THEY SENT MY HUSBAND HOME TO DIE

Baptist Hospital & Medical Center, Little Rock, Arkansas/Medicare/Medical 2016
By – Sheri de Grom

Baptist Hospital and Medical Center, Little Rock, AR

Baptist Hospital and Medical Center, Little Rock, AR

 

Baptist Hospital, Little Rock, Arkansas sent my husband home to die.

A mere pull on the plug of Tom’s heart generator, a two man lift, a rapid ride in a wheelchair to the front door and we haulted.

We were met, at the exit, by 3 hefty physical therapists who placed my husband in an unfamiliar cradle hold and put him in our car for the ride home to Conway. The speed of Tom’s transfer from the cardiac unit to the outside of the hospital seemed he’d been shot from the dirty laundry chute.

Tom didn’t have the use of his limbs, none of them. He couldn’t sit-up in the wheelchair and the floor RN strapped him in before he was wheeled off the ward!

My Prince Charming had no idea where he was or what was going on and for that I’ll always be grateful. That’s the only thing I’ll ever be thankful for when it comes to Baptist Hospital, Little Rock, Arkansas.

Baptist Hospital’s logo represents the amazing care they offer patients. The ONLY AMAZING CARE THAT ACCURED DURING THIS ADMISSION WAS HOW FAST THEY THREW MY HUSBAND OUT OF THE HOSPITAL IN CRITICAL CONDITION?

Think back 20 years, would this have happened?

I’ve witnessed much due to Tom being bipolar, but nothing this blatantly hostile. The events of Feb. 10, 2016 exhibit medical care USA 2016. This is where our medical care stands and it can happen to anyone, anywhere.

We didn’t have a rehab to take Tom to that day and I’ll discuss the obstacles in our way in a separate blog. My anger burns and I cannot logically discuss the atrocities imposed upon

My fear and anger swirled in all directions. GET BACK, GO AWAY, LEAVE ME ALONE!

My fear and anger swirled in all directions. GET BACK, GO AWAY, LEAVE ME ALONE!

those requiring high cost medications or that have a mental health illness diagnosis, even if the symptoms have been controlled for well over a decade. Tom has both!

Tom qualified for Home Health due to the severity of his illness. [He was still listed in critical condition and we were going home where I was the primary caregiver]. Just because I knew medical jargon and still carried not only JCAHO (Joint Commission on National Quality Assurance) and Inspector General (IG) credentials. I’m not a Critical Care Team member and that’s what Tom needed 24/7.

I went around our social worker at the hospital (assigned to Tom’s case) and contacted his trauma surgeon. I requested an order for Home Health. He also failed to tell me what our obstacles were in getting Tom into a rehab facility.

Do not assume the social worker assigned to your case cares anything about your loved one or what your own capabilities are. Ours was impossible to reach about possible treatment and/or continuing treatment options. She never seemed to be in her office, never answered her phone directly and when she did return a call, it was often days after I needed the information.

There’s not a doubt in my mind that Tom was discharged from the hospital to die. Discharging him saved hospital resources, made his bed available for another cardiac patient and they no longer had to dispense Tom’s high-priced medications. The hospital had already bled our insurance dry of what they were going to pay with high cost procedures performed back-to-back.

I’ll write more about Home Health in a future blog but over the next few months I learned our social worker at Baptist Health had lied to us about what was available for Tom and we would never have had to undergo the nightmare the week Tom came home.

Other professionals lied by simply omitting what they knew. They understood what was required to admit Tom to a rehab facility and no one, not one person on Tom’s medical team said one word about what the real problem really was. I had to search out this answer for myself by reading the Federal Register and cornering CEO’s of rehab centers when they told me no they would not accept Tom as a patient.

I'm on 1st today the same as I was when Tom was diagnosed with bipolar disorder. Our marriage is based on unconditional love and not about the person on first. We are about loving one another.

I’m on 1st today the same as I was when Tom was diagnosed with bipolar disorder. Our marriage is based on unconditional love and not about the person on first. We are about loving one another.

My former deputy and dear friend, Michael, told me the subject of ageing ill patients came up with his golfing friends on a regular basis. Many are cardiologist docs and they are equally frustrated with Medicare and also freely discuss the practice of discharging patients to home to die. It saves the hospital expenses and if the doctor can make it happen before the weekend, well there’s a good chance the doctor will have an easier weekend as well. There’s not a lot of money to be made in treating dying patients.

These same doctors can enjoy their leisurely 18 holes of golf over the weekend plus spend extra time at the 19th hole while the patient’s family is alone, dealing with the death of their loved one, in the home. This is not a time when you want the doctor on call. We all deserve better than this!

For a doctor to remain in good standing with Medicare they are discouraged from having a patient in the hospital over the weekend.

It wasn’t until about three months later that I learned the social worker had lied to me on several different occasions. I’m not sure she ever shared a single truth.

We arrived home that day of Tom’s discharge and I fell into one of the worst weeks of my life. I met despair at our front door.

This is how it happens. One moment you are surrounded by alarms and buzzers in a cardiac unit and the next you are being wheeled out of the hospital. None of us are immune from this treatment.

Tom came close to dying that week, closer than any man and wife should ever have to go through when they have God and each other at their side. With tears in my eyes, I pray this will never happen to you or anyone you love. I cannot begin to tell you the unimaginable hell that I had yet to face. I will blog about it later but I can only write about this past year in short increments. It’s been an incredibly painful journey with the love of my life. The man I share my life with and wish to do so until death do us part.

Thank you for reading with me. I don’t write of our experiences to cause you needless fear about you or those you love. I want you to be prepared for what’s ahead and know that anyone, regardless of circumstances, could have this happen to them.

I appreciate your time.

