Alzheimer’s Lives Here- Life with Early Onset Alzheimer’s

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Life with Early Onset Alzheimer’s

 

Hello Greta,

I am 51; diagnosed officially with Early Onset Alzheimer’s in Dec. 2016. I have been suffering from symptoms that have been progressing for almost 2 years now. I lost abilities like multi-tasking, and had times when my mind was just foggy. My last job was working in customer service, with both phone and email, plus order entry. I did very well at my job until my last 3 months, and I was making stupid mistakes, plus struggling to do the multiple tasks expected of me. I would lose my train of thought, and enter the part numbers wrong. My boss was not forgiving, and this added stress compounded my problem.

I have familial essential tremor, which had gotten much worse, and I was under the treatment of a neurologist. He and I both blamed my short comings on my neurological medication. I quit my job because I could not handle the stress. I believe that everything happens for a reason.

The tremor in my hands has been a struggle at times, but had the tremor not increased, I would not be blessed with my wonderful neurologist. He has been thorough with all my testing, and he was caring for me when my father died of Alzheimer’s 2 years ago.

The disease runs on both sides of my family, and I made him promise to keep an eye on me especially, with the side effects that I was experiencing. After trying multiple medications, with all affecting my mind more than helping the tremor, he took me off all neurological medications, but still the memory loss and confusion continued to progress.

I knew that when I got older, like 60-70, that I might be at higher risk, but never dreamed that it would occur now. My doctor wanted an explanation of my progressing issues, and did a genetic test. It showed that I had the highest risk gene possible for Alzheimer’s, and coupled with my father’s earlier issues with Alzheimer’s, I guess I was essentially doomed to get it. I felt like I was kicked in the gut when I got the test results. It was really tough telling my children and sister about my diagnosis right before Christmas, less than 2 years after losing dad. My husband and my family are trying to cope, and support each other.

We knew from prior family experience this disease hurts the family as much as the person with the disease. I definitely now have a unique perspective of being a care giver, as well as now the person with the disease and trust me, both sides suck equally. It was painful, especially when my dad no longer knew me, and I dread the day that my husband and kids experience the same.

My father denied the diagnosis of the disease, and refused his medication until he was so far gone that he could not fight. I promised my family that I would do everything in my power to fight it. Medications, puzzles, journals, diet, and to keep my independence longer, I am working on getting a service dog. This disease is a thief, and even just having it can cause you problems.

I know from my experience especially with dad that people tend to avoid folks that have unusual behavior, because it makes them uncomfortable. I also found out the hard way that older family dogs can have issues too. My 7 year old pit mix first started displaying extreme aggression toward strangers a few months ago, and now is starting to lash out by growling at me on a bad day.

After researching her behavior and speaking to animal control as well, I found she is having difficulty accepting the unpredictable person that I am becoming. To her, the owner that she always knew is not there when I am having a bad day, and she doesn’t like it. Animal Control told me that you would not believe how many times that dogs must be surrendered, because they cannot accept the changes involved with Alzheimer’s.

It is mind boggling the amount of lives that are changed in that diagnosis of one person. ~ Davida Sassler Sipe

This is our reality. Alzheimer’s Lives Here.

“Life with early Onset Alzheimers”
A poem by Davida Sassler Sipe
Middle age, the fall of my life with memories to make and grandchildren to take to the park. Even the brightness of the day did not betray the seed of darkness slipping in to plant within my brain with its insidious plans for my future. As years passed by, the darkness within grew stealing words that I once easily knew. The fog of darkness clouds my mind leaving me to say a sentence at least five more times. 
Day by day, I feel a small part of me fade away. Still in my early fifties, what could it be taking “Me” from me? The doctors do tests to determine a cause but at first, the darkness only makes them pause. There is no single test to name my unwelcome guest. Finally, the diagnosis is made and the darkness possesses a name. “Old Timers” given by most but Alzheimer’s by medical folks.
How can this be? Old age has not yet hit me. I am still in the prime with lots of time and years ahead. It has no right, no reason or rhyme. The same darkness that stole my grandparents and father’s mind I will not allow it to take mine. I ask the doctor for a pill or a cure to fix this curse, but any cure is still in the works. The available pills only slow the dark disease’s work. Puzzles, diet and journals are the only weapons that I have to fight back the confusion within. The darkness smiles knowing it will eventually win.
My life, once steadfast and filled with hope, I now dread knowing the fight ahead. The darkness within will extinguish all of my light. Family and friends will become frightening strangers as the disease slowly eats away at my mind. My memories will be gone as the years pass away leaving the darkness to rule all of my days. Life will hold me hostage and death shall in the end be my friend.
I lament not for pity or mention only to bring my dark disease to your attention. Awareness will breed knowledge and a cure, if not for me then my children for sure. Scream to the rooftops and all that will listen, it is time for a cure to remove the clouded minds and make them glisten. The time is now to end this horrible disease. Let’s all work together to bring it to its knees.