THE WRONGS OF PSYCHIATRIC CARE – Part 1 of 2

The Wrongs of Psychiatric Care – Part 1 of 2
A Blind Date With My Husband
By – Sheri De Grom

How I’d wanted to go on a date night with my husband. I just hadn’t thought it would turn out to be a blind date. After all, we’d just marked our nineteenth wedding anniversary.

My husband, Tom, had been in the hospital for two weeks of what would turn into an additional five month stay. My blog, In The Name of Modern Medicine describes the trauma of Tom losing his entire memory of fifty-five years when electroconvulsive shock therapy (ECT) was administrated to him in 2000. You may read the aforementioned blog here.

The ECT was a physical assault on both Tom’s brain and spirit. The anguish remains immeasurable today, twelve years after the incident.

Years of speech, physical, and cognitive therapy in a brain injury unit—both inpatient and out—helped Tom regain a few living skills.

This particular episode started in 2004 when we started seeing alarming physical symptoms emerge that indicated an assault was in full force on Tom’s body. Physicians had told me that the disease of bipolar disorder shortened an individual’s lifespan an average of fourteen years and this was if no medication errors were made. New symptoms were escalating and in mid-2004 he was diagnosed with Parkinson’s disease. As with bipolar disorder, there’s no specific test that diagnoses Parkinson’s. A physician assesses the patient using a set of symptoms criteria for the disease. Tom was diagnosed and another round of medications was added to his already over-medicated body.

I watched desperately as his body continued deteriorating. He wouldn’t leave the house. He couldn’t hold a book or lift a coffee cup to his mouth without spilling most of it. He shook so violently, our daily lives were turned upside down—again. This once oh so proper—gentleman ate nothing but bite-sized finger foods. He lived in terror of making a mess. My husband and his handsome military bearing, our thought- provoking conversations, and the spontaneity of our lives were gone, again. What little we’d gained with his rehabilitation after the ECT, vanished into thin air (or perhaps I should say, into the addition of more and more pharmaceuticals).

I’m convinced our new little rescue shih tzu, Scooter, kept Tom alive in those dark days when his body was falling apart and we were clutching at thin air. This was new healthcare territory for us to explore. Our Teddy was gone but Scooter came from an abusive home and, with his heightened sensibilities, he knew Tom was his responsibility. Day and night Scooter was with Tom. He never left him unattended.

Scooter’s own story was one of survival in an unforgivable environment as a puppy. He’d been beaten repeatedly by a woman with a broom handle and left to freeze in the bitter cold of the Ozark Mountains of Arkansas.

After he was rescued, it was originally believed Scooter could never be rehabilitated. His first foster home was with an experienced rescue handler. She worked with Scooter for months but couldn’t get him to stop biting. She thought he’d never be placed in a permanent home and was planning to have Scooter euthanized.

Enter Scooter’s guardian angel. The most amazing woman stepped in and said, “No, we will not put Scooter down. I will socialize him, teach him not to bite and, if necessary, I’ll keep him as one of my own. She’d already reached her personal limit for the number of rescues she could have at one time, but I’ve never met another person more dedicated to rescuing dogs, primarily shih tzus.

Mary Spurlock—how I wish every dog lover could meet her—kept Scooter and worked with him for well over two years before she considered him ready for permanent placement.

Adopting a dog through Mary was a fun and insane process. Tom and I have laughed about it often. We had three home visits before laying eyes on Scooter.

Finally the day arrived when Mary brought Scooter to our home on the lake and he ran straight into Tom’s arms as if to say, “Where have you been all my life?” Hugs and licks and a game of fetch sealed the deal. Scooter was home.

Because Tom’s illness had progressed at such a rapid rate, Tom was in and out of the mountain hospital frequently during 2004.

Tom escalated to the point where he couldn’t walk without falling down and in February of 2005 I admitted him to the hospital once again.

Scooter mourned his missing master and stood sentry inside the front door. I’d never seen such a sad little dog. He didn’t want to play, eat, or go for a walk. He only wanted Tom. After two days, I cuddled him in an afghan Tom frequently used while napping and gently rocked our little dog as one might a baby until finally Scooter’s body relaxed and he went to sleep.

