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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.

Friday, March 30, 2012

What would you change...

There has been some concern that Riley’s heart may be experiencing erratic beats. His blood pressure has also been a bit erratic. So I took him to the primary care doc to get it checked out. The result was that he found nothing wrong. They didn’t do an EKG, they just listened with the stethoscope.

OK. I was good with that. There was nothing wrong… except… something just didn’t feel right.  I told both the doc and the PA that I wanted to make sure his heart was healthy enough to withstand the stress of detox. I wanted to put him into a long term care facility, but he would have to detox first.
The response: EVERY alcoholic is healthy enough to detox at ANY time. ALL alcoholics should detox no matter how bad their health is.

After the statement, they turned and walked away from me. They said I should call if I need anything else. Uhhh --- I need something else. I need respect and an open mind. How about that? Do they have any of that in one of those little locked cupboards in the supply room? I think not. This isn’t the first time I’ve felt this way while in their office. Hmmmmmm…. I think that nagging little feeling was telling me that it was time for a new primary care doctor.
I took Riley into my cardiologists do an EKG and give me a second opinion on the healthiness of Riley’s heart. The EKG showed nothing amiss. However, an EKG doesn’t give a true picture of the health of the heart. The only way to determine if the heart has been worn down is to do an echocardiogram. That will be performed on Tuesday. Riley will also get a halter to monitor his heart over a space of 24 hours.
In the meantime, the bath aide discovered Riley has an open bleeding sore in the crack of his butt cheeks. This is caused by not changing his diaper often enough and him not cleaning his butt. He has diaper cream that he is supposed to be using, but it seems as much as he insists he is using it – he is not. If I can’t keep this sore clean it will certainly become infected. Riley is very resistant to me helping him with any of his personal hygiene and that’s why we have a weekly bath aid. Weekly isn’t going to work. He needs daily supervision that will insure he treats this sore so it can heal. The type of infection from the location of the sore – can be deadly very quickly.
Gil, has been spending a lot of time trying to find an VA long term care facility that will accept Riley for detox. He has called every place and every one he knows. There is no help coming. The VA would have to admit him to a substance abuse program that is long term which would start with a medically supervised detox. No place will take him because he openly states he will resume drinking as soon as he is through detoxing. He can’t just go to a facility (any facility) for long term care if he does not detox first. Since he doesn’t want to detox or go to any facility – there is nothing I can do to force this issue. Gil thinks it’s really an insurance issue – insurance companies don’t want to pay for lost causes.
I don’t know if getting guardianship is going to be the answer either. I’m his wife with a full power of attorney, so my question to my readers is – Do I need to get guardianship? And exactly what will it do for me?
Last month, I talked to the Magistrate about having Riley committed as being a danger to his own person and others. The Magistrate wasn’t enthusiastic about the whole idea. All that does is get him put into the back of a cop car and taken to a hospital for evaluation. After that, a determination will be made as to what is in his best interests. I don’t want him treated like a criminal. I suppose I can take this route – but it will be my last resort.
What I need is a personal aide for Riley who will come in and help with his hygiene and the cleanliness of his personal space. He will not allow me to tend to his sore and gets belligerent when I try to take care of his room. But, when a stranger comes in, he is cooperative. But – I can’t afford it.
The application to the Veterans Administration for disability compensation can take up to six months to process. It can take more than six weeks just to get an appointment for a VA sanctioned evaluation.
If the only issue were all the other alcohol related diseases, I would say – OK, if the app is approved before he dies, I can get some help in here while he is dying. I truly believe he has another six months before he dies from just the alcohol and once I get the app approved, I can afford to hire someone to maybe extend that life just a little longer. But now, with the new sore on his butt, I don’t have that much time. If this sore becomes infected, Riley could be dead in less than a month. It would be a shame for him to die because I couldn’t get him proper care when I can see it is just out of reach.
The good Senator from North Carolina, Richard Barr, is on my list of people to call today. When I went to his website I found information about how he supports health care improvements for veterans. I want to ask if there is any way he can put a rush on Riley’s application. After all, I have provided all the civilian medical records and information. That’s one step they won’t have to deal with. I don’t think we are any more special than anyone else, it’s just that I’m quickly running out of options here.

