Dreams Floating Away

Dreams Floating Away

Dreams/Caregiving/Medical 2016
by – Sheri de Grom

My dad once told me he could always tell a city girl from a country girl by the way she walked. Dad said the city girl seemed to have more time to enjoy the process of getting where she was going and she wasn’t in a particular hurry to get there.

Then he would grin and say, “Now you country girls seem to always have a raging bull chasing you from place to place in those 3” high heels you wear. It’s a wonder you don’t break your neck.”

Dad after shooting rapids with Tom on Umpquah River, OR A Dream of Dad's Came True

Dad after shooting rapids with Tom on Umpqua River, OR
A Dream of Dad’s Came True

Dad and I often talked about my goals and the things I wanted to do with my life and never once did we talk about any of it being easy to accomplish. He’d had to work hard all his life and he knew I was willing to do the same.

I digress, running through the underground tunnels of the Capitol with documents hanging from the edges of my briefcase. Always another mission, one more legislator to convince, one more signature in support of whatever bill; adrenaline filled my days with purpose.

I often think about my dad and it’s always with love and tenderness. He encouraged me to accomplish every dream I concocted. I’m sure he wondered where some of my ideas came from.

Once upon a time, I told Dad, “Life’s not fair.” It’s not that anyone ever promised me life would be fair but I’d sure like to catch a break here and there as a caregiver to the man I love.

What am I to learn from God, taking away the man I love and leaving me an empty shell of his former self in his place? I love Tom, but how can I carry the load for both of us? I’m exhausted.

As others remind me, FAIR isn’t a word to be found in the Bible but I never went looking for it there. I’ve never believed God would give me more than I could carry.

I’m determined Tom won’t die on my watch but how can I guarantee that? I’m afraid that I’ll turn around and he’ll be gone. The very thought makes me want to run but I can’t imagine running without him at my side, but I would have to carry him.

I watch him sleep with his head covered up and the sheet drawn tight around his body as he hugs the very edge of the bed. What has penetrated his brain and caused him to be so fearful? He cannot verbalize his fears. The strong, determined leader I married has been stolen. But by whom? I don’t understand and I’m beginning to believe I never will.

Bailey’s confused when Tom hides his head. The 29 years we’ve been married, our animals [members of our immediate family] have always known when Tom is in the most   distress].

Bailey doesn't understand when Tom doesn't or can't play.

Bailey doesn’t understand when Tom doesn’t or can’t play.

I’m frustrated and oh so angry at the same time. It’s not Tom’s fault that doctors have made one mistake after another and have ignored symptom after symptom for 30+ years simply because he has a mental health diagnosis of bipolar disorder.

Others ask how I’m getting along and I’m ashamed to tell them the truth. I sound selfish and self-centered. I want to research and continue my work with organizations that support veterans, the elderly, abused civilian military personnel being displaced from their work [especially women once they reach age 50 and are at the pinnacle of their career]. I know how to do these things and I want to do them.

Tom, Bailey and my gardens are my life and that’s not what I had planned at this stage of

Welcome To My Front Door

Welcome To My Front Door

my life. Of course, I wanted all three in my life but I also had plans for so much more.

I thought managing Tom’s mental health care and being his advocate was one of the most difficult challenges I would have in my life. I hadn’t a clue of what was to come. It did set the foundation for what is happening now.

I’ve spoken of reading 50 years of Tom’s medical records while preparing his VA Claim. I wish to share much about this process but in the meantime, it’s one of the most difficult projects I’ve ever taken on. The claim has now been turned in and been told we’ll hear something from the VA in 3 to 6 months.

I read of caregivers and how they dedicate their lives to the person or persons they care for. Then I wonder, am I being too demanding?

My prayer today, “Dear Lord, I humbly submit to you my confused thoughts and ask your help in making me stronger in all aspects of my life. Please let me be more patient and compassionate. The bottom line, it seems – the man I love has disappeared into a tinderbox of chronic illnesses and the only certainty I know is that every day is uncertain. Today, Lord, I ask for perseverance and the ability to do. The toy boxes that represent my life’s interests are in a mess and I’m responsible for that myself. I ask for Your will to be done. In Jesus’ Name, I Pray.

Front Door

Front Door

To my friends – thank you for reading with me.


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Stigma/Mental Health/Medical 2016
By – Sheri de Grom

Notes From My Journal – Conway, AR Dec – 2015


My Grandmother Fromm taught me the importance of keeping a journal when I was 8. She said, “It is never simply a record of daily events. Write with conviction, feel and believe in who you are. It’s okay if others don’t agree.

I remember well that first mental health hospital admission of Tom’s on December 7, 1987. We didn’t know we had other options to gain admission other than the ER.

Those memories of that first admission linger in my heart as if it were yesterday. I first saw the brutality and stigma among not only the general health profession but more tragically, mental health professionals. You may read that blog here.

I reference that first mental health admission of 1987 because I’m infuriated so little has changed since that time. I’m surprised individuals with mental health concerns seek care as often as they do considering how badly they are treated.

I wouldn’t have the proof of this callous, indifferent care continuing 17 years later if I weren’t deeply involved with Tom’s medical records covering the past 30 years.



Why have I spent thousands of hours advocating on behalf of those with mental illness when the health industry continues to turn their backs with indifference on millions who desperately need their help?

I’ve been absent from the blogging world more than I’ve liked due to the responsibilities I have of preparing two case files for Tom and me that will decide our future. We both want to stay in our present home and that will be possible if I’m able to present the specific combination of information the VA requires.

To prepare the cases, I studiously reviewed each page of Tom’s medical records since he retired from the military, along with his complete active duty medical records. Together, the medical records span 50+ years. I wish I could detach my mind from what I’ve read. This is the man I love and what I read is more often than not, barbaric. He wasn’t in an institution nor a patient in any system. He was a full-paying client and no one cared.

In the particular medical record I’m enraged about today, I’d adhered to every regulation required by HIPPA and I still don’t have all the records I requested 3 times from the same hospital. What I do have is a record I specifically stated I didn’t need at this time and it makes me wonder if a copy clerk somewhere wanted to pass the information on or if it was simply a mistake by an outside agency providing the record.

Speaking of the outside agency, forget about your medical information being protected. It’s Not. Investigative research has led me to the conclusion that HIPPA does not protect the patient’s privacy. It does, however, make it almost impossible to obtain a copy of your own medical records and causes far too much work for in-house administrative staff.

You are entitled to a copy of your medical records. I’ve paid as much as $5.00 per page for some of Tom’s copies. The cost of preparing one case file for a VA claim will be a few thousand dollars before I finish. The few thousand dollars will be for each claim and that doesn’t compensate me for my professional time or administrative expenses. It’s no wonder veterans feel they have to hire attorneys to represent them. I understand their frustrations.

I’d requested a copy of all emergency room visits for Tom with the exception of psychiatric and one specific outpatient surgery record from Baxter Regional Medical Center in Mountain Home, AR. It’s the hospital we used the 2 years we lived in the Arkansas Ozarks.

What I received, after all the proper exchanges of HIPPA forms, was the one outpatient surgery record and one ER visit. I specifically asked not to be sent any psych ER records. I didn’t need them. I only needed records about Tom’s many pulmonary related visits. The one ER visit enclosed was for a psych visit and no others.

I hadn’t asked for this outpatient ER medical record but I’m glad I received it.

I stormed around my winter gardens for hours wishing I had weeds to pull or some such thing. I even had a few times when I’m sure I could have uprooted a tree with my bare hands.

The official final record reads: “A 57-year-old white male who presents to the emergency department with worsening shaking presents to the emergency department with worsening shaking hyperventilation, headache, and shortness of breath. He has been diagnosed with bipolar symptoms for approximately 2 months. He is on the bed just shaking the whole bed quivering, sweating. He also complains of leg pain. He has these same symptoms. Apparently, he has been admitted to the sixth floor for this in the past. He is very anxious, hyperventilating, just shaking from head to toe. It is hard to tell if this is intentional shaking or whether he actual does have a tremor.