The following morning at the hospital I met with Tom’s diagnostic team and they told me they thought Tom was malingering. I came apart at the seams. Furious, I shouted, “How do you malinger when you can’t maintain control of your muscle groups, cannot form complete sentences, and cannot walk without falling down? What about the forty pounds he’s lost in the last six weeks and the night terrors that fill what little sleep he gets?” I was surprised fire wasn’t coming out of my nose and ears.

Because Tom had the diagnosis of bipolar disorder, he’d been admitted to the behavioral health unit of the hospital, and they are notorious for never addressing patients’ physical ailments. I demanded testing for Tom’s various conditions and met with complete resistance by the medical staff.

Taking matters into my own hands was nothing new for me when it came to Tom’s medical care. In 2003, we’d moved to the Arkansas Ozarks (definitely a topic for another blog) after living in many never-to-be-forgotten places. I knew Tom wasn’t malingering; his life was at stake.

I’d become active in the state’s mental health coalition on many levels andNAMI was the congressional liaison for Arkansas’ National Alliance on Mental Illness (NAMI). I didn’t hesitate to use the contacts I’d made and called a congressman on the Veterans Affairs Committee and relayed our situation, asking for intervention.

We’d never used the Veterans Affairs hospital system for Tom’s care but I’d learned of a doctor at theLittle Rock VA with world-renowned credentials who was reputedly the best of the best in treating bipolar disorder. He was also known for being on the cutting edge of research.

At the time we lived six hours from Little Rock in the heart of theOzark Mountains but I knew I wanted Tom under this doctor’s care.

I wasn’t sure how I was going to get Tom from our home to the VA hospital and I wasn’t familiar with the city.

The congressman’s office called me and said, “We have a medical transport helicopter on standby. Let us know when you’re ready.”

My decision was instantaneous. “Let’s go now.”

Although the local hospital refused to provide care for Tom beyond medication management, they would not release him to another hospital. Our insurance paid at one-hundred percent and that’s practically unheard of in the mental health care arena.

I asked to see the hospital’s treatment plan and they hadn’t even formulated one. They had discussed transfer to a long-term custodial facility. I’d fought that battle before. It wasn’t going to happen now.

Tossing the hospital’s paperwork back at them, I said, “You aren’t willing to help Tom. He’s going with me and, yes, I know his record will be stamped AMA.” (Against Medical Advice) It wasn’t my first time removing Tom from a hospital AMA and I was sure it wouldn’t be my last.

So, once again, I found a wheelchair, packed Tom’s few personal belongings, and readied him for his flight to the VA Hospital in Little Rock where they were ready to accept him.

I didn’t forget Scooter was at home while I was on my way to Little Rock with Tom. I called Mary and she proved to be a guardian angel so many times over the next couple years when we needed a familiar and safe place for Scooter. Going to ‘Miss Mary’s’ was going on vacation for Scooter. He’d meet up with his old buddies and be in familiar territory.

The medical flight arrived. But the local hospital refused to sign a transfer for Tom to be released to the Little Rock VA hospital that was willing to accept him. The medical flight could not transport Tom.

It was time to put Plan B into place.

Please join me Thursday for Part 2 of ‘The Wrongs of Psychiatric Care.’

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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).
Aside | This entry was posted in Brain Trauma, ECT, Electroconvulsive Shock Therapy, Mental Health, Psychiatric Care, Psychiatrist, Veterans and tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

77 Responses to THE WRONGS OF PSYCHIATRIC CARE – Part 1 of 2

  1. inesephoto says:

    So sad, there is very little compassion for the people with mental illness, and very little care.

    • Inese, I haven’t the words to express how much I thank you for reading Tom’s and my stories. When someone such as yourself stays with our travels through time, I know you are concerned about not only us but also the matter of mental health care for all individuals. If somehow we can show our collective society the world we live in must pay attention to mental health, every human being would be better for the experience. Thank you. Sheri

      • inesephoto says:

        Sheri, it is strange that our society is compassionate enough for the people with disabilities and diseases, but when it comes up to an otherwise normally looking person with hidden mental problem, they either suspect them in faking, or want to stay away from them…

        • Inese, I used to think we could change the perception of the general population and rid ourselves of the stigma of mental illness. Obviously that’s not happening as seen with the 1,900 veterans committing suicide in this year alone. There’s something terribly wrong with a society that not only refuses to care for those that gave the best years of their life for their country and then ignore their mental health needs when they come home.

