ME in hiding • words of newly attained advice for anyone with a loved one in the GA mental healthcare system

wave by/© Blissbait Art

ME in hiding

laughter filled hall: dark

sharp’ning mind tumbles backwards

just where are you now?

•   •   •

Our sister, Mary Elizabeth, is mentally ill and lives in a nursing home here in Georgia, USA. An INCREDIBLY sweet and caring member of the mental health community (I’ll call her our Angel!) helped us place her in that particular home a little over a year ago after several attempts elsewhere and many “No”s. Last August our dear Angel said she thought Mary could have a much better quality of life and questioned the meds she’d been on for the past year and a half. She wanted to have Mary sent somewhere to be reevaluated by a psychiatrist and have them changed if possible. We agreed and consented.

MIRACLES ensued. Mary went from only being able to sit rocking in a wheelchair with her head mostly on her shoulder, smiling a lot, speaking broken thoughts and unable to comprehend what an envelope was to being able to WALK! TALK! Hold a fairly linear (albeit circus-like at times! 😅) conversation! She could read and write and paint again. She helped out around the nursing home! Participated! We took her on picnics! I took her to restaurants! She was even able to get much dental work done. She paid for this herself with excess money that was in her personal account at the nursing home we were told needed to be spent. It was perfect! She could communicate with the dentist and had the motor skills to participate in the process. God. We were overjoyed to say the least! She still needed full-time care and levelled out but it was at such a wonderful place. Everyone at the home loved her!!!

Last week one of the most sickening educations of my life entered the arena. Turns out the state of Georgia has a team of pharmacists they “train” to go around to nursing homes, look at what patients are being prescribed and make changes that will save money. They are not psychiatrists, do not meet with the patients or read their medical history. The residing head nurse in these situations CAN step up and argue, successfully, that the patient needs the meds, that their quality of life depends on them and they can’t function without them, etc. Ours, a young lady who was given her head nurse position about five months ago okayed the change without EVER!!! EVER having looked at Mary’s records or medical history. She know NOTHING ABOUT HER! They didn’t tell us it was happening.

I spent the day with Mary taking her out to lunch and to the dentist towards the end of January. It was business as usual. She was fantastic. All systems go. Two and a half weeks later she had taken about 10 giant steps backwards. When I took her to the dentist she couldn’t communicate with them about her teeth. I had to help her go to the toilet. She forgot how to change her pull-ups. Walking down the sidewalk was suddenly very confusing/challenging if the pattern on the ground changed. She’d have to stop and stare for an extended period of time. Only Two and a half weeks before she’d been going to the bathroom alone easy breezy. Walking so well she’d often forget to grab her walker. This story is much longer and more involved. I’ll spare You because I have a point and a reason for sharing this. To the quick: she’d had a bad fall and hit her head during those two and a half weeks I didn’t see her. We were worried for a few reasons that she might have gotten a concussion. I’m leaving out a lot of details, but I got a hold of the head nurse to tell her our concerns. She ever-so-casually told me Mary was fine but she was happy to schedule an outpatient MRI and by the way they’d taken Mary off her meds (the ones that had so gloriously changed her life!) and had her back on the dose she was on at her arrival. She said they’d noticed Mary falling into a depression about a month before and had talked to a pharmacist who said her prescription was too high a dosage and took her off of it. I had spent the entire day with Mary two and a half weeks before (and had been spending the entire day, once a week with her for over 2 months before that!!!) and she was FINE, happy and normal. I told the nurse so. She begged to differ. This “she was depressed” thing was a lie. I about died. Excuse me, what? In the course of the conversation I was patronised and lied to while it became crystal clear this woman didn’t know a thing about Mary and had never bothered to educate herself on Mary’s history or why she was on the meds in the first place. She didn’t even know Mary had been on the meds for 5 months! Every time I corrected her with the facts she would just say, “Oh!” Surprised. Completely uninformed. The head of nursing. I’m not even joking. She kept repeating that I didn’t understand how medications worked and that they loved Mary, were concerned and keeping an eye on her. At this point I thought we were screwed, had no idea we had options or what to do. I went into my scared mode where I  apologize profusely. I even thanked her for caring so much for Mary. When I hung up the phone I wanted to vomit.

I texted our Angel woman who had helped Mary get her meds upped in the first place. She was frustrated that they’d taken Mary off but not surprised. She told me when Mary first got admitted, when she was like a simple-minded 3 year old, they wanted to take her off the meds she was on then because they are expensive. The more money insurance is paying for meds the less the nursing home gets. They were going to be fine reducing her to a vegetative state without even letting us know or giving us, HER FAMILY!!! an option to just move her to somewhere else!!! This Angel fought them on it and won. It’s actually less expensive in the long run to give someone their meds!!! They need less help doing basic things, are less likely to get hurt, etc.

