Saturday, May 8, 2021

I’m in a Hurry and I Don’t Know Why

 



My sister-in-law Dinah used to say, “The hurriered I go, the behinder I get.” I often think of this quote. I’m always in a hurry to check off the items on my to-do list. I’m in such a hurry that (as scary as it is) the to-do list doesn’t always make it to paper.

 

My volunteer life has kicked back in full force. Unfortunately, the yard didn’t get that memo so we’ve been mowing a few days after each shower when the lawn is dry enough. At first, my mower needed a new battery, then Harold’s mower broke down.

 

After a hot, sweaty time outdoors, I went to check on my flowerbed at the front of the house. I walked around to the garage and both doors were down. I really didn’t think Harold would lock me out on purpose just to prove that I shouldn’t go outside without my cell phone as he constantly nags me to do.

 

I went around to the front door. The doorbell should get his attention, but the doorbell has been broken for quite some time. I knocked knowing that he couldn’t hear me, but the dog would. Sure enough, she got her “company coming” bark going and eventually Harold came to unlock the door. What nerve. He chewed me out for being locked out without my phone.

 

After several days of clicking items off my calendar—Thursday happened. First, a zoom call with our Walk to End Alzheimer’s committee. Check. After a half-hour, I had to leave that call for a conference call with my Alzheimer’s advocacy group. During the call, I mentioned the futility of trying to contact my congresswoman for a district meeting before the Advocacy Forum. Jerry told me he had a contact and would try to set up a meeting. Check.

 

As soon as I ended that call, I drove to town for a visitation for a neighbor. Outside the funeral home several veterans solemnly held American flags. I wasn’t sure I was going to stay for the funeral until I looked at the program and saw the song choices. I knew this wasn’t going to be an ordinary funeral when I saw the songs were “House of the Rising Sun” by the Animals and “What a Wonderful World” by Louis Armstrong.

 

Gene was a Vietnam veteran with two Purple Hearts and a Bronze Star. He also enjoyed Mountain Man re-enactments and working on a forge. He was dressed in his mountain man clothes and several of his friends showed up in their outfits. A few of his friends shared amusing stories and fond memories of Gene. One recited a Native American prayer. At the end of the service, the veterans filed down the aisle and saluted. It was a touching, unique, and personal send off.

 

After the funeral, I returned home. My husband told me he couldn’t get hold of anyone at the congresswoman’s office. Foolish me, I thought he was trying to get in touch with her office for me. Instead, he was calling about another matter. While we ate a sandwich, his cell rang and I saw the number of her office. He chatted with Steve about his issue and I motion frantically for him to not hang up. Harold handed the phone to me and I told Steve who I was. “I just talked to Jerry,” he said. I proceeded to go over the Alzheimer’s Association federal priorities with him. Another task finished.

 

After walking the dog, I headed off to my businesswomen’s club meeting. On the drive home, I breathed a sigh of relief that I had made it through the hectic day.

 

After a year’s lockdown, I wanted life to return to normal, but maybe just a little more laidback. After all the funerals and memorials I’ve attended lately, it makes me realize how precious life is and how being in a hurry to get things done can interfere with life’s little pleasures.

 

My mental checklist needs one more item: relax. I need to take time to smell the flowers, pet the dog, play my uke, and visit with family. I need to slow down. Hurrying through life is way too tiresome.

 

Copyright © May 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Thursday, April 29, 2021

A Secret Chord

 


April 18 rolled around just as it did every year, and like every other year, I faced the anniversary of Jim’s death. He left this world sixteen years ago.

 

I called up my sister–in-law Ginger and asked if she wanted to go to the cemetery with me. This year I delayed my visit to the Missouri Veterans Cemetery by one day to accept a check from John Knox Village East for the Walk to End Alzheimer’s.

 

After the photo, I went by the Pigeon’s Nest Floral Shop to pick up a basket of flowers to leave in front of the columbarium. Ginger held the flowers in her lap during the short trip to the cemetery.

 

I always feel a closeness to Jim when I visit the cemetery. The pond makes me think of how he loved to fish. He was happiest with a pole or a guitar in his hands.

