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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, January 31, 2017

Lost --- My killer instinct

I guess I’m just not good at killing people. I confess that I have, in the past, tried to ignore the pleas from Riley to “help him.” But when it comes right down to it – I just can’t do it.

Riley has been in and out of hospice a lot over the past couple of years. But, I guess I’m also not a very good participant as the caregiver of someone in hospice. Or maybe, just maybe, hospice failed me.

Early in January Riley lost his sense of where he was or who he was or when it was. He drifted into his imaginary world of submarines and destroyers where there is a constant battle with an imaginary enemy. This time the enemy was anyone he knew. His imaginary crew members were the only ones he trusted.

All of this type of behavior usually points to a urinary tract infection. A round of Cipro was ordered but it had no effect at all. I kept asking for help from hospice, but they would only say that they didn’t know what was going on. They did say that whatever was happening had nothing to do with him being at end of life. In fact, hospice just kept saying, we don’t know… we don’t know, but he is not dying. Well, they are medical professions – aren’t they? Surely, they must have seen this before – haven’t they?

I was confused. I watched as Riley slipped deeper into his fantasy world. The color of his urine was not right and his output was very low. If this was how it was to progress to the end, so be it. But, if what was happening had nothing to do with the end being in sight – wasn’t I obligated to get him some help?

After another day or two, I cancelled hospice, called the paramedics and took him to the emergency room. They admitted him and after many tests I was told that he had the worst infection in the history of the hospital and if I had not brought him in when I did he would have been dead within two days. Oh my gosh!! What had I done!?! I saved a life when he did not want to be saved. Or so he says…

Since he now was out of hospice, I would have no one to help with bathing him or caring for him. I was on my own again. After a discussion with the hospital social worker, I decided for him to go into a nursing/rehab facility. While there he would have physical therapists to help him regain the strength to get himself into the wheel chair. That would be a big help for me.

Riley will be in the nursing home until the end of March. Then he will come home if I can’t find a way to pay for him to stay long term, which is highly unlikely.

In the meantime, when I visit Riley, he is mean and accusatory because I did not let him die. And if I won’t let him die, I should supply him with alcohol. It’s been nearly five years since Riley has drank and STILL he keeps asking for his beloved drink. When he starts his raves about how I must take care of him because I did not let him die, I tell him I’m going and leave.

I try to think of how it would be easier for me to let him die if things had gone down a different path. I believed hospice would stay at my house while Riley was dying so the burden would not be totally on me. I thought they would provide me support so I could see it through. But, I was alone.

How ironic that I feel that if I had been a better person, I would have been able to do nothing and wait for whatever the outcome would be. So, I’d be a better person if I had let him die.

I wonder how assassins manage to put morals aside to do their job. Not sure how to resolve this issue and still be able to live with myself.


Kathryn said...

Disturbing that the hospice didn't order a urinalysis with culture and sensitivity. It's a very inexpensive way to point you toward the correct antibiotic, and because it didn't have anything to do with his terminal diagnosis, end stage cirrhosis, could have been charged to his Medicare or other insurance. But that's water over the dam.

I'm wondering though if the time will ever come when you allow Riley a natural death. He wants it so badly. Maybe the next time he's in the hospital, possibly with something not so easily fixed as a UTI, you can get a palliative consult and get the support you need in the hospital to make him comfort care only, and let him slip away. I surely can understand why it's more difficult when you are home alone with him.

Anonymous said...

wow sad but true my husband is sooo sick and does not want to go to any doctors I truly believe his wish is to stay home and go in his sleep!It stressful wondering do I call an ambulance or not . Whatever happens I will not blame myself Ive helped as Im sure youve had all you could .The decision to get sober was theirs .I dont say this non chalantly I was a crack smoker for twenty years and Ive been clean almost four years with only three or four days of taking that hit but got off the ride the very next day!Ive had days where I literally had to clean feces off this man,but you know what the next day Im going to the mountains skiing,and hes on his own!!! irefuse to thr ow away anymore of my life. Im there for him but Im here for me too. Let the leaves blow and land where they may,and trust that in the end everything is as it should be even if we dont understand why.


Andrea said...

