I’m taking John to the Clinic this afternoon to be started on a new medication. Invega Sustenna.
It’s a shot he will get once a month to take over the handful of pills he’s been taking for months. Pills that clearly haven’t been working.
He’s not been doing well and decompensating for the last couple of weeks. When we went to the Psychiatrist last week, he decided on this new game plan. So we’ve been hanging on during this week waiting for this medication relief. They would have given it a week ago except he had to get “pre authorizied”. Bureaucracy.
It’s hard to not get discouraged. John was doing well, was stable, for 9 months on very little medication after he moved out here. Nine full months. He had a major breakdown in January/February this year which I believed and still believe was a reaction to an antibiotic he went on. He was hospitalized for a month. A very nice nurse at the hospital contacted me privately to share she believed I was absolutely correct in thinking it was the antibiotic that had negated the effects of his anti psychotic medication as she has the same issues with her autistic son.
But John has just not fully stabilized yet from that incident and we’re in June now. He went back to his day program where he continues, thank God as they also keep an eye on him. I just have a hard time imagining how he managed his life with such little support for years back in Illinois. He lost most of his mental health services and was basically just alone in his apartment, minimally functioning, for too long than I want to think about.
I hover over him like a helicopter. But yesterday I wasn’t feeling well myself. I’m trying to save my gallbladder with a 3 day fast. I’ve done it before so I know this works but those three days are not pleasant. And yesterday, sitting at home drinking apple juice resting with a heating pad on my abdomen, I got calls all day from the program and John’s case manager about how poorly he was doing. John stopped by my house, clearly acutely psychotic, hearing voices and distracted. For once, I wasn’t feeling well enough to pop up and take over. We talked awhile and he went home promising me he would eat dinner then come back and spend the night. Of course he didn’t do that but at least he called me early in the evening. His frequency of communication drops off the map when he’s like this. I’m left to manage trusting he is ok without me running over there to check on him constantly.
“He’s either fine or he’s dead” my friend JJ told me this past weekend when I was in Sedona and unable to reach him. She was passing along wise words someone once told her about her son when she was worried.
True words about how much control you actually have over another person’s life or well being.
Balancing my own life with this level of responsibility is something I will deal with the rest of my life. I err on the side of hypervigilance now but that just can’t last. I was never more aware of that than yesterday when I even said to him “sometimes I’m the one who’s not well John”. Which I immediately regretted as it’s not his fault. But it’s my reality.
I realize how much of my life is holding vigil over others’ well being and how so infrequently I’ve felt this myself. I’ve never been good at creating that kind of support. I think those of us who grow up without mothers learn very early on to just fend for ourselves and being cared for is something we desperately crave yet never feel entitled to somehow.
Even with all that, and I do admit this isn’t a sunshiney post today, with all this, I still hold faith. I still hold faith that John will get better. That he will stabilize. That he will stabilize for much longer than 9 months. That we have a life ahead of us not defined by voices, paranoia and religiosity.
I also still hold some kind of deep secret hope that I will get that kind of support I crave. That an intimate, loving, supportive, passionate, soul mate type relationship hasn’t escaped me. That I’m still in line for that life.
Unlike Sarah in Love Actually, I hold this flame alive within me. I don’t know how this will all happen or when or what will be needed to make it so but I’m still fanning that little burning ember inside me.
One thing I will take kicking and screaming through this life with me is my faith and hope in a life larger than the one that sometimes appears in front of my eyes at the moment. One more bright and alive than my tired eyes can see.
I deserve it. We deserve it. In fact, if anyone on this planet deserves it, it’s us.
And I do believe it’s coming, somehow, some way.
FAITH
I want to write about faith,
about the way the moon rises
over cold snow, night after night,
faithful even as it fades from fullness,
slowly becoming that last curving and impossible
sliver of light before the final darkness.
But I have no faith myself
I refuse it even the smallest entry.
Let this then, my small poem,
like a new moon, slender and barely open,
be the first prayer that opens me to faith.
— David Whyte
http://www.gratefulness.org/poetry/Faith.htm
For today, I put my hope and faith in Invega Sustenna that it will give John some relief today. I’ll bring him home with me this afternoon.
And we will both rest.
two innocents 
A beautiful, heartfelt post Kathy. Praying for you and your brother. I know all things are possible through Him!
For Beautiful Kathy and her Dear Brother John,
The most beautiful people we have known are those who have known defeat, known
suffering, known struggle, known loss, and have found their way out of the depths.
These persons have an appreciation, a sensitivity, and an understanding of life that
fills them with compassion, gentleness, and a deep loving concern.
Beautiful people do not just happen.