Even if my phone call doesn’t end up helping Riley, maybe it will bring to attention the fact that there is a big disconnect in help for caretakers such as myself. Maybe there should be more “wet house” types of facilities where drunks can live out the rest of their lives as drunks without inflicting their insanity on others while being monitored for things like broken arms or sores on the butt. Maybe substance abuse centers should have to take any drunk requesting admission even if he says he doesn’t want to stop. After all, isn’t that why Interventions are done?
I get close to 800 hits daily on this site. All of you have an opinion. If I could get my thoughts together and get a petition started on changing how caretakers and drunks are treated, what would you want to see on that petition? How would you like to see things change? Is it more required education for the medical community? Should a different criterion be established to get drunks into detox/rehab? A program that gets the caretaker in-home help when reaching the end of the drunks mortality? What would you want me to lobby for, if I was to go in that direction – which is apparently where I am headed?


jo said...

welcome to reality, linda. been there. if you are LUCKY, the VA will take 6 months. i dont know who said that, but the average is 18 months to over 3 yrs. the backlog is unreal and mostly they just stamp denied. so good luck there.

alcohol causes their skin to break down also.

it is a HOLTER monitor. everyone says halter. lol. it is a credit card size...if your lucky to get the newer ones, and it records heart rate. i dont think it will tell you much. alcohol causes heart arrthymias. and artery disease. you are like me,wanting that proof of what is wrong. wont happen, hon.

you also want a time length, as i do. wont happen. we die when we die. no one knows. esp drs. and few, FEW will help or give a ****. without them wanting to get better, the world washes their hands of us all.

and i think that will be key. money for people who dont want help? wow. good luck. it would be so nice...but i cant see it happening in this lifetime. esp with the vietnam vets. no one cares. and no one is gonna spend money on them.

hang in there.

Anonymous said...

You should present Riley with 2 options: 1) go with the program to detox 2) find a "wet house" where he can live out his remaining days.The option of continuing to live with/off you and you at his beck and call and purchasing his alcohol should not be on the table. Remember, the definition of insanity is doing the same thing over and over and expecting different results. Good luck.

Syd said...

What about detox with immediate placement in a long-term care facility? That way he would not be able to get more alcohol and he would be detoxes safely.
I believe there is a solution available. I hope one becomes clear to you.
As far as what I would like to see, I think that education has to start very young. We are becoming a nation of addicts and obese people.

Eclectic Bohemian said...

"EVERY alcoholic is healthy enough to detox at ANY time. ALL alcoholics should detox no matter how bad their health is."

My perception of that remark is basically saying that alcoholics are disposable human waste. That they should be forced to sober up at all costs. If they happen to die during detox, so be it. They'll die eventually, right?
(Now mind you, that is NOT my opinion)

I have always been from the thought that education is the key. Its cliche but its so true...KNOWLEDGE IS POWER. If you are literally not aware of something, that is the true definition of denial. Denial is a HUGE element in alcoholism...for the alcoholic and everyone he/she affects.

I think that is the problem with society in general is not enough education where alcoholism/addiction is concerned. That is HUGE and unfortunately I don't have any ideas of how one could change that.

If professionals (and society) were thoroughly educated on alcoholism, having in home help wouldn't be such a difficult issue. It is a CHRONIC, PROGRESSIVE AND USUALLY FATAL DISEASE. Any other disorder/disease with that criteria calls for in home assistance. Why not alcoholism?

Karen E. said...

I dont really understand. Cant you take him to the ER for say his sore on the butt cheek. They have to treat, they will see his elctrolytes, potassium, thiamin, etc etc are all off and will have to treat him, keep him and detox or wean off alcohol...then he will be dried out and you can put him in a long term care.. That is how it worked the last 3 times my mom the A was detoxed..it was not by her choice it was due to ER visit because of fall, injury, etc. This last ER visit head laceration and broken nose..they gave her vodka becuase they didnt want to detox..but they couldnt send her home cause she was so weak she could hardly walk, she even fell in the hospital. her blood work and vitamin defeciency was so bad they kept her longer than they originally planned and she detoxed..she didnt want to nobody cared... they couldnt send her home in her weak condition... Call an ambulance when he falls next time and just see what the heck happens..if anything it will be a night or two off for you! Go FOR IT!

Gabriele Goldstone said...

My a. stopped drinking last April when I took away his money. It was a scary time. He was so wasted. But everyday he got stronger. I make him walk daily to buy his smokes.

Every once in awhile I 'test' him. 2 weeks before xmas I gave him a bit of gift-buying money. Gone. Then in January he got more than $700 from Revenue Canada - in 2 weeks it was gone. So - my lesson learned.

Of course, this is all my controlling him - and I hate being in this position.

Good luck.

Anonymous said...

