Tuesday, October 04, 2016

The horrors of rehabilitation facilities...

With age comes wisdom...and many other things, a number of them unwanted. Unfortunately, as we age, we become more prone to injury and illness. Anyone who has an aging parent understands this quite well. The challenges of caring for an aging parent today are great. We have to be diligent, focused and attentive when it comes to their care and we are already stretched so thin in our own lives it makes this even more difficult. All too often we read horror stories about senior citizens who have not been treated properly in hospitals, rehab and nursing home facilities. We're told the only way to ensure proper care is to be involved night and day every step of the way. That's impossible for most who have families, work and other obligations. We do the best we can and hope that the facility we have chosen is a good one and that they are looking out for the best interests of our loved ones when we cannot be there. 

I'm here to share a few of the not-so-good things we experienced at a care facility my mom resided in for eight weeks back in 2015. I wrote a lot of things down, some of which I will share here. It was a long, complicated rehabilitation and thoughts of the things that happened, many of which are not listed, still make me angry. This is a way of dealing with that anger and helping others in whatever way I can. Everything I've written here is factual to the best of my knowledge based on experiences of my mom, my sister and me. Initially it was a scathing, angry piece until I realized that I needed to eliminate the emotion in order to convey to you the facts so as not to open myself up to any problems. My own personal thoughts about things will remain my own personal thoughts but I present you here a few experiences. Feel free to comment and share your own.  

 On Monday, November 24, 2014, my mother, during a routine trip to the grocery store to pick up some chicken to fry up for my grandmother, tripped and fell and was taken to the Emergency Room. It turned out that she'd shattered her femur. She had surgery that evening and thus began the most frustrating and most painful recovery of her life. 

After mom's surgery, she was discharged to a rehabilitation facility. After about two weeks in there, her health declined and it was determined she had a UTI and pneumonia. She went back to the hospital and spent about a week. Upon discharge she entered a different facility but after a week or two she still had pneumonia and she would not eat or drink, she was too sick to even do her therapy. She was sent back to the hospital on New Year's and spent about fourteen days in the hospital.  She was discharged January 15, 2015 to the rehab she'd just left, Terrace Rehabilitation, which is run by Greystone Health Care, where she would remain until discharge March 13, 2015.

Initially things seemed okay but there were a few things my sister and I had issues with and so we felt someone needed to be there every single day making sure mom was okay. Because it was an extremely critical time for me at work, my sister took thirty days unpaid leave from her job to be there. She is a bit abrasive and overbearing at times but she was, first and foremost, an advocate for our mother's well-being. My sister spent all day there with mom and I would stop by in the evenings before going home. As it turned out, it was a good thing my sister decided to spend all day there because she became practically a primary caregiver for my mom during those days. She changed mom's bed sheets, made the bed, emptied the bedpan, and cleaned the bathroom, because often times  it did not get done. Realizing the toilet seats were not cleaned and sanitized after being badly soiled, my sister purchased antibacterial wipes and cleaned the toilet seats, handicap rails, doorknobs and other fixtures in the bathroom. She also cleaned and sanitized my mother's half of the room. During that thirty-day period, my sister took care of many of the routine day-to-day tasks that the staff should've been doing. 

During mom's first few weeks in rehab, there were times she had to use a bedpan because her legs were far too weak from so much time hospitalized. It was extremely painful for her because her tailbone hurt constantly from sitting and laying in hospital beds for so long. The bedpan was placed as such where the edge of it hit her tailbone and it caused extreme pain. On a few occasions she waited nearly an hour for someone to help her despite calling the nurse's station for help. I witnessed a few times when they placed the bedpan and seemed to forget about her. I put on gloves and took care of things myself.

One night during the thirty-day period when my sister was there, she stayed particularly late with mom. Mom's roommate became belligerent and would not cooperate with staff. She was screaming and yelling and the nurse at the station would not get help so my sister demanded they do something.  It took a handful of CNA's to calm the woman down but it was becoming a dangerous situation and my sister threatened to call the police. One of the staff gave my sister the head nurse's personal cell number and she called her and told her to take care of the problem and expressed to her that mom feared being in the room with that woman as she seemed to pose a danger to herself and others. 

