Wednesday, July 4, 2012

I hereby declare...

Today is Independence Day. I’ve already celebrated our country’s most patriotic holiday with my family on the Outer Banks, but today I’m going to have another celebration. Today’s celebration is for my own independence.

As the wife and caretaker of an end-stage alcoholic, there is no independence. Everything is done based on the needs of the alcoholic or the needs of protecting the home and others from alcoholic behavior. No matter how detached you are, there is still this invisible chain between the caregiver and the alcoholic.
My independence has taken a long time to achieve. Even now, I still have that invisible chain attached. But the chain is lighter in weight and doesn’t chaff me where it is attached to my body.  I’m doing things I want to do based on my own schedule. With Riley in the nursing home, I am able to get a sense of freedom.  The lighter weight chain is the one that has me going to the nursing home and visiting Riley every second or third day. The chain is about monitoring his care, providing direction, and attending doctor appointments. Before the chain was just a burden, now it’s productive. I guess that is what makes it seem to weigh less.

One of my commenters suggested I had had a “change of attitude”. I’m not so sure that my attitude has changed at all. I still think Riley is immortal. I still will protect my daughter from taking him into her home. I still feel the demands of fighting perceptions and sharing my knowledge and experience. If anything has changed it is my ability to see the possibility of a more productive and pleasant future.
These past couples of weeks have been very productive and I’m excited to report that the first ever real-live, in-person OARS F&F Group will meet in the real office of my addiction counselor friend. In my small town there is only one Al-Anon meeting. I believe this addition of the OARS group will fit in nicely with its meeting time of 4 p.m. on a Friday. Drunken weekends start on Fridays; this may help the caretaker deal more sensibly with the insanity of alcoholic-ness. If this goes well, I will consider starting a group on the Outer Banks and the Tidewater area. If you in the area, please join us on the third floor of the Old Bank of America Building, Broad and Eden Streets, Edenton, NC.

I’m also pleased to announce that the Veterans Administration Caregiver Support Division of Hampton Roads and North Carolina, have asked me to help set up a veteran caregiver support group. They have volunteered to work with me in the OARS endeavor and in return I will help with establishing their support group. It is such an incredible honor to be asked to help them. We’ve already set up our first meeting time and place and I’m anxious to get started. If you’re in the Elizabeth City area and want to attend the caregiver’s meeting it is going to be held on Tuesday, July 17th at 10 a.m. in the Albemarle Veterans Primary Care Clinic, 1845 West City Drive, Elizabeth City, NC. Although this is sponsored and supported by the Veteran’s Administration, the meetings are open to all caretakers in the general public.
The Immortal Alcoholic’s Wife is finished and currently being read by my daughter and grandson. When they have finished reading, it will be offered on this blog. The one offered on the blog will be “bare bones” in a simple PDF version. A real e-book version will be out within the next couple of months. I know many of you have been chopping at the bit for this book and I just don’t want you to have to wait any longer.  My hope is that an agent might take an interest in representing me to a publisher.  

Riley’s health condition has improved, but the brain function needed to live on his own is just not there. He is unable to walk on his own and therefore unable to tend to his bathroom needs. We don’t know for a fact that he had another stroke, but his right side is only minimally functional. He has stopped pleading with me to take him home, but I am still trying to find a different facility for his long-term care.
As far as my health goes, I’m now able to get through the day without a nap. I still rest in the afternoon, but I seldom fall asleep. I have made an appointment with a primary care doctor who has an excellent reputation as a diagnostician. I won’t be starting my food program until I’ve managed to eat my way through everything in the freezer. Once it’s empty, I can move it to the Outer Banks and just buy the appropriate foods that I need each week. I’m still not getting enough exercise, but also will change when I make the move.

I have a lot to celebrate. Even though I’ll be cooking only for myself, I won’t let that stop me from having some of the traditional 4th of July favorites – my yummy potato salad, curry-ginger deviled eggs, grilled steak, and fresh fruit salad… This year I think I might have some sparkling cider to toast to my survival through insanity.

