"36 hour day" and "Learning to speak Alzheimer's" arrived today....it's hard to put them down. I have so much to learn and understand, I hope it's formatted simple enough for me. I don't even know the difference between Alzheimer's, dementia, and just plain memory-loss. At this point, whatever the name of the disease my Me-Ma has, something, something that has made her lose some of her intellectual ability and the ability to think and remember. The ability to think before she says something and the ability to say something without thinking.
I want to learn to speak Alzheimer's. I want to learn to live in my Me-Ma's world. I want to learn that when her words "fail" her (she always says " I don't blame you if you want to leave, I'm not good company, because I don't know what to say or what to tell you) I want to be able to "listen" to her through her eyes when she tells me that.
Just recently, I have reached out and talked with several people who have loved ones living in the Alzheimer's world....I don't feel as alone. I now know there are millions and millions of "us" out there watching and grasping at straws to learn about, understand, be patient and not wear our hearts on our sleeves. I know we're not alone anymore. It is just so sad how devastating, irreversible and progressive this disease is. It breaks my heart to see how it robs millions of people of their language, reasoning, and memory. It destroys a lifetime of memoires, and it just seems to whittle away at the core of a person's identity.....I don't know, maybe it is just my pure selfishness, I don't know, but I feel robbed, robbed of my vibrant me-Ma, who loved to fish, who taught me how to play yatzee, who loved camping, who loved going to church and worshipping our Lord, singing How Great Thou Art, and Amazing GRace, who made the best ever peach cobbler and beans and cornbread with black-eyes and okra.
Even though I know Alzheimer's is the 3rd most costly disease after heart disease and cancer, there just seems like there is a hopelessness.. I don't know much, but I do know when I hear the words "this is not the person I knew", I am greatly saddened. I have heard these words on tv, read them on the internet, read them in the newspaper and I hear these words in person, in fact, I personally have said these words. This disease is difficult to understand and hard to accept.
I know some people can be so happy and child-like, not a care in the world, and be so happy-go-lucky, yet there can be such a range of negative emotions also. It can come on so powerful that it is equilvelent to a human tsumaini. Anger, sadness, feelings of hopelessness and the inability to cope apparently are so common. So, not being a part of the Alzheimer's world....it's easy to believe that the person you know, is not the person you knew. It's an easier approach to something that is very difficult to understand and accept.
I have come to accept that Alzheimer's is an illness. It is a disease of the brain. It seems to differ from most other diseases, being it lasts for years, even decades, and there is no cure. This disease changes the way a person talks, the way a person acts and behaves. We've personally experienced this and its hard, devastating and so painful.
I know my Me-Ma didn't sign up for Alzheimer's. She didn't ask to go into this new and bizarre world. She doesn't say the irrational things she has said with intent. I know her brain is not functioning properly. I know this is caused by the disease. This change in our Me-Ma is so dramatic and so enormous that it takes time to digest and understand and accept for that matter. I just pray that we will all become comfortable with Alzheimer's. For now, I just want to understand that Me-Ma's brain sometimes sends her the wrong signal quite often. And for now, I want her to use my brain when necessary. I just pray and hope I can accept and view her words and actions as her "new normal". After-all, it's a new world. It's Alzheimer's world, and in Alzheimer's world, you become more and more forgetful, and you move and do things slower and slower. It's not always easy to adjust to a slower and slower pace, but I know its my time to learn. It's my time to learn patience. And of coarse, its one of the fruits of the vine, and there is a definite upside to learning patience. Once I learn more and more, I can take this new found patience into the "Real World". So, it's a win-win....patience in the Alzheimer's world and in the Real World!
And I know, people with Alzheimer's have gifts to give. I know my Me-Ma has lots of gifts to give, after-all with all her strengths, all her wisdom, all her faith, all her love, and all her courage, how can I not be blessed? So, today, as I do in my own recovery, I will take "one day at a time" in her new world.
and this is all because of HIS AMAZING GRACE......
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