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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, February 24, 2012

It won't kill you...

First of all, I want to thank all my readers for their patience while I have been away from the blog. I appreciate the many letters I have received expressing concern for my lack of posting. I want to assure you that I’m OK. It’s just been a little more difficult lately and my usual time for writing has been overtaken by other responsibilities.

After Riley returned home from the hospital, he never quite returned to where he was before he went in for stabilizing. He is weaker now than ever. He has absolutely no bowel or bladder control and cannot walk without assistance. On Thursday he fell eleven times. One of those falls was only about an inch from the fireplace.
I met with Gill and we talked about having Riley committed to the state mental hospital. My fear was that he would detox and come home so we could start up this routine all over again. It pains me to say that I really don’t want to go through all this insanity ever again. I’ve done it so many times and each time my physical health deteriorates and he just goes on. If the hospital would keep him, I’d be all ready to have him committed.

The reality is detox is dangerous. I know that and I know that Riley may not survive detox this time. But, too many times I’ve been told he that he would not survive and then he becomes immortal. When Riley is alcohol-free after detox, he actually presents himself as a sane and rational individual. I don’t believe it’s sane for anyone to return to drinking after detox, but my opinion means nothing.
Because I thought it might be possible that they would keep him, I did some checking to lay the ground work for Riley’s being committed. I spoke to the Magistrate. I learned that going before the Magistrate only initiates an order to have a Sherriff’s squad car to come to my home, handcuff Riley, put him in the back of the car and transports him the almost 3 hour drive to the hospital. Well -- that doesn't sound like something I would want to have happen to him. It just seemed like overkill to me.

Once there, he would be evaluated by a hospital doctor. That doctor would make a recommendation as to treatment. It may be that he will simply be detoxed and let go. If he presents himself after detox to be a danger to himself and others, then and only then, they would admit him in a residential program. Well – for me – that sounds like a crap shoot! I’m not much of a gambler and I think maybe I should just pick up my cards and go home.

I took my information and met with Gill once again. We agreed that for Riley to state he intended to drink again was an act of insanity. He is a danger to others by virtue of admitting he would drive drunk. He is a danger to me because of his inability to clean up his biological waste from the floor and walls. He is a danger to himself because he knows the drinking will kill him. But, generally speaking, they don’t commit people for that – or at least – I don’t think they do.
When Riley was discharged from the ICU, I was told to take him back to the doctor’s office on Monday to get his lab work re-done. There is no way that can happen because I can’t get him into the van and once in, I don’t know if I could get him out. I called the doctor’s office to let them know that I wouldn’t be bring him in. I was told not to worry about it, that the doctor would be calling me.

I rarely have much sympathy for the medical community. I find their lack of knowledge and understanding to be a constant irritation. When the doctor called me back I knew I would get the lecture about getting him detoxed and into rehab. I was surprised when the doc simply said that there was really nothing more he could do for Riley. He understood that Riley was not going to stop drinking even if they got him to agree to rehab. There was nothing medically that could be done for him. He couldn’t even give him anything for the pain from his arm or any past or future injury because there was just too much alcohol in his system. When I told him that I didn’t know how much longer I could take care of him, he said he would be ordering hospice. I told him I was reading between the lines. He acknowledged that I understood what that meant since he knew of all the work I have done in writing this blog. Because he knew that I was informed, he didn’t try to give me anything but the facts. I was so appreciative of that.
The events over the past week had made me a bit unsure of a few things and I asked him some questions.

