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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.

Sunday, June 12, 2011

Alone in a crowd...

When I started this blog I felt that I must be the only one going through this and that the writing would help me get my thoughts and feelings down on paper – well – computer screen – it is the 21st Century after all. I was angry at myself, Riley, everyone around me because no one person really understood my dilemma.

Before Riley came back, I was happy. I was in a relationship. I had a great job, a cat, and lots of friends who were not related to me by blood. It was a good life. I had my share of trials, but nothing seemed to be able to keep me down for long.

When I made that long drive up north to move Riley back to my home, I knew things would change. I wasn’t really sure how they would change, but change was certain. I was no stranger to Riley’s drunkenness. I listened as his roommates told me of some of the bizarre behavior exhibited over the past few months. What they described didn’t sound like the drunken Riley I had shared my home with previously. I was in for a very rude awakening.

At first, I just treated him like I had before. But, I quickly realized that I needed to change my approach. As the changes took place in how I treated Riley, changes were also taking place in my personal life. There was no time for a relationship and no time for social gatherings with my friends. I still had my job – telecommuting was my lifesaver there. With the exception of a few friends and family, who I now communicated with via e-mail and phone calls, I was alone with Riley. None of my friends wanted to be in the presence of a man who has a tendency to ogle, make rude comments, pee on myself, and unable to string three words into an understandable sentence. Well… my cat didn’t care – I still had my Jax Cat.

Alone with Riley.  Hmmmm… I remember days when that phrase would have put a twinkle of delight in my eye and make me tingle with anticipation. I would have had visions of a romantic dinner and a walk around the lake. But now… it sounded like a prison sentence. I had to remind myself over and over that my reasons for doing this were to save my daughter from this very same sentence. Just like a criminal who knows there’s a possibly that he may have to do time for the crime – I knew for a very long time the possibly of having to be Riley’s caretaker. I knew I would have the support of my family and a few friends – but that in the end – this would be MY prison term and I would have to serve it ALONE.

Riley’s behavior was so outrageous that I was certain no one on the face of the earth was experiencing anything like it. I went to Al-Anon, but the other attendees’ stories just weren’t relatable to mine. Everyone thought they knew what I needed to do but none of them ever once described anything like what was transpiring in my house.

Al-Anon is a good source for support. I recommend it. But, I find that the issues of end-stage are very different from that of alcoholics who have not encountered extreme physical dysfunction or near fatal detox. The physiological changes magnify the amount of effort needed to maintain a clean and healthy household – avoiding such things as salmonella. The personality changes make it seem that there is a stranger in the house. I believe in the principals of Al-Anon, but I think it may be difficult to really relate them to actual experiences – especially at end-stage. Sometimes, we end-stage caretakers must go against what is taught at Al-Anon meetings.

From the very beginning, I did research on end-stage alcoholism. There wasn’t much out there, but I kept digging. I learned about different alcohol-related illnesses and what I could expect if Riley had one. I’m a firm believer in knowing what you’re up against – and the internet was very helpful in educating me on alcoholism in general. Finding out about end-stage issues was a long and circuitous route. But… the good news… it kept me busy and between Riley, research and my real job… I didn’t have time to focus on how alone I felt.

I wrote in my blog, but there weren’t many comments. That is – until – I heard from a woman who was going through exactly the same thing I was. She wrote that her alcoholic husband had the same traits as Riley. He even watched similar TV programs and made the same demands. I was elated – I’d found a kindred spirit. I felt a distinct bond with this person.

To stay informed and understand Riley better, I continued with my research and I shared what I learned on my blog. After that, I started getting more comments and e-mail began to arrive in my virtual mailbox. Many people were uncomfortable with posting a public comment and preferred the anonymity of e-mail. I was OK with that. I try to answer each one personally and try to be there to listen (or read) and provide support. I can feel the pain and isolation in each note and I wanted to reach out and say – you’re NOT alone. That’s when it hit me – am NOT alone.