          • inesephoto says:

            It will probably take a whole generation to change the attitude. When I was young, people with disabilities were treated badly. Now it changed. I believe in good changes, but I know they won’t come without education. Your blog educates, GROW educates, but silence of the Government, especially concerning the veterans, is disturbing…

  2. Wow! What a story. You’ve been through a lot.

  3. A powerful testimony. Blessings of fortitude to you and yours, Sheri.

    Namaste _/|\_

  4. Ajaytao2010 says:

    Oh Sheri dear so sorry so sorry to hear about your husband Tom
    oh dear i really really congratulate you for taking his care so dearly even after so many years
    you love , compassion and dedication will definitely bear fruits

    and to add to it did you sue the medical team

    thank you so much dear
    my blessing will always be with you forever
    God bless you dear and give you strength and endurance

  5. * Sheri DeGrom https://sheridegrom.wordpress.com

    I have nominated you for the SEMPER FIDELIS AWARD! I think the following should enable you to find the image of the award:

    This description was written by Patty of http://petitemagique.wordpress.com: Semper Fidelis is Latin and means Always Loyal. Loyalty means the world to me. I am very loyal myself, but I’ve got major trust issues as well. And I think trust is very important if you are sharing so much of yourself with people you meet through the internet. So I am working on that! 🙂 Why the wolves? Because wolves have very strong ties with their pack. Like a family or a great group of friends. And I just love them! This award stands for the loyalty and love between friends.

    The Rules:

    Add the Semper Fidelis Award logo somewhere on your blog.
    Thank the person who nominated you and link back to their blog.
    Nominate 5 bloggers who’s loyalty and friendship you value and you consider being part of your ‘pack of wolves’ on WordPress.
    Post something special for each one of your nominees and dedicate it to them. This can be a quote, saying, poem, picture, anything you think that would fit that person.
    Let the nominees know that you’ve nominated them.

    Sheri, from the USA, is a woman who goes the extra mile…hundred miles…thousands of miles! When I read of her support to her husband and how she bravely fights for him and his health…how she willing faces those who would deny him help…I see her inner strength and unconditional love for the man she married. She is a woman of great determination and courage. In between all of that, she still takes time to read others’ blogs and give her comments…all of which takes precious time. Sheri is a person who genuinely cares about all of us.

    “Life must be lived and curiosity kept alive. One must never, for whatever reason, turn his back on life.”
    by Eleanor Roosevelt

  6. atempleton says:

    What a comfort Scooter must have been to both of you. Thank God for people like Mary Spurlock.

    • Indeed, from the beginning of Tom’s disease, we’ve been fortunate to have a shih tzu that bonded ever so closely with Tom and sensed his need for their comfort. They also seemed to know they provided me a piece of mind in that they would never allow anything to happen to Tom while they stood guard. Mary Spurlock is indeed one of a kind. We’ve had Scooter in our home for 9 years or so and I talk frequently with Mary on the phone. Each time we talk, I’ll ask Scooter if he’d also like to speak with Mary and his facial expressions and the way he turns his head is fun to see. Mary and Scooter will forever be bonded along with Tom and Scooter.

  7. jbw0123 says:

    Thank you for telling this story. My husband fell apart in 2000 as well. We discussed ECT, and held off. After two hellish years of throwing everything into the mix — talk therapy, meditation, counseling, drugs (ramping up and ramping off, both hellish as you know) and exercise, he was finally put a drug regime for bi-polar disorders, and slowly, slowly began to heal. I HEAR YOU. Looking forward to chapter II.

    • I’m so, so happy you didn’t go for the ECT. It was 2000 when Tom had the ECT. About 4 months ago he started having terrible headaches – all the symptoms of migraines (cannot tolerate light, noise, change in weather, and on and on). After much testing, etc. the final conclusion is that nerves at both sides of his temple were damaged with the bolts of electricity and are now beginning to deteriorate further to cause this pain that’s sent him to bed almost permanently. I have a reference link in Part 1 that will take you to why we made the decision we did for the ECT.

