THE WHEELS ON MY CAR GO ROUND AND ROUND

Self-Care/Medical 2017/Caregiving

YOU ARE NOT ALONE

I know I’m not alone in this business of caregiving but it can be a lonely life. I fight to stay out of that hole of despair. It’s not good to look back on ‘what might have been.’ Those days aren’t going to happen and I must close the door. I need new and realistic dreams. My dreams must have the possibility of coming true.

Seventeen percent of all caregivers in the U.S. are caregivers of Veterans. Seventy percent are women caring for their spouse or partner while one in four cares for their Veteran son or daughter.

It wasn’t until tax time this year that I added the miles we drove for Tom’s medical appointments. I found it hard to believe we’d driven 30,000+ miles within a 60-mile radius when I added the 2016 numbers. I can’t seem to shake the idea that 30,000 miles would make a magnificent vacation.

The issue with Tom’s many appointments is that it tears up my entire day and I accomplish nothing else. Unfortunately, there are the daily living requirements that go

NO TIME FOR A SIMPLE CUP OF COFFEE.

undone. Sometimes pumping gas for the car seems like one task too many. Preparing another dinner, doing the laundry, paying the bills and other household maintenance requirements overwhelm me.

Tom now has 37 chronic conditions monitored by 15 specialists and while I’m happy with his medical team, it still means we touch base with each of them every month. Physical therapy adds on 3 days a week.

Along with Tom’s many medical appointments, he was hospitalized for 182 days in 2016.

Caregiving doesn’t stop and with each new decline, I find myself taking on new and unexpected roles.

I used to be the princess that never had to grocery shop or cook or pump gas or so many other mundane tasks and now, they all fall under my domain. The princess went to a job she loved every day without a single thought of what all went into the maintenance of a well-run home.

There are many aspects of caregiving that require extra time. I miss blogging. I miss talking with my blogging and other friends. Being a caregiver can be isolating and it often seems my whole life has been taken over 100%.

One of my main sources of enjoyment has always been reading and that pastime has virtually been absent the last year. My ability to concentrate is gone and I want it back.

This world of caregiving I’ve entered with Tom’s physical ailments is totally different from the caregiving responsibilities I had as a mental health caregiver. They each present different challenges.

In the upcoming months I’ll be talking more about caregiving and hopefully pass on some tips you’ll find helpful. In the meantime I’ve taken positive action that qualifies us for more assistance through the VA.

Every available space covered with medical records.

In January 2015 I began the process of going through 50 years of Tom’s medical records. This included all of his active duty records and all medical records for the 30 years since he’s been out of the military. I spent 12 hour shifts going through the records, combing out anything that could possibly be active duty military related. It also included the worsening or degeneration of any condition Tom had when he discharged from the military.

After a year of consolidating the records into appropriate categories, I contacted doctors for specific statements as they related to Tom’s treatment and current condition. With letters and supporting medical records compiled, we submitted the disability claim.

After a number of months my hard work paid off and Tom’s increase in disability rating provided us a few more benefits in the home. These numbers determine our eligibility for:

  • Respite care in the home for 6 hr increments up to 40 times per year.
  • A respite aide visits the home twice a week for 2 hrs to help Tom in any way he needs assistance.

I’ve finally agreed that I can’t do it all and have set in motion 3 game changers for myself:

  • I’ve hired a professional to mow the lawn.
  • I’ve hired professional housekeepers to deep clean once every three weeks.
  • I’ve hired a team of professionals to help me redevelop my many gardens into the same number of gardens but all requiring minimum care. My desire is to stay on my feet and
    Provided by Healthy Place.com

    I ONLY THOUGHT I HAD TO DO IT ALL.

    not fall this year as well as be available when Tom needs me. I also plan to find reading and gym time among the many hours I used to spend among my flowers. I anticipate it will be a tough transition.

I can breathe now that I’ve recognized I can’t do everything myself and frankly, others are well trained to do tasks I always required of myself. We have fabulous friends willing to chip in and help but they have their own lives to care for. We’re all reaching that age when we can’t do what we were once able to accomplish.

For blogging, I know I’ve said it before and I’ll say it again. I want to blog again on a regular schedule. But to me that also means I not only visit your blogs and read plus comment but also reply to whatever you may comment on my blog.