I was wondering if you could help me with determining whether or not my 37-year-old sister is close to end stage. She was diagnosed with fatty liver disease 6 months ago, went through DTS, did a 30-day stent in rehab, immediately started drinking again and hasn't stopped. She will drink a fifth or more of vodka during a bender, but doesn't always drink that much (I am not sure if she drinks every day, but she does live with my dad so we know it isn't "bender" type drinking every day). She continues to work as a nurse and seems to be able to somewhat function, although I'm told she makes a lot of mistakes where she normally never would have before. My biggest concern is the severe loss of short-term memory. I don't mean she forgets what she had for breakfast the day before, I mean if you ask her how her daughter's recital was the day before she will tell you she doesn't know because she didn't go (she did go - my dad took her and they sat together). If you ask her to pay a bill and an hour later ask her if she did she will say you never gave her the bill. It is terrifying to watch. She won't see a doctor so I'm not sure how we would have her diagnosed, and she is very apathetic and does not see any point in seeking help. She also doesn't seem to care that she has lost her children or anything else. I do know that her body cannot metabolize alcohol much anymore because you can still smell the alcohol on her the next night after a bender. Do we just have to wait until she is non-functioning?

Gabriele Goldstone said...

I read your blog sporadically, hoping that things have gotten better. (Not just for your sake, but for mine, too.) Always disappointed. Hang in there...seriously...he can't really be immortal. Hugs.

Anonymous said...

i am sad for you both. if you are unable to divorce him and let the state take over, then ask your daughter when she thinks that you should get to live. and if it's about money, then acknowledge it as such.

Mark said...

Can hospice help pay since they nearly let him die. They misdiagnosed him. They did nothing. At least that is neglect. It has to be a violation of their ethical duties. Call an attorney. Maybe the attorney can get hospice back, or get them to pay for long term care at his current facility

Jennifer said...

How frustrating this must be... I am 45 yr with a husband who socially drinks a little more than he should at times but my father lives with us, he is a 65 yr old alcoholic in end stage liver failure, I also have 3 daughters that are in the house as well, 19,17,14...they have to see this display of my father -John ... we have tried to detox him but that ended up with him in the hospital because his body could not process the Librium... so he went to a nursing home after to get physically welll as he could possibly get... than he will stop drinking for a few weeks and than start up again hard. All of our holidays are ruined by his drunken behavior all the time!! It's horrible, I used to have a lot of family come to our house for holidays and now we are down to just having 1 guest who is my uncle who is an alcoholic himself. My sister died a few years ago from alcoholism. And my brother will not speak to my dad anymore.. so everything lays on me.

2 nights ago my dad left the house in an ambulance cause he was projectile vomiting blood. As far as I can read up on this and with all his other health problems such as ammonia levels in his blood, his dark urine, he misses the toilet and I have to clean up after him, we got him to wear depends at times but he actually likes that so he does not have to stumble to the bathroom with a potential fall. He has his own bathroom that I will not let anyone else use because of him MRSA and other diseases. O. Top of all this he is a nasty drunk. He actually kicked me in my stomach a few days ago when I tried to take his huge 2nd bottle of Jagermiester away for the night.

He says that he is going to outlive all of us and I'm staying to believe him. When will this madness end. He is late stages of cirrhosis, has kidney damage, COPD, high blood pressure, high levels of ammonia in his blood and major acitis, he look like he's going to have triplets his tummy is so swollen. And yet he keeps going on..he actually can make it to work. He lost his license to drunk driving so he gets a ride when he is not too messed up to go in. I'm sure his co workers are getting sick of this too. He smells like he is rotting from the inside out! I just need to know how much longer can he go on like this!! I'm ready for him to just die already. He's in the hospital now, vomiting blood, can't eat or drink, and had tar like stool and dark urine and yet he's probably going to come home in a few days and the madnesses will continue. Joe much longer can I do this!! How can I make sure his affairs are in order? He has alot of money but it will "float around" when he dies unless he gets his will in order. I just want this to end

Anonymous said...

For Linda: I truly do not mean for this to sound terrible but I’m afraid it will… Perhaps a good question to ask is why you feel the need to play God with Riley’s life? It’s obvious that it’s God’s will that Riley’s demise will be alcoholism and Riley has begged for his own death. Maybe it’s time to hand the reigns back to God and let His will be done?