I talked to Dr. Dollins, who normally takes care of him. The family requests a psych evaluation. He will be admitted to the sixth floor for severe anxiety versus psychosis versus bipolar.” End of Official Record.

Many have argued with me that negative conditions toward the mentally ill could not possibly continue at the rate I’ve witnessed and reported over the years. I had no idea the negative remarks were becoming a part of Tom’s official medical record. It’s critical for all patients and those who love them to join together to ban stigmatizing reporting in all health records.

Remarks such as the ones quoted above are not only erroneous, they are misleading and can cause an insurance company denial of a claim.

The inaccuracies in the record other than grammatical included: the length of time Tom had been diagnosed bipolar. Tom had been a patient in this hospital before and bipolar was a disease listed in his permanent chart. Tom was diagnosed in 1987 and not 2004.

The sixth floor the report refers to is the locked geriatric unit for dementia and Alzheimer’s patients. Baxter Regional Medical Center in Mountain Home, Arkansas did not have a Mental Health Unit. Therefore, all mental health patients were admitted to the geriatric unit.

The geriatric unit is not the ideal place for ANY individual to recover. Mental health patients are fragile and anxious plus the atmosphere alone is distressing.

The closing sentence of the medical report: “It is hard to tell if this is intentional shaking or whether he actual does have a tremor.”

During this same time period Tom was diagnosed with Parkinson’s Disease and the same as Bipolar Disorder, there’s no definitive test to diagnose the ravages to the brain both diseases cause.

The ER doctor reported he’d talked with Tom’s psychiatrist at the time, a Dr. Dollins. I had already spoken with Dr. Dollins and he’d agreed a direct admit for Tom was the best plan. When we’d arrived at the admissions office that dreadful night in 2004, they did not have an admission order on file for Tom and we were left with no choice but to face the dreadful emergency room.

I was so stressed and concerned for Tom that night, I didn’t remember my normal protocol when the hospital staff was telling me what I had to do! I knew I didn’t have to agree to anything. Dr. Dollins had written an order and I wasn’t holding them accountable.

I’d talked with Dr. Dollins earlier that evening and he’d instructed me to take Tom to the hospital where a direct admit order would be waiting for us.

I SHOULD HAVE called Dr. Dollins myself and asked him what happened to the direct admission orders he’d promised. I had the right to demand more. Tom was his regular patient and saw him every week.

Often it’s difficult to remember your own playbook.

Miracles do occur.

As a result of this hospitalization, I knew I had to forget all of my old ideas about using only providers covered by Federal BC/BS. It hit me; I’d been practicing my stigma about all the negatives I’d developed over the years about the VA. It was our one remaining resource. It was time for me to stop being a snob and reach out.

Tom has now, as of today’s date, been with the same psychiatrist at the VA for 11 years and after that first admission when he was taken off all medications, he’s never had another mental health admission. The relationship we have with Tom’s psychiatrist at the Veteran’s Hospital at Fort Roots is one we both treasure. Tom has been free of mental health admissions for 11 years. We’re convinced Dr. Kuo’s treatment is one of the main reasons Tom’s alive today. The 3 of us have a partnership.  We have a great working relationship and if that means we must live in Arkansas and not the Central Coast of California, then so be it.

We’ve made progress in educating the public about mental health but I have grave concerns about healthcare professionals. They continue to allow mentally ill patients to die 25 – 40 years ahead of the general population.

I’m estimating it will take an additional two months for me to complete the VA Claims mentioned earlier. As I read Tom’s medical records, I’m amazed that one man has survived so much.

Thank you for reading with me. I cannot specifically write about what’s going on in Tom’s and my world at present. It’s just too painful. My hours as a caregiver are long; I see the pain in Tom’s eyes and would give most anything to ease the spasms of pain that rack his body daily 24/7.

Our precious Bailey divides his time between being doctor dog and my sidekick. On those days when Tom has an especially difficult time both getting enough air and a problem swallowing, Bailey stays extra close to Tom.

May I impress upon you the importance of acquiring a complete copy of all your medical records [a copy of each doctor visit to include labs, x-ray and other tests]. Additionally you need the interpretation of the labs, x-rays, etc. This information is vital to your welfare. We cannot rely on electronic records. They are crashing faster than they are created and stolen at an even greater speed. Tom’s records alone present far too many problems. It would take a lifetime for me to have the mistakes corrected.

I’ll not stop fighting for equitable care for the mentally ill and I pray you won’t either.

Thank you for reading with me.






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Veterans/Veterans’ Benefits/One Woman’s Opinion
By – Sheri de Grom


My opinion about Veterans with ‘bad paper’ has changed over the years. Having worked in The Office of The Staff Judge Advocate (JAG) for many years [all during times of peace] legal was by the book and shades of gray were rarely allowed to shadow my thoughts.

Varying levels of bad paper discharges exist within the Armed Services:

[1] GENERAL DISCHARGE – For those whose service was generally satisfactory, but who engaged in minor misconduct or received non-judicial punishment.

[2] OTHER-THAN-HONORABLE DISCHARGE – An administrative action for those with behavior problems such as violence or use of illegal drugs.

[3] BAD CONDUCT DISCHARGE – Punishment for a military crime.

[4] DISHONORABLE DISCHARGE – For offenses such as murder or desertion.

Jim Salter with the Associated Press expressed his opinion on December 24, 2015, “There is a small percentage of folks who were court-martialed and convicted, and they have earned their bad paper.”

Exiting the military with a less-than-honorable discharge follows the service member for  the rest of their lives: into the workforce, background checks, social relationships and perhaps most of all it precludes them from getting the benefits other veterans receive upon their discharge.

Never before have we seen combat situations where we’ve deployed our military an excessive number of times. Returning to combat zones requires more than a hug and a pat  on the head. These men and women suffer injuries and anguish in Iraq, Afghanistan and elsewhere. If they’ve turned to drugs and alcohol to relieve their pain, who am I to judge?

Ex-military members who’ve sacrificed so much can’t turn to the Veterans’ Affairs for mental health problems, post-traumatic stress disorder, TBIs or any other injury. Those who want to go to college aren’t eligible for the GI Bill, the jobless get no assistance for career training and the homeless are excluded from vouchers.

The Department of Defense reported that more than 18,000 people left the military last year with ‘bad paper.’ More than 352,000 have been discharged with ‘bad paper’ since 2000.

Studies show those who are less-than-honorably discharged are far more likely to end up in prison than honorably discharged Veterans. They are also more likely to be suicidal and jobs are harder to get because background checks highlight an undesirable military discharge.

We’ve created a population that’s been segregated from the numerous agencies that serve Veterans. In the cases where intervention might have helped the soldier, it’s our responsibility to help, not turn them away. We owe these battle-fatigued Veterans a hand in returning to a civilian life wherein their hopes and dreams might become reality.

What do you think? Have times changed and should we bend the rules for some of the ‘bad paper’ returning after so many deployments or simply see these veterans as individuals who made bad choices?


I’d originally thought I’d continue blogging about Tom’s and my journey through our latest medical nightmare but I’m too close to it on a daily basis. I learn something new about the mystery of Medicare everyday and I’m alarmed by how many see it as the answer to the U.S. healthcare crisis.

I’ll write more about our trip down death’s lane later. I cannot relive all that happened when BAPTIST HEALTH MEDICAL CENTER of LITTLE ROCK discharged Tom to home knowing without a doubt he probably would not survive! BAPTIST HEALTH advertises they provide amazing care for patients. If a hurried trip to death’s door is their definition of ‘AMAZING CARE,’ I can say they exceeded their goal beyond expectation.


Let’s focus on the men and women of the Armed Services, both past and present. Please join me as we not only strive to change legislation for all Medicaire recipients’ but continue the fight for our Veterans and the benefits they rightfully earned.

Thank you for reading with me and I look forward to hearing from you. For those that believe Medicare is the answer for universal healthcare, please consider how long you wish to live.




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Caregiving/Advocacy/Medical 2016
By – Sheri de Grom

Looking back to my last post of Dec 20, 2015 [you may read it here], I had no idea my life would soon become a powder keg.

Many of you have asked if I’ve found the silver heart Tom left me, and unfortunately the answer is no. I know in my heart of hearts, the lost silver heart had to take second place to the beginning of another medical nightmare.