19 comments:

Anonymous said...

"I still feel the demands of fighting perceptions and sharing my knowledge and experience."
"I know many of you have been chopping at the bit for this book and I just don’t want you to have to wait any longer."
Pure Delusion. A book on how to live in a urine and feces infected house and end up living like you do. Not something I care to add to my knowledge base.

Kathryn said...

Wow, you sound pretty angry about the decisions Linda has made, I wonder why. You seem so threatened by choices that have nothing to do with you.
Do you seriously think that just because you don't want what Linda has too offer nobody does, and therefore her perception that many are anxious to read her book is a delusion? If so, you have quite the ego going!
On the other hand I think your venom spewing is useful here as it is a striking example of the perceptions Linda's book will help fight.

Beth said...

Here! Here! Kathryn, I couldn't have said it better myself. As you and I both know there are so many that have gained, knowledge, support and a NON-JUDGMENTAL place to share our experiences dealing with an end stage alcoholic. Why this obviously miserable person even comes here to read what Linda is sharing is beyond me. How they happened to find her blog is another question. I feel how Linda has chosen to protect her daughter at her own detriment is admirable, and if this person doesn't agree with her choices that's their problem not Linda's.
Thank you Linda for being so courageous in sharing with us.

Beth said...

Oh, and I am chomping at the bit to read The Immortal Alcoholic!

Niecey said...

I echo what Kathryn and Beth has said. Of course I never put much credit what the internet trolls say...especially behind an "Anonymous" post.

Anonymous said...

I agree with Katherine, Beth and Ecclectic Bohemian and I am also chomping at the bit to read Linda's book. Linda, you have helped so many people with your story and your support in your OARS Group. Thank you so much!

Gerry said...

Linda, I have found your honesty in reporting how it really is to deal with an end stage alcoholic courageous and the mark of a good writer who is not going to whitewash the truth. I think many caretakers hide the ugliest truths for fear people won't be able to handle them. I just barely at 80 have been able to talk frankly about the sexual addiction I developed at the age of 5 after being molested by a 45 year old man and taught to masturbate on the fence by a forceful older cousin. I was always afraid to confess this because of what people would say. So many people feel compelled to hide vital truths because other people who have not been impacted in such a way can't take them.

Gabriele Goldstone said...

LInda,
Your honest description of life with an end-stage alcoholic has been so enlightening to me.

Life with my alcoholic will never be the same, thanks to your sincere, articulate descriptions.

I'll always be grateful. Of course, what I now do with this knowledge - that's still to be seen. Would you have done anything different, now with 20/20 hindsight?

Happy Independence!

Kyra said...

Your blog and other support tools have given me hope in a hopeless situation. Thank you.

Anonymous said...

I think the real delusion comes from "Anonymous" who has obviously not had any dealings with alcoholism. If cancer was the topic for the book would "Anonymous" feel differently? After all, care givers for terminally ill cancer patients are also often times subject to live in urine and feces infected homes. This disease is just one of many that leaves people embarrassed, humiliated, lonely and afraid. I commend you, Linda, for sharing it, urine, feces and all. Delusion is a false belief but alcoholism is REAL.

Syd said...

Linda, glad that things are going well for you and for Riley. It's good that both of you are getting what you need to live without so much stress and difficulty. I got another letter off to Riley. I enjoy sending them. I hope that he isn't too bored with what I write as not much has been going on lately except school.
Congrats on the accomplishments with the support groups and the book.

Lynn said...

noYou're blog is very inspiring in helping me to give up my drinking. It's so easy for an alcoholic, like myself, to only think about ourselves and why our lives are so terrible. You're blog makes me realize that the caretakers and family suffer much more than the alcoholic. The alcoholic as the alcoholic haze/blur for a buffer where the caretaker and family live the actual reality.

Anonymous said...

