I welcome everyone’s comments even it they may be a bit hostile or negative. Each of us has a right to an opinion and a right to voice that opinion. In fact, one commenter says I’m a “sick f***” and that I would drive a person to drink if they weren’t already an alcoholic. So this post is dedicated to all those who think end-stage caretaking is a form of amusing entertainment for sadistic Nurse Nancy’s and bitter spouses.
Why don’t I just… put Riley in a long-term care treatment facility?
No matter how sick a person is if he is not declared incompetent, that person cannot be forced into any alcohol treatment facility. Even then, most of those types of facilities would not accept an individual that has been forced in a facility through an incompetency hearing. Recovery just doesn’t work that way.
As for a regular nursing, physical rehab or long term facility – they will not allow the consumption of alcoholic beverages on their grounds. They offer no detox care so they are not equipped to handle an end-stage alcoholic. Most end-stage alcoholics have been through the detox and rehab process many times with the end result being a return to drinking. Because of that statistic, it is extremely difficult to find even a rehab center that will take on a multi-relapse end-stage alcoholic. The reasons for that are that they want to invest their time in people who really desire sobriety and also to eliminate a risk of injury on their premises. After the last detox episode (when Riley had a stroke) there was no rehab facililty of ANY type that would accept Riley as a patient within a hundred miles of our local area. He was too big of a risk for a potentially fatal fall.
Why don’t I just… have him declared incompetent?
That’s not as easy as it sounds. Riley is incompetent to handle his own finances or any other legal matters. But, he is aware what a competency hearing is all about. He knows he is supposed to do to pay bills and buy groceries, etc. He has no ability to follow-through on those tasks and that is hard to prove. He often will appear to others as being perfectly capable of managing his own affairs. Outward appearances are deceiving and he has the ability to “pull the wool over the eyes” of medical professionals who are not truly trained in alcoholism.
Being an end-stage alcoholic is degrading enough all by itself. Having your spouse, parent, partner or whoever declare that you are incapable of the simplest things like choosing what you want to eat for dinner – is beyond degrading. It’s not my job to make him feel any worse about himself. He does that on his own.
I have full power of attorney which gives me the ability to act on his behalf over everything that is relevant. It’s all I need for now. I’m fortunate because Riley doesn’t usually cause me problems that would require court intervention. The only issue we don’t seem to be able to resolve is his desire to drive drunk.
Why don’t I just… let him drive?
OK. Well… now… that’s just a stupid question. Drunks should NEVER be allowed behind the wheel of a 4000 pound potential lethal battering ram. Anyone who has to ask that question is not someone I would want on the road when I’m running my errands.
Why don’t I just… pack him up and send him on his way?
I took on this task as a means of preventing my daughter or grandson from becoming Riley’s caretaker. If I sent him on his way – he would find his way into their homes and thereby create insanity in their lives. I am his legal spouse. He is my responsibility. Many years ago I took a vow that said something about “sickness and health.” This is the sickness part and I will stand by that vow.
If a family member were sick of some other disease – Leukemia, Alzheimer’s, Stroke, etc – I would not pack them up and send them on their way. I would do the best I could to provide a safe haven. Riley has suffered a stroke as a result of abusing alcohol; he can’t remember simple things like how to get a message off the answering machine or to remove a pan from a hot burner. If he lived on his own, how soon would it be before he burned down his house? I don’t know, but I’m not willing to take that risk.
He’s not my prisoner. He’s my sick husband who would not survive in the real world.
Why don’t I just… pick him up when he falls?
I’m an old lady who is not even five feet tall and I don’t have a lot of physical strength. Riley isn’t a huge guy, but when he falls he is like dead weight. He has no muscle mass and cannot (or will not) assist in any effort to get himself upright. Even my daughter has failed at attempts to pick him up after a fall. But, because he won’t “push” or “pull”, even she has stopped trying to come to his aid.
I could call 911 and the paramedics would race to my door and get him back into his chair. The problem is Riley falls multiple times during the day and I truly believe the EMT’s might have people who are in urgent need of assistance. Someday, I’m going to need them to come running – quickly – so I don’t want to be the little girl who cried wolf.
Why don’t I just… make him use a walker or wheelchair?
Using a cane, wheelchair or walker, in Riley’s opinion, is an indication that he is old or not physically fit. In Riley’s mind, he is perfectly fit and is young. He mocks the seniors at the local senior center and laughs at the frailties of the aged. He wants no part of anything that would make him appear to be more “seasoned” than he wants to be.
In order to use any devices that would aid in his mobility, he would need some upper body or arm strength. Riley has no muscle strength from which to draw.