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About Sheri de Grom

Retired Fed/JAG, 5 yrs. on Capitol Hill. Former book buyer for B and N. Concerned citizen of military drawdown. Currently involved in mental healthcare reform, health care strategist and actively pursuing legislative change wherein dual retirees are exempt from enrolling in Medicare at their own discretion without losing tertiary healthcare benefits. Monitor and comment on Federal Register proposed legislation involving Mental Health, Veterans Affairs, Health and Human Services, Medicare and rural libraries. Licensed OSHA Inspector to include Super Fund sites. Full time caregive to Vietnam era veteran. Conceptualized, investigated possible alternatives, authored, lobbied for, and successfully implemented Title X, Section 1095 (known as the Third Party Collection Program of Federal Insurance).
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113 Responses to THEY SENT MY HUSBAND HOME TO DIE

  1. bad301 says:

    WOW I would of flipped out. I had to stay in the hospital for a month when I had my heart attack. I was stable when I finally went home but I have had a lot of problems with depression, anxiety, and PTSD. I also have bipolar. I am getting it from everywhere I look. I know you wrote this piece last year, but how is your husband doing now? -Bruce

    • Hi, Bruce – I wish there were a magic formula but unfortunately there’s not. As the ongoing caregiver I have a lot of anxiety, depression and complex PTSD. My husband is very ill and I never know from one day to the next what will happen. I’ve fired most of the doctors he had while in the 1st hospital and so far am pleased with the replacement specialist. I’m sure you’ve experienced less than perfect care as a result of being bipolar. We never know how well a doctor is going to interact with Tom until we’ve had a few appointments and significant damage can be done in that amount of time. I wish you well on your journey to healing. Feel free to drop by anytime. Sheri

  2. cindy knoke says:

    Disturbing, upsetting, just to read. Living it must be just hell for you and Tom. I am so sorry. Thoughts, prayers and love~

    • Cindy, Thank you for stopping by to read with me. I sincerely appreciate your taking the time out of your busy schedule to leave a comment. This past year has been the hardest of my life. Tom’s suffering has never let up and all of the compounded problems are the fault of medical providers, hospitals and their staffs. It seems impossible we’ve been in this loop since January 2016 and more and more ailments are added with each medical visit.

  3. mihrank says:

    Hi Sheri – wow – this is such important, detailed and valuable. This is a great outcome and educational information you did share.

    • Thank you so much, my friend. Some of what I’m learning on this difficult journey, I want to ensure none of my blogging friends or anyone else never has to go through it if I can help it. I know full well, you know how to speak up when you are being wronged, but the medical jungle we are all dealing with today can be a strange bedfellow when we are being bullied by the establishment.
      I wish you and your family a wonderful holiday season ahead. Thank you for your friendship during this blessed season and always.

  4. A lot of people work in medical just for the money, and a lot do it because they actually want to help people so it’s a hit and miss kind of thing. The hospital in my hometown is well known for having people re-admitted due to infections. Happened to everyone I know who had surgery there. I wish you guys the best and hope you get better treatment

    • Lindsey – Thank you for stopping in to read with me. I agree that some individuals are truly dedicated and we are fortunate to have a few of those on Tom’s medical team. I’ve never been able to come up with a good reason why people that only want the pay chose medicine. There’re are so many other ways to make good money plus the hours are a lot better.

  5. AinaBalagtas says:

    Hi Sheri! Thanks for sharing to us your sentiments! I sincerely appreciate your courage and your heart in fighting for your Prince Charming’s life. Thank you for holding on.

    Re the hospital, it’s a shame for an institution who is supposed to uphold life and yet give up life. I think that’s the worst anyone can do to another human being. To oppress someone’s hope and faith, that’s an abomination!

    I wish to hug you and Tom. I pray for you both.

    • Thank you, Aina. I sit her listening to a soundtrack Tom and I put together of some of our favorite songs years ago and it reminds me so much of your blog, life is so much about the music we surround ourselves with. Thank you for reading with me and for leaving a comment.

  6. Herman says:

    Hi Sheri. So sorry to read what happened. The email notifications from WordPress don’t seem to be working anymore so I missed this post.
    Wishing you and Tom all the best and lots of strength.

  7. Dear Sheri,
    I am shaking from anger and crying from our loss of humanity, all at the same time. Holding you both so very close, in my heart and in my prayers. Oh, God Sheri, I am so sorry.

    • Thank you so much for stopping in to read with me and for leaving a comment. It’s now the hardest of times and I often feel as though the next shoe may drop while trying to remember that my glass remains half full. For now, Tom is home and in my 24/7 care. I don’t know how long I can manage at this pace but I know he’s getting good care. We do now have 3 official superstar docs on our team. Now, I’m working on making sure we have a different hospital for when Tom has to return to one for treatment.
      One of our doctors canceled his vacation and sent his family on to Europe without him so that he could remain here for this critical month to care for Tom. As I said, this doctor is a SUPERSTAR and he’s introduced us to another superstar and we already had one in our pocket.
      Take care my friend and it’s never too early to put your health care team in place. With love, Sheri.

      • Marie Abanga says:

        Hi Sheri, it’s been such a long while. Thanks for sharing your anguish… That’s all I can muster to write…
        Wow, I never heard of a doctor cancel his vacation … Ain’t he one of those Guardien Angels we pray for…
        My prayers Sheri… My prayers

        • Yes, Dr. Homsi is indeed an angel among us. Thank you for stopping by. I’m more convinced than ever that Tom’s many medical issues are a direct result of diagnostic overshadowing than any other cause. His physical ailments were not taken seriously for so long and now his entire body is shuting down. It simply can’t take any more abuse. Thank you for stopping by.

          • Marie Abanga says:

            Sheri, I tried placing a surprise call to your cell yesterday, but my timing may not have been the best. Hope to try again when you tell me a good time… How about that?

            • Marie – That would have been wonderful. I’m ‘normally’ available around 6:00 central time – if I’m not driving home from doctor’s appointments. I hope you have the correct number. 501-513-7130. Are you by any chance in the US now?