  8. Emma says:

    Thank you for sharing your story with us, Sheri.

  9. I admire your courage and determination. You have the ability to inspire others who have similar struggles. Mental health is an area that is severely neglected in our society.
    Another (((hug))) for “Scooter”!
    Looking forward to following your blog. 🙂

    • Scooter came into my office to ask if he could go to bed early. He’s so mellow from all the hugs. He said, “I’m so relaxed – I never understood why you blogged until now.” I offered to get his bedtime treat but he was satisfied with being lifted beside his master. Thank you for your encouragement and support. I’m looking forward to checking our your blog.

  10. Beautifully written, like always. I’ve had my share of profound health issues as well and I can speak to how frustrating it is dealing with insurance companies and physicians. Scooter has awesome parents, give him some lovin from me.

  11. cindy knoke says:

    Superbly written. Heartbreaking. Ultimately inspirational. Bravo.

  12. Your story is so powerful and touching. We find strength and stones we never knew we possessed when push comes to shove. Prayers ♥ ( I am in love with little Scooter, btw, bless you for rescuing him…..and he you ♥) paula

  13. Deb says:

    I’ll be praying for you and Tom, Sheri.
    xxx

  14. Patricia Sands says:

    Sheri, your post reads like a compelling novel. What a story. My heart goes out to you and Tom.

  15. Dear Sheri, You are an amazing womyn and an amazing marriage partner! You epitomize unconditional love! The resolve you have to stand by Tom…the resolve to fight against medical teams…yes, just because Doctor is written before their name, does not mean they know it all or have all of the answers! Your piece is written with passion and strength–both of which I am certain keeps you at Tom’s side. You are a beautiful person and a person that gives us hope in compassion, understanding and love—seeing you live it encourages us all to live it also. I do hope you have time to rest and relax a bit–thank you for sharing what you are doing, what have done for Tom. I think this should help others who struggle with someone who is mentally ill. Your courage helps us all! Blessings on you and all your endeavors~and on Tom!

  16. Pingback: ‘Til Death Do Us Part | David N Walker

  17. jrosenberry1 says:

    I am so sorry, Sheri. So, so, so sorry. It’s ridiculous what the insurance and medical industries put us through. My prayers are with you and your husband …. and little Scooter! [hugs]

    • Scooter is delighted with all of the hugs he’s receiving and I’m thrilled with the number of comments. It tells me the blogging world is well and willing to read the truth about mental illness and the continuing fight a family member has to go through to receive care for the person they love. Thanks for stopping in.

      • jrosenberry1 says:

        Any time. 🙂

        It’s a shame, really, that you have to fight so hard — and be so persistent — just to get the care a person needs. Sad.

        More hugs to you, and hugs / scritches to Scooter.

  18. Terry says:

    No wonder I have always felt a heart to heart connection with you from the very first time I met you. You and I are so similar in ways. Fighting for what’s right and fair. Fighting the system, fighting for our loved ones…………I love the precious Scooter and if I was there I would hug and smooch on the baby. I am so very proud of you and proud to have you as my friend

  19. Ajaytao – Thank you for the wonderful nomination. I will do my best to fulfill my responsibilities.

  20. Ajaytao2010 says:

    I Nominate you for Bouquet of Super Awards – 27 Nominations

    please choose any 3 awards out of the 27
    accept it and oblige

    there are no linkbacks for this award

    http://ajaytao2010.wordpress.com/2013/06/24/bouquet-of-super-awards-27-nominations/

  21. Sheri, it honestly breaks my heart to understand your position in life for so long! Both my sisters are still here in this realm, after 44 yrs of muscular dystrophy and a minion of complications and, despite the tragicomic situations you’ve both been handling ~I can assure you that Nothing is in vain! I have a firm assurance that all you’ve been suffering as well as Tom, will not go without its eternal glory! I, too, believe your Teddy is a life giving source for so it was for one of my aunts and now, a friend that has cancer. I’m pained for you two, but I hope you don’t mind that I pray for you both.Orson F. Whitney, who said:

    “No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God … and it is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire and which will make us more like our Father and Mother in heaven” (as quoted in “Tragedy or Destiny,” p. 6).
    Lovingly Debbie

  22. Mae Clair says:

    Whew! I can’t believe all you and Tom have been through, Sheri. It’s just mind-boggling. Each time you post one of these experiences I am reminded of the unshakable strength you (and Tom) have, and your devotion to each other. It was a blessing learning about Scooter too. God brings pets into our lives for a reason. He obviously adores Tom. We find healing and connections in the most remarkable places!