When my mother was initially admitted to Rehab and the nurses were going over her medication list, we were informed they could not obtain the expensive Budesonide (Entocort) that mom takes for her Crohn's Disease (which she has suffered from all her adult life and which had been in remission, thanks to her medication since 2009). The nurse advised us to bring in her personal prescriptions of Budesonide so they could dispense it to her. 

On or about January 16, 2015, I gave the nurse a bottle (Bottle #1) containing 100 Budesonide capsules.  On or about February 22, 2015, I happened to be visiting mom in the afternoon and noticed the nurse dispensed one Budesonide capsule in her afternoon meds. I didn't think anything of it until later when I arrived home and saw her remaining unopened bottle of Budesonide in my kitchen cabinet. I read the label which instructed she was to take three 3mg capsules, once a day, in the morning. I immediately contacted the facility and questioned them about the dosage I had witnessed as well as the time of day it was administered and was promptly informed that mom was being given the proper dosage. I knew they were not being truthful as I know what I had seen so I made plans to address it during my visit the next day. Before our phone call ended, the Nursing Director informed me there were only a few pills remaining in the first bottle (Bottle #1) that I'd brought in when she checked into the facility in January and I was asked to bring another bottle (Bottle #2) in for them to administer. On February 23, 2015, I gave them Bottle #2 and marked clearly how many pills were in it and circled the instructions. I was told by the Nursing Director that there had indeed been a mistake related to mom's medication, that somehow the nurses were only reading the first page on their computer screen and not the second (whatever that means). I was assured the problem would be fixed.

On March 12th I was on the phone with my mother's insurance company about another matter when they informed me that the facility had ordered a 30-day supply of Budesonide (90 pills) from a pharmacy in Tampa on February 27th. I did not understand why they had done that considering I'd given them a brand new bottle four days earlier. Not to mention they had informed me early on they could not obtain the medication.

My mother was discharged on March 13th. As I packed up her personal belongings, I asked the staff for the 30-day supply of Budesonide they had recently ordered from Tampa since I knew they would be billing my mother's insurance for it.  They gave me the 30-day packet as well as two other bottles of the same medication which confused me since there should've only been one.

When we arrived home on March 13th and got mom settled, I sat down and counted out all the pills:

Bottle #1 (which should've been used up by mid-February) contained 90 of 100 pills (10 pills missing)
Bottle #2 (which I'd given them in late February) contained 73 of 100 pills (27 pills missing)  
30-day pack contained 87 of 90 pills (3 pills missing) 

Mom was in rehab  from January 15 - March 13. Since she entered rehab late on the 15th, her first dose of Budesonide in rehab would've been on the 16th with her last dose on the 13th. That is a total of 57 days.  

57 days x 3 pills a day = 171 pills that should've been administered.

My calculations based on the number of pills remaining show she only received 40 pills.

40 pills out of 171.

At 3 pills a day that's only 13 days worth of pills out of a total 57 days in rehab. No wonder her stomach was hurting so much while she was in rehab. In fact her stomach hurt so much it set back her progress. It is our belief to this day that her Crohn's was thrown out of remission. Mom spent days throwing up, her stomach hurting, and unable to eat properly or exercise. She was struck with nausea, and a general feeling of being unwell. She was told she had to get out of the bed, and some days she couldn't. In fact, in her final week in rehab, mom was so sick she stayed in bed with severe diarrhea for three days which set her rehab back to the point they made her stay an extra week. 

Mom had been taking Budesonide since 2009 and it had worked beacuse her Crohn's had been in remission. She'd had no stomach pains or gastrointestinal problems until she checked into rehab. 

It's important to note that after mom was discharged she received a bill for several hundred dollars for medication administered to her in rehab, one of which was the 30-day prescription of Budesonide. I immediately contacted Greystone HQ and told them the story about the medication and informed them that I had given the rehab facility my mother's Budesonide because they were unable to obtain it and that she should not have been charged.  They told me they would look into it and the next time I heard from them it was a voice mail from the individual handling the situation informing me she had cleared up my mother's meds bill. Not long after, mom received a statement with a zero balance as evidence of that.