Christmas day I heard Tom using a mallet hammering in his studio. He had trouble standing and I couldn’t imagine what was so important. Sometimes it’s better not to ask Tom why he’s out of bed when there’s every indication he should not be standing without support.

Tom came into my office and handed me a silver heart. He said, “I couldn’t let Christmas pass you by without a silver heart. This heart is from mine to yours.”

Tom took a nasty spill Jan 2, 2016. His upper right forearm fractured in three spirals and broke at 45 degree angles in opposite directions from each other. One break was an inch from his shoulder, the 2nd an inch from the first break, and the 3rd an inch above his right elbow.

Compliments of Google

Compliments of Google

The orthopedic surgeon on call at our local hospital that night was convinced Tom might not survive a surgery to repair his arm due to his multiple life-threatening conditions. He also said there were 2 breaks but there were actually 3, and that they were at 20 degree angles. CATASTROPHIC MISTAKE by the orthopedic surgeon. Tom could have lost his right arm permanently!

Tom’s arm was placed in a compression cast and I was beyond stunned when 2 days later the hospital discharged Tom with a prescription for 30 days Oxycodone, 1 or 2 tablets every 4 hours as needed for pain along with an appointment slip to see the doctor in 30 days.

Medicare refused to issue a wheelchair. Their response to our request was that Tom had broken his arm and not his leg. [Medicare refused to consider that Tom could not walk on the bottom of his feet due to the psoriatic arthritis keeping them an open wound]. HOW DID MEDICARE THINK I WAS GOING TO GET TOM FROM ONE PLACE TO ANOTHER? USING HIS ROLLING WALKER WAS NOW OUT OF THE QUESTION AND HE’D BECOME A MORE SERIOUS FALL RISK.

I brought Tom home and prayed, God’s will be done. I felt myself sinking into a deeper depression. I had to be able to get Tom to his medical appointments but how was I going to make that happen. Medicare put me in a serious situation.

We are fortunate to have exceptional friends of deep faith who have stayed close for the past 10 years. We often share the ups and downs of our lives. Two days after Tom was home from the hospital, a transport wheelchair appeared at our door [fits Tom perfectly and is a gem for Tom to get around in]. I can (with effort) lift it in and out of the trunk.

A quote by Edward Young always comes to mind when I think of Lynn and Bill Garret. To paraphrase, they are indeed “The Wine of Life,” and it’s with thanksgiving to God that I thank them for seeing our need and taking that need and putting it into action. The transport wheelchair is ours to keep. Thank you, Lynn and Bill, seems so little to say when something changes the quality of our daily lives in such a drastic way.

The compression cast placed on Tom’s right arm from the top of his right shoulder and down to his fingertips lasted less than a week before it was too loose to hold Tom’s broken bones in place. The pain medication offered him zero relief.

We visited the orthopedic surgeon’s after-hours clinic for a readjustment of the compression cast within a week of his discharge. Imagine my outrage when on the 2nd visit, I was told, “Take pictures of how we do this. We don’t make money adjusting compression cast.”

I’ve since learned by examining EOBs (Explanation of Payments from insurance companies) that they were paid in excess of $400 for each of the two visits we made lasting less than 15 minutes. For their rudeness and disregard for our need for treatment, I believe they are highly overpaid.

At the time we were at the clinic I wondered if we were being told the truth or was this further evidence of our medical care breaking down further? How could I be expected to take care of the realignment of Tom’s broken bones? I don’t have an x-ray machine at home! I don’t have the medical training

What’s happened to the patient being followed by the physician until a problem resolves? Tom didn’t need yet another chronic diagnosis in the form of a useless arm or one of continuous chronic pain.

The months following Tom’s broken arm have been the toughest yet. My role as a caregiver changed as I met one brick wall after another. However, I’ve learned and I’ve journaled. Much of what I’ve learned has been the result of living in crisis mode day after day. I’ll invite you along my journey in future blogs.

One of the best decisions I made for myself was to get another rescue shih Tzu. I’d asked for an 8 yr old but a 3 yr old flew into my arms the night I visited to meet my possible new rescue. I’m certain now that Bailey knew I was the one that needed rescuing. Each time I went to put him down, right back into my lap he popped

Bailey has been my constant companion these long and horrifying days of not knowing Bailey in Reclinerwhat brick wall would greet me around the next corner.

He’s learning to be a service dog for both Tom and myself as we both have PTSD. When Tom became so sick, Bailey and I lost a lot of ground with our training as Tom came first. We are still using his service dog commands.

I mentioned to Bailey about going to Navy Seal Training and he politely told me, ‘When Pigs Fly!”

Bailey asks for little except to be loved. Most days he divides his time between looking out the window in my office [from my desktop], of course, where he has his own lush blanket, and cuddles and tummy rubs on command.

I’m not sure how I would have made it through the dark days of Jan through March if Bailey hadn’t been at my side. He continues to be a joyous spirit.

Bailey thought New Year’s Eve was the cat’s-meow. Tom wanted flavored water with a sizzle and away we went to find it. Bailey was so excited when 5 Brownie Girls approached and asked if they could have their picture taken with him. Bailey was so-o-o- happy to oblige. After all, what new guy in town meets 5 cute girls on New Year’s Eve that welcome his kisses. His wiggling body and wagging tail encouraged me to get us home to tell Tom of his latest adventures.

As Bailey retold his story, he elected to leave out the part about the Brownie Girls being on a scavenger hunt and that they needed a picture of themselves with a cute dog!

I’m leaving much unsaid here about all that’s happened since I last spoke with you. We’ve had close calls with Tom’s health and never before have I met with such frustration. In mental health quandaries I could always remove Tom from any situation and knew I could keep him safe until I found appropriate care.

The serious medical problems Tom faced included: cardiac, infectious disease, pulmonary, trauma surgeon, endocrinology and more. Tom entered Little Rock Baptist Hospital on January 27th and he’s been home 1 week! Our experience with Baptist Hospital in Little Rock was less than ‘Awesome’ and I’ll be writing more about that in a future blog. I was afraid to move Tom and have him classified as AMA [Against Medical Advice].

What I do know is that the diagnostic overshadowing is the direct cause of the rapid decline of Tom’s body. Our new diagnoses are Histoplasmosis in all 5 chambers of his lungs, COPD brought on by chronic bronchitis and yes, way back Tom smoked for 20 years. [Tom and I have often talked with our friends of the Vietnam era who are dying today from COPD, [brought on by smoking cigarettes]. Daily meal rations, during the Vietnam war, included cigarettes. Then we have the fever of unknown origin that roamed from 101.2 and spiked at 108 for 2 days. His arm had 3 spiral fractures and each was at 45 degree angles going in opposite directions of the other and would never have healed in a compression cast. A trauma surgeon treated Tom a day after he received a new generator and batteries for his pacemaker [they both stopped working while they were in his chest].

Why hadn’t his cardiologist staff scheduled his pacemaker checks at recommended dates? Tom would be dead today if I hadn’t counted the dates and called the cardiologist’s nurse. The pacemaker itself was 100% dead [the batteries] when Tom was admitted to the hospital on the 27th of January. I’ll be talking more about this in a future blog but to add to the tragedy of today’s medicine, we had no idea he had actually been alive because of the back-up generator. Tom would have died at home in a matter of days and we wouldn’t have known why! Tom was off-line before he made it to surgery!

Every available space covered with medical records.

Every available space covered with medical records.

I’ll be discussing some of the horrors of Medicare’s Administrative Rulings as I move forward with blogs this year. Suddenly my own time has become non-existent as my days are spent on the phone arranging care for Tom, reading, indexing and summarizing over 40 years of Tom’s medical records and acquiring all new medical records as Tom’s care continues.


Front Walkway WildflowersI carve out bits of time here and there to enjoy one of my favorite stress relievers. I refuse to take my iPhone to the garden.


I haven’t words for telling all of you just how much I’ve missed communicating with each of you.

My friends, we’ve entered another regulatory age of Medicare. What are your thoughts on this matter?

