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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.

Tuesday, July 31, 2012

Tell me how you really feel...

I’m excited an honored to find out that I’ve been recognized for excellence due to the contribution of excellent editorial work in the world of alcoholic addition. You can view the details here:

The site lists the “Top 20 Truly Exceptional Alcohol Addiction Resources”. Each of the 20 blogs have been reviewed on this site. It seems my site is a bit “old fashioned without many images”.  Maybe it's time for a re-vamp.
Now for today’s post:
Riley will be released from the nursing home on Friday. The nursing home has said they will help me get him into the van. I’m picking him up late in the afternoon so my grandson will be home by the time I return. He can help me get him up the flight of stairs that leads to the front door. His bed will be ready and waiting for him.

That will be a turning point in my life. Until I find a personal aide that I can afford, I will be at Riley’s beck and call 24 hours a day. I will begin my caretaker role in a whole new direction. While I’m not looking forward to it – I accept the inevitability of it. It is what it is and fighting it only makes me cranky. Crankiness is not something I want to display to my great-grandchildren who (in my mind) will be the one thing that makes giving up this country house worthwhile.
Riley is a handful. Even his nursing home nurses tell me that he is difficult because he refuses to cooperate and doesn’t understand his own limitations. His brain function doesn’t allow him to remember that he can’t walk to the bathroom. He has always been passive aggressive, so now it manifests itself in ways that cause his nurses to come running when he thinks he hasn’t had enough attention. He now lacks the ability to form reasonable logical conclusions or conversation. He truly doesn’t understand why he can’t go home to his very own place and continue living his life on his own.
I’m asked how I feel about that. How do I feel that he is a child in an adult’s body and I must tend to him? My answer is … well… how do you think I feel? Riley has so destroyed his own mind and body that he can no longer function even though he is sober. He has done this to himself. I want to feel some kind of empathy for him, but I do not. I want to be able to say – oh! He can’t help how he is. But, the truth is he COULD have prevented this and his choice was to stay on the insanity path and destroy everyone in the vicinity. So I feel angry with him for making those choices. I feel sadness that such an intelligent man was so stupid to not accept the opportunities that have been presented to him so many times. I’m hurt that he didn’t care about the outcome for the rest of the family. That’s how I feel.
But, how I feel really doesn’t matter. I never thought things would go this direction when I first took him back in. I wasn’t seeing the situation clearly when I made that decision. I would have still prevented my daughter from taking him into her home – but I might have searched for an option other than the one I choose. And there you have it – I CHOOSE to take him it. It was MY decision and now I must come to terms with the fact that I may have made the wrong choice. It’s just the same as Riley making a wrong choice. I’m really no different. The choice was made and now I must deal with it. Since Riley cannot be an adult, I must handle both of our choices in an adult manner for both of us.
The hospice care doctor says Riley LOOKS physically better, so he is better and is no longer dying. The doc says he sees “no decline” in his condition. I don’t agree. I see decline every time I go see him. No lab tests have been taken and as long as he is in the nursing home, none will be done. However, the doc was quick to tell me that I must be the “gatekeeper to the liquor cabinet.”  He tells me Riley has very little liver function and ANY alcohol at all could be a fatal drink. I explain that it isn’t just the liquor cabinet that Riley is interested in because he will drink anything he can get his hands on. The doctor says I must watch him 24/7 because his fate is in my hands. Isn’t that just peachy? It seems that now my entire role in life is to keep Riley alive by not allowing him what he wants as he proceeds to death’s door.
My uncle had emphysema. He had this portable oxygen tank that he pulled around with him. He smoked constantly even with the oxygen tank close by. I went to visit him as he was dying in his bed at home. His days were extremely short and I remember feeling so sad for the loss I was about to endure. He was always happy to see me. When I walked into the room he gave me a wide grin and said “Hey… honey… tell me like it is.” He was talking about what was going on in my life and not about his illness. As we talked, he asked me to hand him his cigarettes. I said no – he knew he wasn’t supposed to be smoking. His response was he was dying anyway, so what did it matter? I knew he was past the point of being saved and he was 93 years old. But I didn’t give him that cigarette. He died a few days later while smoking his last cigarette. In hindsight, I think I should not have denied his last bit of pleasure when he was so near the end of his life. Heck, I should have gotten him a top notch cigar.
When I was asked if I would give Riley alcohol when he returned home, I thought of my 93 year old uncle and his desire for that cigarette. At this point, before I’m actually faced with the decision, I’d have to say I will not serve Riley alcohol just like I didn’t get that cigarette. But, and this is a big BUT, if Riley expresses his anger in ways that makes him impossible for me to handle, I might just give him that drink. Of course, it won’t be enough for him and my fear is if I give an inch he will pressure me to make it a mile. So, I guess my answer is – I don’t know.
I’ve been a caretaker before so I know how difficult it will be. Every time in the past, I had a lot of support and relief. I was not in it alone. This time, it’s just me. Unless I can find a personal care aid who will work for homemade peanut butter cookies – it’s all on my shoulders. It’s OK. My shoulders may not be wide, but they are strong. Psychologically I’m stronger than Riley. I can do this and I will do it to the best of my ability. After all, I’ve always been an over-achiever.
Somewhere in the back of my mind, I think – it’s too bad that the functional alcoholics who read my blog can’t come and sit with Riley for 48 hours. Let each of them take care of him for just a weekend. This would show them what their lives might be like if they continue to drink themselves into oblivion. Maybe instead of picking up trash alongside the road, the legal system could use caretaking Riley as a form of community service. If they saw what the future could hold -- maybe – just maybe – their choice would switch from insanity to sobriety. Maybe they would choose not to be a child in the body of a 70 year old.