My mother had been diagnosed with high blood pressure at some point about 10 years ago (which is now under control thanks to her nephrologist!). After mom had been sick to her stomach for a few days during rehab, her BP dropped into the 80s and 90s and decided to stay there. Her physician at the rehabilitation center, who took it upon himself to adjust her BP and other meds, because, as he told us, his mission was to get her off as many meds as possible, told us the change in BP was her new normal. We could not understand how BP could suddenly be so low and be the new normal but he was the doctor and he reassured us. 

Now,the entire time during rehab, mom suffered from severe swelling, redness, and pain in her legs. The doctor instructed the therapists to wrap mom's legs tightly for several hours throughout the day. She was then told she needed to do her exercises or she wouldn't get out of there. It was difficult because she was in pain but they continued to assure her what she was going through was normal. 

Later on in rehab mom complained of severe groin pain and the same doctor as above told her she probably just pulled a groin muscle. My sister and I just looked at each other. How does a woman who's barely moved except for a mild rehab sessions every day wind up pulling a groin muscle? It made no sense but again he was the doctor and we had no choice but to take his word for itThe pain in her groin was intense and her hydrocodone wasn't working so the doctor gave her Tramadol, which had some effect.  

The week my mother was supposed to leave, the Director of the facility gave her a hard time. She told my mom if she could not walk "x" number of steps by herself she could not go home. We felt they were treating her like a child and by the end, mom was sick of being in that place, sick of the nasty food, sick of her doctor and the way her pain was dismissed. The Director did not state directly but rather implied my mother wasn't trying hard enough. Believe me, mom was trying but she was in pain--her stomach, legs and later the groin. She's been in pain most of her adult life because of the Crohn's and was tired of being told she wasn't working hard enough. Nobody wanted to leave that place more than she did. Around the time she was to be discharged (it was even marked in bold letters on her calendar!), they led her on making her think she was going home and at the last minute called a meeting in which I was present where she practically had to beg to go home. The Director asked if someone would be there with her, I told her I would be but that wasn't enough. The Director insisted mom stay one more week. In the end, I relented too, knowing there wasn't much I could do. They were not going to discharge her. And I thought well maybe one more week won't hurt. I certainly was wrong.

Mom was released on March 13th. On March 14th, the home health nurse took my mother's BP, it was 80/49 and she was rushed to the Emergency RoomThe doctors diagnosed her with three blood clots in her legs.  We were told by the doctor at the hospital that severe swelling, warmth, redness and pain were signs. 

For eight weeks, the signs had been there. We had raised concerns about mom's legs over and over again and not one person at the rehabilitation center took us seriously.

Getting back to the ER visit...the night the clots were diagnosed, the ER docs asked my mother, "who overdosed you with coumadin?" We all looked at each other shocked because mom hadn't been on blood thinners in years. Her doctors informed us her INR was a 10. The INR number refers to how long it takes a blood to clot. (1.1 or below is normal, 2-3 is what the Mayo Clinic calls "an effective therapeutic range" for people taking blood thinners).  A ten is far too high. The doctors said her blood was as thin as water. We informed her doctors that her medication had been strictly controlled and issued during the 8 weeks at rehab. They insisted she'd been given blood thinners but there was no way for us to know.  To this day we still have no idea how her INR got so high.

My mother spent a week in the hospital while doctors treated the blood clots. While there, she became extremely weak and eventually when she returned home she was unable to stand or walk on her own or perform simple functions without the help of my sister and me together. She was worse off than before she'd gone into rehab. When the home health folks got to her house, they evaluated her in her bedroom because she was in so much pain she could not get out of bed.   In fact, my sister took great care to space out her hydrocodone so as not to give her too much. Mom was in so much pain she begged for  more but we knew we'd already given her the maximum dose during the 12-hour period. My sister and I kept a chart taped to the wall next to mom's bedroom so each of us could see when the other one had administered the meds to as not to cause an accidental overdose. For a week, mom required two people to help her. Once my sister returned to work, I had to move in with my mother for eight weeks, using up my vacation and sick time, assisting mom in everything and helping her hen. She also worked with physical and occupational therapists 3-4 times a week. It was a difficult time for her. We were both tired and exhausted but in the end we did it. 

