Well good news and bad news. Mostly good though I think.
John was transferred to the ACT Team yesterday. This is a highly structured, intensive team to support and monitor people who are very unstable with their symptoms. We were lucky to get him in it as they have a limited number of participants. It was the revolving hospitalizations and the severity of symptoms at the last one that qualified him. The case manager at his program submitted him for this service as I had no knowledge of it at all until it was presented.
We had our first meeting yesterday with members of the team–his new Psychiatrist, the manager of the case managers and his former CM. I have to say I had to retract my fangs as I was not cool at all with being left dangling with basically no services for two solid weeks after John was discharged from the hospital and not doing well here at my house. It’s been tenuous at best, draining at worst and sometimes outright scary.
But a hissing sound is generally not a good first impression. I did let them know though, that we brought on an independent psychiatrist as we had no other options during those two weeks and John wasn’t doing well. They seemed surprised. I was like “well, what options did we have?”. Sometimes a first impression where someone is kind of already owing you, is ok (hey Mya and I got free facials on Monday for that reason).
John’s been focused on this bladder issue all week now and it’s mostly all he can talk about. He’s jumped from Urgent Care to Urgent Care, a CT Scan yesterday, his primary Dr. yesterday and nothing seems to be turning up. It’s hard to know if this is a real issue or psychosomatic as he tends toward that as well. It just seems never ending. One head is cut off and a two more sprout.
Today he tells me he thinks he needs to be admitted to the hospital over his bladder issues yet he went to see his Dr. yesterday and barely discussed it it seems. Shaking my head. I just can’t hold his hand through every. single. moment/crisis/whatever. Now he tells me he’s going to the Emergency Room. This is not an uncommon occurrence. Last month it was a heart attack (totally negative). I don’t know how to assess any of this. Maybe he needs to go that distance to find out he really has no problems.
Thankfully, I think I can start moving to the back seat now as this team is very comprehensive. They have several case managers who specialize in various issues from housing (not a problem) to transportation (might be a problem) to Vocational rehab/volunteerism to home management to I don’t remember what else. There’s a whole room filled with cubicles of them and we met probably 8 case managers yesterday who will all be working with John in some capacity. This is a hard place for someone to fall through the cracks as they staff each participant every morning vs. the prior program just the ones who “have needs”.
The bad news is we can’t use Dr. Yasinski with this program at all. 😦 He came for another home visit this week and I’m telling you, as a former Psych RN, I’ve not seen a Dr. so up on meds and all of their interactions. I would love him to be able to manage John’s meds but we’d have to give up this whole team to get that and he needs these services. Plus, having a handsome man show up on my doorstep was a bonus-it doesn’t happen much these days. lol I just had to say that. That’s horrible isn’t it? I feel so bad, I feel just so shallow saying that, objectifying this medical professional can’t you tell? 😉
Really he’s super nice and caring and competent as well as handsome
Here is a video of Dr. Yasinski talking about the Colorado shooting on the local news that gives you an idea of how caring he is for mentally ill people. I like how he starts this interview with reassuring the public at large re: this tragedy.
Just wanted to give a little plug to Dr. Yasinski who’s been extremely supportive to John and especially me over the last few weeks. I’ll miss him but glad to know he’s out there should we need him.
I get this boundary as the ACT Team is so closely knit that it doesn’t make sense to have outside members. And I think the Psychiatrist (female) will be good. She made changes yesterday that made sense to me.
Part of what they offer, at least for the first month or two, are twice daily home visits. Yes you heard that right, twice DAILY. They will check in on John morning and evening and watch him take his meds and check his home environment, mental status, everything like that. Basically what I’ve been doing 24/7. The kicker is, he had to take his nighttime meds last night at 5pm. So he was asleep in bed by 6. That’s not right. We have to figure that one out. Who wants to go to bed at 6:00pm?
The next task is moving him back to my Dad’s which dovetails that. I really don’t relish the notion of people coming and going from my house at least twice a day. Some days he will get other home visits from his primary case manager or people to check on his house management, things like that. They say intensive and they mean it. Where were they, oh, about six months ago before this revolving hospitalization business happened? Oh well, everything in it’s own time.
I need to set about relinquishing my control over this whole situation, turning it over to them, turning it over to John and finding a way back to my own life. It’s hard to think of moving him back to my Dad’s but I have to. It’s just three minutes away but still. I’m sure all you parents out there reading this who have children, understand this conflict distinctly.
I realized the other day as I was doing an inventory of my life and stress, that a year and a half ago basically, I became a parent with a special needs child overnight at age 52. When I look at the dark circles under my eyes, the way none of my clothes fit, the irritation I often go through, I can put it in perspective. My easy breezy life turned on a dime and honestly with all I’ve gone through in this life, I’m not sure how I’ve gotten through all of this phase. But here we are, putting one foot in front of the other and doing pretty well.