              • Marie Abanga says:

                Sheri I have the correct number cause I got it from a comment you left on you blog… No am not in the US, back home in Cameroon actually… please, will that 6 be am or pm? All the best

                • Marie – 6 p.m. my time. If you give me a time frame that works for you as I don’t know the time difference, I’ll see what I can work with. Once I have Tom in bed, I can be relatively flexible. If you have a preferred window of time and a couple of days you prefer, I can see how I can work with my schedule. After all, you are the one making the call. Somedays I have more free time than others. If it’s a day like yesterday when Tom had 5 medical appointments; we were gone from the house and in appointments from 8:00 am and because I do all the driving, it was after 9pm before we arrived home. I always have my cell with me but when I’m with Tom at appointments I have to tend to Tom and listen to what doctors are telling me. I have faith we’ll work something out. God bless and may you season be gentle and bright.

  8. PTcontender says:

    I think it really depends on the person. Some nurses are there for a paycheck. Some nurses are there because they absolutely love nursing and helping people and are actually energized by their work. I definitely don’t think 12 hour shifts should be required. They are not for everyone. And if a nurse wants to do a 12 hour shift he/she should have already proven responsible, quality work. If they can’t perform at a high level during the 12 hour shift they should immediately go back to 8. It really comes down to the leader to figure out who is better for 12, and who is better for 8 (or maybe even less). That’s how I would do it. Thanks for asking me 🙂

    • Thanks for a well-thought-out answer. Many of us that have been around a long time and have a tendency to think everyone has to do 8 hours or everyone has to do 12 hours but your suggestion makes better sense and sounds as though it would make for happier employees. It’s been my experience that happy employees are most often good workers and produce quality work. Some bosses wouldn’t want multiple employees working different shifts but I see that as a problem that belongs to management. When I moved into management and leadership positions, it came with a lot of tasks that I honestly didn’t like while at the same time affording me the freedom to pursue issues important to what I wanted to contribute in my field. Thank you for answering.

  9. Sheri, I am sending love, prayers and good karma. I believe every word that you have written. Medical care is a nightmare straight from hell. No one seems to give a damn and there is every now and then, a rare one that does. I have experienced excellent care for my son while he was in ICU and the hospital made him a charity case. But I stayed on top of it all.

    Now my sis is in a nursing care home ( minor stroke that prevents her from walking, despite PT). The staff is less than desirable and this home is supposed to be one of the best. I have seen a total of one RN and the rest are LVNs and meds are usually dispensed by a medication aide who does not know squat. I have gone to the desk to ask about meds and no one can give a straight answer. They tell me to call the PA but then they don’t have his number. The aids throw her soiled PJs on the closet floor and I usually get her fresh water each evening. I hate the place. OId age is no picnic and my sis is mentally very alert and has an excellent memory. She is not happy and is often grouchy with me when I visit.

    When all is said and done it could be worse. But I fail to find any humor in illness or injuries now days. Nursing care and the docs are not what they used to be.

    Stay strong and God bless you and Tom.

    Love and good karma coming your way.

    Yvonne

    • Yvonne, Thank you for your steadfast loyalty and support. It means the world to me when I can’t seem to feel the earth under my feet because I’m so angry. The media talks about burnout for nurses but what about the caregiver that’s with the patient 24/7? When hospitals went to 12-hour shifts I started seeing a real decline in the quality of care. The staff tells me they like it because they get more days off in a row but I’m convinced the care provided patients has sunk to an all time low.
      We now have a shortage of nurses as they all want to leave the ‘nursing’ environment and become legal consultants! Isn’t that a hoot? I could easily write a legal brief about each of Tom’s encounters and it would require multiple reams of paper.
      I’m thrilled the hospital helped your son out financially. It gives me hope that some still care. At the same time, I feel terrible for your sister and for you that she’s in a nursing home. I shudder at the thought. Be well, my friend. Bailey and I send love and prayers your way. With love, Sheri

      • Thank you, Sheri I am sorry that I have yet to reply to all the comments on my last post. I don’t have the energy nor the motivation to go back over there but I will one day. I am more interested in commenting on the blogs that I care about. I feel first things first or how ever it goes. Take good care my friend. You are in my thoughts and prayers too. Hug Bailey and give Tom extra kisses.

        Yvonne

        • Yvonne – My dear friend, We do what we can when we are able. I don’t get to all comments when we want to and I certainly don’t get to all blogs when I want to.
          I promised you some pictures of Bailey and then I was so upset when I posted this blog I couldn’t put his pictures of Bailey in the same blog. Yvonne, I’m so glad in our discussion last winter you said you thought another dog might be good for me after the loss of Prissy and Scooter. Bailey is the light of my day and he’s a great Doctor Dog. He keeps all of his priorities absolutely correct. Love and prayers to you my friend. Sheri

  10. Dear Sheri, I may have shared the Scriptures and the Song below with you before, if so please accept them again from God’s heart of Love for you and Tom.

    If you think your mad at this injustice, God is very angry when He witnesses worldly things come before Love and Compassion. This Hospital and others who do the same will be held accountable unless those responsible for their neglect and lack of care, come to heart repentance and for this we will Pray.

    Isaiah 43:1-3 – Do not be afraid for I have ransomed you I have called you by name you are mine. When you go through deep waters and great trouble I will be with you. When you go through rivers of difficulty you will not drown! When you walk through the fire of oppression you will not be burned up the flames will not consume you. For I am the LORD, your God, the Holy One of Israel, your Saviour.”

    Jeremiah 29 :11-12 For I know the thoughts that I think toward you, says the LORD, thoughts of Peace and not of evil, to give you a Future and a Hope.

    Lamentations 3: 33 For God doth not afflict willingly nor grieve the Children of Men.

    Christian Love Always – Anne.