Do you struggle with staying caught up? Do you have a magic answer?

I love you all and so appreciate your ‘likes’ and ‘comments.’ I hope to see you around and thank you for reading with me.

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CONGRESS HAS A HARD TIME

Older Female Veterans/Continuing Resolution/ Woman’s Opinion
  By – Sheri de Grom

 

Congress has had a hard time doing its job for decades.

From time to time they pass legislative funding that covers only a short period. Are they afraid they’ll have buyer’s remorse if they fund government for an entire year?

What they are doing is called a continuing resolution and in my opinion, an unacceptable practice.

I talked last week about healthcare improving for younger female veterans. However, there wasn’t enough funding to include the broad range of women Veterans populating the needs we have today.

The 20 years I worked for the government, I had to turn in a complete yearly business plan with a profit and loss statement. I made sure I never had a loss and I budgeted close to the ‘bone.’ Neither did I believe in rushing out to spend left over money in the final quarter to use up all the money appropriated my account. This is a bad business practice; one carried out by thousands of department heads government-wide.

For a large government agency to operate within the bounds of a continuing resolution is idiotic at best and a ‘perfect storm’ for management. Although directors of programs, such as mine, were required to complete a yearly business plan, I never knew how much money I had to operate my department for a full year.

I cannot depart this subject of continuing resolution without mentioning the harm it does to the morale of employees. Year after year employee job security is damaged and that damage is cumulative.

For the purposes of this blog, older female veterans deserve better than patchwork funding for the care they rely on. [All Veterans deserve equality within the Veterans Affairs Administration).

The Veterans Administration has known for decades that older women veterans present unique challenges but they turned their collective heads and minds to look the other way. They knew the improvements they were making would improve healthcare for younger Veterans but not the female Veterans of Vietnam and Korea.

Shurhonda Love, DAV Assistant National Legislative Director, opined, “We’ve known for a long time how different the medical needs are of women veterans compared to the general population of women. Now we have the data to back it up and ideally for the future of women veteran’s healthcare.”

Women Veterans who served in Korea and Vietnam are facing special challenges as they grow older. There’s a wide discrepancy in the needs between aging women veterans and  non-veteran women.

Women’s Health Initiative (WHI) reports women veterans 80 years of age and older reported significantly lower-scale scores in perceived health, physical function, life satisfaction, social support, quality of life, and purpose in life compared with non-veterans of the same age.

Older women have a problem getting service-connected care or disability because they never went to the doctor when they were on active duty. It was taboo to go to medical call if they planned on having a career in the military. At best, it would be 2 or 3 years between sick call visits.

This population deserves the attention of The Veterans Administration. I propose by age 65, if a female veteran has not determined her eligibility for services with the VA, the VA provide, at no cost, a representative to walk her through the system to determine her eligibility for care.

If eligibility for care is identified, the VA representative will register the woman through the “My Healthy Vet” at www.myhealth.va.gov. This site is where everything begins within The Veterans Administration for a veteran. I propose The Veterans Affairs representative be free to continue to work with many others needing assistance.

Tom and I together have registered many veterans [both men and women] and the time involved to reach that first appointment is a small investment considering the difference in lifestyle it provides veterans.

The appointment with the primary care physician should include all labs, x-rays and appointments with specialists.

Our female veterans do not deserve to be homeless and without medical care. The Veterans Administration has a place for them. Let’s give them their fair due and welcome them home properly.

Thank you for reading with me.

 

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IS IT A PIPE DREAM OR IS IT REALITY?

Female Veterans/The Veterans Administration/One Woman’s Opinion
By – Sheri de Grom

Is it a pipe dream or a reality that VA women’s health care is more proactive in some areas of care than the private sector?

Efforts have been made to integrate women’s healthcare into its own department at the VA. This approach allows the veteran to get comprehensive and integrated care from a team. All providers would have access to the Veterans’ records and in an ideal setting, can collaborate with each other.

In fiscal year 2014, 88 percent of VA female patients received cervical cancer screenings versus 74-76 percent of patients in the private sector. Only 60% of Medicare patients were screened.

Eighty-six percent of VA patients received mammograms when recommended compared to 69-74 percent in the private sector.

The number of women Veterans using The Veterans Health Administration care has more than doubled since 2000 to more than 500,000 today.

