favorite food and beverages. Prayers are offered for the spiritual passing of loved ones.

Although I never celebrated the Day of the Dead, for some reason the past week has been an extreme time of reflection for me. On the drive back from my Alzheimer’s Board Meeting, I found myself reminiscing during the hour-long drive over and, again, on the way back.

Who would think something so simple as rolling dips in the road could bring back a vivid memory? Jim used to hit those dips fast enough that my stomach would feel funny. I drove past the house on Newland hill where we lived when our kids were little. I thought about them standing at the end of the driveway waiting for the school bus. I remembered Christmas, Halloween, and sitting around the dinner table. I remembered bits and pieces of the life we once had—before time marched on.

I passed the turnoff to Arrow Rock and thought of the good times we spent there. Remembered the time Jim wandered off during the festival and it took my sister, her husband, and me some scary moments before we found him.

Even before I drove past the cancer hospital, the drive alone made me think of taking my co-worker and friend, Diane, to Columbia for her treatments. That’s a double or triple memory. Diane’s favorite holiday was Halloween and it was with great sadness that the cancer took her on that day.

It is not unusual for a cemetery to evoke memories of loved ones buried there. When I passed Hopewell, my thoughts turned to Frank and Dorothy that we rented from when we lived on Newland Hill. I thought of Aunt Addie who wasn’t my aunt at all, but a wonderful woman who made the best of life in a wheelchair.

I’ve spent most of my life living within seven miles of where I live now. No wonder every curve, hill, and landmark made me think of the people who passed through my life, influencing me, making me the person I am today.

If we really turned back time today—not just for an hour, but could turn it back to a different time, it might not be the miracle that we would envision. Just think, one small change in our past would bring us to an entirely different destiny. We could drive ourselves insane with a thousand what ifs.

When a loved one dies, they take a piece of us with them, but they also leave part of themselves behind. We are left with memories, and we are changed. Remembering good times is a way to appreciate the gift of  love. A productive, happy life is based on what we were, how we cherish what we are now, and the audacity to believe the future will be filled with hope, happiness, and adventure.       

Copyright © November 2015 by L.S. Fisher
http://earlyonset.blogspot.com