    • Anne, my dear friend. How could I have missed your comment? I’d planned to get back to you sooner once I knew which blog we were talking about. I’d sent you the prior message from my cell phone but always want to read an entry from you on my PC screen as know I’m going to find luscious gifts heaven sent. “You Raise Me Up” is one of my all-time favorite hymns and I often refer to the song as an anthem. Thank you for calling my attention to the fact that I hadn’t commented on your comment. I’m honored to call you my Christian Friend and would never slight you on purpose. I take great strength in your blogs. When I fall and stumble, I know I can go back and read your words and find comfort. I know I’m not alone and Jesus walks with me every step I take.
      Tom and I are in a dangerous place for him and I pray God’s will is to keep him as pain-free as possible. It seems we have so many doctor appointments I have little time to set aside time to be just me but I’m working on that also. Anne, know that I’m always here and if I ever miss a comment of your again, please don’t hesitate to let me know. The kindness and comfort you extend are unmeasurable. With love and warm hugs. Sheri

      • Thank you Sheri for your warm and Loving heart encouragement, you are very special to me too, I often think about you and the Love you offer to others, it’s a wonderful example to follow, you give all without seeking reward because you Care deeply.

        Blessing dear friend – Anne.

        • Anne – I discovered I have 2 comments to you. They simply don’t appear on the blog responses in the order that I posted them. That often happens when I’m replying directly on wordpress. Another issue I have is that the person who comments first, their reply often goes somewhere in the middle of all my responses. It’s enough to make a person a little crazed sometimes. Love to you and yours as we enter into this blessed season.

          • I know what you mean Sheri, it can be very frustrating, someone it seems who works for WordPress deleted my About, I had to write it all again, the first one I did was 5 years ago. When I pressed Preview it showed the WordPress Childish Peep a Boo sign before my About disappeared, so I know it was not a Hacker, which means it had to be someone who had access to WordPress control settings on my Blog.

            Let’s go back to Smoke Signals!

            Blessing – Anne.

  11. The whole thing just rips at me heart…when did we as a country lose site of simple human dignity and compassion? Our health care system has deteriorated to that of a third world country…..my heart goes out to you and Tom…you are in my prayers!!

    • Thank you, Anne. I love the song, “You Raise Me Up.” I appreciate your including it in your message along with the uplifting verses. It made me stop and think. The faith-based hospital Tom has been in does not have Bible Scripture written on the walls in soft calligraphy as many hospitals do. There are no soothing murals. It’s all the same color of mousey green everywhere you look.
      Isaiah 43:1-3 is a verse I hold dear to my heart and hang on to when things get tough and give thanksgiving for when I think I can’t take it anymore. Jeremiah 29:11-12 I haven’t turned to as often – but thanks to you, I will now. Lamentations 3:33 is new to me and you, my Christian friend, have added it to my arsenal. Thank you, Anne, for your Christian love and ministery. Your continuing love and support are far superior to the few visits we receive from a hospital chaplain. We’ve had zero visits on the last 2 hospital stays and I find this inexcusable.

    • Thank you, Kirt. Hello,’our’ photography friend. Tom can sometimes find pain free moments when he visits your photography. He’ll look for hours at a time. His fingers aren’t working well but oh the compliments he gives. He especially loved the cityscapes last night and then, of course, I had to take him for another visit to the hot air balloons and the black and white of the Barnes and then lost in gardens and other locations. We enjoy your work so much. Maybe someday we can actually have a piece of your work hanging in our home. It will be dictated by where we live, I’m sure. Keep up the good work were Tom’s last whisper before he fell off to sleep. You definitely have a couple loyal fans in us. Sheri

  12. Sheri–You NAILED it. I hope you emailed a link to this post to the “villains” at the hospital and to the AMA! They need to read this!

    • John, my dear friend, never fear, this Kansas farm girl is making her rounds of the AMA, local news journalist looking for a hot new story to break out in the local channels they can go nationwide with, as well as Health and Human Services. There’s so much more detail than I’ve written down here that happened to us here and with additional hospitalizations. I’m holding onto Isaiah 43:1-3 this morning. I find great comfort in that particular voice.
      Thanks for stopping in to read with me and commenting. You’ll never know how much it means to me to know you are taking time from your busy schedule to read with me and leave a comment. Thank you, John.

  13. Sheri, I send you my love and keep you both in my prayers.

  14. Alexa says:

    I witnessed this first hand too with my father.. and countless others who have shared their own stories. I hope that you are continuing to provide care for yourself in the process too. ♥

    • Hi Alexa, Often I find myself wanting to jump into one of your fantasy pictures and make myself right at home. They set my mind to free thinking and at times like this, that’s exactly what I need.
      I’m so sorry you went through this with your father. It’s demeaning and unnecessary. It’s bad enough to watch the individuals we love most in the world to suffer and then have the medical establishment treat us as if we are in the way and couldn’t possibly know anything.
      I try to find little things that bring joy to myself. It might be a favorite cut flower for my desk or bedside lamp, a candle of which I like the fragrance, wearing a pair of earrings Tom made for me, but I do search for something each day to hold on to and then I feel I can face one more day of this never ending struggle.
      Thank you for taking the time to read with me and as always, for commenting.

      • Alexa says:

        I’m so glad to hear that each day you find little things to bring you joy. I am learning to do the same, and no longer feeling guilty when I think only of myself. You are inspiration to me whenever I read your stories.. and so glad that my pictures bring you a little respite.. which is what they provide for me.. a home away from the reality of life hardest moments. Hugs, Alexa

        • Alexa – Thank you for your assistance in that endeavor. I can get lost in many of your settings. I’m a romantic at heart and share many of your creations with Tom. His comment, “That girl has an eye for design!” Now, if you are a famous designer and I just don’t know it, please don’t laugh me off my own blog page! Love, Sheri

          • Alexa says:

            You made my day!! I have an artistic nature.. paint in real life even though it’s been ages. I have something in common with you. I worked for the government for over 20 years.. bittersweet at the end.. but I don’t regret the work and the service of helping others. Take care of yourself and Tom, big hugs Alexa.

  15. Gail Johnson says:

    So sorry to hear of this. Praying for you.