Why don’t I just… make him wear a diaper?
See the above answer. Same thing applies here. Diapers are for babies and old people.
Why don’t I just… stop buying him booze?
Taking away Riley’s alcohol would throw him into a self-induced detox which could be fatal. Detoxing without medical supervision is extremely dangers and it becomes more dangerous each time it happens.
By the count of the centers listed in the workbook that I keep on Riley, he’s been through five – FIVE – medically supervised detox experiences. Each one was worse than the last in terms of the actual process causing seizures and strokes. None of the detox sessions ever led to long-term sobriety. After the last hospital stay, I promised Riley I would never push him into detox again. I do, however, encourage him and ask him if he wants to go. But, I don’t insist and I don’t push.
Why don’t I just… take him to AA or get him some help?
For Riley, AA is just a social activity. He would go all the time if they would just stop harping on the drinking thing. Because they don’t stop, he won’t go. He knows there is help there. He was very active in AA for many years, but now he just wants nothing to do with the “brainwashing” of any 12 step program.
You can lead a horse to water, but you can’t make him drink. It’s the same way with alcoholics and counseling. While I think it would be one of the best ways for an alcoholic to recover, it requires pure, unbridled honesty. Most active alcohols are incapable of being completely honest. Many drink to cover their true feelings. I think it’s unrealistic to expect a counselor to take on the impossible of task of getting a drunk to tell how he/she really feels.
Why don’t I just… stop laughing at him?
I don’t really laugh AT him. I laugh at the circumstance. I laugh at the absurdity of the situation. I laugh at the comedy of errors. Many times, Riley joins me in the laughter. Most times, he doesn’t even know or understand that what he is doing is laughable. He just goes about his business.
I laugh because I don’t want to cry. Those tears were spent many years ago and what did I gain from that? NOTHING. If I do not laugh, Riley will become a burden to heavy for me to bear. I would crumble under that weight and that would defeat my purpose
This is beautifully written. Sorry that you have to put up with abusive comments from ignorant trolls.
ReplyDeleteI understand. I do. You owe me no explanation.
ReplyDeleteNo explanations needed. It is between you and Riley. Each of us has different circumstances and different ways of dealing with the tragedy of alcoholism.
ReplyDeleteI think it is very hard if not impossible for an alcoholic to be realistic about what drink does to him (or her) and most will persist in acting as though everything they thought and did was normal. I am fond of Doc although he aggravates me to the max by not living up to his potential. I have to face his attitudes toward drinking paved the way for that result years ago. He never did live up to his potential, and I think drinking was always involved in his thinking as it sounds like it was involved with Riley. But this winter I saw my oldest son for the first time as I always pictured he could be, on Christmas day to a dinner, relaxed, talkative and completely sober. He is looking and acting better than he has in years. I learned that his GF who I give a lot of credit to for this turnaround, struggled through 25 years of marriage to an alcoholic. My son acts like she is worth the effort he is making to hold on to her, and I also credit his younger brother and me for never giving up on me. My son has always been a good worker, never missing, but boozed through the weekends.
ReplyDeleteMy son talked about his work in detail (bidding on construction jobs with the city, etc.) to the dinner and it was like seeing a man living up that day to his full potential, gaining respect from his relatives who probably don't all realize what a struggle he has had to subdue his alcoholic demons. This was a wonderful Christmas for me to receive. His brother, my younger son, has also struggling with periodic bingeing, but has been doing well after he received a warning that bingeing is not okay either, several times a year even, when you burn down the trailer where you live and now have no place to call your own. He barely escaped with his life. My youngest son is not an alcoholic, but he parties, and anybody who parties alcoholically is subject to some damage to their personalities, given time. My daughter-in-law went back to her bartender job and the drinking world and has now upset my grandson with a pregnancy. She and the father she found in the bar have already split and she is with someone else and talking about returning to church life when she did recognize the dangers of her alcoholism to her family. She got pregnant with another man's baby while partying when she was with my son a few years back and has 2 kids with that guy before splitting with him. I have been very worried about the effects of all this on my 16 year old grandson who has been living in another state with relatives. He came back home to stay only to discover his mother's pregnancy. I am trying to encourage him to be strong, while his father, my youngest son, is trying to get back to this state so he can help encourage him to stay in school and refrain from getting in trouble! I fear he might be overly tempted to abuse alcohol, so I talked to him a lot the two days he spend with me at Christmas. Oh how families are affected by this curse. Being the daughter of an alcoholic how well I know. I vowed never get drunk and never did. Two were my limit and I kept that vow.