I too have found reading your blog informative, Linda. There is very little "humanized" and practical information out there on giving appropriate support to a loved one. thank you.

Anonymous said...

When's my independence? Linda, you are so amazing. I need to somehow find the strength to leave my boyfriend. We have been together since 2006, and he has been a drinker ever since I met him. But in the past year, I've seen him go from making any excuse to go out and drink with friends, to making excuses NOT to go out so that he can drink alone. Part of the problem is that he's not a violent or mean drunk. He's very chill and relaxed. So, I don't think either one of us saw it as a problem until recently. We haven't been intimate in over 3 months because he can't function anymore when he's been drinking, or he's not up to it because he's hung over. I am 34 years old and would love to have a baby...but I can't think of allowing this man to take care of a child when he can't even take care of himself. I have to remind him to eat. And even when he does eat, he throws up everything in his stomache each morning after the pint of vodka he drank the night before. He's 38 years old, 5'10" and weighs 120 pounds. Not the epitome of health.
I know I have to leave him. But I'm so worried what will happen to him if I do...so I stay.
He doesn't want help, he just wants to be taken care of. I've fallen into that caregiver role, and I love him. So leaving is hard. I feel like it's giving up on him. And I know what you're going to say: he's already given up on himself. So he needs me right? I can't abandon him!
But I'm so jealous of your opening line..."It's my independence day." I want to live my life...I want my chains to lighten. But I don't really know how to get there and still live with myself for abandoning someone I love who needs me.
CEJ

msterfun said...

CEJ I'm a son of an alcoholic and have had issues of my own with alcohol.

My advice to you or anyone who wants to salvage their life going forward is to give the alcoholic "the" ultimatum and then follow through.

Do it before life gets more complicated by more time spent, babies etc. Don't let them slip up then take them back. With my father,i have decided that i can not control his behavior but i can control mine.

Anonymous said...

Ive been following Linda's blog since my 37 year old brother died of alcoholism in April. The last two years of his life were hell on earth for him and for our family. Ive found Linda's honesty about end stage liver disease very helpful. I wouldn't have wanted my brother ending up in a nursing home like Riley yet I would give anything to have him back, just not the way he was. Alcoholism is a disease that not only affects the alcoholic but has the family living in fear of what will happen next.

Suzanne said...

You are amazing. He is not immortal. The truth wants to be told, but it requires someone brave enough to speak it. Keep at it!

jo said...

to anonymous, you may not choose it but should you have a child or parent or spouse with cancer, or a stroke, or a bad car wreck, you will have it. not just alcoholics have a special on this. so maybe you should check it out in case, God forbid, it happens to you. or like many, you may choose to abandon your loved one . in which case, i feel sorry for you. God forbid, it may be you who becomes helpless and needs care. i hope you wont be abandoned.

the issues i have are not the physical ones, but the mental ones since mine is so abusive and quite insane soon as he hits a blood alcohol level. i dont know what to do about it. legally, i can do nothing unless he is incompetent. very hard to prove in court. too costly.

the other is we all must figure out why we become a parent to someone our age. i stopped this. its actually keeping them down and not allowing them to choose to hit their bottom.

its so funny to read others and think why dont you get out? and i realize mine is the same and i dont get out. quite weird. why do they do that? haha. why do I? it sounds insane. prob is, for all i know.

i cant decide if i will want to read the book or not...like i dont watch shows on tv where i have had to live with the same thing.

mine is in the living room mumbling about liberals and america right now. lol. nice. apparently NCIS isnt on this morning.

good luck to all out there. :)

tieropasvmii said...

I thank you, Linda, for your honesty and telling your story. It is a very rare thing to be told, despite so many people suffering through it. I can't thank you enough. I would be interested in buying multiple copies for my AA group whom I have become dissociated with. I think they would all benefit from hearing about this, and despite the fact that I don't care to participate in their particular version of insanity, I know it does help some, and your reasoning and experience is priceless. Thank you so much for sharing.