 

The day was windy and the half-mast flags were flapping in the breeze making a lonesome sound. The wind rustled through the trees and the weeping willow swayed and wept.

 

When I shut my eyes and listened with my heart, I could hear a secret chord. It told me that although we lose souls we love, we gain others. Though we go through dark times, or minor falls, we have the promise that we will be lifted up and embrace life again.

 

I look at minor falls as the everyday setbacks. How you deal with those setbacks will foreshadow how you deal with heartbreaking tragedy. If you  have been able to set your  everyday troubles aside and press forward, you develop life skills.

 

Being a caregiver was the most difficult and stressful part of my life. Each day was different, and what worked one day wouldn’t necessarily work the next. Interspersed through the sadness were moments of joy.

 

Each of us has a secret chord. A few notes of a special song can lift us up and mentally set us down inside a memory. The memory may bring comfort, happiness, or sorrow. In time the chords that once brought tears to our eyes, may bring a reflective smile, and eventually a real smile of joy as we remember the good times.

 

In the cemetery, the secret chords of a love song that Jim sang especially for me traversed through my mind and soul. That song brought peace, joy, and thanks to my heart.

 

I am thankful that Jim taught me how to love, how to persevere, and how to turn pain into strength. He taught me how to hear the secret chord.   

 

Copyright © April 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

 

Tuesday, April 20, 2021

Ambiguous Grief, Ambiguous Hope

 


Alzheimer’s caregivers know ambiguous grief even if they don’t know exactly what the term means. When a loved one has dementia, we grieve for the losses the disease brings although the person is still living. Our loved one is still alive, but we mourn the person he or she was.

 

Ambiguous grief occurs when we have a loss without closure. During Covid-19, countless people worldwide lost loved ones and had no closure. Our loved ones were in nursing homes and we couldn’t visit. Family members and friends died in hospitals and we couldn’t hold a hand and provide a comforting presence.

 

I don’t know if I could have handled not getting to see Jim when he was in a nursing home. I’m so glad that I was not in that situation. I could say that I would have brought him home if at all possible. But would I have? It’s hard to judge what you would do in a situation when you didn’t have to live it. Probably the most judgmental sentence in the human language is, “Well if it happened to me, I would have …”

 

Loved ones died and services were delayed, or maybe we didn’t feel comfortable going to funerals and had to watch them online. There was plenty of ambiguous grief to go around.

 

I always thought of ambiguous grief as having no defined beginning or ending. Last March my brother-in-law Larry passed away. After his services, we mingled, but not as much as we normally would have. We were just hearing talk about a pandemic. “Well, if it doesn’t happen,” I told my son, “at least this will be good practice for us.”

 

I had no clue what the next  thirteen  months would bring. Our family had loss after loss without normal closure. I made video tributes for family and friends, to find a small amount of closure for myself. I cried alone, but in some measure felt I was reaching out to others whose hearts hurt too.

 

After receiving the vaccine, my life is slowly moving toward hope. My calendar, although a fraction of pre-covid bookings, scares me. I look at it and think to myself that I’m not going to be able to do everything.

 

This hope has no defined beginning. Even after I had the immunization, I am psychologically in shutdown mode. I don’t have the enthusiasm or energy to return to all of my normal activities.

 

Ambiguous hope; cautious hope, but hope just the same. I’ll take it.  

 

Copyright © April 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ


Wednesday, April 7, 2021

Defining Moments

 


I read a book one time where the author said she knew her mother had Alzheimer’s the day she killed the cats. Sometimes, it takes that bizarre moment before we admit that our loved one is more than a little forgetful, or has become eccentric.

The younger the person with dementia, the harder it is to get a diagnosis. After that defining moment, the people closest to them will notice a bevy of behavior and reasoning changes.

 

Jim’s defining moment was the day he forgot his social security number, which was in itself alarming. He was in the service when the Army switched from serial numbers to social security numbers. I knew his social security number, so the day he forgot, I supplied it. The next question was “what is your birth date.” After a pause, Jim’s reply was, “I guess I can’t remember that either.” Ding, ding, ding—alarm bells rang inside my head and in my heart. I knew something had gone wrong in Jim’s brain.