33 comments:

msterfun said...

That's a tough spot. As the son of an alcoholic i dont think they should be able to make people be responsible for an alcoholic's care or well being. Given how alcoholics generally treat their family, i don't think they should expect more than to be shoved down a flight of stairs. As the punishment for that is pretty steep, allowing them to drink is the next best thing.

Cheers!
bottoms up!

Syd said...

I hope that you don't give him that drink. I think that you've answered this before but what about Medicaid and leaving him in the nursing home? That would be better than your having to take care of him. You had a good respite from taking care of Riley and now are back in it again. It was difficult on you and on Riley before. I don't see this time as being any different. Hoping that you can make a decision that is best for you.

Syd said...

I don't hold much credence with the 20 top blog thing since they have me as being alcoholic! And that many of my family members are alcoholic. Oh well....

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

About Medicaid -- I filled out all the paperwork for both nursing home care and CAP (which would give me a personal aide). The end result is that ALL of Riley's income would go to Medicaid for his nursing home care. Since we still have joint bills to be paid and I plan on living a bit longer, I could not afford to pay all the bills and my own living expenses on just my social security. Also if he were approved for VA disability and an income came fromt that -- it would also go to Medicaid. It doesn't matter that the total income they would be getting would be way over the amount it would cost to keep him in a nursing home. They take it all.

As for CAP -- we would have to have bills for a personal aid amounting to more than $3k each month before they would pay. I'm going to try to find a nursing student or some other person to come in for a few hours a week. I think I can find someone for less than $3K per month.

What's different this time is that Riley will not be so mobile. His brain function gets worse by the day. He can't even read the letters Syd sends him.

My choice is live in complete and utter poverty since the savings and retirement accounts have been used up completely over the past year. OR -- take him back and try to do the best I can until I hear back about his VA Disability Claim -- probably about 7 more months. Once that comes thru other choices may open up for me. I'm in wait and see status.

Jackie said...

Linda
I'm not sure why you are taking Riley home to take care of him again. Are you codependent? It sounds like you are because at this point you could place him elsewhere. Like on other posts, it has been mentioned that the nursing home can't force you to take him in, if you aren't healthy enough to do so. You should refuse and let them help you find a safe place for him to remain until the end of his life.
I don't usually agree with msterfun, see his comment above, but I agree with his feelings and comment. Let Riley have his drink. He will be happy, sedated and hopefully quiet. Then just wait for him to succumb to what he wishes. And I do believe at this time in his life he is ready to go. He has no more quality of body, mind and spirit. His soul has already flown away.

dorothyrecovers.com said...