I’ve spent hours of reading regulatory Federal Registers’ on the matter. It’s not a riveting read but occasionally I unearth a valuable nugget.

As always, I thank you for reading with me. It’s wonderful to be home again.




















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Slice of Life/Caregiving/Unconditional Love
By – Sheri de Grom

I’m desperate. I’ve lost my heart.

I’ve looked everywhere.

Last night in a panic I cleaned everything, and I do mean everything.

At the end table by my favorite chair I shook out magazines, picked up 50 or more Prismacolor Premier Pencils, and placed them in their case where they belonged, sorted reams of research materials I’ve received and not had the time to read. I went through 3 or 4 weeks of mail, picked up my manicure things and still no heart.

Down on my knees I looked under the table and under my chair, behind the table, the windowsill and any number of places nearby, no heart.

I can’t believe it. My heart is still missing and I always find my heart.

Over the years, Tom has been leaving small silver hearts for me all around the house and then he waits for me to find them. Sometimes I’ll find them the next day and it’s never taken me longer than a week.

The silver hearts have never been a once a week deal or even once a month. I never had a clue as to when one might appear and I never knew why with the exception of Tom’s loving me unconditionally.

Silver Heart Running Wild

This time was different–he’d hidden one so long ago, he’d grown worried that I’d tossed it out with the trash. This is the first time he’s ever told me he left a heart and approximately where.

Did my heart go in the big green dumpster? I know it’ll be lonely and still wondering why I haven’t found it like all the others. I cherish each one. They are as important to me as all the gold and diamond jewelry Tom’s designed and made me over the years.

The hearts are unique and I have no idea how many more he’s made. He hasn’t been able to work in his shop for a long time.

As the woman at Tom’s side, I want that heart. It’s something for me to hold onto when the nights are lonely and I wonder how I’m going to keep his breathing going and keep the wounds clean. In years gone by, I often wondered how many times I could bring Tom back to reality after another psychotic break. Today, I pray God will continue to allow me to do whatever it is that I’ve been doing that opens his trachea and allows him to breathe.

Tom continues to fall frequently and I’ve discovered a new way to cope instead of trying to help Tom up immediately. I’ll lay on the floor with him and wrap my body around his. I’ll toss a throw over us for warmth and we often go to sleep. Sometimes when we wake we find we both have the energy to hang onto the furniture and get up one more time.

Tom laughed last week and said, “Isn’t this what we used to do way back when?” I reminded him those memories are as sweet today as they were 30+ years ago.

The laughter presented a gift all it’s own. I can’t remember the last time I’d heard that full throated laughter I’d taken for granted all those years ago.

About my heart–it’s still missing. And, it’s my fault. You see, I’m into pile management and the past few months have been worse than ever.

I’ve been working on a VA appeal for Tom and I to receive help with his care. The paperwork has demanded my attention for 12 to 15 hours a day [yes, I moved back into my workaholic mode] but the decision by the VA will determine how much longer I’ll be able to care for Tom. If we obtain assistance, we should be set to live in our present home until one of us departs this earth.

You might imagine the amount of paperwork I’m talking about when I tell you I’ve had to gather, sort, read and highlight relevant material from his medical records since Nov 1, 1987! That’s a lot of paper and a lot of piles.

The hours I’m working on the VA paperwork seem to consume me alive, heart and all. It’s definitely the reason I haven’t posted a blog since mid-November and the reason I haven’t been around to chat with everyone.

When I do find my heart, it will go on this beveled glass tray Tom made for me wherein he preserved a crochet fancy piece made by my Grandmother Fromm.

Fancy work between beveled Glass

The glass is an exquisite dusky rose with semi-precious stones making up the decorative wire work on each end. This captivating work of art is the perfect place for my hearts.

photo 5b

In the meantime, I wish you and your loved ones the most joyous Christmas ever. May we have Peace on Earth.

I hope to post 2 additional blogs before the end of the year taken from my journal notes of our first Christmas in Washington, D.C. They will close out my 4th year of blogging and relaying to you, my readers, the reality bipolar disorder presents when it arrives at your door.

We no longer worry about bipolar disorder. I watch daily the destruction bipolar disorder contributes to Tom’s pain. It’s the pain of inhabiting his own body wherein there’s no relief. It’s the unforgivable ignorance physicians display when they withhold treatment because an individual has a mental disorder. This is the ultimate stigma determining life and death of those we love.


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ACA/Medical 2015/Insurance/Bipolar
by – Sheri de Grom

An irony of the Affordable Care Act (ACA) is that millions of people have gained access to insurance but their deductible is so high that it’s left them uninsured.

Providers are reporting the largest increase in bad medical debt for people with insurance since the great depression.

Insurance has always been purchased to cover loss. The Affordable Care Act turned healthcare upside down and we see the unfortunate results daily. Healthcare is no longer insurable.

The truth about the ACA is that a high percentage of enrollees have plans with elevated yearly deductibles. The amounts are so high, people report they are still uninsured because they can not meet the deductible.

The rise of high-deductible plans is driving the rise in medical debt. The average deductible for a single person enrolled in an employer-sponsored healthcare plan reached $1,217 in 2014, a 7% increase over the previous year. By 2019, providers could see a 50% decrease in the amount of revenue they will be collecting directly from patients. Thirty percent of that amount, or as much as $200 billion will be written off, according to industry forecast.

Healthcare providers once considered individuals with insurance to be low risk for bad debt. Today, those without insurance are being joined by individuals with high-deductible insurance and they now owe thousands of dollars in medical debt.

New patients are routinely asked if their policy was purchased through the ACA marketplace or if it is employer-backed. If the answer is ‘marketplace’, the patient is often turned away. The medical practice understands the marketplace insurance comes with high annual deductibles and high co-payments regularly leading to uncollectable debt.

Hospitals and physician groups alike are learning they must approach debt collection in a different way than in years past.

Small physician practices do not have as much room for give and take negotiating debt with their patients. They want to maintain the personal touch but the Affordable Care Act has taken away what were once physicians practicing medicine with that hometown touch.

Hospitals and large medical clinics are learning from retail about collecting bad debt:

  • Keep bad debt in-house. Once a collection agency is involved it can cost as much as 33% of any unpaid balance for the agency to manage the debt even if collections are unsuccessful.
  • Pre-screen patients with a short financial form for any service over $250. Reach a payment schedule before treatment and the first payment before the treatment.
  • Try to establish a conversation with the patient regarding their bad debt. Studies have shown the patient will pay part of their bad debt when treated with kindness and understanding.
  • Always when attempting to collect a bad debt, give your employee the power to negotiate the bad debt. It’s better to get $500 cash today than to never collect the $2,500 due.

Collection prospects decreases as medical debt increases. The shocking reality is healthcare providers today are collecting $0.18 to $0.34 on the dollar from patients with high-deductible plans. Once a bill exceeds 5% of household income, a patient’s propensity to pay drops to zero.

You, your families and loved ones have the right to appropriate healthcare. We all must meet our financial obligations but we all deserve to be treated with human dignity. When illness strikes, we all need that extra touch of kindness.

The latest fallout of the Affordable Care Act, on a personal level for me, is that my internist has decided to retire at the end of the year. In his words, “The Administration, Congress and the Supreme Court do not know my patients or how to care for them, medically. I’m the doctor and you are my responsibility. I can no longer care for you in the way I believe is best for your health.”

In the past 40 years I’ve only had one internist I liked as much as the one I’ll have until the close of 2015. They both saved my life with their excellent diagnostic skills. However, I understand the continuing frustration my current internist faces daily. It is indeed maddening. He was recently elected as the best internist in a 21-state region by his peers. I would have gladly added my affirmative vote.

Thank you for your support, friendship, love and the many prayers you bestow upon Tom and I daily.

Many of you have become like family to me and I cherish the notes that arrive by e-mail [even if I don’t answer immediately], the cards that arrive by mail, and telephone calls as if you know when I need them the most. You always ask about Tom and of course the story of how we’ve survived all these years with his bipolar disorder has been the primary focus of my blog from it’s inception. For years I asked psychiatrist for books, journal entries or anything I could read so I would know what to expect from his bipolar disorder as we entered the afternoons of our lives. Now I understand why nothing had been written all those years ago. THE DOCTORS ALL EXPECTED TOM WOULD BE DEAD.

