Saturday, December 31, 2016

Random Thoughts on a New Year's Day...

The older I get, the more I treat each New Year like any other day. What's so special about January 1st? I used to do resolutions, I haven't done them in forever because they never stick. Instead I just say I'm going to keep on trying to do better, no matter what day it is.

I've written very little publicly about the death of my grams back in June 2015 because it's still too hard to talk about. I've written a few things on facebook about how awesome she was but I still can't go into detail about what her presence in my life meant to me or how much my heart still hurts eighteen months after she died. I wrote her obituary thinking that would be my way of getting some closure but it didn't help. All this time later, I find that one of the reasons I can't talk about it is because I can't find the words to truly convey everything she meant to me. And then if I do find the words, I am not even sure how I'll put it all together. I talk to my therapist about it...but grams was the kind of person who deserves to be written about, remembered for the special person she was. Everyone who knew her liked her, she was legend. I can't imagine writing about everything I write about but not writing about her. It's almost as if I am intentionally avoiding it. I am. I know it. I just don't know how to fix that.

You can't ever go home again.

Thomas Wolfe wrote about that for reasons different from mine but the title is right-on.

I sat outside my mother's house the other day. It was evening, nobody was home, it was cold outside and I was staring up at the sky. And I wondered, "how many times over the years have I stared up at that same sky? Those same stars? And what was I thinking each time?" Because I am quite sure my mindset each time was completely different. I tried to remember what I thought about looking up at that sky, when I was 16. While I don't remember exactly, I do have a pretty good idea. I was a teenager and that age everything's hard. At that age I couldn't wait to grow up. Now I'm grown up and it's not as great as I thought it would be.

When I was at my mother's house I took a walk back to grams house. Now that she's gone and we've emptied her house, it's seems so old and abandoned now. It's lifeless. They say when a person dies their house dies too. It's true. Her house is dying. But damn it still seems sometimes like she's there. Why do I do that to myself?

When I was at my grams house, I stepped in, looked to my right and left, surveying the place as I've done less than a dozen times since she died, and the small of must and mold and chicken soup was too much, I closed the door and then sat down on the front steps. I closed my eyes and remembered nights when we'd have dinner on the porch on nice evenings. She always had a card table out there with a vinyl tablecloth on it. I'd set it for two, we'd start off with salad and then our main course. We'd eat, drink our tea, talk and enjoy ourselves long until after dark. Grams and I had great times there.

Friends are the family you choose. You don't have to like someone just because you share the same DNA. If more people surrounded themselves with people they actually want to be around rather than people they feel they have to be around...


It's now January 1, 2017 and I managed not to watch a single one of those bullshit New Year's Eve shows. The days of watching the ball drop (remember when it used to be a big apple?) are over. NO fireworks, no phone calls, no hugs and party favors. What's to celebrate? We act as if January 1st is a fresh start but I think that's a bad idea because starting over is a terribly long process. Frankly, I hate starting over. Instead I like to think of it as a continuation of the progress we've made in the year prior.


Oh yeah, therapy works. Try it sometime.

Friday, December 30, 2016

I don't cry anymore.

I can't remember the last time I really cried. With everything I've been through in the past two years you'd think I would've cried more but I just decided at some point, crying doesn't serve a purpose. Oh it gives a sense of relief but sometimes it hurts more to cry than not to cry. Sometimes I think if I do cry, I won't stop. I can't let myself go back there. Ever.

From mid-2014 to mid-2015 it seemed to be one crisis after another. I felt like my life was falling apart so I had to go back to my therapist, my mother fell and broke her hip and spent nearly four months in hospitals/rehab, I was sick with the flu three times, mom re-entered the hospital for clots that went undiagnosed in rehab and I took leave from work and lived with her for 8 weeks to help care for her till she regained her independence, my beloved grandmother died (I found her), two friends from high school I'd lived next door to for years died, our next door neighbor we'd known for 35 years died and there were a number of just really shitty things that happened during that time period. It was one thing after another. I just thought it would never end.