For every note I receive, I imagine that there are thousands more that have been enduring the life that I find myself living with Riley. And I wonder how many have no support system at all? I have my daughter and family and a few friends, but who do they have? I wish I could visit each and every one and give them the comfort of a giant size hug, a bowl of macaroni and cheese, some homemade chicken soup, and, a plate of freshly baked cookies. But, instead, I just keep writing in my blog and answering e-mails. I hope that they feel my support being transported over the invisible waves of virtual reality.

I no longer feel the loneliness of being alone in this prison. Because of that, it doesn’t feel so much like a prison anymore. I have a life, happiness, and last but not least – my cat.

21 comments:

Alice said...

I've read your blog for ages now. I'm a recovering alcoholic who's had a few slips but I keep battling on. I don't know what I'd do in your situation but I have a lot of respect for your decision to take this burden off your daughter in caring for RIley. Anyway.. I'm an appreciative reader even though I am not in your situation. Reading this helps me to realise how necessary it is for me to keep fighting alcoholism because I don't want to end up like Riley and at 32 I am basically now defining how the rest of my life will be. And I want it to be sober and filled with family.

Have Myelin? said...

I lost my daughter to alcoholism at the age of 34 two years ago. I just posted WHY she died (it wasn't a secret except on my blog due to family) and even after her death, her alcoholism impacts me even now... I am haunted. I miss her.

HyperCRYPTICal said...

Hi Linda

I guess before you wrote this post I did not truly understand how much of your own life you have given up to care for Riley who has so sorely hurt you.

Your altruism is to be applauded as is that of your mission (for want of a better word) to educate all re alcoholism and indeed its affect on families. I salute you my friend.

I homed in on something you said and will write to you about it - re TV programmes as I wonder if this applies to many with dementia, not just dementia associated with alcohol abuse.

Gerry said...

I found your blog on on Sherry's blog (Have Myelin-) which I have been reading quite a long time. My companion is an alcoholic at 73 and doubt he will be able to quit now. He is a comic, and we have made many videos, all with him inebriated, in which I have talked about his alcoholism many times. I finally decided that as long as I was seeing as much of him as I am I would just talk about it, somewhat like he had severe diabetes or something, as he seems as helpless in stopping drinking now. I am also writing my memoir which covers a childhood greatly impacted by the alcoholism in my Dad and his side of the family. I don't live with Doc. I see him daily. Your factual blog is very interesting to me as another approach to an alcoholic family member. I tried desperately to reach my alcoholic dad and to keep him from committing suicide, which his oldest brother did, and his youngest brother did by an alcohol related death at 22. His oldest brother was 50. My dad died at 64, and what a relief it was to lay him in his grave without him having killed anyone in a wreck. He had a bad wreck he caused nearly a year before he died and was going to have to go to court. He died from a heart attack, emphysema related as he was also a bad smoker. I was so moved by Sherry's story of her daughter and now by your story ongoing with your son.

lakearrowheadladywriter said...

Dear Linda,
Thank you for reaching out and for all of the information. I, too, have tried to find information on end stage and haven't usually found nearly enough. I'm looking forward to learning more as you continue your research, and I want you to know how grateful I am that you keep fighting the good fight and sharing with others. Your personal response to my email has bolstered my spirits all week, and I hope hearing from your readers continues to do the same for you! Thanks, again. Hug that cat!

Anonymous said...

My former partner is in hospital, dying of double pneumonia, in end stage alcoholism. We have been told there is no hope, he has no reserves to fight this and it is now just a matter of time. He is 48 years old. I locked him out of the house in May 2009, after 23 years together. We always had 'issues' around his drinking and for a while he was abstinent. Then there was a period of several years of him being fine and apparently alcohol-free for weeks or months at a time, then going on 'benders' which would last anything from two to six weeks, during which time he would be vile or completely 'out of it'. When sober, he could not explain why this was. I never knew when the next 'episode' was coming and lived on tenterhooks. I would make him leave, but always let him come home after his binges. Finally, two years ago, I didn't. Since then, despite drunk-in-charge Court appearances, Probation and Court-ordered alcohol counselling, the tireless support of medical and alcohol service professionals, hospital detoxes, countless resuscitations by ambulance crews and stints in Emergency and Intensive Care, all while he was under the devoted care of his 75-year-old mother, still he has continued his slow suicide. I have been this evening with our 20 year old daughter to see him in hospital. His once beautiful, muscular body has wasted away; his skin is covered in bruises and sores; his liver is distended and his belly is striated with angry red veins; his skull is shrunken and his face is shadowed and cadaverous; his blue eyes are strangely dark and intense in the yellow eye-whites; he is snatching each breath and fighting against his oxygen mask, his catheter, his covers and his saline drip; he is writhing with discomfort, agitated beyond communication or comprehension. This is a horrific way to die. I am devastated by guilt and shame because I could have said 'come home' and he would have lived a lot longer, even if in a slow downward spiral. Our daughter visited him in hospital three days ago. He was nagging her for money to buy vodka, while they transferred him from the ward to a single room to make his dying more private.