An update on Tom’s health: He’s still bedridden many days due to any number of diagnoses playing havoc with his body. However, on the days he’s able to be up and about; he is able to do so by using the walker.

After 7 months of being mis-diagnosed and having such horrific pain on the bottoms of his feet, we have a new rheumatologist that correctly diagnosed psoriatic arthritis. Unfortunately the oral medications didn’t work and he’s now on a schedule of infusions. We recognize the risk involved but when he feels up to walking, he can do so as long as he has the energy.

The horrendous coughing I talked about in my blog of Aug 30, 2014 may have finally met its match in a new Pulmonologist who continues to work with us. He’s definitely a keeper for Tom’s medical team. The coughing hasn’t stopped but, we now know how to treat it and Tom doesn’t spend the night sleeping on the bathroom floor.

This doctor did much testing and by placing the pH probe for gastroesophageal reflux at the entryway where food leaves the mouth and starts the beginning of its journey to digestion, he was able to determine the initial cause of Tom’s coughing. Tom’s had dozens of pH probe tests in the past but they all read negative because the probe was placed much lower, as is normal for other patients. [Let’s face it, there’s nothing normal about Tom’s body].

Tom has never had any of the symptoms of Gerd or Reflux disease. This is the same as he’d never had chest pains but he was still on the edge of dying from a 100% left bundle blockage of the heart. For me, Tom’s caregiver, I have witnessed years of Diagnostic Overshadowing, which I talked about in my blog of Aug, 30, 2015. As a result of the coughing not being diagnosed and the Gerd not being tested properly and diagnosed, Tom’s trachea ‘(windpipe) the airway that leads from the larynx to the bronchi, which are airways that lead to the lungs’ don’t function. He has developed tracheal stenosis as his trachea is shredded from top to bottom. Twenty-five years of coughing and extreme acid causes Tom’s trachea to collapse without warning and when it does, he must have immediate help. HE CANNOT BREATHE.

This new development has caused a complete shift in my caregiving and I’m learning as I go. Every day I thank God that I can help.

His daily intolerable migraines have become severe and include projectile vomiting, sensitivity to light and all that most of us with migraines know as the major symptoms. His heart problems complicate his migraines and their treatment. We are trying some herbal remedies and I’m open to any non-narcotic suggestions.

I can honestly say Tom’s medical issues are no longer about being bipolar. The physical illnesses attacking his body are a direct result of diagnostic overshadowing. Bipolar disorder is one of his 32 diagnoses we worry the least about. However, we still keep occasional appointments with his masterful psychiatrist.

Until next time, love to all. My blogs have been further apart this year because my responsibilities at home have increased a thousand fold. I have massive amounts of paperwork to prepare both Tom and I for the next phase of our life. However, I hope to be around to pop in with a blog here and there. I’ll also do my best to keep up with reading and commenting with you. I do love our conversations.

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VA/Veterans/Medical 2015
by – Sheri de Grom

Our Veterans Suffered Unbelievable Pain and Died Unnecessary Deaths

Our Veterans Suffered Unbelievable Pain and Died Unnecessary Deaths

The most recent Inspector General (IG) report reveals egregious problems with enrollment data within The U.S. Department of Veterans Affairs (VA). The report identified so many complications it was impossible to determine how many veterans were actively seeking health care from the VA.

Data limitations make it impossible to decide how many now-deceased veterans have asked for health care and never received so much as a reply.

More than 300,000 American military veterans likely died while waiting for health care—and nearly twice that many are still waiting—according to a new VA Inspector General report.

The VA has acknowledged that its enrollment process is confusing and that data integrity and quality are in need of significant improvement.

The actions of a few have wipped out the heroic measures carried on by thousands who care for our veterans.

The actions of a few have wipped out the heroic measures carried on by thousands who care for our veterans.

The changes that have come about are because a whistle-blower reported that more than 200,000 veterans with pending applications for VA health care were likely deceased. The IG report substantiated that claim and others, but said there was no way to tell for sure when or why the veterans died.

Deficiencies in the VA’s information security—including a lack of audit trails and system backups—limited investigators’ abilities to authenticate some issues fully and rule out data manipulation.

As of June 30, 2015, the VA has contacted 302,045 veterans by mail, asking them to send required documents to establish eligibility. To date, the VA has received 36,749 responses and enrolled 34,517 veterans.

The above ratio of numbers represents a wasted expenditure. Would the same 36,749 have answered if flyers had been posted by volunteers at shelters, local markets, and places where veterans gather?

The homeless population isn’t going to answer mail from the VA. Many of them have

We thank our Veterans by allowing them to live under bridges and on our streets.

We thank our Veterans by allowing them to live under bridges and on our streets.

serious mental health problems and others have given up and wonder how their lives could have gone so terribly wrong. We have provisions for the homeless population to receive mail at United States Post Offices but I wonder how many homeless vets are aware of this fact.

Twenty-two veterans still commit suicide every 24 hours. Of those 22 veterans, only 17 had enrolled for services at the VA and the other 5 are unaccounted for. My suspicion is that the number of unreported suicides is much higher due to states not reporting suicides to the federal government. Nor do the states report if the deceased individual had veteran status. We simply don’t do a good job of identifying our veterans who need help. Some don’t want it and others don’t know how to use it.

I’ve maintained my Federal Blue Cross/Blue Shield insurance for 30 years so that Tom and I would never be at the mercy of the VA and Ticare for Life. I’d seen so much that was wrong and had experienced too many bad customer service encounters in my early days of working for the government. I was determined; Tom would never become a victim of the VA system. I wanted us to always have a choice of the best medical care available.

We gave them so many reasons not to trust.

We gave them so many reasons not to trust.

I believe the VA’s low response to the letters they mailed signifies a continued distrust of the VA by Vietnam era Veterans. Additionally, thousands of Iraq and Afghanistan Veterans have had a disturbing reentry into civilian life and enrollment for health care benefits is difficult at best.

The number of veterans who received the letters and have other health insurance is unknown. Like Tom, they would have private health insurance and if they had retired from the military they would be eligible for Tricare payment for any deductible when using their private health insurance.

Federal law mandates everyone eligible for Tricare, Veterans included, must enroll in Medicare Part B. The Veteran would not need to contact the VA for health care services.

There are advantages of being enrolled in the VA and I urge any qualifying veteran to do so. They are building programs for treating the elderly with dignity. The VA has realized home care is less expensive and more beneficial to veterans and family members than nursing home care. The veteran stays in his/her own home and funds are made available for care in the home setting. Are the funds adequate; that remains to be seen.

Gaining access to these funds is not easy. It requires a united front from all caregivers to receive equal distribution of aid and assistance. I will be discussing this in a future blog.

Who will Congress give priority to; the Veteran or the illegal immigrant? We know where the loyalties of the Administration stands.

Who will Congress give priority to; the Veteran or the illegal immigrant? We know where the loyalties of the Administration stands.

If the VA is to survive, changes must be made. Congress promised to put into place regulations to remove those taking advantage of the VA program, e.g., administrators not doing their jobs and many others. The VA will not improve for our veterans until we can give them what they deserve for giving us the best years of their lives.

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Mental Health/Suicide/Caregiver
By – Sheri de Grom

How could dying be more tempting than living? How could such a desperate act seem like a reasonable solution to one’s problems?

BLOG - SUICIDE PREVENTION MILITARY How was I to know that I would be faced with my own suicidal thoughts? I was totally bewildered one spring, when the first stems of perennials were pushing their way through the earth, to find I was suicidal.

Tom was in the hospital to keep him from hurting himself. Somehow, that day, I lost my will to live. Suddenly suicide seemed an option. My endurance had taken a holiday without me.

Morti curled in my lap, purring. “Morti, whatever will I do?” Did he sense I needed consoling? My comfort zone had disappeared. I’d slept last night but my body screamed, ‘no you didn’t!’ My eyes were so dry, a sand truck could have off-loaded into them. No amount of artificial tears helped.