  23. Sheri, I am so touched that you have chosen to share with your readers this journey you and Tom have been taking. I grew up with mental illness in the family and saw how professionals and family members treated the person as thought they had elected to be this way. I knew the personal demons he struggled with, that man of them struggle with and to think they “elect” to feel or behave that wayis absurd.

    It’s like thinking I want to elect to have cancer. I elect to have an illness that takes me far afield of what I love and those who love and want to help me. The big business of medicine … the new drugs and the contraindicators of how those drugs can devastate more than cure. How drugs are often used as a cover or a mask for the person’s condition. Drug companies play with treatements when the truth is they have no clue.

    I look forward to the second part of this. You and Tom are in my heart as always 🙂

    • Florence – Hi there my friend. It’s always interesting to me that even some physicians cannot get past the fact that Tom is bipolar and therefore cannot go on to treat whatever it is that they are supposed to be treating him for (i.e. sinus infection, gastro issue, etc.) It’s been trial and error to find doctors that will speak directly with Tom and not try to go through me regarding his physical ailments when they occur. Thankfully, we have the best psychiatrist we’ve ever had – who would have thougoht we’d find him in Arkansas!

  24. I think you’re caught between two powerful negative forces, Sheri. First, I believe the study and treatment of mental health issues is closer to witchcraft than science. Second, any time a third party is inserted between the doctor and the patient, bad things happen. Between insurance companies’ self-preservation regulations and government nonsense, doctors and patients have pretty much lost control of healthcare, whether it involves mental or physical health. I don’t believe this will improve until Jesus returns.

    Having said all that, I think you are doing a wonderful and commendable job of trying to navigate the stormy waters your husband must go through. May God bless your love and tenacity.

    • David – Thanks for dropping by. I’ve learned much about our healthcare system and of course it didn’t hurt that I also worked inside the system for so many years. It also helped that I’m not the damsel in distress and I’m as fierce as they come when it comes to getting the care Tom needs. I never pull a punch. I’ve never cared what a treating facility thought of me – especially if I was taking Tom out of that facility. Tom’s always been my first and only concern. I’ve always known that if I take him out of the hospital ‘against medical advise’ – I cannot be held liable for the account – that’s a powerful bit of information more people need to be aware of. Once people impower themselves to take their healthcare into their own hands, the healthcare in the United States will improve. I ask for God’s guidance daily and I believe that’s why Tom is alive today. Many doctors said he would be lucky to see 55 and we’re 11 years beyond that. I have no intention of giving up the fight.

  25. Robyn Lee says:

    Oh my dear Sheri – your story speaks directly to the deficits in the system of healthcare – and mental healthcare as well. I feel so deeply for what you have experienced. It is a gift that Scooter entered your lives when he did. You are a very courageous woman… a role model for so many. I will follow the next part of this story for certain. I am sure there much to be learned here, and I admire the love and commitment you have shown your beloved husband. much love ~ RL

    • Robyn – Thank you so much for stopping in to read with me. Yes, our healthcare and always our mental healtcare systems are in shambles. Many on the streets and in our prisons are there because they don’t have anyone to advocate for them. Treatment is available but there simply aren’t enough advocacy teams to reach everyone that needs help. Many of the individuals have been ‘in the system’ so long, they know of no other way to live.
      My desire is that I might reach others faced with situations similiar to what Tom and I have been through and share with them bits of knowledge and courage to ‘shoulder through’ and demand what they know they have the right to receive.

  26. Sheri, although I’ve read your story before a while back, I was glued to every word and it touched me deeply again. I didn’t know about Scooter and his devotion to Tom. I love the picture of Scooter running with his ears up, so precious! Keeping the three of you in my prayers always.

