There's a lot of us...

My grandmother had a saying, “It’s enough to make a preacher cuss.” She loved that phrase and used it every time she was frustrated or – as she would also say – exsasperatin’ over something. That’s pronounced ex-sas-per-ate-n. I’m sure she meant exasperating, but I like her version of the word better. It has character.

Caretaking is something I’ve done since I was a young girl. It was during my mother’s pregnancy with Evan (my fourth brother) that my grandmother became very ill with a kidney disease and came to live with us. She shared a bedroom with me. She shared and talked with me when the hallucinations, caused from her medications, didn’t have control of her brain. I loved her so much and wanted her strong, feisty qualities. For Grandma, having a kidney disease was not the worst thing about being sick. The worst thing was the loss of her independence. She hated being a burden. Eventually, Grandma was moved into a little cottage down the street. I spent my weekends tending to her while my aunt went out of town to work in a beauty salon.

The problem with caretaking is that, unless someone openly comes to your aid, you feel very much alone. I had a lot of family and they all helped me or advised me whenever I watched after Grandma. They were my support and my teachers. I always felt appreciated. But I was just a young lady, and my support system was comprised of much older women who didn’t have a lot of time to hold my hand. If they had had the time, they would have done the caretaking themselves. I was certainly not the first choice.

It is much the same for caretakers of end-stage alcoholics. We are seldom the first choice of caretaker in the eyes of the alcoholic. Heck, most alcoholics don’t even realize they are being taken care of. If they can’t acknowledge they are being taken care of, how can they appreciate or be grateful for having someone to take on the task. They can’t and they aren’t. It’s enough to make a preacher cuss.

Unfortunately, end-stage caretakers are different in that they don’t usually have a lot of people who are willing to lend a hand when things are difficult. The outside world gets tired of hearing the stories of wrong doings or absurd insanity. They just nod their heads and try to change the subject. What these outsiders don’t understand is that the constant reiteration is simply a way of reaching out for help. Oh hey, it’s not even a reach, it’s more like a cry out for help. The people you would expect to be “there” for the caretaker are not within reach or within the sound of the cry. Often they turn their backs and mumble something about making their own bed. It’s downright exsasperatin’!

If the caretaker is lucky, there may be a great Al-Anon group they can join. But, if you’re in an area like mine, there is only one in an area of 100 miles. And, my group, unfortunately, just doesn’t fit for me at this time and getting to the meetings is difficult. It does help to know that others in my town know who I am and what I am doing. For that I am thankful.

So it seems caretakers of end-stage alcoholics are really lone crusaders. We muddle along doing the best we can without much real knowledge of the true situation. We talk to anyone and everyone who will take the time to listen. We alienate people because we no longer have much to talk about except the horribleness of the situation. Everyone has advice. Everyone has an opinion. When we don’t take the advice or act on another’s opinion, we are deemed to be in denial. In some cases we are asked “How stupid can you be?” Well… I guess… by other people’s standards… we can be pretty stupid.

After awhile the caretaker begins to realize that the role they have taken is extremely lonely. They know they can’t be the ONLY one with this problem or the ONLY one who has made a choice to stay in this role. They are right. They are not the only ones.

I used to think I was the stupidest person in the world to take Riley back into my house. My brain and heart knew it was the right thing to do if I wanted to protect my daughter. But, I seemed to be constantly justifying the “why” of my actions. One part of me wanted to say – “Butt out! It’s none of your business.” And the other part of me knew I could not afford to alienate anyone who could possibly be a supporter in my cause.

It wasn’t until I started this blog that I found so many others in the exact same situation as me. It was comforting to know they were out there and they needed me as much as I needed them. They started commenting and e-mailing. I grew stronger with each one. I was energized by letting people know that there is help out there and that they could depend on others to understand.

I set up the Immortal Alcoholic page on Facebook and there was quite a bit of interest. But, people didn’t seem to post there very often. There was a group of faithful followers and that was good. But, I really felt there needed to be a more formal place, a meeting place similar to Al-Anon except for end-stager caretakers. I wanted a place for people to connect and support each other. I wanted a place for them to be able to vent.

Our Resource for Alcoholism Support of Family & Friends (OARS F&F Group) was created on Facebook as a private page. The only people who can view the comments on the page are members of the group. This provided some privacy and a means for the members to speak what is truly hanging heavy on their minds.

There are only a couple of rules about being on OARS. No one is allowed to be judgmental or critical of another member. There will be no hostility or derogatory comments. The page is like Vegas. What’s said there – stays there. That is until I remove it and I remove things often just to insure privacy. It’s a place where venting is not just tolerated, it is encouraged. Let it out – and then breathe!

It’s a small group right now, but it is growing. That makes me happy because it means people are finding they are NOT alone after all. They are not stupid or ignorant. The drummer they march to is not as unique as they once thought.

Originally, I only planned on visiting the page on Thursday evenings for the formal meeting. But, I’m finding that the members are not so much into the “meeting” as they are for the ability to write whenever they want. Someone almost always responds immediately or at least within a few minutes. It’s like talking to your neighbor through an open window about a recipe she shared with you. It’s comfortable, friendly, and if we could we would all meet in a mutually agreed upon city and have a cup of coffee.

Another nice thing about this page is that I don’t have to do anything to generate activity. I don’t have to give my input. No one is waiting on me. They just talk to each other. Imagine that – end-stage caretakers talking to each other!! I AM on the page daily and I try to post to comments often. But, it is gratifying to know that if I could not be there, it would go on without me.

So in the end, I guess you could say – I’m like my Grandma. I’m feisty, determined, and independent. But, I’m always willing to take support from wherever and who ever offers it. And, sometimes, OK – often -- I’m enough to make a preacher cuss!