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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 beginning to hear warnings 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 vaccination, 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