I really need to take a good hard look at myself. I really need to make some hard changes in my life.
I am honestly just sick and tired of thinking about these things and writing about these things and talking about these things.
I feel stuck in some kind of trap that is probably of my own making that I need to find my way out of. Where’s the damn trap door???
I feel like I’m either fighting for my brother or fleeing from my brother to keep my sanity.
What I do know, without doubt, is I’m fighting harder for his well being that he’s fighting for himself.
This is something I’ve struggled with in so many areas of my life. I’ve learned to manage it pretty well when it comes to my business after essentially a 24 year boot camp. I wasn’t a quick learner. I’ve even discharged clients and referred them out for this reason. Yes, my peace of mind is more important than being paid for that dynamic.
This ACT Team is still on probation and it remains to be seen how well they will perform. I get so tired of these big sales pitches about programs and then, they fizzle before they’d taken off. This is the public sector. I guess you do get what you pay for. I still hold Dr. Yasinski in my mind as an option but we would also need to build a team of other providers in addition to him which, again, is a full time job for awhile.
John was transferred to this program two days ago. We were told he’d have 24/7 access to case managers should he have a need. He left there after that transfer without one of his heavy duty antipsychotic meds being filled because of some “preauthorization” issue. No one (but me) ever followed up on this so as of today, he’s completely out of this medication. This major medication that isn’t to be played around with.
We both called multiple times yesterday and left messages and heard nothing back. Fail.
He’s been seen by none of these multi disciplinary case managers we met two days ago nor has even one called him to set up an appointment to work with him. Fail.
I finally tracked down the coordinator who we’d met with this week and shared all of this with her, along with my concerns that their “med check” visits, really the only service he’s gotten from this “intensive” team in two days which involves someone coming to the house and watching him take his meds for a couple minutes, requiring him to take his bedtime meds at 5pm.
Which means he’s in bed sleeping by 5:30 because, being such strong tranquilizers, they knock him out. That’s insane. Fail.
Not only did I get much of a solution for that (“well that’s when we do our med checks”) but this coordinator had no solution for me about the medication that John is now OUT OF and literally said “well he may have to go cold turkey off that if we can’t get preauthorized”. Medication prescribed by their very clinic, by the Dr. who is on the premises. FAIL.
Here’s me, grinding my jaw, trying to be nice, trying to not make waves saying “I’m a trained Psychiatric Nurse, he cannot go off that medication cold turkey”.
And what I got back was “our Dr. is out of the office til next week”. “Then who is covering for him?” (for God’s sake, this is an INTENSIVE PROGRAM!!!).
See what I’m talking about?
Pure bullshit.
I pushed this issue (as was necessary) and she went to speak with the Dr. who ordered it, who is RIGHT THERE IN THE SAME BUILDING WITH HER, and got it approved.
But do you see the degree I am continually fighting , fighting, fighting to get John’s basic needs met?
While he’s laying over there on my couch, doing nothing. “I’m having a bad day” he says.
And to that I said “if you don’t invest in your own life, then I’m stopping pushing you”. I’m either pushing him to go to classes, go take a walk, make a phone call to find out something about, say, that medication issue. And he lays on the couch telling me “I’m having a bad day”. How luxurious he gets to have “bad days” and not advocate for himself. Yet I have to keep reminding myself that he is very capable when he wants to be. He got himself in the last two days to Urgent Care, an ER, a CT scan, a Dr. , stores to buy cigarettes and various fast food places which I also can’t seem to mitigate. There are just so many areas of dysfunction you have to choose your battles.
AARRRRRRRRGHHHHHH!!!!!
I’m moving him today to my Dad’s. He left to go over there just now.
I have to pull back. I’m going to lose my mind with all of this fighting fighting fighting pushing lighting fires trying trying trying to save my brother who does not seem that invested in saving himself. Or much of anyone else for that matter. I’m treading water holding a life saver trying to toss it out in the open sea. To someone who’s just floating and staring at me like “huh?”. I need to start swimming. Swimming for shore. I’ll just leave that life saver right here and see if it gets picked up. Terrifying.
The tears finally came when I started reminding him that he’s the same person who went to every furniture store in Phoenix shopping for our Sedona home, who found that house, who wanted to go to Sedona with me, who went to movies with me, who enjoyed this…that….this was just a few short months ago.
I pleaded with him “WHERE IS MY BROTHER???”
“I don’t know” he said.