Anonymous said...

Linda,
Thank you so much for this blog. Its nice to know someone else is going through the insanity of this disease. My situation is very similiar to yours except its my 33 year old son, who I love dearly.He also has been through grand mal seizures and detox with the dts and very bad hallucinations. It seems his mind never recovered after the last time. My life pretty much revolves around caring for him. All of my family my other children included think I am nuts and won't even discuss it with me. Thanks so much for letting me know I am not alone.

Sally

Syd said...

I think that each of us has to make choices about what we are willing to do, how much we are willing to sacrifice. I am not willing to lose my life to the disease. I know others in Al-Anon who have lived with end stage alcoholism. One lady said that she learned to be at peace. I realize that I spent ,uch of my life impacted by the disease. I don't want to do that anymore.

Alcoholic Daze (ADDY) said...

Dear Linda, no, you are not alone. Since I "came out" and started telling people about Greg and how he died, it is surprising just how many others have been going through similar eperiences. Scratch the surface and there is so much alcoholism about these days. I know exactly what you are going through. It all sounds so familiar. Love and hugs to you from across the big pond and hope you have the strength to cope with this.

Susan said...

I have just started reading your blog and I am completely hooked.
I too am living with an end stage alcoholic, a 58 year old man in an 80 year old body.
I feel your sense of loneliness, one is alone because no one would believe it unless they lived it. Sharing with family and friends helps enormously, although my adult children are having a very hard time with this stage of their father's disease.
I believe we are nearing a critical point in this downward spiral towards death, and I can only say I am grateful for having found you at this moment in time as I anxiously wait for the next calamity to occur.
I look forward to your next posting!
Thank you!

Have Myelin? said...

I wanted to come back and say you are so not alone... we simply feel that way. It's a lonely feeling, I know....

grampadave said...

My experience has reflected the reality of the illness commonly called 'alcoholism' and all I can do is share my personal experience, which is that every single time for nearly forty years that I 'battled' or 'fought' alcohol I LOST, often badly. Twelve and a half years ago it killed my brother despite the fact that he was aware I had recovered and knew that help was available and recovery possible.

Alice said...

To the anonymous whose ex-partner is at end-stage and dying in hospital: please don't feel shame and guilt. I'm a recovering alcoholic, and much as I know how much my loved ones (in this case my parents) care for me, there is only so much destruction even the most loving person can take. I'm sorry for the toll alcoholism has taken on him and you and your loved ones, but while you grieve, don't feel you could have changed things. This happened because, sadly, he couldn't give up. I KNOW how hard it is.. and it's why I read blogs like this, because yes, it is very very sad to read stories like yours and Linda's but I need a reminder every day of how cunning, baffling, powerful this b&stard of a thing is.

Ann said...

The loneliness can be paralyzing.....

grampadave said...