Q:        Riley’s ammonia level is increasing at the rate of about 250-300 micrograms per month. What can I expect as the ammonia level increases?
A:        There will be increased confusion and agitation. He will lose all control of his bodily functions. He will be falling more because he’ll become unable to balance himself. He will sleep almost continuously and will fall asleep any place and at any time. Eventually, he will most likely fall into a coma from which he will not recover. However, it will NOT kill him.
Q:        If the ammonia (hepatic encephalopathy) doesn’t kill him, what will?
A:        The elevated ammonia level is caused by his liver failing to function properly and that WILL kill him. But, that is if nothing else is going wrong inside his body, which clearly there are lots of things going wrong.
He has a history of esophageal bleeding, so he may have esophageal varices which are almost instant death.
His potassium level is extremely low makes him susceptible for a heart attack and since his system is so weak, he would most likely not survive.
He has a lesion in his brain which was the cause of his last stroke. His blood is thinner from the alcohol and any bump to his head could cause that lesion to bleed. That can either cause another stroke or kill him. Because of Riley’s history of falling, he believes this is the most likely thing to happen.
I found it refreshing to get straight forward answers from a medical pro. I know I knew all of this, but to have validation that I am correct is great to hear. But it wasn’t really great because, until now, my knowledge was all about my research and experience. Now I have to look at reality and make some decisions or changes. I’m just not sure how to do it or what changes to make.
Today the hospice worker will come out and evaluate Riley’s condition and what they can do to help me take care of him. I’m also having the POA’s updated, so a Notary Public will be here. It’s Friday, so the housekeeper will be also here. It’s going to be a busy day – again.
At the moment, Riley is asleep sitting up on the love seat in the den. It has been peaceful in my office and I’m grateful for having the quiet so that I could write this post.


jo said...

i apprecite you sharing this,linda. it is absolutely terrifying. but exactly what i have been told by others whose SO have died like this. its ugly. and there are no thanks yous in it. just for ourselves. i hope he has insurance and you can grieve in tahiti. you deserve it. and need it.

it puts many choices on us. like my pal whose H was given morphine to keep him from hurting himself, because he got (use your imagination--it was unreal) too out of hand. course the morphine killed him. choices. let him fall his way outside and scream..? oh yes, he would. hourly. i dare anyone to judge this one. they have no idea.

there is nothing in place for this. not in society. so we, innocent of all but caring for them..watch them die slowly. or God willing..bleed out or have a heart attack.

with hospice, no need for 911. they let them go. nothing more. can i even do that? wow. i guess. opposite any of us have been taught to do. i have experience with it, cancer and my granma..and i still had to fight the nurses then. did they think it was easy? you have no idea how it feels..to do nothing but watch. i wish it on no one.

but then i wish this on no one, either.

i like what you said about without alcohol riley presents as a rational person. mine does to, but its getting where cracks are appearing when he is sober and he carries on with his rants. then he asks, why do you treat me like im a moron? wellllll. i told him. he didnt reply.

sometimes i wonder what we did to have to live like this. do you?

i wish you well..im glad you have a dr who cares. many of us dont. i wish riley to go into a coma and pass peacefully and tragically from this world.

and i wish for answers., there are none.

Syd said...

My FIL has had esophageal varices for a year and encephalopathy has put him into a coma for four days. But he does recover with laculose and banding of the varices. Death occurs if nothing is done and the person bleeds out or stays in the coma. I can't be part of that. So we take him in to the hospital. Right now, he is refusing the laculose so in another week or two, he will become confused and weak. They he will be given the laculose and will comply. It is a medical merry-go-round. But I have to live with myself.

Gerry said...

I was so stunned by what you have been contending with lately in Riley's end stages alcoholism I had to go home and think about it. I told Doc what he might expect at some point in his struggle if he didn't lay off the booze. I recall my step father dying of an esophageal hemorrhage when my mother was his caretaker. He had gone off and married another woman who finally threw him out because of his drinking. So he came back to her to die. But it is true you don't really think about what the caretakers go through who are close to these end stage alcoholics. Doc does not smoke so he is not going to get into any of the smoker's ills as my brother-in-law has who quit drinking years ago but continued to smoke. He lost a leg due to arterial disease and today was diagnosed with 3 different kinds of cancer, two of which are about to kill him, colon and small cell lung cancer. My poor sister has had a heck of a time being his caretaker. But I still don't think his end stages are as rough sounding as what you are going through with Riley. My BIL is rational. In his right mind.
But I am seriously worried about you and hope you will be able to get some relief from hospice. I am also concerned about Jo. Most of the alcoholics in here live alone and essentially they die alone. A fellow I liked a lot was finally evicted for disturbing the whole complex with his nightmarish relapse into drinking. He was on the street quite a while. People would see him passed out on the sidewalk, but he was finally able to get hold of himself and get off the street. Now he is reported to be sober again and doing okay.
Riley sounds like a worst case scenario. I will be thinking about you Linda and hoping you will make it through this without too much damage to yourself.