 

Jim was forty-nine years old. Initially, the doctor thought he had a reversible condition. We had all the tests he could possibly have done and chased several different diagnoses. In time, there were other moments: he tore things apart, but couldn’t put them back together; he forgot how to read and write; he mowed the grass and never lowered the blade; he asked me to tune his guitar, then, he forgot the hundreds of songs he knew, or if he knew them, he couldn’t verbalize the words.

 

Jim became more and more silent throughout the disease. He forgot how to tell his corny jokes, his tall tales, and how to carry on a conversation. It was loss after loss.  

 

When I was a caregiver, I had choices. I could be weak, or I could be strong. I could walk away, or stay. I could be uncaring, or be kind.

 

You, too, have many choices as a caregiver. You need to choose carefully and know what feels right, or what will haunt you. You will have many defining moments.

 

Hopefully, you will make the right choices. If you do, you must remember the rule of oxygen. If you have ever flown, you are given some solid advice if the plane loses pressure and an oxygen mask falls in front of you: if the person with you needs assistance, put on your mask first and then theirs.

 

The biggest choice you have to make as a caregiver: ignore your mental and physical health, or take care of yourself. You are of no use to a loved one who desperately needs you if you deprive yourself of oxygen. So, take a deep breath and move forward one day at a time.

 

Copyright © April 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Wednesday, March 31, 2021

New Life


After a deluge of cold rain, we had a warm, sunny day. When I looked out my window, I saw the grass turning green. When I walked the dog, I heard birds chirping, geese honking, and squirrels barking. I saw irises popping out of the ground and tall grass surrounding the solar lights that line the sidewalk. Weeds and wildflowers are taking over my flowerbed. At night, I heard the occasional owl hooting, the peeping of tree frogs, a chaotic drone of various insects, and coyotes howling.


Animals that had been dormant for several months made their presence known. An adventurous blacksnake slithered across the road. After a long winter with a record-breaking cold snap, life awakened and surrounded me with its presence.

 

I, too, have been dormant for the past year. I’ve stayed at home so much that it’s an adventure to drive to town to check the mail at the post office. I have been getting several months to the gallon of gas.

 

Since Christmas, I’ve been working on getting my office back in order. I’ve pause to go through some of the old photos. I often smiled at the younger versions of “us.” Some photos brought back poignant memories that bring tears to my eyes.

 

As if my thousands of photos weren’t enough to deal with, we found two big boxes of Ream family photos. I worked for a full day just trying to bring some order to the jumble of photos. I learned quickly that an only child has about a hundred times more photos taken than when you have five brothers and two sisters.    

 

Life has begun to gradually change. My mom spent a few days with us and some of my family dropped by to visit. The next day, we had more company. As we sat around drinking coffee and telling stories about old times, it was almost as if the pandemic was just one of those long nightmares and we were slowly awakening from it.

 

Oddly, I was handling the alone time quite well until I had company twice in one week. The, the house seemed too quiet, and I felt an empty place in the pit of my stomach.  

 

My tasks multiplied as I tried to catch up with my volunteer work. I’ve spent hours working on the SBW website and trying to complete a project for the past president that should have been finished nine months ago.

 

I’ve had two conference calls, and a Zoom meeting within the last two weeks—for three different groups. Funny how Zoom has become a part of the new normal.

 

The Zoom meeting was our first Walk to End Alzheimer’s meeting. Yeah, I’d like to meet people face-to-face, but there’s something to be said about being comfy at home and still get the business done.

 

I’m wondering how I’m going to fit my volunteer work into my schedule. I have so much to do that the hours just fly by. It seems that I have a full time job without a lunch hour, breaks, or regular working hours. It is not unusual for me to look at the clock and realize it’s nearly midnight and I haven’t done anything to relax.

 

I recently heard a speaker who said that to deal with stress, especially during the pandemic, we all need a creative outlet. No matter what time of day (or night) I have a break, I pick up my ukulele and randomly strum chords, or run through a few songs. Either way, ten minutes of singing or playing my uke will bring my stress to a manageable level.    