    • Julaina – Thanks for stopping in to read with me. Scooter’s devotion to Tom is amazing. Before Scooter, there was Teddy that I included in my blog of when Tom came home from the hospital after his ECT and Tom had lost 55 years of his memory. Although neither of these little rescue dogs had a bit of formal training, they’ve been fundamental in Tom’s survival. I also have my own shih tzu rescue that stays at my side and while I work in my office, she sleeps at my feet. Her name is Miss Priss and I haven’t the words to tell you the comfort and love she passes on to me. Many a time I’ve cried into her fur while holding her tight and she’ll turn those big brown eyes at me as if to say, “Dad has Scooter and you have me. We all love each other and everything will be better soon.” Maybe more than anything, Prissy as I call her, has taught me it’s okay to cry. I don’t cry when I’m fighting the medical establishment but it’s great to let the frustration and sorrow out with an understanding compaion.

  27. I had to read the definition of the word “malingering” because I wasn’t familiar with it in this venue. When I saw what it said I can understand (amongst other reasons) why you would be so so angry. How terrible. I await anxiously the continuation of Tom’s story. All I can say is, he is so lucky to have you as his wife to fight so hard for his medical care. And how about the thousands of others who don’t have someone like you? That is ever so sad.
    Patti

    • Patti – Our battle with Tom’s bipolar disorder, of which there is no cure, has gone on for 25+ years. It has not been an easy battle by any stretch of the imagination. I journal daily the emotions, the challenges, the obstacles in our path and yes – even the victories that emerge ever once in awhile. One of the reasons I left Monterey, CA when Fort Ord closed was to keep Tom insured under my Federal Blue Cross insurance plan. I had other compaanies come calling and could have trippled my salary and we could have stayed on the Central Coast of California where we thought we’d live out our retirement years. Unfortunately, no matter how much money I made, no one could insure Tom and I had to have health insurance for him (and me too). Thus, I threw my hat in the ring and went to DC.

      You asked about the many individuals who don’t have a personal advocate the same as Tom. That’s where advocacy by citizens comes into play. I worked side by side with Ted Kennedy in writing Parity Legislation wherein insurance companies must treat the brain as if it were like any other organ in the body and therefore insurance companies must honor claims at the same rate as they pay for other benefits. I worked with other congressional leaders to establish suicide prevention centers on college campuses across the nation with NAMI support. There are so many places a private citizen can plug in and help others less fortunate than they themselves are. Thank you for reading with me.

  28. Your journey has touched me deeply and I pray for you and Tom daily. God Bless you my friend.

  29. Jane Sadek says:

    You obviously beat this somehow, praise the Lord! But what a horror to encounter. Had a miniature crisis like this during my mom’s last hospital stay. The emergency team intubated without so much as a how-do-you-do. She wanted off the respirator, but the staff kept telling me she’d die if I took her off. I followed her wishes and she’s going to be fine, but it’s just more proof that you can’t drink the jello shots the hospital will hand you.

    • Jane – After 25+ years of educating myself about bipolar disorder and staying up with the latest research, I often believe I have a better handle on what’s right for Tom instead of the doctors treating him. I must be ever vigiliant and read every pharaceutical insert that arrives with each new medication prescribed to insure it doesn’t harm Tom further. Every patient, regadless of diagness must have an advocate. I’ve been labeled many different nasty names by many different staffs but that’s fine with me. I’m the one that still has Tom in my daily life. Otherwise they would have made me a widow long ago and that’s not acceptable.

      • Jane Sadek says:

        Amen. Sing it sister. There is nothing more important than knowing what your loved ones want and fighting whoever it takes to get it. When I put my head on the pillow every night, I don’t have any personal regrets linked to the care-giving I’ve provided to my elderly family members. My first response is to be as friendly, cooperative, helpful and nice as I can be, but anybody who provides medical care to my mom soon figures out that I’m very involved and there’s no ignoring me to make me go away. I’ll just escalate it and not even apologize for doing so. That doctor or nurse will most likely not even remember my mom in a week or so, but whatever they do to her, she has to live with for the rest of her life – and so do I.

  30. What a powerful story. I am amazed at your strength and fortitude.

    • Hi, Kimberly – One of the reasons I love your poetry so much is that it speaks directly to my heart. On the days that Tom retreats into his shell and I can’t seem to discover where he’s gone, I read your poems and understand it’s okay for me to feel the loneliness and despair that although Tom is here, he’s really not. I find a peace in your words and am then able to get up and carry on with whatever I have to do. I gather so much strength from the blogging community. Thank you for reading with me.