Comprehensive health services available to women Veterans today include primary, specialty, hospice/palliative, mental health, infertility, gynecology and maternity care services including 7 days of newborn care.

Pain management is being added to some Women’s Health Care Programs and hopefully it will be nationwide soon.

The Phoenix VA has recently started an eight-week mindfulness-based group training program for pain management that is specifically tailored to the needs of women Veterans. Women receive a 90-minute orientation that covers the differences between acute and chronic pain, validates the many adverse impacts of chronic pain on women’s lives, and provides education on mindfulness as a vehicle for improving function and quality of life despite pain. The “Breathe, I’ll Be OK” program is based on years of clinical research and practice regarding chronic pain, mindfulness-based approaches for chronic pain, and women’s health. It includes a focus on social relationships and unit support, as well as stretching, movement, self-pacing, control and acceptance.

I’m impressed with the progress The Veteran’s Health Administration has made with their Women’s Program. They have a million miles or more to go, but for now, it’s progress.

If you or someone you love needs help getting access to VA health care, contact the Women’s Veterans Call Center at 855-VA-WOMEN – it was created to provide women Veterans access to services for which they may be eligible and is staffed exclusively by women.

Again, thank you for reading with me and for your concern for our Veterans. They continue to play an integral part in our nation’s defense.

 

 

 

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BAD MEDICINE – HOW DOES IT BEGIN, WHERE DOES IT END?

Obamacare/Medical 2016/One Woman’s Opinion
By – Sheri de Grom

Dear Readers, I wrote this blog last Oct and found it sitting in my draft folder waiting for a picture or two to be added. The medication I write about in this blog had serious side effects. The medication attacked Tom’s kidneys and he’s now in stage 3 kidney failure and just as he was gaining a bit of strength in his legs, the medication zapped most of what had been gained. However, as the New Year begins, we have much to be thankful for. We were home together over the holidays and that doesn’t happen often. We cherish each and every time.

  • * * *

It’s Oct. 31, 2016 and instead of writing in my journal, I’m writing to you, my fellow

Baptist Hospital, Little Rock, AR

Baptist Hospital, Little Rock, AR

bloggers.

I’m sitting at Tom’s bedside wondering how many things can go wrong with this hospital admission and praying the tragedies will be minimal.

It doesn’t matter who I talk with in this healthcare setting.

When I ask medical staff what they believe is wrong with our healthcare today, they are ever-so-quick to reply “Obamacare.”

I always ask for additional thoughts and they look at me incredulously as if, ‘isn’t that enough?’

I agree it’s more than enough reason. Healthcare as we knew it is gone and I don’t expect it will return in our lifetime.

Once the bureaucrats made mincemeat out of our healthcare, medical providers perhaps thought they had free reign to do whatever they wanted. Doctors, nurses, researchers, etc. have their hands tied to practice real medicine. Is that when the morality of those practicing medicine broke down? Could frustration be the cause?

Not everyone fell to despair. There are those that retired or changed professions. There’s my internist I’d respected above all others who retired because he couldn’t care for his patients the way he wanted. One of Tom’s cardiologists went into research and my 2nd internist said the heck with all the paperwork and is now in charge of tele-medicine for The Veterans Administration.

Good can still be found in the medical profession the same as the princess who’s still looking for her prince. You have to kiss a lot of frogs before you find the perfect medical professional to serve on your team.

We now have another hero in our world of medical care for Tom in conjunction with Tom’s psychiatrist at the VA. Now, Tom’s pulmonologist is also our hero. He’s picked up the medical pieces as Tom’s previous infectious disease doctor dropped the ball and didn’t monitor his infection properly.

Everyone talked about the former doctor’s ego but I never thought it would get in her way of treating Tom to the best of her ability. She was not following the standard protocol for keeping an eye on the progress or lack thereof of fungal growth. Unfortunately for Tom, the medication she prescribed hadn’t helped; the fungal infection kept growing and choking off Tom’s ability to breathe and swallow.

Had she followed the standard protocol, Tom and I could have avoided a mountainous source of pain and agony. The protocol calls for once monthly x-rays and tests and she wrote Tom a prescription and said come back in a year! He could have been dead by then or the disease would have consumed his entire body considering the comorbidities he has. She didn’t have the magic bullet to fight this horrific fungal infection [histoplasmosis] and especially since Tom’s immune system is shot.