 

Copyright © March 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ 

Saturday, March 6, 2021

Memory Week

 


The first week in March was Memory Week for the Alzheimer’s Association. Typically, we celebrate one day, Memory Day, and hundreds of Alzheimer’s advocates don purples sashes and share personal stories, Alzheimer’s facts and figures, and the legislation that we support.

Due to COVID-19 concerns, we did not make our in-person visits this year. On behalf of the 120,000 Missourians who are living with Alzheimer’s and their 319,000 caregivers, we asked our state senators and representatives for support of the following legislative issues:  

 1) Fund Alzheimer’s Grants for Respite: We asked them to support House Bill 10 (Department of Health and Senior Services) to maintain $450,000 for respite and care-related products. Ninety-nine percent of persons who receive respite care keep their loved ones at home longer. A two-month delay in placement could save the state more than $2 million in Medicaid nursing home care.

 2) Secure Initial Funding for the Structured Family Caregiver Waiver: Funding for this program is also included in House Bill 10 (Department of Health and Senior Services in the Division of Senior and Disabilities Budget.) Signed into law by Governor Mike Parson in 2019, the Structured Family Caregiver Act is an agency-directed model to ensure availability of cost effective choices for persons with dementia. The waiver was approved in February 2020 for an initial cap of 300 participants.

 3) Missouri Alzheimer’s State Plan Taskforce: The Taskforce will assess the challenges of Alzheimer’s disease and related dementia within the state and maintain an integrated state plan to overcome Alzheimer’s. HB 989 will update the 2010 plan through input from Missouri residents, integrated with latest research and best practices from other states. The Lt. Governor will chair the taskforce and deliver their report to the Governor and General Assembly no later than June 1, 2022.

 4) Transparency of Pandemic Reporting: In May 2020, the Alzheimer’s Association released a set of recommendations on improving the state and federal response to COVID-19 in long-term care facilities. Four specific items were recommended: (1) testing, (2) reporting, (3) surge activation, and (4) support. All cases of COVID-19 in these settings need to be reported immediately, accurately, and with transparency.

When Jim developed dementia, I was working full-time, and family caregivers, including his mother, watched him while I was at work. His caregiving became too difficult for his mother, and I hired professional caregivers to supplement family caregivers.

The only financial help I received when Jim was at home was respite funds through the Alzheimer’s Association. Home health care is expensive and although respite funds were limited, it was helpful. I would have loved to find quality day care for Jim. I found a place that watched him for a while, but when he took off for home with his guitar over his shoulder, they refused to take responsibility for him. Although I had to work through several issues with home health care workers, I was able to keep Jim at home for about six months longer.

Placing a loved one in long-term care has to be one of the most difficult decisions a caregiver and family have to make. When I made the heart-wrenching decision to put Jim in long-term care, my mind told me it was the best way to keep him safe, but my heart argued that I had failed.

Too often loved ones with Alzheimer’s outlive the primary caregiver. It is nearly impossible for one person to provide the level of care necessary for a person in the late stages of dementia without sacrificing the care partner’s health. I know now failure would have been to keep Jim at home after exhaustion and burnout kept me from being the best caregiver I could be. By putting Jim in long-term care, I had chosen the option that was best for him and for me.

Copyright © March 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Friday, February 26, 2021

Sunshine and Hope

 


After suffering with my knees and other arthritic pain for a few months, I went to the doctor Monday. I wore my Alzheimer’s T-shirt that says “I Hope. I Fight. I Walk. The ortho doc  shot a different version of cortisone in my knees. I’ll admit that it was a little bit ouchy, but by the next day, I was feeling the difference in my knees. By Wednesday, I felt the difference throughout my body. My hands were not as swollen and felt better, and amazingly, I lost five pounds.

 

Wednesday was a warm, sunshiny day and that alone would have been enough to raised my spirits. Another event that made Wednesday a red-letter day in this household was that Mike from MediEquip came and installed our custom curved stairlift. It was a bigger thrill than any carnival ride to zoom to the basement and back up without putting strain on my knees.

 

For the past year or so, I’ve been the one who traveled to and fro to the basement. For the past several weeks, I’ve ventured to the basement once a day to work on organizing my office. “You get the Wi-Fi in the basement,” I told Harold, “and I’ll move everything back to the basement and use my office.” The basement router had quit working about the same time my knees had. I’ve had a “temporary” going on permanent office on my kitchen table ever since.