Apologies for my laxity. I had intended to expand a bit on my previous comment but got sidetracked. I mentioned 'battling' and 'fighting' the alcohol problem for many years and losing every time. About twenty years ago I became a NYS Certified Alcohol/Substance Abuse Counselor and got As in every course in the curriculum. None of that knowledge helped me in the least. Approximately a year and a half after that I picked up a drink and that drunk lasted roughly another year and a half. My entire drinking 'career' between the ages of eighteen or so until the age of forty-seven was characterized by long periods of abstinence punctuated by the occasional roaring bender, as it were. At least thirty years back I quit once for well over three years but that ended with a drunk, then another and another, all spaced apart by many months and/or years of abstinence. When I was just plain 'not drinking' I was really not much more than a drunk without a drink, but on July 30 1994 I had my final drink of this lifetime. That day wasn't anything special or at least there was nothing to mark it as any different from any other day. However, within probably three weeks there came a time when I just KNEW way down deep inside that I had had my last drink. Shortly afterward I came to a realization that if I wanted to have any sort of quality life at all, it was going to be my responsibility to create that life. I didn't think my way into that state and the only way I can find to explain it or describe it that makes any sense is to say that it just happened to me. In the nearly seventeen years since that drink I've come to the understanding that what happened to me is what many AAs refer to as 'surrender'. From that time onward I can say that I don't think about drinking nor do I think about not drinking. The problem is gone, and I'll probably never have a clue as to the reason I was given this gift and my brother was offered recovery, passed on the opportunity and died at age 47 due to alcohol-related liver failure. Jeez, I hadn't planned on writing this long... I do want people out there to know that recovery is possible. Sadly, it's not very probable in a statistical sense but true recovery is indeed possible.

Anonymous said...

I have only just found your blog today and am finding it strangely comforting. My once beautiful, clever sister (who is 42) is in end stage as well. She has lost her home, her husband, her children, her whole life. The government pay for her flat and give her benefit money. She is at the stage of sleeping/drinking (vodka) all day and night, lying on a urine soaked mattress, not dressing, eating or bathing, getting a taxi to take her to the off-lisence and back again each day, as she can really walk any more. Her body is tiny, but her face has swollen up and it doesn't look like her anymore.

I don't actually have her in my life anymore, giving up on her about a year ago when my small children became frightened of her. My mum tries to make sure she eats etc (my mum is disabled) but knows it is now hopeless. My sister has severe alcoholic dementia.... We have planned her funeral, and pray for a quick painless death in her sleep. Its so tragic.

ScottF said...

Hi, I am glad you've found a bond with someone... alcoholic causes so much hurt for so many people. I will pray for you and Riley.

Anonymous said...

This may be great comfort to me. I'm so alone. My husband of 33 years is in end stage. There's no one to talk to except my dogs. My emotional detachment is good most of the time. But I lost it today. I've come to know what I'm facing and it's sad. I'm a very happy positive person but the day to day dealings wear me down at times. Cindy

Anonymous said...

I just found this blog. My husband isn't in end stage yet, but it won't be long. He drinks and gets drunk daily now, has lost his job, and has no friends except other alcoholics. I am glad I found your blog and very sorry for all of us that have to deal with this.

Anonymous said...

I am a reluctant caregiver for my 42 year old nephew. He has been drinking alcohol since his teen years, always high amounts. I have known for years that he had a drinking problem, not surprising as my sister ( his mother ) also had drug and alcohol issues. His mom and dad both died young , his mom 2 years ago, that is when I found out what a big problem he has. He became homeless after my sister passed and dealt with his situation the only way he knew how, drinking. He wound. Up in the ICU and stayed in a medically induced coma for 6 weeks. When it was time for him to be released he called me ! I live in a different state but told him he could stay with me as long as he didn't drink and went to Aa meetings. This worked for 3 months. My sister had left a little insurance money and he decided to get his own apt. I think he started drinking the day he left my house. Unfortunately , he decided he liked my area and has an apartment not far from me. He has met every down on their luck person in town and his apt has become a flop house. He has no car , no real friends, so try to help him with his finances , doctors, groceries.....He is going down fast. He is type 1 insulin depend ( juvenile ) diabetic, he stumbles around even when not drinking, has the extended abdomen and noticed the bags under his eyes are yellowed. It's sad , he has no one, No wife, kids, parents or siblings, Just me, yah !

Anonymous said...

I am married to a near end stage alcoholic. Any tips on how to cope with the total lack of hygiene? The smell is unbearable. Only a few teeth left, no personal care at all. The smell is what really drives me crazy!