I was stressed out. That's an understatement. I was exhausted mentally and physically. I had no energy, my back hurt every day, I worried constantly, I wasn't taking my anxiety med on a regular basis, wasn't eating right, and had little face time with friends. There wasn't much left of me when all was said and done.

The result of all this---I don't cry anymore. Sometimes I don't care. Well, wait...that's not true, I do care, but...I don't spend my waking hours worrying "what if?" What if mom falls again? What if I get sick again? What if someone else dies? What if this? What if that? I spent most of my life trying to put together a plan B, C, D, E and so on so that in case of an emergency I've got t contingency. You know what? It's draining.

Enough already. 

Be The Change...

I just read some things that made me cry--stories of hate, anger and violence all because people voted one way or another.

We can't live like this.

To the rational people out there....regardless of which side you were on in this election, now is the time we need to do everything we can to heal the rifts. Reach out to people, even if you disagree with them, even if you voted differently from them, put your politics aside and talk to them, get to know them, listen to their story. There's so much we can learn from each other. 

We must work together to keep our communities and ALL those living in them, safe. People from all walks of life should stand together, strong and unified, and REJECT hate and violence. Right now more than ever before, we need unity and peace. Every one of us has the ability to make it happen. Sure, debate and discuss, share your differences of opinion, talk about the things that matter to you, and listen to others as well. Show kindness, compassion and understanding and give serious thought to what others are going through.  

If you want to make the world a better place, don't just talk the change, be the change...

Saturday, December 24, 2016

The Christmas Spirit is gone

Things just aren't what they used to be and you can't ever recapture the magic of your youth, no matter how hard you try. So it's time to stop trying.

Sunday, November 27, 2016

Fidel Castro Was No Hero

Growing up in Miami in the 1970s, I had a large number of Cuban friends, many of whom I’m still in touch with today. Most of them were in Miami because they had fled with what remained of their families, from the barbaric dictatorship of Fidel Castro.

One day during my childhood, while playing with a friend, she told me how her male relatives—grandfathers, uncles, and father had opposed Castro and as a result, had been tortured, imprisoned, and sometimes disappeared. She told me that other male relatives were forced to serve in the army. The stories from other Cuban friends were nearly the same and were horrifying.

Years later, when I was in the military, we rescued large and seemingly endless numbers of Cuban refugees at sea. They sailed on anything that would float—old, dilapidated boats and shoddily crafted rafts made of wood, plastic, inner tubes, and any other items they could find, which were barely tied together. The people we rescued were severely sunburned, thirsty, exhausted, and near starvation. By the time we’d picked them up, at least half who’d started out with them had perished at sea. But that was the measure of their resolve; life in Cuba had become so dangerous that death at sea in the desperate quest for freedom was preferable to living one more day under tyranny.

As I read about Fidel Castro’s death, I am seething at comments about how, although he did some things wrong, he wasn’t so bad, that he was “good for the people,” after all they had a good education and health care system and wealth was evenly distributed. Immediately I thought of my old friends and their stories. Fidel Castro was no hero or savior of his nation; he was a ruthless dictator and murderer.

Raul Castro, currently President of Cuba, who has always praised and supported his brother Fidel, and who recently introduced new market-style economic reforms and supported a re-establishment of diplomacy with the U.S., is no hero either. Raul served as an executioner during the Cuban revolution and was widely known for viciousness and brutality in his torture and murder of hundreds of dissidents, even making light of it in later years. Raul has stated he will step down in 2018 and so remains the question of who will succeed him. Will it be more of the same or will the Cuban people demand change?

Some will argue that because so many Cubans stayed behind, and because Cuba has survived under the Castro regime for so long, perhaps it really isn’t that bad; maybe the people are happy with the status quo. Born under a flag of freedom, I cannot imagine living happily under such oppression, but it is not for me, nor America to decide how the Cuban people should live their lives. I do, however, believe we have a responsibility to encourage them to decide for themselves and the only way they can do that is to have free elections with no threat of repercussion for their choices. After nearly 60 years of communism, the Cuban people should have the opportunity to take charge of their own destinies.