Linda, I think one of the reasons your blog is so popular is due to its eye-opening information about the lack of options for end-stage alcoholics. We have this general idea that there are answers for every problem out there -- this is 2012 in the United States of America for heaven's sake, yet we are discovering that the reality is pretty scary and stark. Perhaps educating the medical community would be a good start, but I think a broader approach would be better. We are long over-due for a new way of understanding alcoholism beyond the mentality that treating an alcoholic follows certain steps (Intervention, Detox, Rehab, AA, Happily Ever After), and that veering from that course in any way means that you lack character and that society can now justifiably turn its back on you. I'm not sure what some people think you should do -- drop him off in the nearest gutter?

With you in spirit.

Linda -- Immortal Alcoholic's Wife said...

Karen -- Doesn't work that way here. Last time he went to the ER they straight out told us they would not keep him more than 24 hrs so he would not go into detox. They pumped him full of potassium and released him.

I wish they wish it would work for him like it did for your A, but I've called everywhere and had no luck. There is a nursing home that will let him have alcohol IF his primary care doc will have a treatment plan leading to him going to a rehab facility. But this primary doc will not comply.

I'm still working on it. I won't give up until I have beaten every bush.

Linda -- Immortal Alcoholic's Wife said...

Karen -- Doesn't work that way here. Last time he went to the ER they straight out told us they would not keep him more than 24 hrs so he would not go into detox. They pumped him full of potassium and released him.

I wish they wish it would work for him like it did for your A, but I've called everywhere and had no luck. There is a nursing home that will let him have alcohol IF his primary care doc will have a treatment plan leading to him going to a rehab facility. But this primary doc will not comply.

I'm still working on it. I won't give up until I have beaten every bush.

jo said...

karen e, it wont work here either.

legally they only have to treat someone in a immediate life threatening crisis. hence the gastro saying "see ya in the ER". anything else they can and will refuse any further than stabilizing.

friend of mines, her H had a bleed. they kept him in icu but he really wasnt concious any longer. until then, basically we seem screwed. the VA here wont even run any tests but blood. not until he bleeds or is in a coma. period.

if they wont quit drinking, or it will kill them if they do, health care EXCEPT in immediate life threatening circumstances is not happening. ie. stop a bleed. drain fluid if it blocks breathing. then send them back home. oh lovely.

your very lucky if yours isnt like this! hugs.

jo said...

to all...what is their issue with "rehab"? what is their problem with simply giving them alcohol, bathing them, etc. and letting them live until they die? i dont get it. its all about rehab...rehab...which doesnt work mostly anyway! i dont get the mindset. i really dont. its frustrating.

Karen E. said...

jo.. I did that for 2 years. I gave her the vodka. Bathed her every week or so. Managed my schedule so she would get food during the day. Threw her disgusting sheets away and replaced with new. Washed her clothes. BUT then I was having to pick her up off the floor 3-5 times a day. half the time in puddles of blood. SHe was bruised all over, lacerations ..she looked abused. My husband and I took separate vacations away becuase we couldnt leave her alone, but we each needed breaks. Worried that if we hired someone to stay with her they would report US for abuse. she refused medical treatment until there was no way I could treat her last forhead smashing and broken nose..called the ambulance and off she went. She has been gone for 2 months now and the thougt of going thru that again makes me ill. I just cannot do it.
She is in a long term facility now, not participating in the community events, just eating and sitting in her room trying to figure out how to get vodka. Trying to figure out how she should act to convince everyone she is fine, not demented so she can come back home and DRINK... I am trying to hold that off with all I got..hoping she gives up the fight to drink...I know I will lose this battle... but at least my family has a little relief....for now.

msterfun said...

In answer to the title of this post, I'd change nothing. I'm a long time reader of your blog, Linda. I started reading after i stumbled across it when looking for information regarding cirrhosis after my father was diagnosed with it after being admitted to the ER. I had to do a lot of catching up on past posts and enjoyed everything from you and Riley's happier times and found what he's going through now very interesting.

What i find most interesting is how so many of the A's, as they've come to be known as, go down the same paths. Drunk -> unclean -> sick ->hospital->recuperate. Rinse and repeat. It also got me to thinking, are most of the other A's also generally terrible people like my dad is? Sure they sre not evil, they aren't 3rd world dictators with gas chambers or torture rooms but they are usually terrible to their families and themselves.

My dad managed to waste his family, money, and his health to be rescued by my brother and I. Now we just wait for it to happen again. The next time though we have agreed to follow in pur father's footsteps and have nothing to do with being there for him. I don't see the need to be a martyr for someone who will not help themselves. And i don't want my government digging into my paycheck attempting in vain to help people who won't help themselves.

If i were my father's caretaker, which i will never be again, i would pull up to the ER, help him into a wheelchair, take him to the admitting area and discretely get into my vehicle and leave. That sounds harsh but less so than my desire to drop him off 60 miles west of Las Vegas in the desert.