When I filled her in on our current situation, our Angel, BLESS HER!!! made many phone calls. When we spoke on the phone later that day she advised me to go take Mary back to the Senior Healthcare Center that had put her on the good meds in the first place. She  had us  start at the emergency room so Mary could  be tested for a UTI and to have an MRI done to check for a concussion…we needed to rule those out as contributors to the behavioural changes. Our Angel is friends with the Angel women who run the Senior Healthcare Center at the hospital. One of them called me at home on Friday night and talked to me at length about the healthcare system. Her mother, who has passed, was exactly like Mary so she’s been down the same sorry road and knows it all too well. This Sweet Lady met Mary and I at the emergency room the next morning and helped us through the admittance process both to the emergency room and to the Healthcare Center.  They’re helping her get through this and are getting her back on her meds as well as comprising us a list of nursing homes to tour/interview in the next few days. We’re assured there are ways around these dangerous changes and that we’ll be able to place her somewhere this doesn’t happen again.

My heart is shattered as Mary is very scared right now. She only knows we’ve taken her away from people who were her friends and who loved her and she loved. She doesn’t have the capacity to understand that in a few months she wouldn’t even know where she was for God’s sake. What they’ve done is beyond cruel. I feel really bad. I’ve told Mary I’ll take her back to visit her friends at the other nursing home as soon as everything is settled; and I will!!! I’ve done my best to explain to her she is in the hands of literal Angels who have her best interests at heart; that everything is going to be okay and she has to look at this like a big plate of broccoli…that even though she doesn’t like it, it’s really good for her and there is a big dish of ice cream on the other side. And make up. She loves her make up! The analogy didn’t help much but did make her laugh. TEEEEEEENY victory. I thoroughly trust the Angel women who are helping her though. All will be well!!!

The most horrifying thing the women at the Healthcare Center taught us is that EVERY time meds are taken away like they were, it causes brain damage. And each time patients are levelled out again it takes more meds to get a person “back”. Actually they are never able to achieve level of wellness they were at when the meds were stopped. It goes down a bit every time. The Mary of our last outing won’t be back.  I am so angry at the carelessness. All about money. It sickens me. So many lights have gone off the past few days. Mary has a master’s degree in Art Therapy. She was brilliant. An amazing artist/person. She’s bipolar. Her meds have been changed VERY often over the years and she has slowly deteriorated. There are quite a few factors we’re aware of and understand that have contributed to her decline but we still had many questions. We’ve had her checked for everything but learning this now I think I understand the final pieces to the puzzle of what’s happened to her beautiful mind. It’s nauseating and pointless.

It’s not my intention to demonize the head nurse, nor the employees of that nursing home. The nurse is the perfect employee for an administration whose main concern is making money. Everything done here was above board. Horrifying, but legal. And there are more AMAZING people there, both residents and staff who are WONDERFUL! We told them so all the time. We thought Mary would be there, happily and safely the rest of her life. It’s heartbreaking all around.

Bottom line: if You have a loved one in the Georgia nursing home/mental healthcare system: KEEP YOUR EYES AND EARS OPEN! Ask questions. Don’t innocently believe the answers. “We care” are only words. Watch the actions. Do research. KNOW Your loved one’s behaviour. And step in if You feel something’s off. It’s Your right. Don’t allow yourself to be intimidated or talked down from what You KNOW is going on. The nurse kept telling me I didn’t understand. Yes I did. Perfectly. And actually when I was packing Mary’s room one of the staff members who dearly loves my sister literally came running into the room crying. She asked what happened and I told her. She said, “I knew it! I spend a lot of time with Mary every day and I kept trying to tell them something was wrong with Mary! They wouldn’t listen!!!” Wow. 

When the dust settles, Mary is situated, we’ve had time to properly thank the AMAZING ANGELS who are helping us and all is well, I’m going to get educated and join in the advocacy for getting things changed. Other states have different rules…but Georgia’s view on mental health is frightening, unconscionably careless and dangerous.

wave by/© Blissbait Art

All artwork, poetry, etc. (unless otherwise noted) are by/© Katy Boyer & Blissbait Art. All rights reserved.

