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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.

Saturday, December 5, 2015

A typical day

“Where are my friends?” Riley asks almost daily. “What have you done with my money?” he accuses. “How did I get so sick?” “Why are you keeping me prisoner here?” “Get me out of this bed!”

I answer him as honestly as I can, but my answers are met with hostility. Such is the life of a caretaker of a very end-stage alcoholic. Although I’ve been told he has less than six months, I know from past experience that this could go on much, much, longer. I don’t know if my health will allow me to see this all the way through to Riley’s end.

There is a light and it is NOT an on-coming train. He might be accepted into the Vet’s Hospice Program and be placed in the hospice unit at the VA hospital. He would be allowed to stay there for six months. What a blessing that would be!
Since he has no “percentage” (an amount of disability created by military service) attached to his disability, this is our only opinion at this time.

When an alcoholic is sitting at a bar or table or whatever, I’m sure they don’t say “Oh, I really want to cause a lot of problems for my spouse so I’m going to abuse my body in every way and then she/he will have to take care of me at the end.” I don’t even think alcoholics know how truly bad the end is. And, if they truly did understand how bad the end is, I’m not sure it would stop them from drinking to oblivion,

Riley is truly unhappy. He doesn’t understand why he is sequestered to his room and not able to get out of bed. He thinks he is perfectly fine. He thinks he can walk. He thinks he can drive. He thinks he’s being held prisoner in some isolated place in the country. He doesn’t believe drinking has sent him into hospice. He says he’s at a normal place for a man who is 76 years old.

A typical day with Riley starts out with him calling my name over and over again until I appear at the food of his bed. I ask what he needs, but I already know. He wants coffee in his favorite coffee cup. I bring him breakfast, juice and coffee in a no-spill traveler’s mug. He tells me he wants his cup. I tell him I won’t give him the other cup because he pours his coffee into his bed. He says that is of no concern of mine. When I tell him it’s too hard for me to change his clothes and bedding, he says for me not to change it. He wants his cup or he won’t drink coffee at all. That’s OK by me – that much more in the pot for me.

He watches some TV but when he is tired of that, he calls me into his room over and over again. When I ask what he needs, he says he doesn’t know or he just wanted to see if I would come. Sometimes he wants me to come and sit and talk to him. If I do, the conversation is always about how I should spent the money, how to clean the bathroom, what to cook for dinner, and a million other things over which he has no control and no idea actually how to do them.

I hear him manipulating his bed and pulling on the side rails. I ask him to please stop because he is tearing his bed apart. He says that is good because he wants to ruin the bed rails so he can get in and out. He pulls on the rails and tells me he is exercising to regain his upper body strength. I tell him his legs are not strong enough for him to stand up or walk. He insists that I’m lying to him.

Our day continues with him calling me about every 10 minutes. He drops his TV remote, glasses and water bottle on the floor. Mostly I try to ignore his calls because I know he is not in danger and has everything he needs. Ignoring him is hard.

When the sun goes down a whole new person emerges from Riley. The hallucinations start. He becomes paranoid believing that some person is trying to find him and kill him. He thinks the perimeter of the house has bombs in black boxes lined up around the outside of the house. The phones are bugged and we must not use them. He calls for his imaginary secret service agent to come keep him safe. The agent’s name is Tim. He will only drink water from a sealed plastic bottle because he believes our well has been compromised.

Sometimes he has “submarine” hallucinations. He believes he is on a submarine and doesn’t understand why I am there. He tells me to get out. Then he asks if his ex-o knows where he is. He will yell at me that he is a submariner and submariners do not get sick nor do they go to the hospital. If they do get sick, they do not talk to anyone. I can see the panic in his face. I don’t know why he’s so frightened, but he is terrified.

If you are a caretaker of an alcoholic, this could be what your future looks like. It seems to be never ending. My own health deteriorates from the sheer exhaustion of it all. I can get respite for five days, but the budget is so strained that I can’t afford to pamper myself with a couple of days away. The nurse suggested I go to a hotel and just be by myself, sleep, rest, order room service and take advantage of the amenities. There is no room in the budget for something so frivolous. I stay home and spend the time cleaning his room, doing all the laundry, cleaning the bathroom, organizing his supplies. I must take advantage of his absence to do things that are difficult when he is present.

I don’t mean for this to be a “woe is me” I have it so bad kinda post. But, if you are a caretaker of an immortal alcoholic, prepare yourself now before you are in my situation. Start making arrangements for a nursing home or at least have a plan on how to get some peace and quiet respite. You will need it and you deserve it. 


JBthatsme said...

Hi Linda, this is my first post, and I want to start by saying that I wished I had found it years ago. I came across your blog after googling "what to do when alcohol kills someone you love". The horrid, painful, belittling, monster of a disease killed my father just under a month ago. Sadly our relationship had gotten so badly tarnished over the past few years we were barely speaking to each other, despite living in the same house. Though I do not know you, or the others who have posted, personally, my heart goes out to you all, as I know what you're talking about. I know first hand the monster that alcohol creates. Naysayers are welcome to their opinions, but you can't make this shit up, and even if you could, who would want to, it's so incredibly depressing. I wish Riley would take notice of the gift you are giving him, it's in no way easy. I've often thought my mom was crazy for putting up with what she did in taking care of my father. Sadly as much as we wish it were different, love doesn't always conquer all, some people can't put down the bottle (or other addictions). My story, like anyone else's cannot easily be summed up in one blog post, but I wanted to tell you that I appreciate what you're doing, and like I said I wish I had found your blog years ago. I feel an insane amount of guilt after my father's passing, because things between us had gotten so ugly that we really weren't speaking. Thoughts, prayers, and blessings to you all. ~JB

ADDY said...