Gazing out the French doors Tom had installed, I watched the quail scurry around my herb garden. The hen, with her soothing coos, coaxed the chicks away from their protective shelter near the rushing brook. The scent of wild pineapple sage wafted through the air.

My mind wandered to the office, and I realized I’d have to place work on the back burner. This didn’t set well with me but I had to find out what was happening to my life. I had an appointment to talk with the lead prosecuting attorney at the U.S. Attorney General’s Office. He’d called me about our Veteran Affairs case, and he wasn’t known for calling anyone. He was used to investigators begging him to try their cases.

He’d understand, but I didn’t want our forward momentum stalled. Arrest warrants were already being issued. I didn’t cope well with postponing things until the next day—not when it came to my work.

It didn’t make sense that I was thinking about postponing my life, forever.

Who could I talk to? Not God. His Word ordained that suicide is a sin. God already knew what I was contemplating that day as I wandered out into my gardens. I felt the breeze caress my skin and tease my hair. The mammoth cottonwood tree played a rustling song, and the brook near our front door reminded me further that even if I left this extraordinary earth, life would go on. Why was I deliberately considering leaving my life when nature could still make me feel so alive?

I planned my own death and my strategy would ensure insurance payments for Tom’s continuing care. It seemed so faultless, that plan of mine.

I would soon be traveling from Fort Ord, California to the Presidio of San Francisco for a meeting. Two co-workers were also going, and I made excuses to ride in the back seat of the car. Some time before I had scouted for and found a location near the Santa Cruz Mountains that seemed ideal for opening the door and jumping from the car to guarantee my death.

Farley jumped up as a tiny rabbit scampered past. He knew he wasn’t permitted to chase the little fellow but he really wanted to take off at top speed.

Farley’s interruption of my thoughts racing in circles reminded me of how uncomplicated it might be to take my own life. I promptly identified with the workings of an irrational mind and how intolerable pain annihilates logical thought to meaninglessness.

The despairing loneliness, the feeling of total uselessness to the man I loved, and the knowledge that life could no longer be the same magical journey we’d once known, made life seem unbearable and intolerable.

I tried putting these terrifying thoughts behind me, but it became impossible. Invincible pain invaded my thoughts, penetrated my rational existence and endeavored to destroy me. Tom’s pain swallowed mine. It was easy to share his anguish and terror.

My world, engulfed by Tom’s illness, was crushing me. I had to find something I could embrace to save my life and not become another casualty of Tom’s disease.

Tom has attempted suicide multiple times. I’m astonished that this wonderful, loving and sensitive man can possibly cope another hour. My first suicide plan of 1988 seems shallow when I look honestly at the lowest point of Tom’s anguish. I continue to discount myself for having the same suicidal leanings.

What I’ve learned about myself is that I grieve for the loss of the Tom I once knew and that

Shattered Dreams

Shattered Dreams

causes me tremendous pain. Tom was the man I’d waited for all my life and then all too quickly, he was snatched away. Yes, he has bipolar disorder but he now has an even larger problem and that’s the physical damage years of medication have taken on his body. Tom has never indulged in illegal drugs or alcohol. Every pill he’s swallowed has been by a physician’s order and now his body has been destroyed.

All of my dreams vanished with Tom’s illness. I’ve learned not to linger over new dreams as they lead to more disappointments. The disappointments lead to depression and the depression to my own thoughts of suicide. As Tom’s 24/7 caregiver, I have to keep myself safe. Who would take care of Tom if I were gone?

I’ve talked with you previously about how invaluable my therapist, Elizabeth Crone, has been in helping me discover how to cope with so many of my life’s losses. When I became a full-time caregiver for Tom, I realized I had to face my own losses:

  • The loss of a professional career I’d worked hard to develop. I was considered the best in my field. I was able to stay on for 20 years but at that point, I had to retire and become Tom’s full-time mental health advocate and director of his medical care.
  • My financial security is gone. When Tom is manic he spends money uncontrollably. This is his one vice and it has nearly destroyed us on more than one occasion.
  • My social activities are gone. We were involved in many activities as a couple and I was involved in several Boards of Directors, but I never know when Tom needs me because I’m the one on call 24/7.
  • I’ve become more a mother than a wife and I miss having my partner by my side. The man I used to make decisions with, the man I could spend endless hours engaging in quiet conversation — I’ve lost all of that.
  • Caregivers the world over need help and the tip of the iceberg hasn’t been touched. I’ll be bringing this subject up more often as time goes by.
  • Tom didn’t ask for this horrific disease and I as his wife have dedicated my life to learning everything I can about it. More literature is becoming available with each passing day.
  • I’ve learned, but not accepted, I’m on first for all matters that keep our household and our relationship operating at whatever optimum level we are capable of having. I want to get it right but I know, I must take care of myself in the meantime.

Once again, thank you for reading with me. Do you have ideas on what might make a 24/7 caregiver’s life easier on a daily/weekly/monthly basis? I’m looking for all suggestions you have to offer.

I appreciate the thoughts and ideas I hear from each of you. Often the thoughts you have to offer me are lifelines I seek in the middle of lonely long nights when I’m battling insomnia.

Have you ever felt as though you couldn’t face one more tragedy, one more blow to your dreams or one more task you must put before your own dreams and aspirations? I ask of you to remember, you are as important as the individual you are caring for and each of us, the 65 million unpaid family caregivers, must be recognized for the sacrifices we make each and every day.

September is set aside to raise awareness of suicide prevention; it is National Suicide Prevention Month.

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Mental Health/Caregiver/Medical Care 2015
by – Sheri de Grom

Imagine my surprise when I read in the March/April 2015 issue of Psychology Network that psychotherapy was in a decline or even in a freefall.

According to a study published in the December 2010 issue of the American Journal of Psychiatry:

  • The proportion of people getting only psychotherapy in outpatient mental healthcare facilities had fallen from 15.9 to 10.5 percent between 1998 and 2007. That’s by more than a third.
  • Individuals receiving both therapy and medications had fallen from 40 to 32.1 percent in the same time period.
  • The number of people receiving only medication had increased from 44.1 to 57.4 percent.

In the June 2013 issue of the Journal of Clinical Psychiatry, researchers reviewed 34 studies of mental health treatment preferences (patients and non-patients) for anxiety and depression and found that people were three times as likely to favor psychotherapy over medications.

I remember the night during Tom’s first mental health hospitalization when he said, [and he was spot on] “I’m not coming home until you agree to see a therapist at least four times. If you believe you don’t get anything out of it, then stop. It will be your choice.” You may read that blog here.

I don’t know what clued Tom into the idea that I could possibly need a therapist. He was the one in the hospital. I was the strong one. The one that could do it all. The one who was rigid about what she ate and who didn’t go to bed until she’d run 10 miles no matter the time of day or night. I was the one with only one female friend because I didn’t trust women and I refused to work in any environment with women. Mine was a man’s world.

I guess you could say Tom recognized several traits I might want to explore and get off my back. It’s 20+ years later and I’ve never once thought of stopping therapy. Until I retired, I had to hide where I was going, but I never thought about stopping. Had my destination been discovered, I would have lost my security clearance, immediately followed by the loss of my job.

My opinion is that medicine alone will not help the depressed, the anxious, the individual with PTSD, the addicted and many other diagnoses. Life’s bumps can and do take over a person’s mind and a good therapist is worth their weight in gold.

I’ve been with my current therapist for eight years and she still doesn’t let me get away with anything.  I can’t begin to explain the depth of my growth since Elizabeth Crone came into my life. If she weren’t my therapist I believe we could be really good friends but she’s far too valuable to me as my therapist.

I love those moments when something we’ve talked about in a session comes together and it doesn’t matter where I am, I understand my new revelation comes from the work Elizabeth and I have done.

The worldview of therapy remains unfriendly and that leads to the continuing stigma which reigns supreme over mental health care.

Within the field of psychology there are numerous forms of sustaining brainwashing against psychotherapy. The Diagnostic and Statistical Manual of Mental Disorders [DSM-V-TR] provides a faux legitimacy to artificially constructed psycho-medical disorders. Big pharmacy has financial, social and political clout which out-classes Little psychotherapy on every measure. Direct-to-consumer ads for psychotropic drugs turn every TV watcher or magazine reader into his or her own personal psychiatrist.