Tom’s pulmonologist graduated from the University of Damascus, Syria and followed with a fellowship and teaching post in London. I asked why he didn’t stay and practice medicine in London and he said, “I took an oath to help my patients. In England, everyone goes on a waiting list and then they die.” He further told me Tom would have been dead years ago under any other healthcare system than ours.

I have no idea what I would have done with this episode of Tom’s illness if the pulmonologist hadn’t been available. He was to leave town with his family for a month’s Mom, when does Dad get to come home?vacation but he sent them ahead of him and came in to see Tom daily and sometimes twice a day. He’s a doctor who means what he says and then sticks to it. He also doesn’t care about Tom being bipolar and he likes the idea that I read and stay current about Tom’s many medical conditions. To win me over completely, he remembers my Bailey’s name.

We now have a new infectious disease team associated with St. Vincent’s of Little Rock and Mayo Clinic plus a new endocrinologist. We’re in the process of putting together a new cardiology team for Tom.

There’s no hope any of the new doctors will make Tom well but I do have expectations that they won’t kill him and they will help us make the right treatment decisions for him.

The inadequacies of Baptist Hospital of Little Rock and its staff never cease to amaze me. Tom was a direct admit on Friday and the admission to the floor took 5 hours. The room was supposedly ready before we left the doctor’s office [15 min. away] 6 hours earlier. Direct admits are sent to the floor immediately as the basic medical information has already been transmitted to the hospital and the only thing I should have had to do was sign the paperwork giving permission to treat and agreement to pay for anything our insurance didn’t cover.

On an earlier comment someone asked why we didn’t use another hospital and I’m working toward that goal. We’re stuck with Baptist Hospital of Little Rock now because that’s where Tom’s pulmonologist makes rounds. We didn’t want a hospitalist caring for Tom as we’re in the process of building a new team of specialists.

A main requirement for the new team is that they do rounds at a hospital where we’ve had good experiences. However, I’ve heard that hospital is hurting in customer satisfaction since we were there last. What is a caregiver and a sick patient supposed to do when care becomes so advanced it can no longer be provided in the home?

Tom was in the hospital Oct. 28 – Nov. 4, 2016 receiving daily infusions of liposomal amphotericin. He’d already been on voriconazole for 8 months and his histoplasmosis was worsening the entire time.

It seems every new medication comes with its own myriad of problems. The liposomal amphotericin is an old drug and is both expensive [over $1,000 per IV bag] and toxic [Tom’s kidney’s have reached their tolerance limit].

While Tom was in the hospital the doctors ordered a daily infusion for 7 days. The horrifying reality is that the nurses hung 3 of the 7 bags but never turned them on. Tom missed those doses and the next shift to come on threw the room-temperature bag in the trash.

I can hardly wait to receive an itemized bill for this hospitalization. We saw 3 bags hung and then all 3 were thrown in the trash. Is it any surprise health care cost so much? I will be reporting this expenditure to Medicare. It’s a minimum of $3,000 wasted medication plus 3 days hospital rate of his being an in-patient. The hospital deserves to hurt on the bottom line for such negligent behavior.

I stayed at the hospital for hours on end and during 1 period it was 5 ½ hours between the time one aid came into his room and then the next one. It is inexcusable to leave any hospitalized patient alone for 5 ½ hours.

I know to stay close to my patient.

I know to stay close to my patient.

Tom’s a fall-risk and they didn’t want him getting out of bed alone. However, he’d waited 2 ½ hours one night for someone to help him to the bathroom. No one came.

Tom got up by himself and of course he fell, even using his walker, as they had cables strung across the room. As a result of the fall he has 4 broken and 2 bruised ribs, a gash over his left eye and a twisted right wrist.

At the one week mark of infusion therapy the doctors decided Tom could have the remainder of his infusions at home and a Home IV Specialist Service would deliver the supplies.

If I only relay one message in this blog post, it is this:

TELL THE SOCIAL WORKER NO

         The social worker told me I would have to give the IV Therapy to Tom myself and they would teach me how. I immediately told her, “NO YOU WON’T!”

She insisted it would be no problem because Tom already had an internal jugular central venous catheter placement with 3 lumens. She continued, “We’re sending you home with an Anaphylaxis Kit so you have nothing to worry about.”