“Elizabeth Kubler Ros”
Kathy, I barely know you, but you fill my heart with kinship and plain Ole LOVE. You have inspired me, I know I must start writing in my blog again. I was too afraid to share deep feelings, but you have given me some Courage to try. A counselor or writer, not sure which, once told me to write 3 pages a day, no matter what. I always feel better when I do…surround your loved ones with the bright light of God’s love, in your mind, to protect them. they will be held safe by this, it has helped me when I was worried about anyone I love, or want them to feel loved. I know it works!
Our Dear Kathy,
Because I get this mailing from another friend (yes, her name is also Kathy), I’ve copied and pasted it exactly as it arrived in my in-box on 4/26.
May you and Alfonse continue to be Blessed . . .
You are Loved!
♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥
“You have recorded my troubles … You have kept a list of my
tears …” Psalm 56:6
As I read this verse this morning, I was reminded of something that happened a couple of years ago. Our family went through a very difficult period with our youngest son and his family. I need not go into the details, only to say it was a very traumatic experience for all of us. My wife Jan and I and our son Steve had the task of telling our two young grandchildren, Jack and Abby what was taking place in their lives. It was very difficult for us, and as we told the kids what was happening, my young granddaughter Abby, who at the time was seven, took it very hard. As the tears flowed from her big blue eyes, she looked up at Jan who was holding her on her lap, said … “Does God know we’re crying?” I will never forget those words. The sincerity of her question and the emotions she was feeling still overwhelm me when I think about it. We hurriedly insured her that, “Yes … God does know, and He cares because He loves you very much.” I know that in my lifetime there have been times when heartache and sorrow have gripped me to the point that I too had that question on my lips. Think about the times that you cried, those times when you thought no one knew and no one really cared. The day you lost a loved one … or the day you lost your job. Maybe it was the sorrow of experiencing the actions of an unfaithful spouse, or when the Doctor said … “It’s cancer.” We all share the emotion of sorrow, the times when tears were all we could manage. I love these words from Joni Eareckson Tada … “You may have thought that no one noticed your red eyes. Not so … God saw. What’s more, he has every intention of rewarding your endurance through that pain. Why else would He meticulously chronicle every one of your tears? Every tear you’ve cried … think of it … will be redeemed … The worth of our weeping is underscored again in Revelation 21:4 where ‘HE WILL WIPE AWAY EVERY TEAR FROM THEIR EYES’ … It won’t be the duty of angels, or others … it will be God’s.” For every tear you and I have ever shed, God has shared in our sorrow and our grief, and one day, the tears will be no more … for we will be home with Him forever … rejoicing in His love.
Heavenly Father, You are my refuge and my strength. On you I can depend. Help me to feel Your presence today in all I do. You are my Anchor and You will never fail me.
jw
jw
Thanks everyone. We just got back from the Clinic and Alfonse got his shot and was also put on another medication to help him with anxiety. He was very unruly in the Clinic yelling and talking constantly to his voices. I’m just trying to keep him out of the hospital right now. Hopefully these meds will kick in here soon. In the meantime we’re relaxing in my cool living room and watching Chopped. 🙂
I don’t know all the details of this story. I am sending prayers and wishing for the very best for you and your brother. Don’t ever give up hope. Believe that you will get the support and companionship that you crave. Keep your mind and your heart open, and expect it from the most unexpected place. I believe that Faith and Hope are key! Keep talking and reaching out for support! Big hugs!
He’s sound asleep now. 🙂
Katie, such a lovely poem.
You’ve given John a great gift.
That of Hope..
His is a new beginning, learning to walk again with confidence.
You, as his guide, lighting the way.
Give yourself permission to rest along his journey,
There are days when he will carry you.
You will find what you seek,
Cradled tightly as you listen to the heartbeat of your love.
That will be your Destiny.
I felt every word… you and your brother are in my prayers… your writing gives me faith and I thank you ….
You write from a deep place in your soul, Kathy, and it’s so moving. I will keep you & Alfonse in my prayers. I also want to encourage you not to give that hope of finding your soul mate. about 16 years ago I felt that God told me I was to be married. But the years kept passing…and every few years I would pray again thinking maybe I heard wrong, but heardcthe same thing: I was to be married. It got to a point when I cried out to the Lord, “Statistics say that, at my age, I am more likely to be hit by lightning than to get married!” I think I heard a chuckle along with the reminder to have faith…I still had that in her conviction that I would be married. You can guess the rest…after 14 years, “out of the blue” I met my soul mate. It was someone I’d known for 28 years…an acquaintance from church…who had become a widower. He was also someone who was never “on my radar” because I thought we were so different. In November we will have been happily married two years. Don’t let that hope die!
Blessings,
PAT