 

“I can’t seem to get the Wi-Fi to do what I want it to do upstairs, much less downstairs.” We’ve gone through three different brands of routers and even the most expensive one had been dummied down enough that it won’t do everything we want it to do.

 

Still, the stairlift gives me hope that the basement will be accessible for both of us. I’ve worked through the pain long enough.

 

I have real hope that I have as much protection against Covid-19 as possible. When I told a friend earlier in the week that I was getting my second vaccination, he asked, “Aren’t you nervous?” Not at all! Just excited to put an end to this yearlong ordeal. It reminded me of being fastened in a seatbelt on a long bumpy flight, and finally the seatbelt light dinged and the pilot said, “You are free to move about the cabin.”

 

My life has been filled with surreal periods of time and the past year has been the most recent. The outside volunteering and social activities I thought was necessary didn’t seem as important. I discovered new facets of my personality as I retreated to being a homebody. I have always craved quiet time. Unfortunately, I still allowed outside pressure affect me. These activities continued in conjunction with an unusual amount of household disasters, meal preparation, cleaning, daily tasks, new responsibilities, physical pain, and mobility problems interfered with my plans of more relaxation.

 

In some ways, this past year has reminded me of caregiving for Jim. Only the caregiving stent of surreal time was tenfold this one.

 

During the most difficult of times, I still find joy. Sunshine and vaccine gives me hope. I look forward to a bright, sunshiny spring after the long, dark winter.

 

I’m ready for life to return to normal. If we can all accept the new normal for a few more months, maybe this virus will disappear as other deadly viruses have in the past. We may all have PTSD when this is over, but the main thing is to do our best to turn our faces toward the sunshine and give ourselves reason to hope.

 

Copyright © February 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

 

Sunday, February 21, 2021

Trash or Treasure?

 


I’m fighting a paper war and I think I might be losing. My furniture is back in my office after replacing the water-damaged carpet with porcelain tile. I have returned some of the pared down files to my file cabinets, but I still have tubs galore to go through.

 

The goal is to spend at least an hour a day going through the boxes in the family room to decide what to throw away and what to keep. I’m trying to be heartless. When I see newsletters, articles, scrapbooks (mine and others), and books upon books I try to determine what is still important enough to keep. I don’t want to waste office space with projects that have been put on hold for ten years. 

 

To complicate matters—my dumpster is full and has been for two weeks. It’s past time for the pickup, but they just keep putting me off, the weather, you know. Yes, I know, but tell it to the dumpster and the full trash bags waiting for a place to be stashed.

 

I try not to spend a lot of time on the paper war—just glance, toss, or file. I finally tackled Jim’s file. But, I couldn’t help but be sidetracked with the memories pressed within the pages. I kept everything in the bulging file—at least for now. I found his long lost original birth certificate. I could remember it had a few weird things on it. First off, his middle name was supposed to be Dee, not D. I know for certain that Jim wasn’t the first born of twins or triplets. And he had three older siblings, not two. I still didn’t find his brain autopsy report. I thought if I went through the file carefully, it would appear as mysteriously as the long-lost birth certificate.

 

My next stumbling block was Virginia’s file. My mother-in-law was my “other mother.” I can’t imagine how heartbreaking it was for her to watch Jim’s decline. Until her health failed, she looked after him. She cried when I told her I was going to hire caregivers so that she could take care of herself. I don’t know if she was relieved, or upset that I didn’t think she could watch after him.

 

Jim was getting to be a handful. He kept taking off down the road and Virginia would follow him in her car. She would call me on her “car phone” and keep track of him until I could come home from work. He just wouldn’t get in her car. Another time he took off all his clothes in the yard and she couldn’t get him to put them back on. I assured her that since he was in our yard on a country road that anyone driving by would just have to look the other way. By the time I made it home, she had him inside and dressed.

 

Other than my mother and sister, no one even came close to being as good with Jim as his mom was. Being Jim’s caregiver was a labor of love for her.