“No, No and No. What part of No don’t you understand? Are you telling me that Tom could go into anaphylactic shock when he’s getting this infusion?”

“Yes, it happens during the first 15 minutes of treatment if it’s going to happen.”

I’d had enough. “Go review our insurance policies and figure out where Tom will receive this necessary medical infusion and who will administer it. IT’S NOT GOING TO BE ME.”

Remember, the doctor had written the care plan for Tom and it included at-home infusion therapy. The orders did not say who or how it was going to happen.

You have the right to say no. The medical order has been written and “they” cannot leave the patient untreated. Trust me, they’ll think of something, they have no other choice.

You have a choice, they don’t. Use Your Voice.

All last week, 7 days, Tom received his treatments here at home. It wasn’t all smooth sailing but once the problems of who/what/when were worked out, there were no problems.

Imagine being responsible for medicating the love of your life and knowing you faced the possibility he’d die in 15 minutes. That wasn’t something I was willing to sign on for and I don’t want you to think you might have to do it either.

I’m learning a lot on this journey with Tom [although I would have been willing to learn the information and pass it along without involving Tom and all the stress and agony that comes with it]. I’m current with most of the Federal Registers governing what someone can and cannot make me do and I’m sticking to the few battles we’ve won in this medical care nightmare.

In my opinion, we’re going to see a lot of change in the coming months.

I thank each of you for reading with me. I always appreciate your time.

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Changes to WP Reader~

Thank you Cindy Knoke for bringing us this valuable information.

https://en.blog.wordpress.com/2016/12/14/reader-refresh-2017/

I had to search to find this. Are you aware of the changes to the WP Reader? They are compressing and chopping posts in the Reader to accomplish what they call “streamlining” so the viewer can scan more posts more quickly while seeing less of your content in their reader. What WP is doing is giving your post much less than half the room it used to have in the reader, sometimes only two lines of text if you don’t have photos.

They are also now inserting blogs they promote in your Reader. So they are taking up the room they are saving by compressing your posts in the Reader with blogs you are not following and they are promoting.

This seems manipulative and non-transparent on WordPress’s part and not in the best interest of bloggers.

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CHRISTMAS DAY AND COLD CONCRETE WALLS

Bipolar Disorder/Mental Health/Slice Of Life
By – Sheri de Grom

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."This blog is a journal entry dated Dec. 25, 1989, Washington, D.C.

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.”This blog is a journal entry dated Dec. 25, 1989, Washington, D.C.

Goodwill toward men—my first thought on Christmas morning.

Asilomar Beach - Photo by Tom de Grom Our Calif Dream

…..

No, Sheri. You will not feel sorry for yourself. This is your life and welcome to it. You made the decision to move to D.C. The decision that moved you away from the central coast of California and everything plus everyone you loved.

My only companion for the day would be Farley, our beloved shih tzu, and we were going to make the best of it. It had stopped snowing sometime in the night, and I was grateful.

I wasn’t pretending that I had Christmas spirit. Not a single ornament dressed the house. I wanted Tom, not tinsel.

Christmas had always been my favorite holiday. I’d loved the excitement and anticipation, the gift wrap and adornment, the music and traditional activities. But, like Tom, Christmas had vanished.

Christmas Decorations Remained In The Attic. I'd decided to live with memories of days gone by.

Christmas Decorations Remained In The Attic. I’d decided to live with memories of days gone by.

I’d promised Farley we wouldn’t listen to Christmas music today. Not one single song. But, who am I trying to convince? The telephone startled me.

“Hello?”

“Mrs. de Grom.”

My heart dropped and I gulped, “yes.”

“This is Nurse Decker from the mental health unit. We have a situation and . . . uh . . .”

I interrupted, “what do you mean?”

“Mr. de Grom is . . . well . . . he’s . . .”

I couldn’t stand her hesitation. The charge nurse of a metropolitan mental health unit didn’t want to tell me she had no idea how to care for my husband. My mind raced to past hospitalizations.

It sounded like psychotic breaks that Tom had experienced before but I couldn’t be certain. Not over the phone. What if it was something else?

“Nurse Decker, please keep my husband safe. Do not leave him alone. I’m on my way. The drive is about an hour but traffic might be light today, with it being Christmas.”

