Sunday, September 21, 2008

Alzheimer's Awareness Day and Songs On Sunday

I apologize in advance for another heavy post, but this was timely for the calendar. This is a little long, but I wanted to share some of my experiences with Alzheimer's Disease and put a face to it, because it is something that people still joke about and don't really understand.
One of my blog friends, Snowbird, reminded me that today is Alzheimer's Awareness Day. The photo above was taken on my vacation, at Hurricane Ridge in Olympic National Park and I chose it because it serves as a metaphor for the havoc Alzheimer's wreaks in a person's mind. The fog rolls in. Occasionally it parts and there are a few lucid moments, but eventually the fog is so thick, one cannot even recognize one's self. If you check Snowbird's post, you will find excellent links and information.
In today's post I want to share with you a little bit of my experience with Alzheimer's Disease, as well as how praising God in song can be a ministry to others.
An important woman in my life was Dorothy Lucille/Ann Larimore (aka Clancy)Duren Johnson. As her name indicates, she had a complicated and stressful life. Born January 2, 1920 in Yakima, Washington, she was christened Dorothy Lucille Larimore. Her parents were poor, an incorrigible mostly Irish man named Melville Larimore and a feisty Polish/Slovakian woman named Annie Dipko. Her early life was marred with arguments, alcoholism, financial distress, the deaths of a sister and an infant half brother, a divorce, time in Seattle Children's Home after running away, and an often harsh stepfather. As a young woman she held her 4 month old daughter Patty in her arms while they rushed to the hospital. Baby Patty never made it there. Her marriage was disappointing. She made a lot of poor choices, one of which led to my father being born out of wedlock. Later she married my Grandpa and they raised three sons - all three of which went on to bring heart ache to their parents. This is the sad part of the story. If I left you with this impression, she would be flat, tragic and unmemorable.
Dot, as she was called by her friends and family, LOVED life! Sometimes I think those who survive great heartaches, live life fuller once they put their minds to it. She was stubborn - if she put her mind to it, she got it done.
She was a mother to four children and grandma to 7. None of her great grandchildren were born when she was alive. In the above picture she is with my Uncle Larry on the left and my Dad on the right, about 1950.
During WWII Grandma organized bomb shelters and helped at the Catholic school where her son attended. She was a volunteer and organizer, a baker and a lover of dance and music, especially from the swing era. Dot was the "go to gal" if someone was sick or injured, which earned her the nickname "Doctor Johnson."
Dot embraced life and was not afraid to work hard, get dirty or have fun. As a girl, I loved to hear tales of Grandma standing on a chair to have an eyebrow pencil line drawn down the back of her legs as she prepared to go to a dance (no nylons during WWII and this mimicked the seam). My favorite story was how she killed her mother's favorite turkey who was mean and chased the children to the outhouse. One night she had it! She beat the turkey with a broom stick. Part of her punishment was plucking him, but she never had to run from the meany again. In the above picture she is helping Grandpa's cousin Ray Beigle carry supplies in for hunting camp.
Dot was a hunter, fisher, camper, hiker, joker,Cribbage player and all around great cook. Having worked hard during the war (her sister Eve was a "Rosie the Riveter"), she held her own in a tough world and wasn't afraid to work and hunt with the men. I believe everyone in this picture is now gone. This is hunting camp about 1948. The old man in the front is my great great grandfather, Loren Harmon Smith from Newaygo county Michigan. He brought that branch of the family to Washington about 1907. He died the year after this picture. His son, daughters and grandchildren don't know it, but the deer head they had mounted as his last - Dot actually shot, but used his tags! He maintained the bragging rights!
As I said, there wasn't much she couldn't do if she put her mind to it. From her I learned to crochet, enjoy looking in second hand stores and garage sales (my daughters sleep under a butterfly quilt she bought me once at a garage sale) and from her I also picked up the bad habit of eating for comfort. And I'll admit it, she spoiled me! At the time I was the only granddaughter and she enjoyed having a little girl. When I was little, I loved nothing better than to spend time with Grandma Johnson and thought of her as my "fun Grandma", though in my later years I realized that was unfair to both of my grandmas.
She was one of the most stubborn people I ever met. When she was mad, watch out! One of my favorite stories about her stubbornness comes from my Mom. She hated Elvis and would complain about his music and gripe that he couldn't sing. Turn him off! Then she went in the kitchen and started working and a song came on the radio. She just had to pipe in, "Now, there's somebody who can sing!" What she didn't know is that the man on the radio WAS ELVIS! LOL
She was stubborn, but she was also a Mother in Law. She is pictured above with one of her daughters in law, my Mom and my beloved kitty Cinders. Although I'm sure she was frustrating at times, she taught my Mom a lot as a young woman, wife and mother.
She was passionate, giving, teaching, loving and fun!
She grieved greatly for the losses in her life and I have often thought that she would be one who would truly understand the ache of my grieving. Underneath the gruff exterior and all her capabilities was a tender heart that few saw. Raised a Catholic, she always longed for greater connection to God, but I believe her own actions/guilt kept her from attending mass or moving forward in her faith.

And then, after Grandpa almost died of heart infection, she became a patient. Back in 1982 Alzheimer's Disease wasn't commonly known. All we knew is that the color had drained from her life. The fog crept in. At first it was embarrassing, awkward and confusing. That's how it felt for us. I can only begin to imagine how she felt inside, knowing that something wasn't quite right and losing a battle to keep all of what she knew to be herself. Initially we could still interact with Grandma and enjoy spending time with her. Later she became paranoid, physically violent and angry.

