ALZ title

There have been new discoveries in the Alzheimer's world in the past couple of years, encouraging and exciting discoveries, maybe the aging generation of today may not have to suffer the terrible plight of Alzheimer's and dementia. It may not be a part of your life now but at the moment it is projected to be one of the top 5 illnesses of seniors, ahead of heart disease. There are many horrible illnesses that affect humans but this is one of the worst in my mind because you die before your body does. Hopefully, the cure is just on the horizon. The following is my own personal journey through the Mordor of Alzheimer's. It is mine and does not reflect anyone else's. The symptoms and conditions of the disease can affect others in different ways, emotionally and physically. Some people and caregivers are more able to cope than others. I do not judge those that determine 24 hour facilities are right or those that choose to work and hire in-home help or stay home to care for a loved one. The variables change from family to family. The solutions one family chooses are not superior to another's. We choose the path that is right for us. Maybe you are at the beginning of the journey, in the middle or you know someone who is, I hope that you take away from this how wide path the Alzheimer's takes and it is not just the patient who suffers but all of those in their life become affected. I hope you take away the challenges caregivers face and that you understand the urgency for a cure.

It's been a few years since my husband passed away. Many times my family has said to me, "You should write about it, Mom.", but I haven't been ready. I wanted to leave it alone, not even think about it. When I see someone with it my heart fills with sadness and compassion for the whole family. This isn't a Nicholas Sparks novel and there is a spoiler alert- the story doesn't end well. One of the main characters dies and the other barely makes it out. Proceed if you will, but you have been warned. Why would I warn you at the beginning of the story? Because that's how it was. I knew the story's end from the beginning and I lived with the knowledge every day. My husband had Alzheimer's and he died from Alzheimer's. Many people think that Alzheimer's victims die of 'other causes', like pneumonia. No, they die because of the disease, it causes death by shutting off the brain one piece at a time. Imagine a tall skyscraper at night, all the windows lit in the offices, black skyline, no moon, and one by one, at first, the lights are turned off. Slowly, lights go out and the windows becomes dark. You think, that's not too bad, there is still light in other places I can just work in another place. As time goes by whole floors will go out all at once. Then you have to adapt again until ultimately and mercifully the entire building of lights goes black. You may think that sounds cruel, "mercifully the entire building of lights goes black" but that's the reality. I am not going to tell the usual Alzheimer's story of how sweet the patient was and how patient and devoted the caregiver. That would be a lie and if we want to understand the disease we need to be honest and the people involved need to understand the plight of the patient and the family. When you hear the diagnosis you think, "I can handle this. I'm tough." You have no idea how wrong you are and how devastating the disease.

Let me begin before the desolation. My husband was an intelligent, creative, thoughtful and funny man. He was the engineering director of the second largest printing company in the world with a staff of 75 people. I would meet his employees or their spouses in public places like the grocery store and they would say things to me like, "Your husband is the best boss I ever had." Or "Your husband is so helpful." He was fair and friendly and had the ability to find a person's strengths and bring that out for the benefit of the employee and the facility. While he was in charge there were zero accidents. He knew how to motivate people and people liked him. Then small, curious and seemingly insignificant things started happening and didn't make sense until years later when they were put together, the puzzle was complete- the disease had begun hacking away at his brain for at least 10 years, silently and insidiously. He lost his job because he started to miss things, forget meeting times, or misplace tools. We wondered why and we started going to doctors to see if something was wrong. There were no answers. He begin to accept lessor jobs because doctors would suggest, "It's stress. He needs to work at a job with less stress." In tandem with the unknown plaques inflicting damage on his brain the demon of undiagnosed PTSD and memories from his time at an EVAC hospital in Viet Nam begin to emerge. After many doctors and a couple of psychologists, one young doctor noticed on his chart that he was a veteran. "Have you tried the VA? I think they may be a better place for you."

Sure enough during the first visit the doctor diagnosed Delayed Onset PTSD. The doctor handed me a paper with 12 symptoms of PTSD and as I read it I thought, "This guy has been living in our home!" It fit to a tee. We were actually relieved because now we knew what we were dealing with and it is always easier to deal with something when you know the diagnosis. Or so I thought. The journey was just beginning and it was the springtime of the illness with no inkling of the severe winter ahead. There were prescriptions and meetings and counseling and therapy and group sessions things seemed fine and livable. We lived tolerably well for about 8 years until the return trip from a vacation. As I was driving in the car with 8 hours left to go until we were home my husband tapped my arm and asked me, "Do you mind if I ask you a personal question?"

"No, of course not." It was odd but I went with it and then he asked this next question and I knew something was horribly wrong and I still remember it like it was yesterday, in our car, driving through the desolate land of Nevada, in the late afternoon. He said, "I'm kind of embarrassed but..... What's your name and where am I?" and then he chuckled a bit like someone who is self-conscious about committing an error. My throat went dry, my stomach churned and I started to panic- I knew he wasn't joking. I knew that he truly did not know who I was, did not know that he had children, did not know where he lived- nothing. It was like he had complete amnesia. For the rest of the trip I told him about his life and he kept saying, "Well, imagine that." As if he was hearing it all for the first time. The next morning when we woke up in our home I asked him if he knew where he was and he looked at me as if I had lost my mind, "Of course, we're at home." He knew who he was again. My instinct told me that it is not normal for people to temporarily get amnesia for no reason. I took him straight to the VA and he was evaluated.

After waiting for the results of the tests the on-call doctor came in the room, rubbing his chin, pushed his glasses further up the bridge of his nose, visibly struggling to find the right words, "You have been a patient here for a long time and have had many tests. This is not the first time your wife has described memory loss and there is only cause left that it could be: Early Onset Alzheimer's. I'm sorry."  You might think I would have passed out at this moment or wanted to die but I felt nothing, I was too stunned. My husband forgot the diagnosis the minute we left the VA but I thought about it all the way home and thought, "Oh, well, I can handle this, so he will forget things, how bad can it be?" This is where the word 'mercifully' begins to comes into the story. By the time we got home his regular doctor was already calling us. "I just got your husband's chart and I am so sorry about the diagnosis. It will be very difficult but I want you to know that when Alzheimer's patients are diagnosed this young (he was 59 and had probably had the disease for 5 years) they do not live long, and right now you won't believe this, but it will be a blessing. He probably has 3- 5 years. I'm so sorry." Still I didn't quite get it and I was still thinking, "I can handle this. It's ok. I can deal with this." I was so wrong. I barely survived.

 

Part 2 of my journey will be posted in the next few days.

Deborah Baron

Deborah Baron

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