Thursday, November 17, 2016

Joe Biden's "Note to Self" reminds us of the things that are most important in life...

This is one of the most touching and inspiring things I've seen in a long time. It hits home once again, we are more than what people may see on the outside. Oh, if only we could've shared our wisdom and experience as adults with our younger selves...think of the pain we could've avoided. Then again, if we'd avoided all that pain we wouldn't be who we are today, would we?

Wednesday, November 16, 2016

Understanding the Electoral College

If we're going to have a national discussion on this topic, people should understand it first. Here's a very simple refresher of the Electoral College, why it was created, and its importance to our system of government and our nation.

From author, lawyer and Constitutionalist Tara Ross...

Monday, November 14, 2016

Get out there and live...

My grams was a vibrant, energetic, kickass woman who only started showing signs of slowing down around the time she turned 96. (Seriously! :p ) She'd always been active whether it was taking care of her family, working, volunteering. Heck, she worked the polls for nearly 30 years, retiring just after she turned 96. She'd tell me there were days she was so tired she didn't want to get out of bed but she did it anyway because she knew what would happen if she didn't--she would die in it. And there was no way in hell she was going to let THAT happen.

So every morning, including the morning of June 15, 2015, as tired as she was and as much as the arthritis hurt, she got out of that bed. Once again, she'd been given a chance to kick life's least for a few hours anyway, before it was decided for her that she no had do, she had done her share of good, she had lived her best life and it was time for her to move on. And so on that morning of June 15th, she did just that. She moved on.

Image may contain: 2 people
Grams & me
Grams was not amazed, but rather thankful as she moved into her 90's that her mental and physical health was so strong. Her sister, who passed away recently, would often say that grams got the good genes. Grams would credit her Italian father and Sicilian mother for that. She had a little high cholesterol that she took meds for and a little arthritis which was eased by a few Aleve every day. She swore by vitamins especially Gingko Biloba and never missed a day taking them. Also, reading and doing crossword puzzles kept her mind sharp. Then there was the interactions with people, which really, was her favorite thing. Oh how she loved people. The interactions kept her engaged with life.

In the last few years of her life, grams would tell me that every day she woke up was a gift. She was a woman who knew how to live and I'm not talking about living in the material sense, she just knew how to appreciate LIFE. Grams made the best of every single day of her life. She loved working, volunteering, helping people, spending time with her family and friends, going to the mall, social activities--just getting out of the house to do things, even if it was just to go to the store---which she would do just about every day even if it was for the smallest thing like a loaf of bread. Mom would say, "Ma, what could you possibly need at the store again??" and the truth was most of the time, she really didn't "need" anything, she just wanted to get out. And hen she was out, she always took time to talk to people--at the store, bank, post office, the school, doctor's office, gas station, etc.

The day after grams passed away, people were in shock because they'd just seen her, as vibrant and energetic as ever. I don't know how she hid how tired she'd become, but she did. She definitely believed in mind over body and so I have no doubt she willed herself to feel good and it reflected on the outside. The woman had an incredible will and determination.

Grams truly believed she was here for a reason and knew she'd live for that reason, fulfill that purpose until God was ready to take her. And she sure did. She LIVED. Boy, did she LIVE!

I learned a thousand and one lessons from Grams in the 46 years I had her in my life--so many lessons that I could not even begin to list them here. But among the most important were about purpose and about never giving up.

Everyone has a purpose, a reason for being here. And if you don't yet know what it is is, know that you are NEVER too old to find it. You have a gift, sometimes it's right there for all the world to see and sometimes it isn't. Find the gift, make good use of it, take your God-given natural talents and use them in a way that makes you feel happy, fulfilled and brings joy to your life and brings joy to others.

When life sucks and you don't want to get out of bed, get out of bed. When the pain hits, fight back. Don't let yourself wither away. Don't let the age, the pain, the frustration, the sadness, and the loneliness take you over. Life is good, it's good because you're here and you matter and you are a part of this big, stupid, crazy, world and your presence is important. Life is good, living is better--so Live!

