I did get in to see her today. this is difficult to write. she was pale physically did not look very good, her drugged eyes--dark circles under them. she was cold in appearance, had on a short sleeve scrub outfit. i am concerned with her physical health, it could be nothing and it could be the medications taking a toll, or a new med added that i am unaware of, which is what i think has happened. time will tell when i ask about it.
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i brought the wax paper bag with powdered sugar donuts, cookies, peppermint bark candy. when the elevator door opened, she was there and hugged me with a good grip. hugging is something that she always did, and over time became skittish after those other psych ward experiences. it took a very long time to get back to that point. now i feel her grip me with these hugs and i think she is scared, and i know my daughter, she needs assurance that no one has left her. i walked her over to a table by the window and she sat down and started eating the goodies, and I said, "wow, i came here yesterday and you were sleeping!" she looked up with a happy face and smiled. you see, i don't think they tell her mom was there on days like yesterday. i always want her to know i was there, because she does worry she has been abandoned. knowing this about her in hospital settings is why i make sure she hears from me and sees me, it's like oxygen to her to know she is not alone.
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a few things:
they've had her on "finger food" for weeks. that means the rare hot meal brought in by a delivery 1/2 before serving on weekends was not hers. she is handed a tray with that damn brown bag lunch out of the bag on a tray. i sat at a nearby table to give her space, to process this, because i knew this would confuse her and frustrate her. and it's feeling singled out without explanation. and of course the staff on duty never "know" why when i ask about the "special tray".
i'm a mother and this is part of it, they need to feed her hot meals! damn it.
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i watched her make a pile of the bread and stuff it into her milk carton (she drank the milk) and i gently asked her if she wanted me to go get her hot food for lunch.
she leaned her body over in her chair toward me and put her head on my arm. i knew that was a yes. then she told me what she wanted.
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words are once again, becoming fewer.
remember, mute for 3 years and she went off clozaril (became non-med- compliant) and she started talking and singing in august.
now she appears to have a new drug added, i will have to ask tomorrow. i know my daughter and lived with her on the meds for years and years and i know a drugged look when i see it.
her face is flushed, rash like, and neck skin is peeling.
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after i went out for the take out food and came back, she ate eagerly. i said, "let's walk over and look out the window".
she started very quietly crying, and hugged me, i looked at her face and her nose started to run and it was bloody.
i kept my arm around her, and walked her to the nurses station to alert them of my concerns.
"no medical staff on the weekend".
they took her temperature and said they'd watch her.
another male nurse asked her if she was cold and went and got her a sweatshirt. the other male nurse said shes been taking them off and putting them in the laundry, and i said get her one anyway.
so the kind nurse helped her put the sweatshirt on over the scrub top as she sat in the chair next to the wall.
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by this time, i had been there for about 2 hours or so and not wanting to over do her with input, and visiting hours were almost over--i said, "OK, keep your sweatshirt on and keep warm, and make sure to ask for water if you are thirsty, use your words."
as she sat in the chair, i saw my daughter. i wanted to bring her home, i wanted to cook her dinner, i didn't want to leave her.
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"i am searching for my memories", she said.
i pointed to my heart and said, "i have them all right here. no worries".
"bring me a puppy".
the elevator door opened, i walked inside of it and waved goodbye to her, sitting there in that chair by the wall, in a grey sweatshirt. she smiled.
the doors closed.
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11 comments:
I would want for her to have hot meals too! I want you to know that because of my own illness I often dont seem to be able to find words to put down here but I am reading and praying for you and your daughter
I am so happy your daughter has someone like yourself to care for her. I cried as I read your post. My hospital stays were usually alone, no visitors, because of distance. I just find your actions very touching. I hope your daughter is finding wellness.
A visitor's presence always reminded me that I was, indeed, alive.
Stephany, try to find out which memories? Not specifically, I suggest (you don't want to trigger her, if that's a possibility), but generally... Memories that explain why she feels as she does (however that might be)? Memories that will allow her to be happy? Does she think she's forgotten something important? But, above all, does it matter (ie, will something good happen, if she remembers) - and if it does, then she'll remember? And, then, ask again, memories that will allow her to be happy?
I know this particular landscape, very well - I've been there a few times. The thing that would have allowed me to sleep soundly would've been knowing that I had somebody who could have explained it to me.
Matt
PS You know Linds better than I, obviously, but I'm not sure I'd measure her wellness by her volume of speech.
thank you everyone.
i was with her this morning for over an hour and i found out her medications have indeed been increased.
original clozaril 550mg per day for 2 years.
current is nearly doubled, and they have added Trileptal.this now with the addition of trileptal has taken the medications she has been trialed on by hospitals to a new high.
i feel her brain is recoverable, on less meds and with the time she was able to spend with me on outings like this last year, and now that they are solidly drugging her up harder and locking her up, i fear...i hope she holds on to somewhere in her mind and soul.
she ate the mini donuts i took her and is still getting hugs from me, which is a good sign she is remaining connected to all of us.
many times, Jayme, she has seen me walk out of the elevator and said "i survived, oh my gosh i'm alive". i think seeing me does in fact break through to her that is why i refuse to listen to them any longer about backing down on visits. it's my call now, they don't know her or what they are doing.
I thought institutions had a responsibility, to provide healthy full coarse meals.
I think it's wonderful, that you can see her often. I wish I could see my son every day. But unfortunately he is to far away.
5 days a week it's a brown paper bag given out at lunch time, every day the same thing every day, and a little carton of milk. hot meals are often a hot dog. no working kitchen there either, it's all trucked in by a delivery person before the meal times. no choices.
You are doing the right thing, Stephany, of course, you already know this. And they don't know what they are doing and they don't know her. They don't even try. It's the nature of their job to be detached. The system is sick, not your daughter. I would give anything to snatch her away from that mentally ill system and show her what peer support can do for the soul.
Isn't that the most significant part of what the psychiatric modality is about--lack of acknowledgement of the soul, of the very human being that is in a crisis and needing care and kindness and love.
the system creates a barrier to the very thing that can heal.
it's all about medications and how a person "presents" on them. unless you can verbalize a nice song and dance based on their requirements for discharge (that they keep to themselves) then they send you to the institution. it's why it was such a big deal 2 years ago when i busted her out of their with an outside social worker, and won in court against that doctor. that's the sick part, i am sure they retaliated against me this time, because they hooked themselves in, deeply in court.
and, just for reading interest, there is a law against breaking someone out of a mental hospital here i looked it up. it's like my daughter was sentenced. like to prison. to a new county where i will be navigating from my county and hundreds of miles of driving.
let's just keep her spirit in our thoughts. she is a fighter inside that i know. thank you for commenting here Jayme, it means a lot to me, very much.
Oh yes. Her spirit is in my thoughts every day I go to the Peer Support and Wellness Center. She represents all the souls who are fighting within the system and within themselves. I believe in each and every one. I know the fight, and I know the hope.
I can relate to your daughter on so many levels. Did I ever tell you that I was mute for several months?
I may not post a lot, Stephany, but I read everything.
btw, one of her memories is when i surprised her with her dog when he was a puppy. i know she misses the dog, and sitting and petting him right now would do her good. i got her the puppy, when she was 16, he was touted as her therapy dog. i took him into the hospital once with special permission summer of 2007. (last time she was there) they wouldnt let me bring him back because she cried when he left.
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