ReplyDeleteSo true....no one can understand why we do what we do unless they live in our shoes. We do the best we can living with a person with a horrible disease (which I call the Demon). We have to find laughter in the madness and yes sometimes it's at their expense. While at times what happens isn't funny - later the perspective may change and allow us to laugh over the incident. I love your page...it helps me know that there are many others out there living in 'similar' shoes as mine. Thank You!
ReplyDeleteNo one...and I repeat, NO ONE should critique your decisions &/or tell you what you "should" do...period. Especially if he/she has never dealt with what you are dealing with. One never knows what he/she will do until put in that situation. With that being said, every situation is different.
ReplyDeleteAs I've stated before, I have somewhat of a unique position. I've had to live with and end-stage alcoholic and I, myself was entering end-stage alcoholism before I got sober. I'm also a nurse who has seen how our health care system basically drops the ball when it comes to treating the chemically dependent.
Like the old saying goes, do not judge a person until you have walked a mile in his/her shoes!
Yes our health care system sucks so bad for drug and alcohol addiction.. I'm so proud you found your way back..please continue IV been watching my husband and my daughter has been watching him dye it's just a matter of days now... The pain we have endured is astronomical.. God bless you.sincerely shannon
DeleteI recently discovered your blog. I admire your strength, and I learn so much from reading about your situation. I feel a kinship to you, both as the spouse of an alcoholic and the spouse of a retired Navy. When I read your 3 Christmas stories, I felt like I am about 20 years behind you. I know we all have to make choices, and it sounds as though you've made the right choices for you. God Bless you!
ReplyDeleteWhoever the stupid mindless person is who criticised you, they obviously have never lived with end-stage alcoholism. If they had, they would understand what you are saying completely. In which case they are not worth consideration and hardly eligible to give critique. Keep on doing what you are doing.
ReplyDeleteAs always, so well said Linda. It is always amazing to me that people who can't possibly understand what you/we are dealing with have the audacity to judge how someone lives their life. Just by the simple fact that they are passing judgement proves that they are clueless. I have just passed your blog on to a friend of mine that is entering this stage in her alcoholic's life and I'm sure she'll find it as useful and informative as I have. Keep on plugging because there are so many of us that have found a safe haven here with you. No judgements from those of us that are living it!
ReplyDeleteThank you!!
I love the comment on Riley's take on AA being a social event! My alcoholic had to have a drink just to go to a meeting, and he was the group leader! You are so right, for many alcoholics, it's just a get together to tell 'war' stories about drinking, and trying to top each others experience.
ReplyDeleteI admire you and your choice and though I couldn't do what you do, I respect your decision and willingness. I just don't have it in me to do it personally. I am selfish and want my own life. I also don't have the COMPASSION for Mr. M and his choices (and I DO believe they are choices even though he feels like he has no choice).
ReplyDeleteBut WOW, I stopped i shock when I read your reasoning about wanting to protect your kids & grandkids from having to deal with it. UGH! I haven't even had to think about that yet, but I can SO see that being us one day.
If Mr. M can't stay sober and gets to the 'end stage' with his drinking and *I* won't help him, he WILL go to our 4 kids (and some day, their kids) and they WILL want to help him, even if it harms them and/or their families. And I will DEFINITELY want to protect them from that.
Dear God, please do not let it come to that!... Please!
thats funny. i knew all the answers to the questions before i read yours.
ReplyDeletedont look to the system for help. there isnt any. some of us have no money for long term anyways. we dont even make that much in a yr that they charge here. 36,000$ and above.
dont expect any "friend" or stranger to ever understand. i have had many arguments on this topic. they dont get it. dont try. i just tell em im stupid and move on.
obviously ignorant people ask this. or they truly want to learn...
the ones who truly want to learn i love to answer any question.
the rest can kiss my butt.
does it get me angry? oh yesssss.
if i had a nickel for every time someone told me i am the reason mine drinks......i could afford a island to stick them all on with shipments of alcohol.
The amount of wisdom, compassion, strength, humor and brutal honesty that you share, Linda, is why I enjoy (enjoy...not the best choice of words) reading your blog. The others' encouraging comments and support mirror my own. Anyone who wants to criticize or question with judgment has, obviously not walked in the alcoholic-caregiving role and/or been there him/herself. Don't judge others until you have walked in their shoes.
ReplyDeleteI am currently watching a very dear friend die of alcohol and polydrug abuse after a horrifying childhood and ensuing rough life. So many things you've said ring true for me. He is a sweet, affectionate man and a wonderful guitar player (was my guitar teacher in better days) and I would do practically anything to save him, but there's honestly nothing left but to feed him, buy him clothes, and let him know that someone gives a hoot about whether he continues to exist or not. Like you've said of Riley, he's been getting more and more childlike. On the upside, coupled with his small frame and markedly juvenile appearance at the age of 48, this makes him very endearing to care for (last summer he fell asleep in my arms), but on the downside, it also pretty much seals his doom. He can't be reasoned with, nor could he remember that he has been reasoned with if he has understood and agreed with what you've said.