I’m ready to find my life again. I’m beyond ready.
Oh, the histrionics!
And I know I need to pull off that band aid and know John will be protected and well managed and take off the case manager, care giver, nurse, Dr., etc etc. hat and become the sister. Whatever that looks like.
In the spirit of taking off those hats, I’m giving myself a new one today. I have the day off and am getting my hair cut. I mean a significant hair cut. I don’t know why I’m obsessing about cutting my hair short but I’m going to. This is what I’m taking to my stylist today and we’ll see what comes out.
I’m also going super blonde again, like this pic and hopefully I will walk out with the same necklace and body and look exactly like this girl. 😉
All I know is I have the day off today and I’m going to do some things for me that I enjoy.
After of course making a few phone calls to the new team and whoever else I might need to speak to to manage this transition.
Then we need to let go and see how well we can both fly.
Wish us luck as we sprout new wings!
17 thoughts on “transition”
Mental illness is the hardest disease to deal with. My mom suffered a heart incident and was in a coma and suffered brain damage that affected her similarly in mood changes..sometimes my mom was there but there would be episodes that were heartbreaking…definitely not my ‘mom’..so I understand your struggle. My dad was her primary caretaker and I helped as much as I could. She was home bound for thirteen years and then passed from heart problems. Those were the most trying years of my life…’loosing’ someone by mental illness is so difficult because like your brother..he comes out of the psychosis and he is the guy you know and it is so heart breaking to see them ‘leave’ rt in front of your eyes! I do feel it is important for you to have your living space and for him to be as independent as possible…for your own health and sanity,KCL! My prayers are with you! Blessings and can’t wait to see a pic of your cute new Do!
I’m not only wishing you luck…you have my prayers, good & positive energy thoughts, and empathy 🙂 You are instinctively preparing John to survive beyond you and your Dad…that is a loving, kind, and responsible thing to do. No one who is compromised should have to rely on only one person for survival…you are helping John form new bonds and safety nets, and allowing him to take as much control over his wellbeing as he is able. Kudos to you & “the team”!!!!
It all sounds (reads) as it should. You and John have worked long and hard to reach this point.
I can hardly wait to see your new color and cut. I just know it will love ‘FABULOUS’ dahlinggg !
I believe transitions are mostly good things.
Love and Healing Hugs,
Paula ♥ ♥ ♥
Good for you. New hair always seems to take the edge off of any problem.
It’s heartbreaking and very hard to walk hand in hand with a loved one with a serious mental illness.You are a fabulous and caring sister that can not make this go away.Release the guilt,
let it go, and start taking care of your life. John needs a happy and healthy sister.
Thank you for all the love guys. I’m looking forward to days off that aren’t simply recovering from the days on. Those are on the horizon…
I hope they are on the VERY NEAR horizon!!!
This sounds very positive. I can imagine the feeling of relief at the thought of some peace in site. Also, you will look AMAZING with short hair. I love that haircut. I would love to do something similar but my genetics don’t work in my favor. I also understand how all sorts of stress will sneak up on you and add the pounds, etc. I have no idea, however, how to make it go away as fast as it came. If you figure that one out, let me know 😉
I’m trying this 5:2 eating plan…google it. I will probably blog about it as some point as you know me, I blog about everything. 😉
Lots of prayers for you and the family.
You look incredibly good. Can’t believe you’re the age you say you are. Look way younger!
I’m almost 54 but shhhh…don’t tell anyone. Actually that haircut girl is not me in case you got confused Rose. 😉
Good luck! LOVE the hair!
I hope you both FLY!!
Oh, I’m very interested in that 5:2 thing. I would love to try that. Hard to find where to begin with all the links… did you get the book?
Not yet but my friend is on it has lost 6 pounds effortlessly and feels great also in terms of, cough, menopause symptoms. Lets do it!
I’m in! But, I am so in need of a mental overhaul to do it! lol
We have mental health, balancing hair color, hair cuts, weight and menopause…cough. These are all very good combinations in reasonable doses. None by prescription, so they’re beneficial. I’m seeing you seek your footing and adding a bonus or two each time, all positives. ^5 ^5 Cannot wait to see the cut and color!! I love the style! I should be so brave, Red Hen Red Hen, you plucky character you! I’m inspired though…I’m going to sketch and paint the Hen…with sprouted wheat shafts.
Oh and future plans…don’t forget to check out the Chihuly Garden and Glasshouse Sculptures in Seattle! xoxo
I equate menopausal symptoms with let’s say…..Poking at a rattlesnake. 🙂
Haha, not a chance. You do look really good and your skin is lovely!