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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.