It’s utterly heartbreaking. That’s one of many adjectives of what it is.
I don’t know if he will make it on his own. I have to turn him over to this incompetent disappointing new ACT Team.
I have to see if he has a chance for rising with them.
I have to find my own life again. Can you imagine how hard it is to turn this off in my head? Even when I have a day off like yesterday and do something fun for myself like getting my hair cut and meeting two friends for wine and food and a little pub crawl? I do my best to not talk about this but it’s been so consuming it’s so hard to not think about or find other things to talk about.
I was so happy, so relieved, so whatevered, to hear my hair dresser’s long story of a dramatic story that had gone on in her life. Please, anything, anything to pull my mind off this unending dramatic nightmare.
John breaks my heart as he sadly walks out of my house saying “well you have a good day”. I get sympathetic to his sweetness over and over again and then I put up my gloves for him.
He might choose a marginally functioning life where, without constant pushing, he lives his life between his patio smoking, alone, to his couch, laying down, alone. He may end up back in the hospital. He may fall right through the cracks of this “intensive program” which to me seems more like a series of cracks than any kind of foundation. He might get suicidal again, he might get totally psychotic again, he might he might he might….I seem to be the one person, other than Dr. Yasinski who’s invested in the “he might get very functional again”. It’s so sad.
I’ve been thinking a lot about first impressions lately.
I have to say it. This is a bad one for the ACT Team. That anyone working with the mentally ill would, for any reason, ever, in any situation other than stranded on a desert island, think that taking someone off their major meds “cold turkey”, meds that they need, is any kind of viable option. Over “insurance authorization”. That is terrifying and defined certain things to me.
I don’t know how long we will give this program and need to think about that.
I have to let go. I have to let go. I have to let go. I have to let go. I have to let go.
I feel like I’ve lost my only surviving sibling. Again.
And I just can’t type anymore after saying that.
two innocents 
Sweet Kathy, I know it doesn’t help much, but I do completely understand what it is like to keep fighting for the right program or therapist or medications for our loved ones. You are doing the right thing in letting John go back to Dad’s. It was the hardest thing when I finally stepped back from my brother’s situation, where he is constantly “firing” his careworkers and being uncooperative. Of course, being nearly 300 miles away has not allowed me to take too much part in his care, either. Unfortunately, for a time I did allow my concerns to eat at my own health and that was not good for any of us. Finding the proper balance of caring for ourselves and caring for others is probably one of the most difficult balances we encounter. Don’t ever feel bad for having your own feelings or feeling disgruntled or lost. Somehow, someway, things do tend to work out …. maybe not always for the better, maybe not even the best, but at least acceptable.
Sure wish I had more supportive words of encouragement to offer. Probably the best I can do is to be a good listener and share bits and pieces of myself. Wishing you a smoother, gentler “rest of the day”. Hugs for you!
Oh Kathy,
I’m speechless. I know that’s something you don’t need to hear and it also won’t ease your stress. If nothing else let me say that all of what you put here is VALID. That also doesn’t affect your stress. I will revert back to Intensive Prayer. I am so sorry Sweet Kathy.
Feel the Love of those that matter in your life.
You are a Wonderful girl, Sister, Lady and Nurse. You are Beautiful inside and out.
Love and Healing Hugs x forever.
♥ ♥ ♥ ♥ ♥ Paula
Unfortunately with mental illness, it will be a roller coaster..what is so difficult are the moments that he is his normal self…heartbreaking to see them and then suddenly they are gone again…talk about grief…grieving for someone who is standing rt before you is the torture…I am so sorry that you are going through this! It is what I experienced w my mom…family will always care more than anyone else..guess its in our DNA …I am glad he is moving over into his own space. You cannot save him from his own disease. It is his lesson. We have to figure out our own lessons..glad you will be getting away again soon..hard to keep ones own sanity when you live in crazy….prayers for peace no matter what the circumstances! Xoxo. Kiminnm
The only “bad part” of all of these wonderful comments you all are leaving is that I have to go in to work right now and suck up these tears. I will come back and read them with kleenex tonite. I love you all.
Big Hugs!!
