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Providing non-judgmental and non-criticizing support for family and friends of end-stage alcoholics through one-on-one coaching, support groups, blog posts, workshops and public speaking.

Wednesday, February 1, 2012

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!

11 comments:

jo said...

like you, i have been a caretaker of someone all my life. someone had to...there was no one else but me.

and today i heard the same misinformation again. "asd long as your A drinks..no one will help him or you" geee,,thanks a lot. it made me ANGRY. so because we help a addict we are not worth anything?

i wish i could go to the OARS. i dont trust it..i been told to shut up too many times. or judged too many times. i hope it helps others. i think its a great idea. i am sorry i angered you, linda, back when. i thought you wanted traffic on the facebook page..is all. now i dont trust tho..and this is the only place i really post. its prob done for now too. lol. oh well. once im told something...im too afraid to try anymore in a group.

i guess i dont understand the need to shut me up. why cant i talk? i dunno. i just know many, many dont like it. so be it.

today is a bad day..i am back to being the idiot whore from my spouse.

well, its a safe person to be. its too scary to wish for support and try it again, only to be rejected even by others who understand.

i hate being so alone. just me and the Lord. its enough.

i wonder tho,,,should another need me...will i lash out in return? or will i help..knowing they all have rejected me before? i hope i do it Gods way..and not my way. i dont know tho. i will see when it happens.

Linda (The Immortal Alcoholic's Wife) said...

Jo –

I’m very sorry you feel that you cannot trust me. We all have to make our own choices and I respect that you have made yours. I hope you have a better day tomorrow. It sounds like you are having a repeat of what you described in the guest posting you made on October 30, 2011 titled as “Sticks and stones…” I hope things will eventually get better for both you and your husband.

Linda

Gerry said...

I have found that making videos and posting them on you tube where Doc can see how he looks and sounds has been a deterrent and also inspires him to try to make sense and be more rational, especially when he is on camera, and he is more convinced that he does come across as arrogant and quarrelsome, when he has had too much to drink or is very hungover from being sick. It is also a way of reaching out to others, as I have posted many videos on my channel dealing with alcoholics and their problems, since my dad was an alcoholic as well as two husbands, and two of my companions. I relate to this kind of man and dealing with his problem because I have been familiar with it since birth. My dad's brothers and some of their sons had the problem (like the Irish)only they were of Scottish descent. They drink a lot, too. We have many ways of coping. My channel is GerryKing40 on You tube where you will find my many videos on the problem of alcoholism. I am all for a Facebook page where caretakers can help each other, or anything that works. I am sorry Jo is not getting more support, but getting support does require some behaviors of civility or otherwise brawls could take place. That reminds me of family discussions over this which have turned into huge screaming family fights. They did not help in that case.

Karen E. said...

This post hits home..as most all of them do! We are getting tired and a bit concerned. My mother is falling every other day..but now it is face plants..her forehead has a terrible laceration above her eyebrow... SHe refused to go to dr. I did what I could with butterfly clips. Amazingly she heals pretty good...but she has fallen twice since and opened it back up..making it worse. Her nose is probably broken....the last fall was at 330am this morning... We are wearing down.. next fall I am taking her to hospital..if only for a break from her..if they will keep her...things are tough here... Atty and counselor says we need a doctors take on this....Not looking forward to starting all over..sobriety after hospital stay (if she survives detox) then drinking all over again within days.

Linda (The Immortal Alcoholic's Wife) said...

Gerry -- I do so much enjoy watching your videos. I've tried to put a link to your site on my reading list, but it hasn't worked. I think I'll just put it in the other "related links" type area.

Riley also enjoys watching Doc and hearing what he has to say. If we lived close by, they would be great friends. So they could talk their nonsense to each other and we could have a pleasant chat over coffee. Wouldn't that be a relief?!!?

Linda (The Immortal Alcoholic's Wife) said...

Karen -- You're absolutely right. The decision to push them into detox has far reaching consequences than just the alcoholic getting dry. It's a cycle that gets worse each time. At some point a decision must be made when it is time to let the alcoholic do what they do by not intervening in the process. We must ask ourselves -- "can I go thru this again?" And again. And again. For me, I stand by my decision to not call 911 until Riley is unconscious. If he makes it after that -- great. If he does not -- it will be over.

Syd said...

It's good for people to know that they are not alone with the disease. Getting help with support groups, 12 step groups, any kind of group is a good thing.

Karen E. said...

Linda: That was our decision too. BUT its getting worse than we thought..she looks abused..face lacerations, eye swollen shut..dememtia...she doesnt know her birthdate, the year, the president.. IF someone came to the house and called DCF..what would happen..we are worried, scared.. She is eating pretty good, barely makes it to bathroom..wears depends..we are wearing down..with no options. help! I DO NOT want to start over..will not start over... but am so over cleaning puddles of blood and looking at her..my mother..she is not yellow, says her gut doesnt hurt, eats...this could go on for years. help.

Gerry said...

My heart went out to Karen E. who sounds so desperate with her mother's alcohol problem. I always read the comments on your blog, Linda, as I find them very interesting and telling me that I am not alone in struggling with an alcoholic who is in his older years. My recommendation to her and to any alcoholic's caretaker is to engage your mother as much as possible in dialogue that expresses what she was about without the alcohol so defining her. I am also very interested in what Riley is still capable of saying, and I think it is a fantastic idea for Linda to put some of his reactions to her on the side. We daughters always tried to engage our dad in intellectual discussion even if he ended up shouting because of some brain damage undoubtedly. The more you can stimulate and encourage the alcoholic to try to talk at their best, the less miserable for you. I am sure when Riley is talking well he reminds Linda of all the reasons she was drawn to him in the first place. Doc is a regular on my videos, and he comes alive when he gets to think up clever responses to my criticism on camera for which I praise him and acknowledge that in some ways he still has the scintillating brilliance he was known for in his youth. Try to think of ways to draw out your mother even for very short periods and get her to think. They still have brains, they are still complex human beings, but so many times if a person is drunk they may be completely dismissed as non entities. Keep reminding them they are human. Remind her of old memories you have of her when she was functioning better, anything to present a more positive reaction to her! I think conversation is very important in dealing with the alcoholic.

Karen E. said...

Thanks Gerry, But my mother is not very communitative..she doesnt remember falling 5 min later.. I tell her to use her walker and 5 min later she tries to go to the bathroom without it..There is no brain left..except can u get me a drink and something to eat (after eating a full bowl of spaghtetti 4 min ago!).. and I admit.. i dont give it alot of effort..communicating anymore..its a waste of my breathe..she made this choice..she chose to drink instead of enjoying life, her kids, grandkids..she has a substantial estate..could travel, etc..she just wants to drink and stay in her bed. and her wish is for me to take care of her and watch her kill herself.. and be left to deal with the consquences.

Gabriele Goldstone said...

I act as my alcoholic's external hard drive - his does not function. Because it's in my best financial interests - I do what is required. I also do it because no one else will. I don't do it out of love or a sense of responsibility.

How many times have I wanted to believe in his recovery and given him another chance? I can't keep doing it. I now watch the money and think of me. He'd drive me into bankruptcy.