  16. PTcontender says:

    What a nightmare…Thank you for sharing. Praying for you two

    • Hello and how nice to see you again. I’ve had my hands full but promise I’ll get back to your blog soon. I do have something I’d like to run past you, however. What’s your opinion of medical personnel working 12-hour shifts instead of 8-hour shifts? I know the nurses all seem to like it but on the flip side, I see so much sloppy work. By the middle of the 2nd, 12-hour shift standards seem to begin slipping severely and they seem to spend a lot of time hovering around the nursing station and not caring for patients. Tired is tired but they agreed they could do the same quality of work and clearly, they are not.
      I value your opinion and fresh take on this matter. Sheri

  17. I don’t ‘like’ this Sheri, not at all. But I appreciate you shining a light on these atrocities and sharing your’s and Tom’s horrible experience. Sadly, you are not alone. I can’t begin to tell you how many times we, as APS, were called upon because a hospital discharged a critically ill, or incapacitated person to home. It is a horrific situation. One situation, the hospital themselves called because they discharged a person to home who did not have the care they needed. Our APS worker literally stood up, walked across the street to the apartment complex the person had just been sent home to, to find a dying human being. Shipped home while they were actively dying. THe squad was called back, after they had deposited this person into their apartment and left, but they died before they could go back. There is a lot of shame in this world.

    Thank God Tom has you. I’m sorry the two of you go through this.

    • Colleen, You probably see as many tragedies in your line of work as I do in my care for Tom. Of course, during my career, I saw more things than I ever wanted to admit were going on and in big name institutions. It’s never just the little community hospitals that can’t perform. I sometimes wonder if they don’t try harder. It’s a shame the docs won’t go there.
      There’s not a doubt in my mind that Tom would have died within the first 2-3 hours he was home if I hadn’t been here. I’ve learned a lot since this hospitalization and I plan to blog about it. I want others to know what their rights are.
      I’ve convinced my former deputy to co-author a piece of legislation with me regarding Medicare. I’ll be asking for signatures once we get that far. It will be a good long time but you got me to thinking, no one else is going to do it, and I will have to find the time, but it has to be done before 20% or more of the population is killed off.

      • I’m amazed by you. Your heart. Your brain. I wouldn’t have a clue on the ‘how’s’ of all you do. Thank you for teaching us.

        And you’re right, the things I’ve seen have been horrible. And so inconsistent that we never understood why some were getting exactly the help and care they needed, while others floundered and went without in the exact same system.

        • Colleen – I pray the time never comes for you when you have to search out these laws and push yourself forward to demand patient rights, but if it ever does, I now have a personal lot of information. I hope to share much of it over my next year of blogging but in the meantime, should you or anyone you know need the information I’ve learned by the school of hard knocks, call me at 501-513-7130 (cell). I try to keep up with my e-mail but I’ll admit I lag behind much of the time. Patients and their families have rights but we have to know the best time of when to exercise those rights. Sheri

          • Thank you Sheri, this is extremely kind and generous of you. I know people who have struggled, but because of the smaller community, we usually found a way to get the help. But it shouldn’t be like this.

  18. Reading this makes me so mad…and I am already so angry about the state of our medical care in this country. I am so sorry for what you and Tom have had to endure. I have had some of that same awful treatment these past 3 years of illness…just a couple of weeks ago with a new doctor. What was the point?? I want to jump atop a tall building and start bellowing at the top of my lungs…but unfortunately, no medical personnel would be listening.

    Just know there are hearts reaching out to you and ears listening to your story. It helps to share…so I am glad that you do. Sending you Love, Light, and Peace. Blessings!

    • Is it okay if I call you, Mar? I like to address my replies to a given name. Perhaps I’m asking too much and just tell me to butt out and I won’t be offended. I hear you about being mad, mad, mad and mad some more. I’ve been reading about European medical care. I’m not sure what country you live in but one of my husband’s best doctors taught for awhile in London along with treating patients. He said he had to leave because patients weren’t referred to him before they died! He’s now the best doc we have on Tom’s team. He even sent his family ahead of him on vacation and stayed back for a month to make sure Tom get through this month of terribly close calls. This doc is definitely on our keeper list. He’s also helping me with bringing a new team of physicians together to treat Tom on a continuing basis.

      Try to stay well, although often not easy. Know my blessing and good thoughts are coming your way. I know all too well that we are not the only couple that’s been thrown to the wolves! Stay strong my friend. Sheri

      • Thank you Sher1! And absolutely ok to call me Mar…my full name is Marianne.I am so very glad to hear you have a wonderful doctor on the team now and he will see to the care properly. That is not easy, as you know, to find these days. I am doing much better, so no worries there, but I still struggle with some things and cannot find a doctor who will/can “get it” and help. It is frustrating. But, I have a great deal to be thankful for too, and focus on that. My very best wishes and prayers to you and Tom. You stay strong too Dear Sheri. And when you can’t…let it out. Love and Blessings!

        • Dear Marianne – Thank you for your reply. Getting great doctors in our corner is an all time best practice for a patient and their advocates. There’s nothing stronger. Building your medical team is probably the best thing you can do for yourself. Forgive me, but I believe you may be in Europe and the rules are going to be a bit different. I have started researching the methods of how to move to the head of the line there also. It’s almost impossible, I know.
          If there’s any way I can help you, please let me know and I’ll try to figure out something. I’m a firm believer in that all problems can be solved and all patients deserve to be treated with dignity and respect. Sheri

          • I so agree Sheri! FYI – I am not in Europe, I am here in the states…and thank you so much for your offer of help. I am doing ok now, and you have enough on your hands, but I send you waves of appreciation and gratitude for reaching out. I am looking for a new doctor, but I haven’t found what I need yet. Meantime, I am hanging in there. Please know I am here for you too, even if it is just to talk or vent or get some spiritual comfort. Know I send you Love and Peace and Blessings!

  19. So sorry to hear about the difficulties you are facing. I hope that the ride gets a little smoother. Hugs.

    • Dear Silently – Thank you for taking the time to read with me and leave a comment. It means a lot to me. It often seems the mountains are steeper and as we make the summit and look over, we have yet another steeper mountain. I have hope that if I just search long enough and work hard enough, I’ll find a medical team who can put all the puzzles of Tom’s mysterious illnesses together and we’ll have some semblance of a life once again.