Sadly this respite care is not available in the UK. My respite came when he died. I had meetings and arguments with medical staff to get me relief beforehand, but they could not help and did not fully understand...I do not think they had truly experienced living with an alcoholic to know the problem. It is tough, it is horrible to watch and live with, but the end will inevitably come. Stay strong - it sounds like it won't be long.

Jacqueline Moss said...

Good morning, Linda! 😊

Oh how my heart goes out to you, Riley and your family! I prayed for you this morning that God would provide you with health, strength, sanity, rest and peace of mind.

I can't imagine the toll all of this has taken on you! I commend and praise you for the compassion and care you are giving your husband! It must be so incredibly difficult for you to see the man you love in this condition!

I believe God brought us together through blogging and social media to be of help and support to each other.

Your strength, perseverance and articles inspire and motivate me in my sobriety and helping other alcoholics and their loved ones!

Thank you, Linda, God bless...and please smile today!😀

Anonymous said...

Hello Linda. Big hug to you. Your attitude is amazing and your strength incredible.Thank you for telling your story. This is also my very first post but I cannot tell you how helpful your blog has been to me. I found it a while ago while doing research about alcoholism as well. It's a whole different world and it's sad yet wonderful to read that we are NOT alone in this "other world". I've been married to my alcoholic husband for 29 years. I don't feel as lost or alone anymore. I am working on taking care of myself more so that I stay strong and not lose my sparkle and zest for life because of his alcoholic madness. Inner peace is my daily goal. Thank you so very much for your knowledge and honesty. Wishing you peace and love and most especially strength as you move through this next phase. xo

avery Daigrepont said...

My husband passed away in May due to this horrible disease at the age of 47. I watched him drink a half gallon of vodka for the last 3 years. I begged him to get help or go to the doctor he refused. As a husband he was perfect in every way. He was not the typical mean alcoholic. I miss him so much and wish I could just speak to him. I never thought 10 years ago i would be a widow at the age of 33. Be thankful for what you have and try to spend as much time as you can with him. The guilt that I have is unbearable at time. I wish I could go back 6 months before his death and j would do things so much differently. I remember him asking me to go and lay the bed with him but because be would shake and talk so much I could not sleep... I had no idea at the time my husband was dying until I brought him into the ER because he could not use the bathroom. He was talking and within 3 hours he was on a vent in the ICU. He stayed this way for 3 weeks as I watched his organs fail one by one. Cherish your moments.

Anonymous said...

Hi Linda. I can not even start to imagine what you are going through right now, but I need to thank you for sharing. Maybe all of our gratitude will help you through this (hopefully) last leg of the journey. Hugs.

Jan said...

Linda, will the doctor prescribe Ativan or something to calm/sedate Riley? My husband went through this agitated stage at the very end and it did help. Best wishes.


Teresa said...

I can relate to this so much!! Garry is still functioning daily at work (I'm not sure how he does it) but when he is at home it is like a little kid all over again! I am thankful that I am able to work, at least that gives me a 8 hr break, but when I am home it is a job itself just trying to appease him!
The mood swings from the hepatic encephalopathy are something else. He will be fine one minute, then something will set him off and nothing will please him.
Saturday when Carissa and I were shopping, he must have taken a nap after work because I didn't hear from him till about 5, then all hell broke loose!! " Where were we,what the fuck were we doing trying to piss him off!!" then hang up on us, then call back in about 10 minutes and the same thing over again. Our lives are to revolve around him and him only!! Heaven forbid we doing something without him!!
People always say make time for yourself but nobody is willing to step up and come spend time with him so I can have a break.
It has gotten worse since he lost his friend Eddie, as they had so much in common and did spend a lot of time together, they knew how to deal with each other, now it is just me and the kids (they have a hard time dealing with him also, as they don't understand completely).
He has very mean spells!! Yes he can be verbally abusing and very unsupportive!!
People do not understand what it is like!!

Anonymous said...

Hi Linda. I read your blog a lot to help in my situation. As I am writing tho I am sitting next to the hospital bed of my 50 year old husband. He went on a 5 day binge and quit taking his bipolar meds too. He is in hospital not only to stabilize but he now has a new condition that makes his skeletal muscles waste away wreaking havoc in his body. He had a seizure and that is what got us here. He is end stage as well and we go periods (short) of sobriety marked by binge drinking in between. He is a sweet soul when sober but his evil twin emerges when drunk. He can drinks two fifths of vodka in 24 hours when he binged. Anyway, I wanted to thank you for your blog. Some days it is what keeps me going. Thank you for your candor.

Anonymous said...

Happy New year to all of us. May we have strength to get through our daily struggles with this insanity. @anonymous post Jan 1 - so sorry for what you are going through. 😞 Is the new condition of muscle wasting because of his alcoholism or something entirely different? My husband is losing muscle mass as well and I believe it's from the alcoholism. Just curious about how the doctors explained it. Lack of nutrition and vitamin deficiency is common at end stage. Stay strong and take care of you!

Anonymous said...

@Anonymous, yes his muscle wasting is called rabdo and can be caused by alcohol intoxication as well as seizures. His seizures are alcohol related. His mental status is altered from this thing plus alcohol. Basically, he could have died this time. He is rallying though so we will see. His body cannot keep detoxing like this along with new things cropping up. Ironically his blood alcohol was normal when admitted and his liver function is good too. Go figure!

Anonymous said...

@Anonymous - Thank you for your reply about the rabdo. That's sad. The seizures and altered mental status is sad too. How much can a body take? Always hoping this "rock bottom" will turn things around but that's not likely. I used to be more positive-- lately I've become more of a realist- I think it's better to be hopeful but not unrealistic. Hope you get some peace. ❤️