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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.

Sunday, August 16, 2015

Coming to my senses

I believe strongly that knowledge is the key to survival. It goes right along with knowledge equating to power. The more you know the more powerful you can be.

I suspect that Riley’s cancer has returned. There are physical indications that tell me that something is “off”. It really doesn’t matter if the cancer is back or not. He is already in hospice for end-stage liver disease and a confirmation that his cancer has returned will not change that. He will not get treatment for the cancer both because he is in hospice and he has stated that he wants no more chemo or radiation. So, really, what’s the point in putting him through the round of testing (which takes months) to determine if any Tommy the Tumors have returned?

A few weeks ago, Riley was in a nursing home for five days while I had a little respite. When he returned, he told me that he had not been given his medication correctly. I thought he was just talking nonsense until I observed his behavior. He definitely was off his meds. Since he was home and I manage his medication, I got him back on track with his dosage and schedule.

During that time, Riley was belligerent, controlling, passive aggressive, and telling the world that putting up with him was what I get for having saved his life so many times. It was difficult but I preserved. I know it’s just garbage coming out of his mouth because he is re-acclimating to the meds. But… still… it’s so very frustrating.

To top things off, we had a new hospice nurse who believed everything Riley was telling her. Oh poor Riley, so misunderstood, so alone, so unloved… blah… blah. I wasn’t in the room, but from what I understand, that was the gist of what she was telling her. It was about his feelings, says the nurse. His feelings? Well, having feelings doesn’t mean you get everything you want, I reminded her.
She went on to tell me Riley was lucid and clear and could determine for himself if he took his meds or not. She also told that he belonged in a nursing home because I was harboring resentments from our failed marriage. Wait a gosh darn minute here!

Riley has been diagnosed with dementia by one of the best forensic psychiatrist in North Carolina. He has been diagnosed with brain atrophy by a prominent neurologist after having had an MRI. So where does this nurse get off telling me he is lucid and clear? Her response was that he answered all her questions about where he lives and who the president is correctly. And he also knew where the garbage can was in his bathroom. Oh! Well! Hey! That solves it! Of course he can make his own medical decisions! Anyone who understands that Obama is president and the garbage can placement, can certainly decide if he needs to take the medication that lessens his agitation or stops his nausea.

I hate those mini-competency tests that Medicare requires to determine the health status of a person in hospice. I think they are ridiculous. Only a person who is deeply into dementia would answer those questions incorrectly. Riley isn’t that bad yet. But he isn’t good either. He has illogical thought processes and knows the answers to those questions because he “resets” his brain every morning by watching news programs for the majority of the day. He seldom really knows who his grandchildren are and who the parent is of which child. Often he doesn’t even claim them to be his. Sometimes is daughter is his and sometimes not. He has no recollection that we were separated for 15 years and sometimes he says the separation was not long enough.

Over the last six months, the team of health care professionals who have been assigned to Riley have focused on making him more independent by encouraging him not to ask me to do things that he can do for himself. This new nurse ended her visit by saying I should just do as he asked when he asks and let him manage his care. So now, I’m called to his room to do everything that he can do for himself. We have taken 10 steps backward and if he had his way I’d just address him as “Master.” Well, that ain’t gonna happen and the battle begins – again.

It will take me some time to undo the damage caused by the new nurse. Of course, she’s not to come back here and I’ve been assigned a different nurse. In the meantime, I’ve had almost NO time for anything other than Riley’s care.

For the past few days, I’ve noticed that Riley has taken a downward turn. He is very weak, has no appetite and is very quiet. I’ve been watching him closely. I check on him often. I am concerned, but understand that this could just be the progression of his disease.

As I was leaving his room, he said “I’m happy that you’ve come to your senses and are following Nurse X’s advice.” OMG! He sees my taking care of him as being submissive and an indication that I’ll just do anything he asks. I talked myself down from the irritation of his statement and remembered that he is a sick man – a dying man. I need not respond nor let his statement upset me.

I wonder how long it will take for him to come to his senses and realizes that he, in fact, is at my mercy? Oh! That’s right – I forgot! He will NEVER realize that because although he is not drinking he still thinks like a narcissistic alcoholic.


Anonymous said...

And Don't forget that everything is your fault! Just kidding. Insane world it is with poor Riley being so mistreated and misunderstood!

Anonymous said...

I just finished reading your post and I just have to say that I am so sorry that you are going through this... I know just how you feel. I'll bet you feel as though as you write this that no one will understand your frustration and anger, but I do. What a horriable way to live a life. I am going through the same thing and so much of the time I feel like screaming and pulling my hair out and giving up, but I go on. I hope you feel a little better, you have my support.

Kristen Durboraw said...

Yep. Definitely can relate. Amazing the face they can put on when they "need to "

Anonymous said...

I understand too...mine does same to me. He says he cannot control his anger yet he can flip a switch if anyone else pops in. He blames it on being bipolar. Nothing is his fault. He is end stage as well. Drinks mouthwash.

Anonymous said...

I've just got my sister home from a 13 day hospital stay. She had been sexually assaulted by her yard man. I hadn't seen her in two years and only spoken to her a few times. Yes, she is an alcoholic. I didn't know it was this bad. Her memory is shot, she is incontinent and can't hold her bowels. She is in a wheelchair and is too weak to transfer from chair to toilet, chair to bed, etc. She is only 63 years old.

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