Every day you wake up, it means you got one more chance.

What are you going to do with yours?

Friday, November 11, 2016

Thank you, Veterans!

On this Veteran's Day, I salute all those who have ever served this great nation. Thank you for your service and your sacrifice. When your country called, you answered it, whether you believed the fight was just...or not. And that last one is not an easy thing to do...but you went anyway, regardless of all the questions that may have been churning in your mind. It's not easy trying to bring peace, stability and freedom to a foreign land in turmoil. It's not easy to leave your family, friends, your way of life behind not knowing if you will ever return alive. It's not easy doing what you did, and did it anyway. Your presence out there made us all feel safer. America appreciates you!

Wednesday, November 09, 2016

The Power in This Nation Still Rests With The People...

"The powers not delegated to the United States by the Constitution, 
nor prohibited by it to the states, are reserved to the states respectively, or to the people." 
Donald Trump is our next President and the new Congress is majority Republican. To say I have great concerns about this is an understatement but it is what it is and nothing will change it. I may not have agreed with everything Hillary has said and done, and I've had my reservations about her, but weighing the two (heavily, I might add) she was the more qualified of the two and less likely to do major damage to this country. Also, her campaign was a refreshing positive to Trump's negativity. That said, what's done is done and now we must deal with the reality and a large part of that is accountability. Now, we go back to holding every elected official, regardless of party, accountable for their actions. We hold their feet to the fire.

This is my country. This is your country. It's when things get hard that we hunker down as a people and fight our best fight. Throughout this nation's history, millions of people from ALL walks of life have fought (in more than just wars) for freedom, equality and justice. If the people had given up imagine where we'd be...

If the colonists had not fought for freedom.
If slaves had not risen up.
If there had been no abolitionist movement.
If there had been no suffrage.
If there had been no civil rights movement.
If there had been no Native American uprising.
If there had been no labor movement.
If there had been no women's rights movement
If there had been no anti-war movement.
If there had been no gay rights movement.
If there had been no environmental movement.
and so on and so on and so on...

America is still a work in progress and sometimes we're going to have setbacks. The important thing is that we always keep charging forward. What we need most of all now is the rational people on all sides to come together and find common ground. You can't do much about the irrationals but you can outnumber them and drown out their hate and irrationality.

A number of people express concern America is on its way to becoming a dictatorship, that the government will jail dissenters and place certain individuals in internment camps. I do not fear that because I have complete faith in the rational population of the American people. We will never let that happen. We must remember that America is a Constitutional Republic, where officials are elected to represent the people and as such must govern in accordance with Constitutional Law which limits the government's power over its citizens.

When in doubt, remember...the power in this nation still rests with we, the people. It is our responsibility to use it and use it wisely.

Monday, November 07, 2016

The Real Reason Burger King Retired the "Have It Your Way" Slogan...

...because they don't want you to have it your way, because to have it your way means they'd actually have to do that thing called their J-O-B! 

I was with mom and Aunt JoAnn on Friday and after a particularly long day we stopped at Burger King near the interstate as a last resort because none of us had eaten at all that day. We order via the drive-thru, I give my card to the cashier and she proceeds to run it through--but nothing happens. She runs it through several times and then wraps paper around it and tries again--nothing. It's not declined, she just tells me that it won't go through, can't be read. I tell her it's a new card with the chip in it and that it does work because I've been using it for over a month. Tries again, nothing. The manager goes over there and asks what the problem is and the cashier explains. So we give her my aunt's card. Runs through fine. End of story. Of course I'm still puzzled as to how my card didn't work but my aunt's card did.

Then, when we're ready to pull to the new window, she asks about us paying for the other two meals? I was like "What?" They were all screwed up. I'd just paid for three meals on one order and yet she was telling me that the orders had been billed separately and then looking back she realized she was wrong. (I should've known at that point this would not end well).

Anyway, we get our stuff, I get mom and my aunt home and settled. I check my bank account online for another reason and notice I'm charged the same amount my aunt was charged for the meals.