,

After Jim passed away, we had an informal service. Jim’s friend Gary was officiating and when I told him some stories for the services, he said he wanted me to tell them. I didn’t think that was appropriate, but both of my sons agreed with him.

 

After Jim’s services, Virginia told me that she wanted the same kind of service when she passed away. When Virginia was nearing the end of her life, I went to her house one day and asked her to tell me some stories.

 

In her file, I saw the document that I wrote for her services. I read through the pages and laughed at the memories of her younger days. By the time I reached the end, my tears were dripping onto the page.

 

My heart ached for the days when all the family gathered at Bill and Virginia’s to share a meal, play cards, or enjoy music in the yard. The laughter and love of those days are treasures firmly entrenched in my soul. Those who have left this earthly home are only a memory away.

 

Copyright © February 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Sunday, February 7, 2021

Super Sunday

 


On Super Bowl Sunday, we Missourians are super happy to have the Chiefs in the big for the second time after their long dry spell. Jim was a dedicated fan and proudly wore his Chiefs gear through the years of heartbreaking losses. He always looked forward to the next year when he was sure they would go to the Super Bowl.

 

For years, the Chiefs playing in the Super Bowl was on my “bucket” list. I was beginning to wonder if I would live long enough to see the big day. I would say, foolishly of course, “I don’t even care if they win. I just want them to make it!” Well, I reneged on that statement immediately after they won the Lamar Hunt Trophy.

 

I truly regretted that Jim didn’t get to see his beloved Chiefs go back to the Super Bowl. When Jim was a teenager, he boxed at a Boy’s Club in Kansas City where he met Lenny Dawson.

 

When Jim was in the early stages of dementia, he decided he wanted a Chief’s coat. One weekend, we looked everywhere in town, but he didn’t find the one he wanted. I went to work on Monday and when I got home, Jim proudly showed me the Kansas City Chiefs coat he had bought.

 

“Where did you get the coat?” I asked.

 

“Kansas City,” he replied. “They didn’t want to let me in. Said I needed a card.”

 

“Was it Sam’s?”

 

“Yeah. I told them I wanted a Chief’s coat.” He went on in his broken vocabulary to tell me that he had told them he was a Vietnam veteran and had fought for freedom. Freedom, which to him, meant they shouldn’t keep him out of a store he wanted to go into.

 

After more prodding, Jim finally related that someone made the decision to let him in the store, and he paid for the coat with his debit card.

 

“How much did it cost?” I asked

 

“I have no idea,” he replied.

 

“Well, it is a nice looking coat. I guess I’ll find out how much it was when I get the bank statement.”

 

Some years the Chiefs were so bad that fans were wearing bags over their heads at the games. Jim, on the other hand, sported his collection of Chief’s shirts at the nursing home, unaware of who was winning the game on his TV. He could see the Chiefs playing and that was good enough for him.

 

As the Chief’s go the Super Bowl today, it is on the heels of the news that former Chief’s head coach Marty Schottenheimer was moved to a hospice care facility. Schottenheimer, now seventy-seven years old, was diagnosed with Alzheimer’s in 2014. I hope he gets to watch the Super Bowl today. Although he coached several different teams throughout twenty-one seasons, I’m sure he will be rooting for the team wearing the red shirts.

 

Super Bowl Sunday—and the Chief’s are playing. Doesn’t get much better than that.

 

Copyright © February 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Sunday, January 31, 2021

Upside Down


I think maybe the best way to describe how my world has been for the last twelve months is “upside down.” I’ve told people jokingly that I think my brain has turned to mush. I can’t seem to keep the days, or sometimes months, straight anymore. I routinely misplace my to-do list and wander about the house trying to remember what important tasks I needed to do.

A few days ago, Harold was talking to me, the dog was checking out the floor, and I was putting on my socks. Harold made that “ah,ah,ah” noise like you do when someone is doing something wrong. I looked at the dog fully expecting her to be trying to eat an un-eatable object.

 

“You are putting a sock over a sock,” he said. Sure enough, I had one bare foot and one with two socks. That’s typical for the way things have been going lately.

 

Upside down meant we could no longer play music at the nursing homes, but it also meant that I became brave enough, or foolhardy enough, to post videos of “Linda and her uke” online. I would never have considered such a thing before the pandemic.