  20. Jane Sadek says:

    WOW – I knew you were going through some tough times. This really paints the picture – and so much of what you said matches my experiences as well. I was appalled at some of the ‘social workers’ I dealt with over my 5 year, 3 patient, 2 city ordeal. Most of the time I’m thinking, “Are you kidding?”, but I didn’t have any credentials to show. Some of my favorite moments? They were going to send my Mom home from the emergency room with a broken arm. No big deal you say. They couldn’t put her arm in a cast and it was the arm she used to maneuver her cane. How exactly was she even supposed to go to the bathroom if she couldn’t even stand up? The list goes on, but you’ve lived the picture!

    • Oh, Jane, I know exactly what you mean. This has become a living nightmare all it’s own. It lifts my spirits to see you here and that you took the time to read with me and leave a comment. I thought of you as I wrote this blog knowing you had already been down the caregiver role.
      When Tom broke his arm in 3 places and they elected not to cast it, they sent him home with no wheelchair, yet how was he to use his walker. Same as your mother, he had no mobility. It meant a transport wheelchair was absolutely necessary.
      We’ve had so many nightmares since then it seems nothing will ever be the same. In a way, it was a miracle that he broke his arm as that’s what led to the discovery his pace maker was dead, that he had histoplasmosis and a trauma surgeon became available to repair his arm with 37 screws, 4 bolts, and a rod. Otherwise, he would never have been able to use it. Sending hugs.

      • Jane Sadek says:

        I fought like a tiger. It was the middle of the night and they were insisting she go home, but I wasn’t budging. She ended up going to rehab, which luckily was a blessing on many fronts. They not only saw that she got to the bathroom and was fed, they exercised her to make her stronger overall.

        • Jane – One of the first things I learned is the hospital cannot make a patient go home if they are going to be homeless. I know that sounds cruel and unusual but that paid dividends for Tom’s hospitalization of Oct. 28. I flat out told the administrator I was no going to administer the daily infusion treatment which could kill Tom within the first 15 minutes of entering Tom’s port. The hospital cannot dismiss a person if they are going to be homeless! Isn’t that a nifty little clause. I told them I had no one to leave Tom with at home and I did have a critical family member in another state. Tom had already been receiving the infusion treatment in the hospital and once again I had to look up the regulations but sure enough, the IV Home Specialist Team responsible for the medication had to not only find someone to come to the home to give Tom the IV 4 hour drip but to stay with him the entire time. It just so happened I was home for each infusion but always kept a suitcase packed by the back door. I was adamant about not giving Tom the infusions myself. I was not going to be the one that killed him! I fought like a tiger on this one. Remember, they cannot send a patient home alone or they cannot discharge the patient if they will be homeless and there are many degrees of homelessness! Love, Sheri

  21. GP Cox says:

    Tom is a tough one, with an equally tough wife!! Take care!

    • Thank you, G.P. We received the card and Tom was moved that one of my blogging friends would actually send ‘him’ a get well note. You definitely made a home run! Yesterday was his last day of infusion here at home and they took out his port. Today is a rough one for him but at least he’s in his own bed and I can tend to his needs.
      Dr. Bailey is also on duty.
      I thought I was pretty much caught up on everything – and then – well, my world fell apart.

      • GP Cox says:

        Take a deep breath, Sheri. You can’t do it all, so don’t even try. Put your feet up a few minutes, then backup and re-group!!
        I’m thrilled that Tom liked the card – and i doubt it will be the last.

        • G.P., You know how it is. Just when I get comfy, Tom or Bailey have a pressing need. I’m learning sometimes I can get a nap by lying down next to Tom and that way Bailey thinks he’s guarding us both. Poor little guy, between being doctor dog and being in charge of what I do, he falls out at night the same as I do. I told Bailey I might have to fire him as my office assistant if he doesn’t spend more time in here but I couldn’t ask for a better doctor dog.
          Tom finished his last infusion on Friday. It was damaging his kidneys. Hopefully, this coming week will be a little easier on us. The temperatures have dipped and I must get the rest of my garden planted if I want my spring bulbs to bloom. Oh, me.
          Can’t remember if I told you my new favorite go to for a mere 90 calories is 2 shots of espresso and 8 oz ice cold milk poured over ice. Of course, that gives me about 4 espressos a day! Good thing coffee doesn’t give me a buzz or maybe it should!
          I also bought myself an egg cooker for cheap on Amazon. One of the best investments I’ve ever made!

          • GP Cox says:

            Glad to hear Bailey is on duty! I don’t think I eat enough eggs for an egg cooker – I like them, don’t get me wrong – but, if I don’t have my tasteless, high-fiber, low-calories tree twigs for breakfast I might have a problem the following morning. WOW! What a thing to talk about.
            Please feel free to delete this comment!!!!!
            I hope Tom perks up now that the infusions are done – please give him my best!!

  22. Sheri
    so sorry to hear of your pllight. My God! Prayers for you and Tom. My heart cries out for you.

    Jeanne

    • Jeanne, Hello dear friend and how are you? I’ve been thinking of you lately and praying you are well. I don’t get to Facebook as often as I used to and don’t know what’s going on with my friends. I never seem to find enough hours in the day.
      Always, thank you for the continued prayers. I know it is God’s divine power and intervention that allows Tom and me to carry on and overcome the miserable state of health affairs that we find ourselves in. With loads of love, Sheri

  23. Hi Sheri, I haven’t kept up with your blog this year since I’ve started classes and it’s all I can do to keep up with them. When I read this post, I thought you were writing about the past when Tom first came home, but as I kept reading, it was this year?! OMG you both already have been through so much and then for this to happen, I have no words to express how sorry I am to hear it. Sheri, your devotion and strength are admirable. Sending you both love and blessings.