I have no advice to give you. Just know you and your family are in my prayers big, big time…
Katie – Love the new hairdo! I read your blog when you posted the very first article but forgot to sign up for new posts and forgot about it. I finally signed up a few days ago and spent time reading backwards. You are doing a tremendous service by writing and sharing the nitty-gritty of this painful, nearly full time saga of advocacy as your dearest brother’s sole significant other that is local. I’ve been a RN for 30 yrs so I totally get your continuous aggravation at the health care piece meal system that is more often than not dysfunctional and abysmal. I also can feel through today’s article how frustrated and weary you are with dealing with the on-going incompetence of the services (for the most part) and Alphonse’s on again off again level of independent functioning. It pissed me off to hear that the ACT Team – the group of them met with you both for the introduction of services meeting the other day; and that they did not give you a schedule for the services available 24/7 during this long holiday weekend. Also that they had not thought to confirm that he had enough meds to get through. Hopefully, they will soon rectify the med administration eve time because you are correct that 5PM is totally unacceptable for quality of life reasons. Very glad that he is locating back to your Dad’s condo today. That was a good decision that you made – though I know that it is fraught with another set of potential problems for you to manage.
Loved loved loved your articles on The Ranch! My dearest mom first went there in 1982 and a few more times once she moved from Ohio to San Diego. I had totally forgotten about that place and now I intend to treat myself to a week there in the near future! Your upcoming trip to Seattle sounds so exciting – that you were able to get into your favorite author’s break out group; well it seemed to me that it was meant to be.
Oh, and I adore Steve. Too bad we can’t clone him. He’s the real deal – a very special man and true blue friend. Sending you a big virtual hug.
As his loving sister you know that NO ONE will care for him the way that you do.The reality is that
you need to let the new team try to help him the best they can. Give it a little time.
You have not lost your brother, and when those thoughts creep in, just stop and change that thought.Try hard to change that tape in your head. You’re doing everything that is humanly possible to help your brother and you can’t do any better than that.
Peace
I am so sorry, Katie. I was so hoping you’d finally gotten on some firmer ground…..into a good groove. I wish I had some magical words. All I can say is that it is OBVIOUS that you are doing your BEST! And, like you said, John ISN’T. Perhaps he is; dare I say it, taking a bit of advantage because he knows you so well. I don’t know how “tough love” fits into mental illness care…..but, maybe it is worth a try??? You are using it on YOURSELF, it seems, really. I mean, you beat yourself up whenever YOU don’t feel that YOU are doing enough. John is a grown man, who is, by your own admissions, CAPABLE of helping himself. Of course, not always….or in all ways. But, maybe you need to push his boundary. I just don’t want you to fall through the cracks while you are so busy filling in everyone else’s. God Bless. You are in my thoughts and prayers, as is John.
Your words are heartbreaking to read…you cannot and should not feel like John’s very existence is under your control; it isn’t. You are more like a mother to John, than a sister. You are more of an advocate for him than anyone on his ‘team’. That’s not just sad, that’s scary. Your knowledge of psychiatric behaviors and appropriate treatment modalities has sharpened your awareness of what is lacking in John’s situation; and it is causing you to panic. You are one person, standing alone – emotionally, physically, and mentally depleted; you can’t fix everything, including the ‘system’. You are being crushed under the weight of remorse you still feel over not being able to stop your sister’s murder…and for quite a while now, you’ve been dreading losing your dear brother, too. You would have to be made of stone NOT to cry and feel a new depth of futility
and anger engulfing you.
But you have to step back enough, and immediately, so that you don’t lose your footing on this precipice. Your health and stability are in jeopardy, now. Accept that you are in control of only yourself…you cannot protect your loved ones from LIFE…bad things happen and no one is sure why good people suffer one tragedy after another.
You are more than loved by people who have never even met you and we can see that you are the one who is in need of care and protection right now. John will not be better off, should you get sick from all this stress and turmoil. Granted, it must drive you crazy to see John’s ACT team fall short in what you know they should be doing…but you are in a situation where you need some outside source to help relieve the constant burden you have of caring for a mentally ill loved one. And you are smart enough to pull them up short, when they don’t meet your expectations. Push them if you have to and don’t feel guilty…it is their JOB to see that John is guided into a more pro-active approach to his illness and it is their JOB to maintain medication safety.
Hi Kathy
So Sorry you are having such a difficult time. It is never easy to deal with mental illness, for the person who has it and for their loved ones. All you can do is be there for your brother but at the same time not losing yourself in the process. You can’t be all things to him, but he KNOWS you love him and when the chips are down he has you in his corner. Never underestimate how very important that is, even if he does not always express it. Thank you for having the courage to share your story both the ups and downs of this struggle. I am keeping good thoughts and prayers for you and John always!
I love you!!!