Since I had to go back to the city anyway, I stopped there, went in and talked to the manager. I had my receipt in hand and proceeded to explain what happened. This one had attitude from the very beginning...

Manager: "There's nothing I can do, I just got here, I wasn't here when it happened."

(I'm thinking " is that my problem? Yes, I knew it happened on a different shift--but that's not an excuse.)

Me: "Well, you can go through the receipts and see clearly that two charges for the same amount were made at exactly the same time." I even give her the name of the cashier who had helped us. I offered her the receipt.

Manager: She refused to even look at the receipt. "You have to contact the district manager."

(At this point I'm remembering my days working in fast food back in high school in the 80s when the manager on duty was attentive to customer questions and complaints, dealt with them to the satisfaction of both the customer and the business, and moved on).

Me: "What? But you're a manager. Surely you can look into this."

Manager (with major attitude and still refusing to see my receipt): "I'm not just giving you money back." Then looks at the schedule and says, "She'll be here tomorrow."

I explained to her I live out of town and no, that's not convenient for me and that I felt there was no reason she could not investigate the situation and fix it there. She shrugged her shoulders and said the manager would be there Monday. I explained that wasn't convenient for me either.

Manager: "Well I don't know what you want me to do, I can't just give you a refund."

Well, I'll admit I had a hundred thoughts about what I wanted her to do at that moment, oddly enough, none of them had anything to do with giving me my money back but I digress... 

At this point, I was exhausted from a very long day and lots of driving. Her lazy, bullshit attitude had already grown quite old and I asked how I could get in touch with the District Manager. She went into the back and returned with a piece of paper and a name and phone number she'd written on it. When she handed it to me, she again said there was nothing she could do (translation: there was nothing she would do) and then under her breath muttered some bullshit about not giving me my money back.

I am not one to give up easily but I try like hell to save my energy for the right battles. I headed toward the door frustrated, not just over her but because I'm really tired of being dismissed when I have a legit customer complaint about something but then I thought "this is just utter bullshit" and I  walked back over there and said to her loud and clear so that everyone in the restaurant heard it. I told her all I wanted and expected was decent customer service, for her to listen to my complaint, do something to fix it, not to be dismissed with an attitude and "I don't know what you want me to go."

I made sure everyone in the restaurant heard it. Believe me, they did.

I will not be dismissed. I am tired of shitty customer service. I am tired of day after day, having to deal with attitude from people who work with the public. If you don't know how to deal with people respectfully and courteously, then you need to find another line of work. And when you are a supervisor, manager, director---when you are in charge of an establishment and other people, you are held to a higher standard because you are the designated leader. The shit falls on you. If you can't handle it, you don't deserve to be the leader.

By now you're probably wondering how much we're talking about here. 


Yep, that's it. $25.46. I could say it's not about the money but...well they did take something from me that does not belong to them so...I want it back. But more importantly it's the principle. They are wrong, I am right. I approached the manager with a problem, she refused to at least attempt to try and solve it, instead dismissing my complaint as if I didn't matter. And I do matter. I'll be on the phone with the General Manager and District Manager if necessary till I get some satisfaction here and then once that's done, I'm going to make sure I tell everyone what a piece of shit establishment that is. It sucks for the hardworking employees there, but you know what--it's about time we stand up to shitty customer service. It's about time we say we're not going to be walked all over anymore. It's just time to send the message that we're just over this shit, just over it. 

And in case you haven't heard, I'm just the one to do it.

Saturday, November 05, 2016

Auntie Nina, we will miss you dearly!

Auntie Nina, my great aunt and grams only sister passed away this morning at her home. She was ready, she knew it was her time. She always told us she lived the life she wanted with NO regrets! And now she is with her parents Thomas & Josephine, sister May, and both of her beloved husbands Virgil & Bill. Auntie Nina was an amazing woman and we will all miss her dearly!

Giovannina "Jeanine" Antonette Elizabeth Mangieri Young Raymond
June 21, 1923 - November 5, 2016

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 discharted 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.