Karen E. said...

Its all so surreal. Sounds like the next few weeks/months will be trying for you and Riley.. as if the last year hasnt been enough. Stay strong and take care of YOURSELF F I R S T.
My A is still in hospital and they say they have weaned her from vodka..its been 2 days with no vodka, just lithium.....still confused after a week in hospital..they are beginning to attribute that to many concussions from falls. She fell in hospital and stitches were needed for other side of forehead and rebroke her nose. Her ammonia is only 48. Her anemia is gone, potassium is getting better did a upper and lower scope only internal hemmroids,,liver is damaged but not chirrotic.. SHE S FINE but demented and incompetent.. I have been so ready for the "worst news? That now I am just shocked..I was ready for death..for hospice...not 2 more years of this... They still plan to send her to nursing home for physical therapy.. Not sure I can continue her care when she comes home and contniues on this LONG Path.. falling 3-5 times a day.. but not sure how to walk away.... How did we all get here?? Hearing that IF I have her genes..I do not abuse alcohol or drugs.. I work out for stress release..I should live to be 100+ years. doesnt really console me... Unless the stress of caring for her kills me first. I just cannot wrap my arms around her not having any major health problems..she drank vodka 24/7 for the past 15+ years.. slept for 22 hours+ each day.. I am going crazy..can you tell. She has no life, doesnt want a life...only to drink... it may never end//

Karen E. said...

PS.. what have I become..not celebrating the fact that nothing is major wrong wth my Alcoholic mother... she is not dying.. and im upset..Ive only been dealing with her alcoholism for 20 yrs.. I am the one her husband called for help (he died 6 yrs ago)..I am the only daughter that lived near her and cared..my sister walked away 6 yrs ago..said let her die..when your 14 hours away..thats easier to say.. I had a wonderful, loving, supportive mother..but she is not here anymore and hasnt been for 15 yrs.
Im sorry Linda that you are dealing with all this with Riley...and I do not mean to go on and on...YOU have my suport.

Colleen said...

I am happy to hear that hospice is coming in. Even if you get someone for an hour a day, it is help for you.

ADDY said...

OMG. From what you say my judgement is that the end is not all that far away and it'll be a massive internal oesophageal bleed that carries him off. My heart goes out to you... I know EXACTLY how you feel.

jo said...

karen E...

we sound so much alike. i wonder the same things. all the time. and sometime fight desperately for my humanness.

weaned her off? in 2 days? haha. they think that/ it takes weeks...not days. they can dream on. it takes a normal person a hour for each ounce of alcohol to metabolize. mine takes a good double that now/

i really empathize with what syd said. however, i just dont know the answer. i went thru that yrs ago. im sure i would still call 911 but not when mine is concious. learned that lesson the hard way once. you really havent lived till you sit in a ER with yours screaming f words and calling the nurses pigs. for hours. you really havent.

syd, thats why we call them immortal. :)

karen E,,big hugs. truly. i hear ya.

Jenna said...

My heart goes out to all of you. There are no easy answers in thios situation. Please take care of yourselves. Xx

Linda - I was wondering where you had been - good to hear from you, sad that things are the way they are.

tieropasvmii said...

I just want to thank you for sharing your story, add I'm going through a very tough time right now and I can relate to all you've said. I'm so sorry for the loss of the person you loved. It is very traumatic and not many people get it.