  31. NotDownOrOut says:

    What an extraordinary set of challenges you have faced! I was so sad to read this, especially the comment about malingering. It points to this notion that health is not just a condition but a responsibility. The real question is–whose responsibility? Because, when a doctor wants to hold you accountable for a condition I think every effort needs to be made to determine what power you have to control the condition. I look at how we treat so many health conditions today by blaming the patient and ignoring the fact that some of the situation is not easily controllable, if at all controllable.

    Every case of diabetes is not controllable. An individual can restrict carbohydrates and still have high blood sugar. Every case of cancer is not preventable. There are people biologically predisposed to a cancer. There are people whose cancer comes from foods our government has declared safe to eat. There are cancers that began with water, air, or chemicals we determined were safe. Look at our concerns today about the safety of canned goods, aluminum cookware, microwaved foods, gmos. How much wrong advice did people receive about trans fats?

    Every case of mental illness is different. We do not fully understand how the illnesses work. For example, we adjust serotonin to treat certain conditions and we don’t understand how it works. But we will blame people with depression for not working on their conditions.

    What inspires are the ways in which we (you) cope–with patience, the companionship of animals, persistence, sometimes anger, with love, too. Thanks for sharing your story. I hope for better days for you.

    • Cheryl – I was typing my ever so brilliant reply to your wonderful supportive comment, when zap, my wi-fi blew the coop on me. I think the dastardly (is that a word) psychiatrist out there that just want to make money must have sensed I was up to what they call ‘no good’ once again and decided to pull the plug on me! You mentioned diabetes above, Tom is diabetic as a result of one psychiatric medication that did not have a black box warning that the medication could cause diabetes. Many of the medications have been so powerful have literally eaten holes in many organs. And, you are so right about what the government tells us. We are gassing our own soldiers [via the burn pits I blogged about earlier]. We didn’t have to wait for Syria to gas their own people! What about what we are doing to our own? But, I diagress. The purpose of this blog is to educate others that they too may have a loving and successful marriage when their partner is bipolar. The commitment is 150% and often times higher and never lets up but in my opinion that’s what unconditional love is all about. Thank you for your ever continuing support.

  32. gdwest123 says:

    What a terrible and moving story Sheri. Scooter sounds wonderful and wishing you and Tom all the very best in the world – you deserve some happiness after all you’ve been through. Looking forward to reading part 2, but hating to know about your suffering and Tom’s terrible problems. All the very best

    • Thank you so much for reading with me. Bipolar disorder can become a third member in a marriage and it never goes away. However, many diseases never go away and God continues to give me the strength to face each new challenge. Tom is indeed the love of my life. I just peeked in on him a moment ago and he and Scooter are curled together. I wanted to take Scooter outside with a promise to bring him straight back to his master but Scooter was having nothing to do with my plan. We’ve been fortunate to have 3 extremely sensitive ‘therapy dogs’ [none with formal training] that have saved Tom’s life more than once.

  33. God bless you Sheri. We will keep you and Tom in our prayers {{hugs}}

  34. Uzoma says:

    A very touching and arresting post, Sheri. I’ve a friend in NY with BPD and every time I think of her situation, I feel so bad I wish it will just stop and leave her body. In her case, it’s alters and pains and seizures.

    I must commend you for your extra-ordinary courage, sincerity and love the poured out with every line of this post. It’s difficult road–the one you and hubby are on, but you’re NEVER alone. Blessings to Mary for making Scooter such a lovely intelligent dog friend.

    I’ll be around for the next part.

    • How nice to see you again, Uzoma. I hope you’ve been well. You are so right. Bipolar Disorder is a tough disease and I’ve learned we never know which way it will turn. My husband didn’t have symptoms until mid-life and because that’s such an unusual time for the disease to hit, it was years before he was diagnosed correctly. Studies I read told me the divorce rate for couples wherein one individual was bipolar stood at the 75% level. It has since risen to 90% now that we’ve been married 27 years. I’ve been determined to be Tom’s advocate throughout his illness and refuse to be a casualty of the disease. Unconditional love carries us through.

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