Linda, Thank you so much for sharing your life with the world. Reading your blog has helped me know that we all have options and choices. You help me to see the true picture of end-stage alcoholism.

jo said...

what a tough place. i do see i will also be in it someday. what would i do? no idea. at times i think mine is lucky i dont clobber him now.

yes,medicaid takes all but 50 or 75$.it is what it is. im not sure i wouldnt go that way and say to hell with the bills and sit in the dark if i had to. caring for them is so much more than it sounds. it will kill ya mentally.

boy, watch if you decide to give him alcohol. i would think big brother is watching this closely. im not sure the answer...his choice and it would kill him..but you would be helping it along..its a mess.

i hate it. i hate them for doing this and society for having no way to do anything and alcohol for existing. im so sorry, linda. but this reality for anyone close to a addict.

and i have no useful answers. there are none. only worse and worser.

jo

Anonymous said...

So much for the "mothering" thing. Diapers and a diaper pail might be a possible solution for the urine and feces issues. That's how "mothers" deal with it. It would be cheaper than a liter of alcohol a day. At least your living place would not stink and be contaminated. Those Depends can be a bit pricey. I'm just saying....hee, hee, hee. LOL

Kibble said...

Jackie,
It's true that the nursing home can't force Linda to take Riley home. But if she declines, they will start billing her for his stay since he is no longer eligible for hospice care at the nursing home. The same for finding some place else, there are places out there but typically start at $6,000 per month and Linda doesn't have that much between her and Riley's combined income.
However, Linda has been misled in terms of how much they will leave her with, unless her Social Security is over $1,800 per month. For those who will face this issue in the future, the community spouse is given a living allowance out of the combined incomes and the rest goes to pay for the care. The amount is different in every state, but it's to prevent the spouse from falling into poverty and needing state support herself. I'm not sure what Lindas definition of abject poverty is, but if you Google "Medicaid spousal impoverishment" you can find more information. I hope Linda seeks out an advocate, because she's being given bad information. You may wonder why the home wold do this, but it's because they want people who are private pay and Medicare, both of which pay the facility much more per day than Medicaid.
As far as taking all of his VA disability, it's true that if and when he gets it the facility could take the entire thing but only to cover what Medicaid had paid in, for example if Medicaid had paid in $2K per month they could recover that, but not indefinitely.
Jo, not surprised you believe big brother will be watching, that's been your theme for a while. Conspiracy, the medical community out to get you and yours personally, etc. This may be hard to believe, but it's incredibly difficult to get adult protective services to respond even when someone is being neglected and abused on a regular basis. Believe me, they have NO concern about people being given legal intoxicants as long as the drinker doesn't then drive or harm someone else. They just don't have the manpower to care what consenting adults do.
Linda, don't forget that if Riley has a qualifying admission, which is three days, in an acute setting, he then qualifies for a Medicare paid in full stay at a SNF for up to 30 days, and then up to 100 days with a copay, which was $122 per day last time I checked.

Anonymous said...

Webster's New World Dictionary:
rationalize-to devise plausible explanations for (one's acts, beliefs, opinions, etc.), usually in self-deception.

Jackie said...

Kibble - Thank you for the information.
I mentioned in earlier posts if Linda would have at least one appt. with an attorney she would be told much of what you posted as well as receive some professional guidence on the issues she so desperately needs. Just one visit with a reputable attorney may be all she will need and may be priceless for her. But after reading her post here, I can see she may have a few solutions she can achieve in the next several months. Of course it sounds like Riley may not last that long this time. This may be his last rehab and going home trip.
Linda - I wish you the best and I understand how difficult this is for you. Also I understand at your age you don't want to lose everything while Riley spends his last days in a facility. But again, on the other hand, there is a part of me thinking that living on beans & cornbread in a small place with very limited income so I could avoid living with an alcoholic any longer would be inviting. A good example of "Less is more". After his death will you not still be able to receive his social security instead of yours if it is the higher of the two? You haven't mentioned your income after his death. If you have, I must have missed reading that detail.

Anonymous said...

Hi

Your story doesn't need pictures. You describe things with spirit and exactitude, and you let us listen while you think things through. It's gripping. No need for illustratative frills.

EFK

ADDY said...

The merry-go-round continues for you. Some tough questions and answers for you. I agree with your last paragraph too. If people could have seen how Greg died, it might have stopped them from drinking, but then again, I doubt it.

Glenn said...

"But, the truth is he COULD have prevented this and his choice was to stay on the insanity path and destroy everyone in the vicinity. So I feel angry with him for making those choices. I feel sadness that such an intelligent man was so stupid to not accept the opportunities that have been presented to him so many times." This really resonnated with me. Two months ago, I lost a dear friend and former partner to alcoholism. I've watched his downward sprial for the last two years. Despite his intellect (he has an MBA) he refused to get the help that was offered to him so many times. He was falling constantly in the weeks before his death. He fell for a final time and broke his arm. He refused treatment and the wound got infected. He died of sepsis. He was 45 years old.

Gabriele Goldstone said...

What an unfeeling doctor to put the weight of Riley on your shoulders! In Canada, here, I'd have to pay a portion of my spouse's medical costs, - something I'd resent, of course - but not nearly as much as it appears you have to.

I guess all I can do is pray that your immortal will become mortal ASAP

Things are bad at my house right now. The future is frightening.

Anonymous said...

I guess the deal is done, Riley comes home, you reengage in the insanity. I would have thought your own life was worth more than the careful calculation of his benefits. I believe you are co-dependent. I feel like you have let us down by taking him back and I also feel like when you buy him that vodka (which you will do) that will be the kicker.

jo said...

Kibble. my sponsor in al anon was a wonderful elderly lady in calif.

she had the cops and adult protective services called on her due to her A falling so much. last i heard she was on a watch thing where they came in and checked him twice a week. she was warned she would go to jail if he got hurt again.

how she was sposed to prevent this, neither she nor i had any idea. she was terrified, a sweet lady in her 70's...and trust me...big brother is alive and well.

tell her about your ideas. she is living it. one ER dr called them..and on it went, into the maze called the system. she couldnt make him do anything, and she provided his alcohol.

mo said...

Dear anonymous....WHAT THE HELL ELSE IS SHE SUPPOSED TO DO?? WHAT WOULD YOU DO IN HER SITUATION?? You are so quick to criticize...give her some options, IF YOU HAVE ANY!!!

Furtheron said...

I'll read the post in a moment... glad the reviewer took time to read the content then! Sorry but saying it looks out of date is a bit naff - btw I read most blogs through an RSS reader, I only visit the site to comment so the format etc. is lost on people like me!!!

Furtheron said...

What a tough place you are in.

What can you do? I feel for you on this, it sounds so horrible.

Frankly if Riley asks for the drink what can you do? Give it too him with the consequences that brings and be blamed by others (with little knowledge) of enabling him in his addiction. But it is his addiction for him to give up he hasn't in the face of all the warning to him so why not give him the drink?

However whatever small crumb of comfort to you in the madness - reading this stuff helps my resolve to stay sober and never return to the insanity - for today I'm not planning a drink - I hope that continues for many days to come

Anonymous said...

Linda,
I am so sorry for your indescribably difficult situation. If there were answers, we would give them. You are undoubtedly well past weary. Rest, relief, and end to this surely seems impossible. But one day, it will end forever. It's the miserable, slow end that is so hard, though, on the family/caregivers. Thoughts and hopeful prayers with you...

Suzie said...

Linda,
Please do not allow these heartless comments to cause you to lose your vision for what you are accomplishing here (and it is huge!) I know that these people have never walked in your shoes or they could not possibly say these things. This world we live in is not black and white and most especially the alcoholic world. It is filled with fear, anger, ridicule, isolation and a total loss of understanding from the uninformed. You with your blog are doing so much good. Hold your head high and please continue to share your heart with us. You are strong because you are able to express your weakness. We love you!

Anonymous said...

Thanks for the post. I enjoy reading what you write. I got clean and sober with the help of sober living called New Life House. Check them out if you are looking for help.

Anonymous said...

I've just discovered your blog, my partner is getting to the late stages of alcoholism. I admire and respect what you have put together in your blog. I suspect I will spend a good chunk of time reading your story.

No-one will ever know what is right for another person to do in these circumstances. We can only be guided by our individual conscience. Well and not so well intentioned people can make the road so much harder to endure through their own ignorance or agendas.

I admire your courage and honesty

Anonymous said...

I'm returning to your blog. My FIL passed in Febuary on his grandsons birthday. We burried him on the flat not far from the welcome center and the columbarium holding his parrents and brother in Arlington national. It rained through the service postponeing the flyover he earned with his DFC. He went much quicker and at 53 but the mess did not pass with him. The ruined finances, the junk bought on ebay and the loss of what should be a productive retirement guideing his grand children are still,... lingering. So is the guilt and second guessing of not planting a foot far enough up his butt to make him see the light.

Anonymous said...

I have just discovered this blog; I had actually thought about starting one myself, but this one is fantastic and offers us all a chance to comfort and find comfort. I expect I'll be posting regularly. I'm 65 years old and married (nearly 40 years) to a high functioning (maybe not so much anymore) 82 year old alcoholic. We have no children and I've been the primary bread winner for much of our married life which maybe gives me more options. But none of this changes what this kind of life does to our emotional and physical health. The power of love is amazing; sometimes I wonder if it leads us to accept too much, or if it is what has allowed us to survive years of abuse.
I'll sign off as anonymous until I figure out a better method!

jaymie williams said...

Hi! Congratulations for being acknowledge to be one of the top blogger about alcoholism. Your work is surely impressive. Anyone who will read it would say the same thing. Job well done.

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Dustin said...

I found your blog as a result of it being one of the top sober blogs around! Thanks for sharing your life with us...I really appreciate your words. I will follow your posts!

Kay said...

I'm reading your blog while my brother lies in the hospital with ascites (fluid in the stomach), cirrhosis, not coherent, with vocal cords so weakened that he sounds like he has a laryngeal box. He cannot walk and is very confused with a low sodium level. The doctor said that eventually he will be okay after a lot of rehab but if he ever takes another drink he'll die.

This disease is horrid, and I don't know how he will handle not drinking as he lives alone. I want to think that the best can happen, but I still am wondering if he will ever have his voice again, be able to walk across the floor, and come back from the terrible state he is in now. He is still shaking, but it has improved somewhat. He will be in the hospital for awhile before he enters the rehab.

I am already the caregiver for an aging bed-ridden mother, which is fine I do it willingly.

I'm sorry, Linda, for this terrible disease.

Anonymous said...

Linda, You have so generously shared your experiences and insight that I feel related to you. I am 59. Married for 40 years. I can see the similarities between Riley and my husband as I also see the similarities between you and me. Almost frightening.

About 5 years ago, I saw the light and realized that I needed to take my finances into my own hands. Having been an at home Mom for so many years - I went out a found a job. Average pay - but good benefits to carry me through. That job saved me. I didn't realize how my self-esteem had suffered. I have a place where I can go for 8 hours and forget the misery that is lying in a drunken stupor in the back bedroom. I can laugh and enjoy sanity and help other people in the process.

There are days when driving home, I fear that I will walk into the door to find him dead. Other days - I fear that I will find him alive.I wonder how long can a body suffer such abuse. I work in a hospital and see innocent young children suffer. Its hard to see the two extremes and make sense of it.

I pray for myself and my husband and for you and Riley. As for giving him a drink .... hell no. A cigarette may be deadly but it does not change the personality and psyche as does alcohol. The 2nd day after my husband stops drinking - he becomes a shadow of the man I fell in love with and there is still someone there to love. I would not give him a sip of the poison that destroyed "us".

Bev said...

Linda, I'm posting here as this is the last post you wrote and I imagine that you are moderating the comments when time allows. Just wanted to say I've missed reading your updates and hope all is well. Realize that your making some mighty big adjustments in your life right now, plus a body needs time to just 'be' and watch the clouds roll by.

I never know what to say - I just feel compelled to comment - there are so many of us in the same boat and knowing that gives some comfort but alcoholism is a disease like no other and even though we have each other here we all face it alone at home.

Sending hugs to all here.



Anonymous said...

So happy to find your blog. I am now watching my ex-husband go thru the end stages of alcoholism. Even though I thought I was prepared, its quite shocking...to see the man who was so 'pulled together'..now is so confused, does'nt wash himself, or clean his apt. Also does'nt seem to be eating. The family is trying to help, but he can become hostile at times, as wants the control to do things his way, and when he wants to do it..which is never.

Its so hard to watch, I know I would go insane to live with one, at this stage. I know its a disease, but it really affects the life of everyone close to them.

Your style of writing is very good, and will help many people who find your blog.

I wish you as much peace as you can find in your life right now, and more happiness in your future. Thanks for doing this blog

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