Alzheimer's Disease - Shirley's Story
Sometimes a very painful incident in your life can be the beginning of your life’s mission. Anger at some injustice has been the motivating force behind many actions. This is a story about Alzheimer’s disease, caregivers, unconditional love and a very long goodbye. Please come along with me while I tell my story.
Something About Shirley
I live on the Big Island of Hawaii, in Kona. I moved to the Big Islandfrom Long Island , New York in 1984 with my husband. We have worked hard to make a good and happy life for ourselves and we feel very blessed to call this "paradise" our home.
A Higher Power
I have been drafting this article for many, many months.
There is a higher power guiding me on this journey as I write and share my story with you. I am not a writer, anyone famous or well known. I am one person in this world and I hope to make a difference in the lives of some very special people.
The Devastating Diagnosis
My mother was a beautiful, strong and independent woman who raised five children by herself. In the last five years of her life she suffered terribly through Alzheimer’s disease. It literally broke our hearts to watch.
It all started in the summer of 1995. I took three months off work and traveled to New York from Hawaii to see if I could find out why Mom was forgetful, irritable and confused. She struggled to do simple tasks. I made an appointment and took her to a neurologist. The diagnosis was "early stage dementia". I remember sitting there listening to the neurologist as he told me: “It’s most likely Alzheimer's disease".
My heart was pounding, my stomach sank, my thoughts were racing and my head went fuzzy. All I could think was: "I can’t tell Mom this". I wanted so badly to protect her from the terrible news. At the time I never truly realized what lay ahead. It is probably just as well that I didn’t.
Struggling…Year After Year After Year
We struggled to care for my mother through all the stages of Alzheimer’s disease. It was so difficult and at times unbearable for both my mother and my family.
After several years of caring for Mom in our homes we had to face the truth that we didn’t know how much longer we could hold on. We were stressed and exhausted. Our nerves were frazzled. Our spirits were crushed from watching Mom struggle day after day. "Why does she have to suffer like this? I can’t watch this anymore," I screamed up at the moon one night. The moon beamed back as if to say: "I’ve heard this cry before my child."
We struggled with the decision over whether to let the professionals take care of Mom. We convinced ourselves that it was for the best.
We struggled the day we gave up Mom’s care. It wasn’t like we made the decision and felt good about it. We didn’t…there aren’t many options that leave you feeling good about AD.
Once Mom was placed in the care facility I struggled to get through my days. I worried about her daily and feared the worst.
We were shocked when we got the call that my mother had died in the Assisted Living facility. She was only there for six weeks!
"We should never have given up her care!" I screamed.
We suffered immense heartache and guilt when we got confirmation that Mom wasn’t cared for properly in the facility. How could this happen?
My struggle now is to heal and turn a personal tragedy in to triumph.
Alzheimer’s is like a tornado on the loose inside the brain, eventually destroying everything in its path and it takes so much more than just memories. Everything learned in life is unlearned. It is a progressive, degenerative, irreversible disease without a cure and death comes slowly. AD leads to death in about seven to ten years but can progress more quickly or slowly. It is a slow dying of the "physical light"…a very long journey and a very long good-bye.
AD is also very deceitful. It doesn’t hit full-blown for years so you and your loved one go on with your lives. Meanwhile the storm is brewing and slowly it builds. You can’t see major changes in the first stages so you don’t really know the destruction that is taking place in the brain.
Slowly you lose your loved one…in stages (this is so painful and heartbreaking for them as well as the family). You lose the ability to share your childhood memories, past events and happy times with your loved one. You lose the ability to carry on a conversation with them. Traits that are unique to them are lost. You suffer when they no longer recognize you. There is loss of the relationship, as you knew it, loss of their voice and then loss of the physical body. You lose so much before your loved one is actually gone. You grieve in so many ways.
When I was caring for my mother and it got unbearable I would stop and remind myself "it must be torture for Mom". Through it all you never want to forget how difficult it must be for your loved one.
Your loved one is so tormented at times that you pray for them to be at peace. There is no hope for improvement…they won’t get better, they will get worse. When they finally "journey home" you wish you hadn’t prayed for peace because you miss them so much. It is a roller coaster of emotions with unimaginable peaks and valleys.
I knew that Alzheimer’s disease affected memory but was not prepared for the true devastation. This disease is about confusion, memory loss, frustration, depression, stubbornness, anger, irritability, fear, anxiety, restlessness, nervousness, hallucinations, repetitious actions, mood swings, paranoia, hoarding and hiding things, lack of personal hygiene, loss of sense of time, impaired decision making, impaired judgments, combativeness, abusive behavior to self and others, incontinence, wandering, refusal to do activities once enjoyed, sleep reversal, inappropriate dressing, inappropriate behavior, isolation, intellectual inability, physical decline, lack of joy in life, impaired language, impaired motor abilities, inability to recognize loved ones, inability to express themselves. With a dying brain death comes slowly.
Some people with AD retain knowledge of themselves but live in memories of the past. My mother went back to using her maiden name and at times seemed to have no knowledge of having been married with five children.
Mom hugged me one day and said: "You are like a daughter to me and I love you". As I hugged her back, tears were streaming down my cheeks and I was thinking: "I am your daughter Mom!" Although she no longer recognized me as her daughter I was very grateful that she recognized me as someone she loved.
AD patients are commonly searching for their parents that died many years earlier. The present - their children, husbands, wives - often don't exist in their memories of the past.