    • Oh, how I understand what you mean about busy. The way to tell when I’m writing about the past, you’ll see a journal logo with a picture at the top of the post and give a date to establish when the event takes place. Otherwise, I attempt to ground the blog in the dates the event is actually taking place.
      We moved from mental health to severe physical health problems somewhere in 2007 and maybe a little earlier. It’s hard to put specific dates on these events.
      Most of the medical events I write about now occur in 2016 and ‘Medical 2016’ will be one of my sub-headings at the top of the blog.
      Obtaining the best medical care for Tom has been and continues to be one of my biggest challenges. He’s a very sick man and I’ll admit I’m afraid for both of us.
      Thank you for checking in. It means a lot to me. ‘Ava & Elliot’ have been on the back burner for 3 or 4 years. I can’t make myself write Part 3. Sheri

  24. amras888 says:

    So painful a story to read, and so very saddening. Yet, despite overwhelming adversity, your inner strength is evident; and it underlines every word you write. You can be assured of my prayers for yourself and Tom.

    • Thank you so much for stopping in to read with me and leave a comment. Your prayers are appreciated. I know what anguish it is for you to post and it’s with great thanksgiving that I say thank you, my friend. My prayers are returning to you, as well.

  25. inesephoto says:

    Sheri, my prayers are always with both of you. Love ❤

    • Thank you, Inese. Tom and I spent some time in the hospital viewing your blog and magnificent photos. It’s one of the activities we can do together and Tom and I both love fine photography such as yours. Forgive me for not taking the time to not stop and comment on each one. I let Tom operate the keystrokes at random and I even saw some I’d missed along the way. Tom was very complimentary of your work. Sheri

      • inesephoto says:

        Sheri, thank you so much for your kind words. You always think of others first. I am happy that my pictures bring a smile on your and Tom’s face, and it is all I need 🙂 xxxx

  26. Sheri, it seems your troubles will never end. I feel angry for you and Tom, but so sad too that people aren’t given the help they need.

    • Andrea – Thank you for stopping by. I sincerely appreciate your presence. Tom is a very sick man and when others treat him with anything but grace and compassion, it’s enough to make me tear my hair out by the roots. He’s suffered enough and manhandling him from one place to another is simply more than I can bear to watch – but I have no choice. Just this past week, I watched this same hospital dismiss a gentleman in his late 80s or early 90s to only be dropped by 2 orderlies as he was being put in a vehicle to go home. The family had no choice but to drive around to the emergency room to have him checked out and sure enough, he had to be admitted again for 2 fractured legs!

  27. I am so thankful my health is relatively good. I guess the day I must enter a hospital as a Medicare patient will change all of that. this is likely the reason I am not interested in a slew of surgeries that ‘might’ make my RA better. I think it could end up worse.

    • Jacqui – I agree with you 100%. It was from my own surgery in 2012 that my blog ‘I Hate Medicare’ was born. That surgery led to another surgery that was also botched and here I am with more damage than I care to admit. I’m not about to let them go after my RA either. I’ll live with it ‘Thank You Very Much.’ I also don’t want any of their biologics. Biologics is what tore down Tom’s immune system and then here came the histoplasmosis and all the other infectious diseases. Tom was weak to begin with but no drug is worth destroying your immune system — then you have nothing left to work with. He’d had 3 treatments and then death came knocking at his door.
      Thank you for reading with me, Jacqui, and I always appreciate your taking the time to comment.

  28. ksbeth says:

    sheri – this is nothing less than inhumane treatment. i think about both of you and wonder how you both continue to hang on in spite of everything you have to go through. i am so sorry for this.

    • Good morning, Beth. Thank you for reading with me and leaving a comment. We hang on for each other as a result of our unconditional love for each other. I won’t let go of my love for Tom simply because a political party decided it was okay to tear up our healthcare plan I worked so hard to put into place. Had Obamacare never come along, I could have placed Tom in different hospitals with a different level of care and we wouldn’t be going through all of this.
      I well understand there are those who need what Obamacare has to offer or they have no insurance at all but that doesn’t mean the medical care for those of us who gave up on other things we would have liked to have had in our lives but paid high premiums instead in order not to have to worry about Medicare when we reached age 65.

  29. With every blog post you write, my disbelief grows by leaps and bounds. I can’t comprehend something like this happening here in the U.S. And yet it does, on a daily basis. I have no words. I only hope things get better for Tom and for you. Try your best to take care of yourself, Sheri. And give your little pupster an extra hug.

    • Hello, Patricia. I’d much rather be sitting down to a latte at your favorite coffee bar than writing blogs but let’s face it, blogging is our reality at the present time. Medical care in hospitals is horrific and if at all possible, stay away from them. If a doc presents to me that I could have life improvement by having such and such a surgery, I simply tell him no. I’ll keep my body just the way it is.
      Speaking of the pupster, he still wants to be rocked and loved first thing each morning (6:30 is a perfect time, according to him). Then he wants about 30 minutes office time and after that, well he’s doctor dog the remainder of the day.
      Tom has had IV infusion all week that’s made him really sick and Bailey has stuck oh so close. He’s turned into #1Doctor Dog on Duty.
      Thanks for checking in Patricia and always for reading with me and leaving a comment. You are the best when it comes to blogging friends and regular friends as well.

  30. Dear Sheri, I’m so sorry you and Tom went through this.
    Hugs ~ Wendy

    • Hello, Wendy – Thank you for dropping by and leaving a heartfelt comment. I appreciate your time more than I can express. We all have to campaign our way through this horrible experience and learn from what’s happened to our world of competent medical care. Thank you for your well wishes. Sheri

    • Thank you for taking the time to read with me and leave a comment, Howard. It always means a lot to both Tom and me when we receive comments on blogs I write wherein individuals respond to medical care we know must be changed. The things we experienced, witnessed and saw are worse than what I used to see in commercial feed lots when my Dad would take beef steers to feedlots for selling to slaughterhouses. Today’s hospitals are offering inhumane treatment to patients on a regular basis. Thank you for commenting, It’s deeply appreciated. Love, Sheri

  31. gdwest123 says:

    Sherrie I am so so sorry. I’m English and I had no idea what the American system is like and what you must have gone through is heartbreaking. To think that Tom was suffering so much and that he was treated so badly, as you were too, is worse than terrible. I will remember you both in my prayers, and wishing you well and telling you how you have clarified how sad and moving your predicament is. Neither you nor Tom deserve such terrible treatment. All my love and best wishes.