 

We’ve had a year of living Murphy’s law…if it could go wrong, it would go wrong. Right now most of our basement, including my office, is upside down. That should start being righted when the flooring crew shows up later this week.

 

My body feels upside down. After a few months reprieve from the arthritic pain, I’m having a major flare up, when I need to be physically active righting my office.

 

It seems that every so often we have to go through these times of upheaval. I crave peace and the days when tragedy stuck only occasionally. I’m being worn slick by chaos and death. People I loved died, and I couldn’t go to their funerals, but more often services were postponed until later, meaning when the pandemic is under control.

 

I seldom go to town, but during the past week, I’ve gone twice. The first time I went to town was to get the Pfizer vaccine for Covid-19. I’ve never been so excited to get a shot in my life.

 

Saturday, I had to go to town in the pouring rain. I was amazed at the heavy traffic and the number of cars at restaurants. Life was going on, as if there were no tomorrow, or pandemic.

 

I’ve lived through upside down times before. For ten years I watched Jim change from an intelligent, loving husband who loved to sing and play his guitar, to a silent man who depended on others to provide the most basic care. After he passed away, when I left work and headed toward home instead of the nursing home, I felt the emptiness and loss wash over me in waves of pain. It took time, lots of time, for life to seem normal again.

 

The thing about upside down is it forces an entirely different perspective. My mom and I were talking about how life has so drastically changed during the pandemic. “I think people will never go back to doing all the things they did before,” she said, “but it would be nice to go into the store and buy my own groceries.”

 

I agree. I don’t think I’ll ever fill my life with so much outside activities again. There have been distinct advantages to spending so much time at home. I’ve already filled spaces with other work and hobbies. I’ve had time to think about what I’ve missed the most—spending time with friends and family.

 

The past twelve months brought a multitude of changes, and change hasn’t always been bad. In fact, creative solutions are often better than the “way we always did it.” For example, the drive-thru Cooperative Annual Meeting was a favorite of mine. We heard all the pertinent information through the car radio, voted for by-law amendments and directors, picked up our door prize (credit on the electric bill) and were done in record time.

 

The “walk everywhere” Walk to End Alzheimer’s had its good points. As my friend WyAnn said, “We don’t have to get up before dawn to set up.” Also, we weren’t biting our nails over the weather. The downside was not seeing other walkers, or enjoying the atmosphere and excitement of working together toward our goal. Another downside, we weren’t able to raise as much. That was partly due to people going through hard times and not being able to have normal in person visits or normal fundraisers.

 

The exciting news is that we may be able to have an in person Walk to End Alzheimer’s this year. It will be more work and I’m not sure how I’ll fit that into my new schedule.

 

Maybe by fall (or sooner!) we can be right side up again and return to some of our pre-pandemic behavior. We’ve developed new skills and habits, so we can select only those activities that are meaningful to us. Lifestyles can be adjusted to embrace the best of both worlds.

 

Copyright © January 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ 

Sunday, January 17, 2021

I’m for Love


Tuesday morning, I had a strange dream, which isn’t unusual for me. I dream a lot and while I forget many of them, some dreams nag me throughout the next day.

 

In my dream, I was working on a word search puzzle, and a man sitting nearby looked over my shoulder. “I see an important phrase,” he said. I asked where and he pointed it out.

 

I opened my eyes and looked at my cell phone to see if it was time to get my first cup of coffee. I forced my aching body out of my nice warm bed and went to the kitchen. I carried my first cup back to bed to relax before walking the dog and cooking breakfast.

 

While I was eating breakfast, I grabbed my pen to finish the word search I had started the day before. As soon as I looked at the puzzle, I realized the phrase the man in my dream had pointed out to me was “I’m for Love.” Well, it wasn’t in the puzzle in front of me, but I knew it was the title of an old country song. I couldn’t remember much about the song but the chorus.

 

After breakfast, I sat in front of my computer and thought I’d check out the lyrics and chords for the song. I typed in I’m and up popped “I’m for Love lyrics and chords.” Now if I’d said it aloud or had previously searched for the song, that wouldn’t have been quite so strange.