Anonymous said...

My father died last year of end stage COPD. Alcohol and smoking kept us constantly on edge for the past 25 years as one medical condition after the other came so close to taking his life. In the end, however, it became "our" choice to continue to provide the care that kept him (barely) alive, or put him in hospice and let him die a peaceful death. At the time it seemed like the right decision, and the hospice folks were wonderful in making sure he did not suffer. Now that a year has passed, I still have doubts as to whether it was the right decision. Not so much that he was clearly terminal, but that I had so much control over the decision of when. I feel resentment at having to make the decision, and guilt for making it. I too felt, after he was gone, it would be over, ended. Not the case. He is with me and my thoughts on a daily basis. The worry, fear, anxiety has just been replaced with other feelings--not eliminated. I know I will come to terms with it over time--but the point is even after their gone, our loved ones still have a huge impact on our lives. Good luck to all who are living through these situations. Don't forget to take care of yourselves, and try not to forget that the ones we are faced with caring for are truly very sick people.

Samantha M. said...

I understand that dilemma Linda. Late in 2015 my unapologetic alcoholic elderly father (with whom I live because he cannot live alone) ended up in the IUC with severe pneumonia after a 34 day bender. All he did was drink during that time frame, ate less than a child-sized meal every 4 days or so and was sleeping on the floor in a diaper because he couldn’t get out of a bed without falling. He had had several hard falls in those days and even after wasting himself to 118 lbs (on a 6’ frame) with his back and sides covered in bruises; every time he went into a hospital he always AMA’d and refused any outside help and no one professional could do anything about it.
He ended up beating the first illness and going into a rehab/nursing home where he came down with another case of pneumonia and landed back in the hospital. This time he wasn’t responding to medications and his body was too weak to fight anything off on its own. I had a Doctor on his case pull me aside one day to say that they were diagnosing him with failure to thrive and that I could consider a DNR that day because they expected him not to survive. I took until the next day and a lot of thinking/praying to decide that if I took that route it would be for me and not him. So I opted for a tracheotomy (his second that winter) to help his lungs out and they finally found a combo of meds to beat whatever bacteria he was fighting. He ended up in another rehab and promptly left AMA as soon as he could walk more than two steps so he could get back to drinking.
It’s terrifying to have someone’s life in your hands. Especially someone who constantly berates, belittles, and abuses you for sticking by them. Every time he accuses me of trying to kill him it’s a reminder that I chose the opposite. Because I have no idea what he would have wanted in that situation, he decided to take his opinion out of the equation with his drinking. So I continue to force him to hospital when I see behavior changes or breathing issues, continue to look for signs of infections after his cough gets weak, and probably will continue until God decides I’ve looked enough and makes the final decision for both for us.

Anonymous said...

I have never done this before but have been reading the previous comments. Maybe this is something that might help me. I have the same story to tell.
Alcoholic husband. Detoxed 4 times. Rehab 3 times the latest in December of last year. Drinking again. Your stories do not give me much hope but I just can't seem to get to the point of giving up. I wish I could because life is almost unbearable. God bless you all because I can relate to your suffering.

Anonymous said...

I hope everything is OK. Haven't seen anything new for a while. Miss it.
God Bless.

Freeatlast said...