A continuing decrease in insurance reimbursements for therapy, as well as increasing reimbursements for prescriptions, means that if people want therapy, they’ll have to pay for it themselves.

What happened to mental health parity?

Having a therapist the years I worked for the government and ran interference for Tom’s healthcare, both physical and mental, became a valuable tool in my tool box for my own sanity.

My career moved us often and I never had the opportunity to develop a lasting relationship with any of the professionals I saw before I retired. They did manage to hold me together while dealing with a demanding career, difficult step-children and Tom’s illness.

Of the 15 therapist or so I met with, I recognize most of them saw their role as holding me together while I managed a difficult career and cared for Tom. I know they weren’t overlooking my underlying needs; they were giving me what I needed on a short-term basis.

Caregivers Must Have Help.

Caregivers Must Have Help.

I’m positive every full-time caregiver needs a therapist who understands their role in assisting in whatever the caregiver’s complex set of problems might be.

Why do I tell you about my therapeutic relationship with Elizabeth and expand on what a difference she has made in my life? She has set the gold standard for me and I recognize God answered my prayers when I held out my hands in prayer and begged for someone to enter my life who could help me understand me.

I continue to pray for friends who tell me they’ll never spend money on a therapist. They tell me they are never going to talk about their past with anyone. I haven’t changed anyone’s mind and if it hadn’t been for Tom’s ultimatum, I’d still not know why I don’t like water except to drink and shower or why a long narrow shop had the power to keep me out on the street, no matter how much I wanted to enter. I couldn’t fasten my seat-belt before I entered therapy in 1987.

I’m not following the research trend. If I don’t see Elizabeth as often as I did when we first started working together it’s only because we’ve worked hard and have accomplished more than I could have ever dreamed. I only have to look back in my journals to find the person I used to be.

Welcome to fall everyone. I’m looking forward to cooler temperatures and hope to have time to turn the soil and prepare it for the planting of wildflower seeds and much more. I’ve been looking at the seed catalogs for months and it’s time to place my orders.

What are your thoughts? Do you think medication alone is enough for mental health? How do you wish to be cared for?

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Mental Health/Discrimination/Diagnostic Overshadowing/Mortality/Medical Care 2015
by:  Sheri de Grom

My Grandmother Fromm taught me the importance of keeping a journal when I was 8. She said,

My Grandmother Fromm taught me the importance of keeping a journal when I was 8. She said, “It is never simply a record of daily events.”

Why do I continue to question the ongoing discrimination of medical professionals toward individuals with a mental health diagnosis?

I see the defeat in Tom’s eyes when he tells me, “There’s no need to go to the doctor or even try; nothing will change.”

Logo for those of us promoting advocacy on behalf of the mentally ill.

Logo for those of us promoting advocacy on behalf of the mentally ill.

Given our experiences over the last two decades in finding both appropriate mental and physical health care for Tom, I shouldn’t have been surprised by the statistics reported in an exhaustive report, “Morbidity and Mortality in People with Serious Mental Illness.” This report provides a comprehensive review that provides an overview of recommendations and general call to arms by the National Association of State Mental Health Program Directors.

The study outcome – physicians and other healthcare clinicians are responsible for individuals with a mental health diagnosis dying 25 year earlier than those without a mental illness.

This 25 years does not include the number of deaths caused by other problems in the medical community or other deaths related to comorbidities of having a mental illness.

First on the list of ignored illnesses is unsurprisingly, cardiovascular disease. Two large studies from reputable research groups revealed that patients with both a mental illness and a cardiovascular condition receive about half the number of follow-up interventions, like bypass surgery or cardiac catheterization, after having a heart attack than did the “normal” cardiac patient.

Commonly overlooked chronic physical conditions endured by bipolar individuals include: migraines, irritable bowel syndrome and manual heart valve prolapse. No one knows why these diseases are most often connected but ignored.

Most shocking to me are the subtle findings in various studies that deserve special note. Although the numerous studies cover 29 countries, there’s no evidence of a difference based on the source population or geographic region being studied. The increase in mortality reported in all studies maintained a relatively high level of mental health care. Rather than finding a decrease, it appears that the recent improvement in life expectancy for the general population, such an improvement has not reached the population with mental illnesses.

Tom and I have often talked, he would have died long ago if it weren’t for me pushing and shoving the physical medicine department to care for Tom the same as they did for me. I demand the same respect and attention. This past year Tom was misdiagnosed for over seven months for a condition he did not have and if I hadn’t demanded, we’d still be in that deadly cycle. I believe we are beginning to see the light of having a new team for Tom’s healthcare but it’s been most difficult. As his wife and 24/7 caregiver, I would not give up.

According to a review of 4,650 patient profile studies done by the Institute of Psychiatry at King’s College, London from 1990-2000, 0ver 90% of people with a serious mental disorder–including bipolar disorder, major depression, schizophrenia and schizoaffective disorder–end up with a wrong medical diagnosis and are under-treated.

Our experience at yet another ER demonstrates clearly what often happens when an individual with a mental health diagnosis presents for medical help.

Tom had a harsh cough develop a week before Thanksgiving, 2014. He’s had this particular cough off and on for well over 20 years and we cope with it 2 to 4 times a year, every year, since it started. We’ve tried every suggestion tossed our way: every grandmother’s remedy, every witch doctor’s potion, ideas from fellow bloggers and even ideas shared over the garden gate. Nothing has worked.

I’ve accepted we’ll never have a diagnosis for his cough. Tom has undergone extensive testing to include 10 days in a hospital isolation unit where world-class pulmonary physicians tested him for every exotic disease imaginable. At the end of the 10 days they said they didn’t have an answer as to why he coughed or how to treat it. They admitted the cough was alarming but they didn’t know why the cough started or why it stopped. I continue my research with every new respiratory virus reported by the Centers for Disease Control (CDC) [and follow advances reported on old viruses] because I am Tom’s #1 advocate. Giving up is not an option!

The doctors dismissed Tom from isolation to home with an inconclusive diagnosis and no recommendation for follow-up. He doubled over in a fit of deep coughing as he was discharged from the hospital.

What I know as Tom’s wife is the severe coughing is one of the many medical conditions plaguing Tom and thus affecting his health negatively as well as our quality of life as a couple.

When Tom coughs, I grit my teeth, knowing I have nothing in my toolbox to help him. I don’t play the helpless wife well. I want results and I want them now! It’s a vicious circle day in and day out. The non-stop cycle of coughing throws him into dry heaves and many nights it’s easier for him to sleep on the bathroom floor. He no longer has the energy to make the trip from our bed to the bathroom.

What I do know is that Tom didn’t develop the cough until approximately 5 years after the

Medication Prescribed - Getty Photo

Medication Prescribed – Getty Photo

start of massive amounts of psychiatric medications. One of the advantages of having a detailed journal is being able to compare the specific start date of new medications and types of therapies along with any new medical symptoms.

What do I do now? The cough is severe: Tom falls out of bed and out of his wheelchair from coughing. He loses his balance from simply walking across the floor. I’ve had to make accommodations to insure he doesn’t get hurt while falling. Using a walker strips him of his dignity. My proud American soldier standing tall with squared shoulders beats himself up and I do what I can to ease the burdens haunting him.

Scooter loved to hop on Tom to check on the breathing process.

Scooter loved to hop on Tom to check on the breathing process.

At home, my precious Miss Priss, has become Tom’s safety net. Scooter, Tom’s shih tzu and constant companion is terminally ill and while Scooter still sleeps next to Tom, Scooter knows he can no longer be Dr. Dog for his master.

Miss Priss has been my constant companion for the past 8 years. She has a new job now. I rarely see Tom that my girl

Miss. Priss aka Lady Lansdowne Priscilla has taken on new duties.

Miss. Priss aka Lady Lansdowne Priscilla has taken on new duties.

Priss isn’t at his side. Because of Prissy I’m able to leave the house and work in the garden. If Tom needs me or if she even thinks Tom needs me, she bounces to the door and barks for me to come immediately.