    • Thank you, G.D., It always helps to know how many we have behind us hoping and wishing us the best with this medical breakdown of ours. Would you believe the best doctor we have at the present time is one that came to us by way of Damascus thru England where he was at University teaching and practicing and then immigrated on to the U.S. He’s a brilliant man and one of my all time favorite doctors for Tom? He does not give up! Dr. Homsi was to be on vacation this month and he sent his family on to Europe and he stayed here to be with Tom through this crisis. I call that nothing short of a miracle.
      Thank you for taking the time to comment and I always appreciate the time you take to read with me. With love, Sheri

  32. willowdot21 says:

    I wish things were better, sadly it can also be as bad over here on the national health. Thinking of you both ❤

    • Thank you, my sweet friend. One of Tom’s doctors [the hero of the entire team] graduated from the University of Damascus then taught and practiced medicine in London for a few years. I asked him why he chose America for his place to practice Medicine and he said he wanted his patients to reach him instead of being placed on a waiting list and having them be dead before they ever reach his clinic. He is Tom’s A# doctor at the present time. He practices aggressive medicine and was scheduled to be on vacation this month and he sent his family on to Europe for vacation and he stayed behind to care for Tom. That’s what I call dedication!
      Medical care is a scary proposition anywhere but this one doctor has been helping me set up an entirely new team of doctors for Tom and for that I’ll be forever grateful. He knows more about pulmonary medicine and many other diseases than any doctor we’ve ever encountered before.
      Thank you for stopping in to read with me. I sincerely appreciate your taking the time to read with me and above all, time out of your busy schedule to leave a comment. Love to you and oh those wonderful Sun afternoon coffee clutches. With love and thanksgiving for your friendship. Sheri

  33. Patty B says:

    My heart aches with yours – no one should have to go through what you and Tom had to go through all these years and now this. May God walk with you – picking you up when you stumble over with grief and pain and carry you and Tom in His loving arms. God weeps with you and shares your pain – lean on Him now dear friend. And know your friends hold you and Tom in our hearts.

    • Patty – Thank you for this loving message. God has indeed been my ‘go to guy.’ When I stumble and fall [and it’s more often than even I like to admit] HE picks me up and allows me a grace period to dust myself off before I have a go at it all over again.
      I’m so thankful you came into my life. Through you and your gentle reminders, I know the peace I feel from time to time for Tom and I – well – it’s coming directly from God’s Grace. I simply have to stop and listen.
      Tom is very ill and my heart is breaking and I am afraid. I turn my fears to God and pray. I have a hard time watching Tom suffer so. This man I love has suffered so much and when is enough going to be enough.
      Bailey has glued himself to Tom’s side and refuses to budge. I take him out and have his dinner waiting for him but other than that, he won’t leave Tom’s side. Thank you, my friend, for your encouragement. With love and prayers, Sheri

      • Patty B says:

        Sherri, I am glad you turn to God. He will remove your fears and understands your heartache. Isn’t it amazing how dogs know? They are indeed our special friends sent by God to care for us. Please email me any time Sherri. I am always here for you… you are in my heart and in my prayers….

  34. Sheri, it has been a long time since I have talked with you. I let my blog side for a time. Life happens that way sometimes. I was sad to read what has happened to Tom and you. However, I am not surprised. It seems that these days, the way insurance is working (or NOT working) these days, is to get you in and out as fast as possible, no matter your condition. It is a disgrace the way these things happen and you and your love have just experienced this despicable system. You may remember that I had a double lung transplant 11 yrs ago, but I’m not holding my breath thinking that my healthcare now that I am 65 will be any better. You know, when you reach a certain age, it seems you get thrown out “to die” to “save money”. What Bull. Life doesn’t matter to these companies at all, it’s all about the bottom line.

    I am so sorry to hear what you have been through. If you want to contact me beyond WordPress my email is: s.ozanich@outlook.com

    God Bless you and Tom mightily!
    SandyO

    • Sandy, How nice to see you again and thank you for stopping by and commenting. I understand what you mean about not blogging much for a time. I’ve not posted much this year because I spend most of my time with Tom. It seems each stage of caregiving becomes more time-consuming but I rejoice in the fact that I can care for Tom and not some uncaring individual.
      You are correct in that health care is all about the all mighty dollar and not much else. Baptist Health was all about wringing every dollar possible out of our insurance before they kicked Tom out the door. For a faith-based organization, they do not know how to act like one.
      Medicare is changing fast. My former deputy and I hope to work on a piece of Medicare legislation this coming year.
      Stay well, Sandy. I’ve jotted down your e-mail. I don’t have much free time but will see how it goes. With love and prayers. Sheri

  35. Terry says:

    My heart is breaking as I read this. I know what you say is true; I have seen it happen before. The game of life has become all about the dollar instead of saving the life. I am so, so sorry my dear friend. I wish there was something I could do except for sending you a cyber hug. Always here for you. Love and hugs

    • Terry – Thank you, my dear friend, for stopping in to read with me and taking the time to comment. You are so right – medical care is all about the dollar and how much the medical establishment can wring out of our insurance companies. I’m disgusted by what I see at every turn of our journey. We have to hang together. I’ve had one major victory and I’ll be talking about that in a later blog. Sheri

  36. tellio says:

    We are all in your debt for your honesty. We are forewarned and forearmed. Your strength is now our strength. Thank you so much for this.

    • Thank you so much for reading with me and for taking the time to comment. Tom’s subsequent hospitalization was just as bad. I’m in the process of finding a new team of doctors in order that we don’t have to keep repeating this process.

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