I am 53. My ex just turned 60 last week. I was married to him for 28 years and divorced him in 2012. Many years of physical abuse. Verbal use. He ran our finances into the ground. He was functional til about 2007. Was asked to resign his managerial position in car sales. After that was job after job , quitting and staying drunk. I took on a second job, I was an ultrasound tech. I worked every single day for six months , slowed a little after that. He's been through too many to count detoxes and rehabs. The last straw was a 28 day rehab and he left one day earlier than when he told me he would be released. He got stopped for speeding -open container and DWI. I told him not to come back. He used his bank card to clean out the joint account. I called the bank and they cancelled his card. He kept calling me saying he was overdosing. Whatever. My youngest son still lived at home. 1 think he was 17 or so. My ex came to the house dumped my purse to
Get my bank card. Threw my cell phone and broke it. Pulled knives out on me. My son ran out and called cops. I was able to kick his legs out from under him and he sat dumbfounded for a minute. I ran out. He was trying to get out to get to us til the cops came. Then he locked himself in. Long story short. SWAT team came. He spent time in jail. The judge made him leave the state. after a year gone he came back to my area. Got 3 DWI in two weeks. Came to my house and strangled me til I passed out. My son beat his ass and back to jail with him. He's been homeless. Selling blood. Eating from trash but can always find booze and smokes. Currently he has cirrhosis. Pancreatitis. Wetbrain. End stage. I'm trying to figure out where rock bottom is for him. I think he wants to be dead. I put up
With his abuse and cheating and lying for too many years. I would not recommend to anyone to stay with an alcoholic who continues to drink. They put alcohol above all else. He's dying a very ugly death. Slowly.

Freeatlast said...

Hey Linda! How are you doing?

Anonymous said...

Wow. It's frightening, heartening and amazing to hear stories of people's lives that are so much like mine.

My ex lost his job in 2007. We had two young children at the time, one with special needs, and I was a stay-at-home Mom.

For a year, we lived on unemployment and savings and I hoped he'd get sober and get a job. When that didn't happen, I went to see a divorce lawyer who told me that if I really wanted to protect my kids I should stay in the marriage. So I stayed ... for another 8 years. I started working part-time, then full-time. There were many trips to rehab, each time followed by a period of hope that diminished a little each time.

There were multiple lawyers consulted, never giving me the answer that I wanted: that I could be assured full custody and that my children would be protected. Various things pushed me toward finally getting a divorce ... mostly my fear of staying became greater than my fear of leaving. I was afraid that my then 8-year-old would cone home from school and find his father dead. Now I'm afraid I did the wrong thing by taking care if him all those years and not letting him die. Because now that young boy is hitting the teen years and I worry about how his father's death will affect him.

And he will die soon. Or could, certainly. He cycles in and out of the hospital with esophageal bleeding and needing help when he stops drinking. When he's sober he expects to be treated as a real parent - and then he's drinking again with a few weeks.

He lives with roommates now who I fear are tiring of the cycle. I fear his death, and I fear his continued life. I hope he dies before he's homeless because I fear that I'll be compelled to take him back under my roof. And I know that my kids and I were much worse off living with his chaos. But I can't shake the feeling that I've failed him and our marriage vows.

God this sucks. Thank you, sisters, for sharing your stories and reading mine.

Anonymous said...

Thanks so much for your blog. I have an alcoholic son (age 43) who lives with my husband and myself. He has made our life hell and yet I can't bring myself to throw him out on the street. Intellectually, I know that he will eventually kill himself (and hopefully no one else), but we keep encouraging him to get help/sober even though I know he probably won't. At times, I can't wait for this to be over as the stress is daily and it is horrific just waiting for the next call from the hospital.

Anonymous said...

I hope you were able to get Riley back on hospice, perhaps a different hospice...
My 54 year old sister died about 2 weeks ago, in a hospice designated hospital room. Sadly. the hospice facility was full.

The evening hospice nurse sent her to hospital for oxygen (none had been set up at her apt yet). Her ascites was so bad, she couldn't breath.

When I got to ED, the physician said I could throw a bunch of transfusions at her, Why? I said. He hadn't realized she was on hospice. She had internal bleeding, they continued the oxygen, gave her ativan for agitation, and morphine for pain, she died the next evening.

Fortunately, I had talked to sis about End of Life issues because our Mom died in Feb. I knew she wanted DNR, no feeding tubes, no intubation. She chose me as health care proxy because she said her husband & daughters wouldn't honor her wishes.

She didn't want to take the Lactulose for the hepatic encephalopathy because of the diarrhea. She hallucinated, fell all the time, was covered in bruises and ate like a canary.

She had done so well for about a year after a diagnosis of alcoholic hepatitis. I knew she was drinking again when she didn't return calls or texts and smelled of mouthwash, also she wasn't asking me to order her vitamin supplement. She told daughters no one was going to tell her how to live her life. Her 25 year old said she won't have one to live and she was right.