I beg doctors to prescribe something to relieve Tom’s cough and they say, “I don’t feel comfortable prescribing anything, not with everything else he’s taking. How about gargling with warm lemon water?”

I want to scream and Tom will bow his head and say, “Please, just let me die.”

I spent 2 full days calling Tom’s doctors asking for help for his cough. I had to reach someone before all offices closed on a Friday night in late November, 2014.

Again, no one returned my calls and we were left at the mercy of the emergency room.

I’ve never believed a doctor should be fined by Medicare. However, if there is sufficient proof of notice that a patient requires urgent care and that patient gets no response from their physician shouldn’t that physician then be fined the amount Medicare has to pay for the ER visit and all ancillary charges? Those physicians, not returning my calls, were all on Tom’s medical team and had been for many years. The indifference I sensed drove me over the proverbial edge. Each of them knew of Tom’s failing health.

It was at this point in Tom’s treatment that I started putting together a new treatment group of specialists for the man I love. We’d gone through medical hell for the past 6 months and little did I know we had another 6 months ahead of us. Our saving grace was a top psychiatrist at the VA. He is still #1 on my list of doctors to ask what is best for Tom. He’s shown more respect and caring for Tom than any doctor we’ve had the pleasure of meeting and working with.

We’d discovered, over many years of trial and error, that Robutussin with Codeine would stop the violent bouts of Tom’s coughing. It allows the reflex muscles that cause the violent and non-stop cough to relax. Tom can return to living a life without constant dry heaves, but his body remains so weak that he collapses into himself whenever he stands up.

What we didn’t know until [6 months later] and through constant searching for a physician that honestly cared is that the years of Tom’s harsh coughing has caused such erosion of his trachea that it collapses and he cannot take the amount of air he needs into his lungs. I am enraged at the ongoing neglect demonstrated by the medical profession and by their refusal to help him.

The two primary specialists I tried to reach that Thursday and Friday in November, 2014, both knew the cough suppressant worked for Tom and that he was not a drug abuser. The only thing they had to do was call our local community pharmacy and activate a prescription kept on file for just such emergencies.

Not one doctor instructed his nurse to pick up the phone and place the call that would spare us the ordeal of the ER. I couldn’t allow the coughing to continue. Tom hadn’t eaten in well over a week, he could no longer walk unaided and his breathing was labored. It was obvious, none of Tom’s physicians were willing to help him and his psychiatrist couldn’t.

Here we were with the best health insurance available to anyone in the United States plus eight doctors on Tom’s acute care team and we couldn’t obtain medical care anywhere but the ER. Isn’t this what the so-called Affordable Care Act [Obamacare] was supposed to eliminate? The supporters claimed we would no longer need the ER. Surprise, the writers of the 2,000+ page document need to go back to the drawing board. But, I digress.

Conway, Arkansas Regional Medical Center

Conway, Arkansas Regional Medical Center

Arriving at the ER, Tom was placed in a transport wheelchair, the type without arms. I advised the intake that the transport was a potentially hazardous situation but they ignored me. Their behavior was nothing new. From Tom’s first ER visit all those years ago in 1987, we’ve been treated as if we knew nothing.

A mask covered Tom’s mouth and nose and perspiration gushed from his body. He’d coughed so long and so hard, he’d given up. I’d seen that look

Google Image - Lightweight Wheelchair

Google Image – Lightweight Wheelchair

so many times before. Your face can flat-line the same as your heart.

The five patients in the waiting room appeared as if they had been triaged by the intake nurse. Nothing was happening. Why the long wait?

Crash! Tom’s limp and coughing body tumbled forward out of the transport wheelchair onto the cold tile floor.

Why couldn’t anyone see this was an emergency? This accident should not have happened. I was horrified.

How could emergency room care be worse now than all those years ago when we frequented them due to Tom’s episodes of suicidality?

The answer escaped me that night as my mind raced. How can I help the man I love? I couldn’t take him home. We had nowhere else to go. Nowhere else to turn.

It hit me, it’s not just the doctors ignoring individuals with a mental health diagnosis, it’s everyone in the healthcare industry. Once an individual’s medication list is revealed during intake, the presence of a mental illness is obvious and discrimination begins.

From the moment I checked Tom into the ER on that dreadful night in November, 2014, he was labeled mental. The entire staff overlooked all of his other diagnoses. They didn’t care that his blood sugar was well over 400 because he hadn’t been able to keep a bite of food or liquid down in over a week. They didn’t care that he’d had a stint inserted in June 2014 because his previous heart surgeon neglected to tell us that his left artery was 100% blocked! Had we stayed with that particular surgeon, Tom would have died from what’s called the widow maker – cardiac arrest.

This discriminatory neglect by the medical community has become so severe, it now has a proper name. It is called diagnostic overshadowing.

That night at the ER, I knew we were being relegated to the same treatment that we’d received all those years ago in 1987, when we were seeking psychiatric care for Tom. This night we were seeking medical care but nothing had changed. We were being treated as second class citizens.

Why does this happen over and over?

After 1 and ½ hours we were taken to a treatment room. The nurse asked if Tom could walk. Where did she get that idea? After all, he was in a wheelchair and he’d already fallen once. Where were her eyes? Where was her medical training? Where were her human sensibilities? He didn’t have the strength to stand up.

We were taken to what might have been a storage closet in years gone by. Was Tom’s cough so worrisome they didn’t want other patients concerned about possible diseases on the premises? Unlike every other ER treatment bay we’d experienced, to include this same hospital, the room we were in was nothing like where we were now.

The nurse asked Tom to stand to see how stable he was and again, he collapsed into himself and hit the floor.

Three hours later the nurse returned to take Tom’s vitals. He was shaking so hard she couldn’t get an accurate blood pressure read, heart rate or other simple chart information.

Another hour passed as Tom gasped for every breath. His entire right side was shaking uncontrollably and I’d had enough. I went to the nurses’ station and found Tom’s nurse chatting with an EMT. I said, “I suggest you get the doctor if he wants to see my husband before convulsions take over his body!”

The ER doc was sitting with hands behind his head, kicked back in a swivel chair with feet on what should have been a sterile counter.

How dare he?

Ten minutes or so passed before the doctor made his way to our room. By now our little closet seemed like a holding cell for entry into hell.

The doctor burst into the room as if rushing from another urgent event. I noted his perfectly pressed black wool trousers and monogrammed French cuffs. His shirt, obviously not off the rack, hugged his body under an oh-so spotless and starched long white coat. This doctor was about to go off a 12 hour shift and didn’t have a wrinkle or a hair out of place. He could easily walk into a fashion shoot and be the go-to man for gallant, rakish and debonair.

The physician must have stayed the GQ man of the day by not getting close to his patients. He didn’t approach the narrow gurney my husband had been laying on for over 6 hours.

The doc turned to me and asked, “What do you need?”

“My husband requires the skills of a qualified physician!”

“Then let me phrase it this way,” he said, “What do you want?”

“I want a prescription for Robutussin Cough Syrup with Codeine.”

“What makes you think your husband isn’t having a panic attack?”

I couldn’t believe he had the nerve to ask that question. “I know panic attacks from personal experience and from going through them while Tom fought his own demons. If I’d thought this was a panic attack I have enough medication to treat it at home.”

The doctor didn’t say another word. He wrote the prescription as requested plus one for antibiotics (which we didn’t need) and signed off on Tom’s chart. The ER doc evidently hadn’t read the latest guidelines from the Centers of Disease Control regarding the over prescribing of antibiotics or the warnings from the FDA and various other governmental agencies.

Compliments of Google

Compliments of Google

In keeping with the new 2015 Medicare ruling of measuring quality care, this was the first time we had used Conway Regional Health System and had not receive a survey summary on how well our visit had gone. I found that interesting as we’ve received a survey for routine episodes such as lab procedures and a mammogram since that date.

Once again, thank you for reading with me. Do you have an opinion on why the medical establishment continues to ignore the needs of the mentally ill? Are you hopeful the current medical treatment of those with a medical condition and a mental illness will be equalized?


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