ReplyDeleteHe isn't quite as far gone as Riley just yet, but I think that point is only about a year from now. He can be seen here on YouTube:
http://www.youtube.com/watch?v=cMCPp9PqZqI
This is a comforting place on the Net. Thank you for creating it.
I would also like to add that my friend is additionally suffering from TBI unrelated to his alcoholism, resulting from a nasty spill in 1984 from his bicycle, which he still continues to ride without a helmet.
ReplyDeleteThis is beautifully written, like many others here I am sorry you have to put up with the abuse.
ReplyDeleteI wanted to tell you about a little known program here in Canada - in Toronto & Vancouver only, so far as I know. It's called a "wet rehab". The participants are given one ounce of alcohol per hour. These are the hard core alcoholics who will resort to drinking listerine or Asian cooking wine to get the alcohol their bodies require at this stage of their alcoholism. It is really quite an amazing (amazing that it exists!) & human approach for people who are at this level of alcoholism. It stops the revolving door alternative which is binge drinking / hospitalization / rehab. The 'one ounce per hour' pretty much stops the likelihood of binge drinking. There is no requirement of being 100% sober to be accepted into the program (which ain't going to happen for these folks anyway). If only it could be implemented everywhere ...
My father was mentally ill but managed to stay under the radar and avoid any type of medical treatment for his 62 years-- he started showing symtpoms in his early 30s. I relate to this post because this past year he suffered several heart attacks and refused any type of medical intervention. He would take his medication in rehab only if one of my brothers or I would stand over him and beg him to. It was such a hopeless battle to try to get him to see things as they really were-- the only thing more impossible was getting him an "incompetent" declaration-- it never happened. The laughter part is what kept me going-- a lot of times my dad was so confused and angry, but we had to keep our sense of humor about the situation. My dad passed this December-- my thoughts and prayers are with you in this difficult time, you will get to the other side!
ReplyDeleteIt's totally complicated and yet so simple. You can't save a drowning person by holding on to them - they'll drown you, too.
ReplyDeleteGet safe, stay stable, keep your distance. I can say this - but applying it to my own situation is a challenge.
Just being able to listen and to share on this awesome blog is quite empowering. Take care!
Thanks Anonymous - I never heard of a 'wet rehab', I'll look into it. I don't know what stage my son is in. He has been drinking and doing drugs for 15 years now. The other day, I found an empty fifth in his room, bought two days previously-as I also found the receipt left in a bag in his room. He can't support himself - if we didn't let him stay here he would be on the streets. He may also have some mental disorder- something that was never caught when he was younger. He gets mean when he drinks -not physically - he just talks crazy. He is a different person-I really miss my son.
ReplyDeleteHere is another rehab people may not have heard of - another Godsend - they do exist : D
www.sanpantrignano.org
You owe no explanations, and I am positive that you know this but just wanted people too judgmental for their own good to hear your reasons. Your blog has been immensely helpful and informative to those of us going through something similar. You should be commended for your honesty, bravery AND your sense of humor. Keep it up - sometimes reading your blog is the only thing that keeps me from feeling completely alone and engulfed by my father's addiction.
ReplyDeleteI just discovered your blog and find the posts very helpful and supportive. I find myself nodding my head in agreement with so many of the comments. "That's my experience exactly," keeps going through my mind.
ReplyDeleteYou mention several times that you are providing care to avoid Riley becoming a burden on your children. I feel exactly the same way. If I didn't provide the care, my wife would just throw herself onto the mercy of my son and daughter. And I don't want that.
Keep up the good work.
Delusion and denial slither unbidden
ReplyDeleteinto his subconscious.
The call of the bottle is relentless,
he can’t help himself,
and I am helpless.
As the window of sobriety
narrows with each passing day,
I am confounded and confused
that our lives have taken this turn
in such a powerless way.
Anger engulfs me
in its slow and steady burn
and I must be careful not to turn
it against him.
As he slides to the floor,
I wonder if I can endure more.
All I can do is pray
for a state of resigned acceptance.
Tears must be replaced
with embracement of a new day
while bereavement clings to me like a sorrowful child.