'om' by/© Blissbait Art

thank you for blog

 

42 thoughts on “ME in hiding • words of newly attained advice for anyone with a loved one in the GA mental healthcare system”

    1. Thank You so very much, Irina!!! My other sister, Jennifer, and I visited Mary for her birthday yesterday! She’s starting the slow return. They have restarted her meds and it’s showing. I called Friday and got a great report. And they even let us bring her presents and some birthday cake! YAY!!!! Onward. I should receive the list of nursing homes to go look at next week. I’m sending Huge hugs and Love right back Your way!!! 🤗❤️😊

      Liked by 1 person

  1. Katy, I love you so much for putting this together and writing this in such a brilliant and heartfelt way. It made me cry. If something doesn’t change with this, then something is truly and unforgivably, sadly wrong with our whole society! Thank you from the bottom of my heart!❤ Love, Jennifer❤

    Liked by 1 person

    1. Thank You, Darlin’! I love You so much, too!!! Something WILL change from this. We are going to help make it happen! Thank You for all You do as well!!! Sending HUGE hugs and crazy amounts of Love Your way! Hope work holds some fun today. Talk to You as soon as they send me the list of nursing homes!!! 🤗❤️😊

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  2. Dear Katy, this brought tears to me and I felt sort of helpless to leave you a reply at first. I have someone very dear in my life named Mary-Elizabeth Kate. I call her M.E. sounds like Emmy. And I often shorten it further to simply M. I watched my mother with dementia 30 years ago. She was very ill medically. The treatments induced her dementia. I lost my dad to dementia only last year. He was the smartest man I ever knew and even then hid it so well that for a few years it looked as though he had hearing loss and not dementia. It came to a point where it was undeniable. The medicine helped him so much and he was as sweet as a little boy. I know the sliding effects you mention. It’s frightening because once they slide down there is no going back up again. And it can be from the smallest of things, medication changes, and uti. He was hospitalized a few times with uti. Only a few months after I lost him another family member came to the place where she needed dementia care. I brought her here and the last year has been caring for her and helping her to settle. There have been moves because some places weren’t right for her. Hospitalization. Adjusting meds. When things are all as good as they can be, there is an incredible sweetness that I cherish. There’s nothing they want. You are enough for them. Just Your smile when you walk in the room and life is good. I can’t even begin to tell you how much this touched my heart and how much my thoughts are with you and your sweet Mary. She is very blessed to have you love her so much and so well. And I know you are blessed for having her too. Please take care Katy. Please feel free to email if you should ever wish to. With much love and hugs to You and your whole family!!! ❤️🤗❤️

    Liked by 1 person

    1. Oh, Suzanne. You SWEET, sweet Angel. What a journey You have had/are having. I am so, so very sorry. This our first experience in this arena. I can only imagine what You’ve been through…how well You know every corner of this room. God Bless Your beautiful heart. I am so happy that Your Mother, Father, M and Your other family member have/had You in their lives while they were going through this. It’s got to be soooo very strange for them as well. At times it becomes apparent that Mary is aware of just how gone her mind is. And You nailed it!!! Their absolute childlike openheartedness, gratitude and joy at the simplest things is beyond beautiful. A smile is the world. A hug is a pot of gold bigger than life. My boyfriend’s amazingly sweet mother has dementia creeping in on her. She’s 86. It’s so strange and sad to watch. His family are all amazing and they care for her beautifully. Thank You more than I can say for the invitation to reach out. If You ever need an ear, please know You can do the same. Thank You for the Love and Hugs You send!!! I know my sweet sisters would return it wholeheartedly! From all of us I send You, Your lovely M and other dear one Much Love and HUGE hugs as well!!! Thank You for sharing Your heart/story. You are sincerely an Angel. ❤️🤗🙏🏼😇💕

      Liked by 1 person

      1. Thank you so very dearly Katy. 💖 You have an angelic heart and I’m grateful to know you!! Huge hugs received and returned, childlike smiles and superelasticbubbleplastic inspiration to You!!! ❤️🤗🦋💐

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        1. Oh wow! Suzanne! You just started my Monday brilliantly! I’m half asleep with only a couple of sips of coffee down and then You zing childlike smiles and superelasticbubbleplastic inspiration my way! Alrighty then! I’m up and smilin’. I’m zinging them right back at You!!! And I am so very grateful to know You as well. Thank You for Your sweet words. Sending You love and hugs!!! 🤗❤️🦆🦋😊

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  3. Dear Katy,
    I read the whole report with the help of a translator.
    I will pray for Mary and send many good feelings. I will also light a candle with a friend at my place of strength and send it down the small stream.
    It’s good that you write everything and fight for a change.
    Greetings and hugs to you and Mary

    Liked by 2 people

    1. Oh my gosh, Sweet Susanne! Thank You so very much!!! I truly appreciate Your prayers and what You are going to do with the candle. That is exactly something Mary would do as well. Absolutely beautiful. Sending You Huge Hugs and so much Love right back!!! 🤗❤️😊

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      1. Last Sunday I was at the creek with my girlfriend. We sent a floating candle for Mary with the wish that she get a place where she feels comfortable and where she is treated to make progress again. Greetings to Mary and to you from my friend and from me, love Susanne ❤

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        1. Oh my gosh. You SWEET, sweet Angel. I am blown away by Y’alls beautiful gesture. THANK YOU SO MUCH!!! I’m going to post about this Saturday, but lovely Mary has landed somewhere. I have no idea what will happen. This is a huge lesson in trust and surrender….but it feels good and right and Lord knows SO many people are praying for her and sending her love and we have prayed for soooo many Angels to be at her side. Please tell Your girlfriend I said “Thank You!!!” and please give one another a HUGE hug from me, my other sister Jennifer, and our dear Mary!!! 🤗❤️🌀🙏🏼🌟😊💞!!!