There are other things that happened there that I shall not go into. I just felt the things I have written here should be enough to highly encourage anyone reading it into double-checking the facility their loved ones are in or headed to. You need to be there as often as possible and ask questions, write everything down, including names and dates, and do not be intimidated by Directors and Doctors. They work for you, you do not work for them. 

And share your stories because others can learn from them.

Monday, October 03, 2016

Dear Jess: A Note From Your Conscience On Your Birthday...

Dear Jess,

Well, here we are, another year older. We've been through a lot haven't we? Yep. I know everything--the good, the bad, and the ugly, your hopes, dreams, greatest joys and deepest fears. I know where all the bodies are buried. That's right, I know allAnd so, on the occasion of this little thing called your birthday (or rather our birthday), a day you insist on treating like any other common day, which, by the way, I find rather appalling (not even so much as a bottle of wine---what's up with that?), I have a few things I want to say to you and you're going to listen. Oh wait...you really don't have much choice in that do you? :)

So, here goes...

You're smart. Shocking isn't it? Considering all the stupid shit you've done in your life? But that stupid shit doesn't define you, it probably actually made you a better person. Don't tell anyone I said that. And stop deflecting when people tell you that you're smart. Do you think Einstein deflected when people told him he was smart? Don't go getting a big head, you're no Einstein, but you get my point.
You're a great writer. Mrs. B would not have fought with Mr. Irvin to get you in her Journalism class back in high school if she hadn't seen your potential. The same goes for Diana. Twenty-three years after she had you in her first college English comp course, she's still your friend and mentor. She would not lie to you. You've got the gift. Believe in it. Look at it this way, if you weren't any good at it, you wouldn't be getting paid for it. If you weren't any good at it, people either tell you that you suck at it or they wouldn't say anything at all. There's your sign. 

You're funny. I've been telling you for years to take this show on the road but you always come up with a reason not to. Frankly, I think you're just too much of a weenie to do it but hey, I'm just your conscience, what do I know? 

You care. Hey, it beats being an unfeeling asshole any day of the week. 

You're too hard on yourself.  FFS! Lighten up, Frances.


Stop feeling guilty. Oy vey. Now, this is a tough one because the Jewtalian in you can't help but get sucked in (apparently it's a rite of passage in this family) but you just have to fight it. You have nothing to feel guilty about, you do more than enough. Hey, here's a novel idea...take all that energy you're expending on feeling guilty and put a swift kick in the ass of the schmucks who should be doing more. You know who I'm talking about. Oh, yessssss.

Know when to say no. No. Not now, you idiot. 

Happiness isn't constant. Awww poor BB, are you feeling sad? TOUGH! IT HAPPENS! GET OVER IT!  Anyone who says they're happy 24/7 should be escorted to the nearest padded cell because that is not reality. Happiness is basically those 10-second respites in between life crises--now that's reality. Face it, sometimes life sucks. You deal with it and move on. 

Don't fear change. Things will change whether you want them to or not and it's much harder to deal with it if you fight it. Figure out how you can make it work for you instead of against you.

Take care of yourself. It's nice that you always put others first. Really? No, fix that.

Multitasking is bullshit. No need to elaborate.

Stop worrying about that "big thing" you're supposed to be doing. Oh but I just know there's something out there I'm meant to do... Blah, blah blah. Think about it, you're already doing it. You don't have to go big to have a big impact. 

You can't prepare for everything. You're driving me crazy with this.

Therapy is everything. If I haven't already thanked you for this, thank you. You're welcome.

Screw what other people think. I'm awarding you "Most Improved" in this category.

You can do anything you want with your life. I'm going to make you see this if I have to beat it into you. Wouldn't that look a little strange?

The "little voice". Listen to your gut instinct...that is until it starts nagging you incessantly and then...silence it. Wine helps.

Screw that "live like you are dying" shit. It's not possible. You can't possibly live like that unless you're really dying.

Life is short. Well, duh.

Until next year...

ps...Happy Birthday! Now go look in the mirror and tell yourself it's going to be a great year and then make it so. And as soon as the little voice starts in (because you know it will), tell it to STFU. :)