Before Grandpa took her to the nursing home, where she lived only one week before dying, I would go out to their house to give Grandpa a break and take care of some of her personal hygiene. Grandma had always been nicely dressed and loved to accessorize. Her hair was styled and she always wore the right shade of lipstick. Having extremely wavy/curly hair that I spent hours straightening with a hair dryer and curling iron, I had no idea how to put curlers in her hair. I fumbled and learned. It was hard for me to bathe her as she looked up at me helplessly, somehow knowing that I should not be bathing her as she had bathed me as a child.

Some days I hid my tears. I knew if she saw my pain, it would concern her and worry her. But, gradually I looked forward to those bathing times. Behind the closed door of the bathroom I could speak to her, woman to woman and gently love her in ways that I was not confident to do in front of a family of men who sneered at God. I sang. I didn't know what to sing, but I knew she loved music. So I sang...

Jesus loves me, this I know.

For the Bible tells me so.

Little ones to Him belong,

They are weak but He is strong.

Her body visibly relaxed and I continued with The Old Rugged Cross, Amazing Grace and whatever other hymns came to mind. I didn't know what Catholics sang, so I didn't know what or if she would recognize any of them. So many times she rocked me, cuddled me and sang to me as a little girl and now as I sang hymns to her, we both felt some of the fear melting away. She was a captive audience in the bath tub. So I told her that God would always be with her and that when she was afraid, she could ask Jesus to help her. My faith was still young in those days and if I had to do it again, I would have read the Scripture to her boldly and I would not have cared how many godless men were listening to me!

One of my most reassuring memories was when we were in the hallway and she pointed to a picture. It was a gaudy, horrible 3D pictures of Jesus praying at Gethsemane in an even gaudier gilt frame. A faded palm leaf from Palm Sunday long past, rested behind the corner. She stopped and pointed and looked at me. She pointed again, repeatedly with her index finger, but in spite of her best efforts could only utter in awe, "Him!" My eyes welled and I nodded affirmation. Him. That's who I had been singing about. That's who I had told her would protect her and comfort her. Him. She repeated, "Oh! Him!" in an admiring and loving tone. It was then that I knew and understood that God transcends time, disease, modern medicine, our understanding and He never abandons us even if by all outward appearances it seems that we could never understand!

Shortly after that she became sick and it was time to place her in a nursing home. Grandpa couldn't handle it alone anymore and in a couple months I was off to college in another city. It was too much.

Towards the end, she knew Grandpa's name and my name most of the time, but not always. She knew we belonged to her and searched our faces for help, recognition and escape. She loathed the nursing home and hours before she died, she grabbed my dress, nearly ripping it and screamed, "Theresa! Don't leave me!" It was the hardest thing I ever did - walking down that hall and out the door as she screamed my name! That evening we received a call. She had been strapped in a wheel chair because she was so agitated and angry; she rocked herself to the point where she had a heart attack. She loathed being caged, imprisoned and neglected.

If you know a caregiver of someone with Alzheimer's Disease, please take the time to stop and talk to them. If appropriate, check and see if you can assist them in some way. Today there are all kinds of programs, some free and some paid, for caregivers to have respite. Our church has one called The Club. Many state and county agencies can provide assistance, but most of all families with Alzheimer's need love from every day people. Prayers are always welcomed and this is something anyone can do!

If you know someone with Alzheimer's Disease, do not avoid them. Treat them like a human being. After all they really are! Do not embarrass them or shame them. Do not assume that because the wires are scrambled in their brains that they do not on some level understand how you are treating them. If appropriate give them a HUG! Sing to them the praises of the Lord. Read God's Word to them which is Living and Active! I am thoroughly convinced that people with brain disease and altered states of consciousness can still hear God speaking to them!

Please, if you lose your keys or misplace your papers, don't make a joke about having Alzheimer's Disease. It's a serious disease. It's no joke. And it certainly isn't funny.

Sadly, our society in general is very rude and lacking in their care of the elderly and anyone different. Alzheimer's Disease can strike anyone. It is not only the disease of the aged. My Grandmother likely began having symptoms in her late 40s. She died at the young age of 67. Alzheimer's is no respecter of race, age, bank account, creed or religion. There is some evidence that an active brain can prolong the onset of symptoms. Knitting is one of the activities that can be helpful! But there are no guarantees. The medical community doesn't know as much as they would like to about Alzheimer's Disease, but there is at least one type which is hereditary. That is a scary sentence for those of us who have lost loved ones in the fog. My neurologist told me that the testing is not generally advised unless Alzheimer's Disease is suspected as a diagnosis because a person could have the gene and never have the disease. Having a positive result could cause a person to live in terrifying fear. So, I have not been tested and likely never will.

A good read about Alzheimer's Disease is Aging With Grace, which chronicles the Nun Study. And a fiction film from Billy Graham's World Wide Pictures, A Vow To Cherish, is a heart wrenching portrayal of early onset Alzheimer's Disease as well as an example of how love is an action, not a feeling.

I hope you never experience it in your family or in your person. But, if you do, please do not isolate yourself. You are not alone. People care. Sometimes people don't know what to say. Sometimes they are afraid. But don't try to go it alone. And by all means, don't try to do it without God!

Today, Grandma, I remember YOU for all those whose memories are buried. Today I lifted my voice and hands to Heaven as I sang and I remembered you.

No comments: