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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, September 11, 2015

End of life reality

I don’t know why it always surprises me that Riley continues to be immortal. A few days ago we were told that he had only hours to live. The next day he rallied and he could live another year or more. We are living on a see-saw with Riley.

End-stage liver failure is a horrible way to die. I watch him as he struggles for words that fit the meaning of what he wants to say. I see the confusion on his face when I don’t understand what he’s talking about. Often he will be in mid-sentence and begin quoting phrases from books that he has read in the past.

Riley cannot control his bowels or his bladder. He doesn’t seem to have any cognitive awareness of his lack of continence. However, he will pick at his diaper until he can get it loose and remove it from his body. He then wants no covering and just wants it to be in the breeze -- so to speak. He has other people clean the feces from his buttocks, change his clothing, and give him a sponge bath.

There is no longer any sitting in his favorite chair or going to the kitchen and getting a snack whenever the mood hits him. He now has to ask for everything he wants and he must ask to be moved from one side to the other in his bed. He no longer has strength in his legs or arms to turn himself.

His appetite is about one-quarter of what it used to be and he doesn’t have any enthusiasm for his favorite foods. He won’t let anyone feed him and he ends up with most of his meal on the front of his T-shirt. Last night he decided to put his plate of tacos on the bed next to him so he could share it with the dog. The sheets were covered in taco stuff and the entire bed had to be changed,

The one thing he knows for sure is that he wants a beer or a drink. It was suggested that we try giving him a non-alcoholic beer to placate him. We tried that and the results were a disaster. He became the narcissistic, demanding, controlling drunk that he was when he was drinking. He was drunk on the “idea” of being drunk. There was no alcohol in the beer, but drinking the beer set off that ugly personality into motion. That experiment didn’t last more than a couple of days.

Even though he is NOT drinking and not even “pretend” drinking, he still thinks he is in fact drunk. When asked how he is, he’ll say that he’s pretty good considering he got really snockered last night. Or he might say that he “tied one on” or he’s “shit-faced”. Of course he is not any of those things because he does not get alcohol. But if he thinks he is and is happy with that, then I’m OK with that.

Riley doesn’t understand that we are not the typical married couple and believes our marriage has always been that of a loving devoted couple. He’s very proud that we’ve been married or “together” for nearly 50 years. He doesn’t remember that we were separated for more than 15 of those years and that we are only together now because he was sick. He looks round the room and wonders where are his friends? He doesn’t understand why he gets no phone calls or visitors. There’s a look of sadness when I remind him that his friends have died of alcoholism and the ones not dead didn’t want to put up with his egotistical, narcissistic, demanding personality. He doesn’t believe me. He thinks I’m keeping them from him. Whatever.

I know that most of the drinkers who read my blog will not use this information as a means to realize the end consequences of habitually drinking in excess. After all, they are alcoholics and possibly cannot make the logical link between Riley’s situation and their own drinking. That’s too bad because Riley is the reality of an alcoholic’s end-of-life.

The demands of caretaking Riley grow every day. I do have help, but for the majority of the day, it’s just me. I do it all. I’m tired – exhausted actually – and I’ve been sick. I find it difficult to keep up with my other responsibilities, like posting regularly on the blog or answering my e-mails. I want to be there for all of my readers, but it is a rare day when I can have the quiet time needed for writing.

We have a new hospice company and more help is on the way. So I ask all of you to please be patient with me and give me some time to get over this sickness and get my additional help set up. If you are “jonesing” for some of my stories, purchase my new book “That Reminds Me.” It is pleasant diversion from all the alcohol nonsense. Use the discount code: 2FX8X5C2 when you purchase through this link: https://www.createspace.com/5620032. This code is not good on any other purchasing site.

In my absence, there will be some guest posters with great information and points of view. I hope you will stop by and see what they have to offer.

Thank you everyone -- Linda


ADDY said...

Hi. My thoughts are with you as you go through this difficult end-stage. I have trod the path you are walking and it is not easy. At least my alcoholic's end-stage was in intensive care at our local hospital, but it was still not pretty to watch. Take all the time you need to gather your skirts and deal with the onslaught. You WILL get through this.

Jan said...

Another YEAR or more??? OMG, Linda - I'm so sorry. (I never thought I'd be saying that to a woman whose husband is going to live, believe me.)

Take care of yourself. We'll be here waiting to hear from you when you're ready.

Bev said...

Hard to image Riley has been able to hang on for this long. Maybe it's because he is oblivious to his situation. Linda all I can say is that you are 'one tough broad'! Most would have washed their hands of the whole thing by now but you have been there for Riley every step of the way. That's something to be very proud of : D

Anonymous said...

Linda. Thank you for all that you have done for me by writing your blog. My thoughts and prayers are with you as you continue your journey.

Anonymous said...

This too shall pass. Thank you for sharing all the gory details. I seriously appreciate it.
Another year? No. Can't be. Thinking of you.

Anonymous said...

For next time, it's possible to treat the symptoms of infection and make him comfortable without treating the infection itself with life-prolonging antibiotics. I know you're about having good information with which to make good decisions, so I thought I'd let you know.

Andrea Geric said...

I am sorry that you are going through this. Your compassion toward your husband is quite simply, amazing. I think you are right, alcoholics who are reading your post cannot possibly identify with your husband. They are immortal, and this is never going to them. Families on the other hand, will hear what you are saying, and hopefully be moved toward their own healing, regardless of what the alcoholic in their lives does. I wish you well on your own journey, and commend your strength.

Andrea Geric said...

Linda, I commend your compassion and strength as you walk this end of life journey with your husband. I agree that the alcoholics reading your post won't be able to identify, they are immortal. However, families will be able to hear you, and possibly find their own healing, regardless of what the alcoholic chooses to do.

Drymarc said...

Linda, I've been 4 years sober now (my soberversary is this coming Monday). I found your blog early on in my sobriety and your stories, with their humour and compassion and anger and heartache, helped me through some dark times. Knowing how badly I could hurt the people I love was a difficult thing to realise, but it was a crucial thing. You're right that a lot of us alcoholics might read your posts and not realise how they figure in to our own lives, but SOME of us will.

Whatever happens in the days and weeks ahead, just know that you have helped people by being so honest about your life, the good and the bad. Thank you.