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          1. Dear Katy, Jennifer and Mary. I will send the greetings to my friend, she can feel how Mary is and prayed silently, then we sent the candle. I wish you all the best and say thank you to the many angels who accompany you and make sure that everything is going well. Love Susanne ❤

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  4. Sorry to read this. May Mary experience peace, strength and calmness of mind. It was good that you took her back before it do more harm to her. Prayers and hugs to you, Mary and the Angel woman 😇❤️

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    1. Thank You so very much, Krishna!!! I truly hope, once this settle that peace, strength and calmness of mind are hers indeed…and that she truly will be allowed to sustain where she levels off this time. Thank You for the prayers for All. Sending Huge Hugs and Prayers for all good things right back to You!!! 🤗❤️😊

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  5. I am shedding tears of sadness that this has happened to Mary. I knew she was not doing well but then you said she was improving. I had no idea that her situation had changed for the worse. What a horrific nightmare for you all. I am glad to know you found an Angel tho. There is generally someone to come to the rescue and I am so happy your paths have crossed. Needless to say, Our health care system, lawmakers etc., have long ago lost their humanity due to their own lunacy for greed. “They” are shameless. Katy, every ounce of me, is behind your future endeavor to advocate for changes in state run care facilities, Medicare, Medicaid, & the evil done by pharma companies. You are so correct about coming off medications and losing progress. I just hope Mary can find her peace again. She has so much talent and personality to share. I have a few good memories of Mary. She once stayed at my place in MD, on her way to NH To get her masters. We sat on my porch and laughed the night away. Of course, we may have had some wine & treats, but I just remember the hilarity of the evening. You, and both your sisters, have a special place in my heart. I just admire you for taking on this issue and looking out for Mary. So many people do not have an angel like you. Therefore, this is meaningful Katy to future patients. If I can help in any way ((Ie,. Research on computer or letter writing) please let me know and please keep me posted on Mary’s progress. Huge hugs to you and Mary! ❤️I love you all ❤️and Katy keep up your drumming for answers to your questions. When they start putting you down with the “you don’t understand” they know they have been caught in their wrong. So yes call them out(aaarrrggghhh)!!!

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    1. We love You too, Beautiful Cindy. It’s so mind blowing, right? I will definitely reach out to You when I know what I’m doing. I think as a first step, while we’re waiting for the list of nursing homes to look at, is that I’m going to shoot a link to this post to all my congresspeople. Maybe all of them in the state. It can’t hurt. I’m going to preface the link with a note saying it’s our intention to help this behaviour stop and do they have any idea of what I can do to help. I’m not on facebook, but if You are and could share this that might help. I dunno. And Sweet Mary has told stories a few times about the fun times she had with You as well here and there over the years! 🤣The one I remember is a walk on the beach about 20 years ago (?) and a sit on a porch here on the island that may have involved some help from an herb or sorts? 🤣🤣🤣I died laughing when I heard that one. Hilarious!!! She absolutely adores You, we all do. You summed this whole thing up perfectly with Your AAARRRGGGHHH!!! I hope You and Your beautiful girls are well! Sending You Huge Hugs and SOOOO Much Love!!! 🤗❤️😊

      Liked by 1 person

  6. Bless YOU for caring and helping Mary, it’s a shocking tale that I think goes on all around the world. The people who I feel for are the people who don’t have anyone to fight their corner. I hope you keep us updated on Mary’s progress and the angels keep doing their work. 😇😇😇😇😇

    Liked by 2 people

    1. Shocking indeed! And Oh Lord….that’s right where my mind goes as well, Elaine. Bless the poor souls who are unwittingly reduced to nothing and have no one to help them. Thank You for Your kind words and I absolutely will let Y’all know how this goes. I have a really good feeling about these Angel women….and that our Angel trusts them implicitly is everything to me. 🤗❤️😊

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  7. You must be exhausted Katy, having to deal with this tragic interference in Mary’s wellbeing. Money rules yet again. It’s OK so long as the CEO’s are getting their huge salaries and bonuses, and the pharma companies are making huge profits.
    Hugs to you, your family, and to Mary. May she become more settled and get to enjoy a few more happy and contented times again.

    Liked by 2 people

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