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