Sunday, May 17, 2009

The Face of Alzheimer's Disease Is Changing....

Alzheimer's Disease is no longer a disease that just affects the elderly. Above is a photo taken of my Mom in the very early stages of her battle with Alzheimer's Disease. At the time this photo was taken we were not yet aware of what was going on with my Mom. She was becoming more forgetful and the having more episodes of "walking into the room and forgetting why she went in there in the first place" type instances. Her Dad had passed away several months before this photo was taken of my Mom, so we just assumed she was under a lot of stress. Near the end of 2005, my Mom still felt like things were just not quite right, and she felt like something was really wrong. In 2005, my Mom had just turned 50. Her Grandma had Alzheimer's and died at the age of 81, and my Mom's Dad was showing early signs of the disease when he passed away at the age of 72. So, my Mom made an appointment with a neurologist to see what was going on with her. My Aunt and I went with my Mom to this appointment and shared our concerns about possible Alzheimer's, since we obviously have a family history of the disease with my Great-Grandma and my Grandpa having the disease. My Mom went through a series of questions the doctor asked her, which she did not do to well with at all. The doctor told us she was "too young to have Alzheimer's". Those are words I will never forget. Because going into the doctor appointment I was concerned since I had heard of people getting the disease earlier in life. He never sent her for further testing even though our family has a history with the disease. He diagnosed her with Pseudo-Anxiety and Depression. His reason for her being diagnosed with depression is because of her Dad passing away in 2003. I will admit a part of me was a bit relieved thinking okay this is just depression we can work through this and my Mom will get better. So after many visits to a psychologist and a counselor things were still not getting any better. In fact, they were getting worse.

For almost 2 years my Mom went for the counseling and even tried different anti-depressants to try and find the right combination. All the while she just kept declining with her short term memory. And we were even starting to see some changes in her long term memory. At this point she no longer knew the birth dates of any of her children (she has four children and could always tell you the date and time we were born). She always knew how old we are and now her mind was just blank when it came to that. She couldn't even manage to make a guess at how old we were. Yet, if she would hear a song from her childhood or when she was a teenager she could sing the song word for word. She can hear a song from the 70's and 80's that she knows and is able to sing it. But then then it came to her finances she was no longer able to even manage a checkbook. Something she had done before I was even born. Growing up my Mom was always the one in control of our family finances and now she could no longer even balance a checkbook. In July of 2007 we went to see a different neurologist and after his initial visit with my Mom he sent her for more testing over the next several months to find out what was going on. I knew that this time if this Dr. did not have my Mom go for additional testing we would be going to more well-known hospitals. I didn't care if we had to drive 3 hours away from where we live or where we would have to go. So after several months of different tests, blood work, MRI's, etc. my Mom was diagnosed in December 2007 at the age of 52 with Early-Onset Alzheimer's Disease and we were told she was in the middle stages already of the disease.

For me when all the testing was going on with my Mom, I thought I would have a bit of relief that just knowing what was going on with my Mom. There was even a part of me that felt like if this came back to really truly be depression and not Alzheimer's a part of me was kind of upset with my Mom, because I just wanted to shake her by the arms and be like "snap out of it". And then I thought if it isn't depression and it is Alzheimer's then we can put her on the medicine and that will slow things down and it might even help a little. I also thought if it was Alzheimer's then I also wouldn't be upset at my Mom because it isn't something she can just snap out of. The not knowing for 5 months was a really hard time to deal with. So many conflicting emotions to say the least. No one ever wants to hear their loved ones has a disease that does not yet have a cure. And one that you are powerless to really even stop. You are at the mercy of the medical world to find a medicine that can hopefully slow down the disease and hopefully one day find a cure for this disease as well. When my Mom was diagnosed I find myself really struggling to make sense of all this. And even now I still am not able to make sense of this disease and why it had to happen to my Mom. I struggle all the time knowing that my Mom is not able to really enjoy the life she has and she is no longer the Mom I grew up knowing.

Since my Mom's diagnosis, she has been on Aricept, Namenda, and the Exlon Patch. She is currently on the highest dosage possible for the Exlon patch and is also taking Namenda as well. My Mom's pharmacy actually had to special order the Exlon Patch dosage that my Mom needs because they never had to fill a prescription with a dose that high for someone before. Even with the dosages being increased like they have for my Mom, these medicines have yet to slow down this disease. My Mom has deteriorated mentally with this disease pretty quickly. Right now she is still in the phase of the disease where she is aware sometimes that she has forgotten or that she is not able to follow through with even the simplest of instructions or things that came second nature to her. This disease has left my Mom a shell of the person she used to be. She was the person who never knew a stranger, who everyone loved to be around, and she had the ability to make friends easily and she had many friends. She loved to have her family around her and had many holiday parties and cookouts at her house. She was always loving, kind, and encouraging. Now it is rare that we get to see the person we've always known. She was an incredible Mom and so I find I struggle greatly with all that I've lost in having my Mom like she was before this disease. My Mom does not deal very well with having Alzheimer's. Instead of trying to live life and take it all in and be as much a part of it as possible, she hides herself away. She rarely goes out of the house and often times sleeps the days away. There are days she will not even get out of bed because she doesn't want to deal with yet another day. She no longer goes to most family events because she is so paranoid that people are talking about her...and really no one is talking at all, they just want her to be there. But because of her own insecurities she rarely goes to anything. This disease not only robs a person of their memories, it can even alter the persons personality in ways you cannot begin to even understand. This disease does not fight fair. It is an incredibly ugly under-handed disease. It takes the things that mean so much to a person. My Mom is now only 53 years old and at the age where she should be enjoying the middle part of her life with her husband now that her children are all grown and out of the house. She should be able to enjoy her grandchildren and being the Grandma she was able to be the first 5 years of her eldest Grandson's life. She should be able to enjoy the fruits of her labor into raising her children to become the adults we have become. But instead she is now battling Alzheimer's at the age when she should really be enjoying the life she had built and worked so hard for.

I am sharing this because I want people to know Alzheimer's can happen at an earlier age. Alzheimer's does not discriminate against age, race, gender, sexual orientation, or religious beliefs. There may not yet be a cure for this disease, but if we work together by bringing more awareness to this disease, we may just be able to find a cure before it is too late for my generation and I can only pray if not a cure for my generation, then a cure before it is to late for my daughter's generation. We owe it to our children to find a cure, so they no longer have to worry if Alzheimer's disease will affect them. We can no longer sit by and believe that this is a disease that only effects the elderly. Please help in joining the fight to find a cure for Alzheimer's.

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