May 10, 2015

Happy Mother's Day

An enormous thank you to all the mothers out there who raise their children with love and support; who teach them things about life that they may never learn in school such as compassion and strength.

Thank you and happy Mother's Day to the mother figures in my life, and there are many of you, who stepped in without being asked or forced; who gave a needed hug or a needed scolding when such an occasion called for it. I am grateful, beyond measure, and there are no words that could truly define my appreciation.

If you are one of those lucky people with a mother figure - whether by birth or by association - who is your best friend, your confidant, your inspiration, please don't take her for granted. Call her up today if you live far away, take a ride to see her if you don't. Spend the day enjoying her laugh and the memories your share. Life can change in a minute and tomorrow is no guarantee. You just never know.

*NOTE: In the paragraphs to follow, I have written about a very personal experience that fails to produce the rainbows and butterflies that one might expect on this day. By the time this post goes live, I will be in CT visiting with my mother, under circumstances that are hard to explain without divulging the detailed information below. I am choosing to share the information in an attempt to reach out and support others who struggle with this day. I reserve the right to delete any comment that I deem as inappropriate, bullying, offensive or unsavory and will do so without hesitation.*
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The last year and a half have been inconceivably difficult for me as I have been on an endless roller coaster of emotion and I just can't seem to catch a break. Between moving to South Carolina and managing the guilt of leaving my entire family in Connecticut, to the constant worry that comes with my family members appearing in and out of the hospital over the past few months, to the most recent chaos that required a trip home in the middle of blizzard season, I have struggled to just be content. It has affected me, and those closest to me, in an immeasurable way. So I am working hard this year to try and see the brighter side of things and to appreciate all of the wonders and amazing opportunities and people that I enjoy in my life. And today, I'm stepping out of my comfort level a little to be very open and honest with you.

In December, my mother was diagnosed with a condition called Wernicke-Korsakoff Syndrome, more commonly known as "wet brain". It is a long time coming, as my mother has struggled with alcoholism and depression for a number of years. But when I visited her over Thanksgiving, she could not walk, could not carry on a conversation, could not remember basic information, wasn't eating or sleeping, and her eyes were crossed in a very unnatural way. After a few days of realizing this was not just typical intoxication, I called an ambulance and she was ultimately admitted to the hospital.

I have been reluctant to share that information here for a number of reasons, not least of which is judgement from members of my family and the public eye. But in the difficulties that have arisen from this condition - the time spent researching, making court appearances, establishing estate accounts, sorting through a (literal) mess of paperwork, talking to health professionals on her behalf, dealing with an endless flood of phone calls and guilt trips and making choices for her, all while struggling to determine if anything I'm doing is even remotely "right" - I have decided that hiding the information is selfish. I have hopes that if I share the information with you, perhaps others may be inclined to start a discussion about this condition and to learn to recognize its symptoms early. Or better yet, that those plagued by addictions like alcohol will know that it is real, it can happen and does, and that it's not too late to get help.

Without getting into too much technical information, Wernicke-Korsakoff Syndrome or "wet brain" is a combination of Wernicke's Encephalopathy and Korsakoff Syndrome/Psychosis (KS) and can be caused by a number of things, not least of which is the over-consumption of alcohol and the under-consumption of the vitamin B1, thiamine. Of the side effect associated with the disease - problems with gait and stance, hallucinations, confusion and confabulation - the most notable is that people with this condition are often afflicted with an inability to turn short term memories to long term ones. This is referred to as "anterograde amnesia".

The physical shortcomings and confusion can be attributed to the Wernicke's aspect of the condition, but the more serious effects, such as brain damage and alcoholic-onset dementia, are contributed to KS. Statically, the chances of recovering completely from the symptoms of Wernicke's is about 20% with abstinence from alcohol and a regular diet and that it can take up to 24 months before recovery is fully evident. The symptoms of KS, however, are said to be irreversible.

The few studies that are out there (and at this point, I have read most of them) contain entirely conflicting reports. Some suggest that my mother could recover and regain the ability to learn. Some just say she might not get worse. But none of them explain how to care for someone with wet brain or give any kind of advice for dealing with the aftermath. Sources simply say that long-term care may be required and thus far, this has been the case. My mother is currently in a nursing home. She is only 54 years old.

This road that I am on is a lonely one, not only because I am my mother's only child, but because even the seemingly endless niches of the Internet have failed to provide me with any kind of usable support. I have discovered very few resources for people like me: the children of alcoholics trying to manage the aftermath of their parent's poor choices. Most children of addicts become addicts themselves, or alternatively, distance themselves so far from their parents that they no longer speak, much less try to help them. The split is almost 50/50. And because I have chosen neither of those routes, I feel as though I am working my way through a dark tunnel with no end in sight.

The general lack of information about this condition is likely the result of it being so under-reported, as sufferers often die before they can be diagnosed. Knowing what I know now, I imagine it affects far more people, and far more families, than we could ever begin to realize. And although my mother is the one who has been diagnosed, it is almost as if I have been diagnosed as well. I may not be sick, but not unlike second-hand smoke, the disease has affected me in a toxic and irreparable way. I am lost, feeling hopeless, alone, and like I cannot do anything right.

I am sharing this openly here not to cast a shadow over the happiness of others on this day, but because I care and want children of addicts out there in this situation to know that they are not without some company. And while there are times when I just don't want (or know how) to deal with the madness anymore, I have decided that it's okay to feel that way. Tomorrow is another day and in time, I know I will figure it out.
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If you or someone you know is struggling with addiction, 
there are resources available. Please, don't wait.

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4 comments:

  1. Replies
    1. Thanks, Al. Feels like a losing battle, especially lately. But I'm trying!

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  2. I just spoke to someone about this condition back around Easter. She has a daughter with hydrocephalus. She was explaining that while visiting someone in a nursing home she came across a man who was diagnosed as having dementia. She spoke with the family and it turned out that he had the same condition as your mother. They have put him on medications and it has reversed many of the side effects of the condition. Alex and I will be praying for your family. This is definitely a condition like hydrocephalus that lacks funding and research to find a cure and bring awareness to others about this disease. I hope that you find peace in the small victories your mom makes every day.

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    Replies
    1. Thank you so very much, Jenn. I appreciate that. My mother has been treated with thiamine and other vitamins, and it has reversed the original ocular distortion and she is much, much more lucid than she was when I discovered her back in November. If you didn't talk to her often, you might think that she was just really forgetful or that she wasn't paying attention. The psychiatric doctor I spoke with said that the level of brain damage she has incurred at such a young age is disheartening. But the research I've done suggests that it's possible to see improvements over the course of up to 2 years. So I haven't given up hope yet that she'll continue to improve. Right now, we're at a bit of a stand still and haven't seen any significant changes in a month or two, but I'm not counting anything out. :) Thank you for your kind words.

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