Hi Linda,
ReplyDeleteI'm pleased to find your blog.its not often I'm inspired to keep reading & comment, but I love your attitude, especially the humor part, as I can relate to how that helps keep us strong. I come from a family of alcoholics. Some are dead, others are on too many narcotic pain killers to care much for booze any more. And still others are binge drinkers. But worst of all is my sister who is on track for eventually becoming an end stage if something doesn't change. I'll keep reading here and thx for sharing.
Thak you for your blog. I have had two severe alcoholics in my life. I left one for the other and glad I did becauze the second one got sober and has been for three years and is a amazing man. Sometimes tho i think about the first one and remember the fun times with him and miss him a little. But he is still drinking very hard and is alone and reading this blog makes me so happy with the choise I made. Best of luck to you. riley is lucky to have you.
ReplyDeleteI am going through this with my 60-year old brother and his girlfriend. He has been living near me for about 9 months now. I had no idea how far along he was. It is so sad and hard; it truly breaks my heart. I have tried everything I can think of to get through to him, but nothing works. Its not that I think that he can quit drinking--I know he can't. But he has lost control of EVERYTHING, including finances, and always needs to borrow money to get alcohol and cigarettes. Between the two of them, they have a $60/day alcohol and smoking habit and are broke two weeks after they get paid. He has been to the emergency room 1/month since he has been here. He has also been hospitalized. Every time I turn around, its another accident or problem or something. It kills me to see them like this. It is taking its toll on me. I have been told by doctors and friends to drop him from my life (like all of my other family members and his children)--but I just CAN'T do that. He is MY brother and I love him. How do I cope and keep my sanity?? Please give me some advice. Thank you.
ReplyDeleteMy prayers for more strength to you...I am just a random reader of blogs on alcoholism .what you are doing for your brother is noble... can't find any other word to describe it.
DeleteThis could be my story as well. Only, I haven't learned how to laugh, but I'm getting better about not crying.
ReplyDeleteI'm glad I'm not alone. I'm 33yrs old, only child. Only my father and I here to deal with my mother's alcoholism. We've watched her denial and hiding turn into deteriorating health. From research,i know she's at the end. She lost her job about 15yrs ago and couldn't keep another one. Refused any treatment, and just kept getting worse. She finally agreed to rehab a year ago, but checked herself out 2 days later. Over the past year, she falls alot, losses control of bodily fluids, and I've noticed blood in her urine. Through all of this she refuses medical treatment and argues if we bring it up. For the past two days shes been week, not eating, not wanting to talk. I'm afraid she's starting to shut down. I don't know if I'm getting ahead of myself, but i can't help but expect the worse. As for laughing or crying, i do neither, I'm kind of emotionless so far. She's not the mom i knew, that woman disappeared a long time ago. I've begged, pleaded, and reasoned nothing works. I've come to except the inevitable.
ReplyDeleteThanks so much for this safe place to land. My daughter is 44 years old, she has been married to her husband for 17 years. Through those 17 years she has completed 2 degrees, put her self through school and worked the last 15 years as a high school teacher. She worked part time through summers and sometimes during the school year. Her husband was great the first couple of years, he worked the trades most times for cash so far as she knows. He would give her $ towards the bills so she didn't feel a need to question. Then the wheels started to fall off. Of course she didn't tell me right away things were unraveling. The first time was coming up short in their finances. Only to find out he had emptied and overdrafted their checking account, maxed his credit card. She managed to get the checkbook and hide the other checks, I don't know about the others. Then there was the time he passed out in the bathroom against the radiator and suffered 2nd and 3rd degree burns on his back. She found him in the morning when she got up for work. In hospital for several day with this. Then several years ago he was diagnosed with psoriatic arthritis. He drinks while taking the medication and he has been experiencing seizures. This has also resulted in trips to the ER. He broke his arm last year falling down the basement stairs where my daughter found him because she comes home at noon to check on him. When taken to the hospital blood alcohol level was .380 This break resulted in several medical issues including 10 days in the hospital having the wound trench irrigated due to staff infection. Tuesday she came home from work to a bloody mess in the back yard and him sitting on the ground. He had fallen and hit his head on a brick and when he came to he sat up and that was when she found him. He had lost a great deal of blood and she got the neighbor to help lift him, because she can't and the neighbor took him to the ER. Her husband was admitted with a .40 blood alcohol level. The doctor was clueless as to her husbands ability to even be or appear coherent. I am her only support system. She refuses to try al-anon because she sees it as faith based. She doesn't want to come home to find him dead, they own a duplex and she fears for the safety of the tenant. She wants to file for divorce because she wants a life with more substance than what she has now. She is afraid to see him on the street. My family carries a long list of alcoholism for 4 generations. Some followed the AA program, some haven't. I don't know where to turn for alternative help. Any suggestions are appreciated.
ReplyDelete