 

I picked up my ukulele, played the song, and sang it. Wow, those words were uncanny for these times.

 

A lot of people are for love, but sometimes it’s not easy. I always called an Alzheimer’s caregiver’s love “unconditional” love. I was used to having love reciprocated, but when Jim lived in the world of dementia, he didn’t show his love anymore except during rare moments of clarity.

 

Our marriage wasn’t perfect, but dementia made it more imperfect than I had ever imagined. No matter whether we argued (loud talked), worked through depression (his and mine), or struggled to pay the bills, the one constant in our marriage was love.

 

I’m for love. Without love, life seems kind of pointless. Love comes in many forms whether it is romantic love or love for family, friends, or God. It can even be unconditional love. Sure, when you put your heart out there, you open yourself up to a world of hurt, but more importantly, you can find the secret to the puzzle of life. It’s there in plain sight.

 

I played my ukulele and posted “I’m for Love” to Facebook. I thought with all the oddities that led me to that song, its message might resonate with someone that needed it. Oh, sure the part about being against cats in the house might have offended cat lovers. Truthfully, I shared my house with a cat for nine years.

 

I promised to tell in a blog post the story behind choosing that song to sing. As if I would forget, I opened up my blog folder to write this post, and discovered the lyrics and chords of “I’m for Love.” Huh? How did that get in the blog folder? I opened my song folder where it should have been saved, and sure enough, the song wasn’t there.

 

A simple cut and paste fixed the error. Now if I can just cut the negativity of today and paste it to yesterday where it belongs, I’ll have much more room for love and happiness.

 

Copyright © January 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ
 

Sunday, January 10, 2021

Light the Dark

 


We started the New Year in the dark. An ice storm had hit during the sleeping hours, and when I woke up at 5:30 in the morning the lamp flashed off and on, then off. Our emergency lighting came on. I immediately called the electric cooperative to report the outage.

 

In that moment, I regretted that we still did not have an automatic switch on our generator. The generator shed was practically in the yard, but with a layer of ice, neither one of us was capable of traipsing across the yard to light the dark.

 

At daylight, we called for reinforcements, and Harold’s cousin came and flipped the switch. Our neighbor who used to tell us when the electricity came back on has a generator too. Through our conversation with the neighbor, we learned that the cooperative had an app for that.

 

Ice is a good example of treacherous beauty. Looking out at the glistening trees and icicles from a warm house is a feast for the eyes. Trying to drive on slick roads, or to walk on an icy sidewalk, is dicey.

 

I’m not ashamed to admit that I used to be petrified to drive on ice. One time when Jim was in the early stages of dementia, I had him drive me to work. I trusted his driving much more than mine. I eventually learned to navigate the car on ice-covered roads, but it made me nervous. The first hurdle was getting up enough speed to go up the grade to the east. Sometimes, the best plan was to head west and go down into the dip and up the hill.

 

I’ve spent my life trying to light the dark. Even during the darkest times of dementia, I sought the bright moments—when Jim’s eyes lit up when I walked in his door at the nursing home, when the shower went well and he enjoyed the Rubber Ducky song, or the rare times he spoke.

 

The past year was filled with personal darkness. I lost two beloved sisters-in-law and a brother-in-law. I lost friends and saw other friends cope with their own dark days. We grieved together, and we found the strength to live with the loss and walked into the light together.

 

Our country has fallen into dark days. We’ve watched in horror as the pandemic has swept across our nation, sowing denial and harvesting lives. Covid-19 claimed the lives of celebrities, and more painfully, our relatives, friends, and neighbors.

 

We are a country divided. Too many choose politics over family, extremism over reasonableness, hate over love, conspiracy over unity, and unfortunately darkness over light. Polarized social media and opinion news programs have further divided us. Each of them preaches to the choir inciting distrust and violence.


For those of us who lived through the sixties, we’ve seen this before. The Vietnam War was a huge divider in this country. It was a life, death, and patriotic struggle. The war ended and eventually, the country healed.

 

I don’t know about you, but I don’t want to live in the darkness of disease and civil unrest. The only way out of this darkness is to keep moving toward the light. 

 

Copyright © January 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