The charge nurse, with obvious relief in her voice said, “Thank you, Mrs.
de Grom. We’ll see you soon. Drive carefully.”

Farley shivered beside me. “Come here, fellow.” Picking him up, I held him close as I went downstairs to grab a diet coke. I didn’t have time to make coffee.

Farley, a California guy, wasn’t eager to go out in the snow. He made quick work of trip. I wrapped him in a towel and continued talking while I raced upstairs.

I had no time for a shower. That would come later, Tom needed me. I glanced at my face while brushing my teeth and not only declared it a hat day but noted my face had lost a ten-round boxing match with my pillow last night.

Impossible, impossible. There were yesterday’s jeans I’d worn last. I pulled them on. Where were my shoes? I moved slowly, or so it seemed, as if on foreign ground, but this was familiar territory. I’d been here before. Racing to Tom. My shoe, there it was. Under the bed. A shirt—my sweatshirt on a chair back, I pulled it over my head. This was serious

Farley followed me as I snatched my glasses, a hat, gloves, bottled water and finally my coat. “Farley, I’ll call Cecelia for you. Merry Christmas, buddy.”

Merry Christmas. Who said? This was so not right.

Still rushing, always rushing—I threw myself behind the wheel of the car and remembered to wish Baby Jesus a happy birthday.

Crazies were on the road. Where were they going? It’s Christmas, I wanted to shout at them. Why aren’t you home with your families? I’d thought I’d make good time but with the snow, it was a mind-numbing hour’s drive.

I’d noted the absence of holiday cheer with no Santas driving trolleys at the hospital. I must stop comparing everything in my life to the way it was before I’d made the decision to move us to D.C. Not only was there no trolley, Santa or not, it was twenty dollars to park my car and ten dollars every hour thereafter. Oh, the joy of city life.

Running through the hospital, I sensed a lack of visitors in the corridors and that made the humming of the surveillance cameras more noticeable. Were those blinking red eyes tracking my every move?

At the tenth floor, I hit the buzzer and the locked doors of the unit opened. The charge nurse waited.

“You must have seen me coming. How’s Tom?”

She sighed, “I’m glad you’re here. We can’t do anything with Mr. de Grom. Could you see what you can do to calm him?” We walked to Tom’s room. No longer was anyone insisting I only have contact with my husband in the common area of the hospital, as they’d done all those times before.

Tears pooled in my eyes. Tom had torn out huge chunks of his thick salt and pepper hair, his hands were bleeding and his eyes had rolled to the back of his head.

Every time he’d been hospitalized we’d experienced similar episodes but none as severe as this one. Why had it taken me so long to get here? How long had Tom been in distress before they’d called?

“Could you move my husband to a quiet room? I’m concerned for his safety if he stays here.” The staff quickly complied with my request.

The quiet room was nothing more than a padded room with the bare essentials. The charge nurse had already told me she didn’t know how to help Tom. I immediately asked her to call his psychiatrist with a combination of medications and for them to be administered intramuscularly.

Unlike on a Hollywood movie set, no one had rushed in to plunge a needle into Tom’s arm or thigh to turn him into a zombie. They’d waited for me to ask what I’d historically witnessed before they called his doctor. I was grateful for this courtesy. Other hospitals Tom had been in would have drugged him first and asked questions later.

I hated the quiet room, but at a time like this, there was no other alternative. The concrete room, painted off-white, contained only a mattress bolted to the floor. The mattress had a triple-stitched sheet attached to the bottom and an airless pillow at the top. A ceiling corner-positioned camera fed images to the nurse’s station. Steel secured by two large sliding deadbolts made up the construction of the door. The one window in the door was of the same material used in airline windows.

I kept asking myself, is this the impetus behind the saying, Patient, Heal Thyself? Tom was in a mental health facility where psychiatric nurses are, inconceivably, relying on Tom, the patient, and me, his wife and caregiver, to bring him back to reality. The nurses all looked astonished and paralyzed.

He rocked back and forth on the mattress on the floor. I held him in my arms and spoke to him as one might to a small child. I prayed as I talked that the sound of my voice and my love would reach him on some level, and his mind would escape the black hole it had sunk into once again. I wondered how many times we would be capable of falling into this sinister, dark hideaway of never-never land and still come out whole into the light. I prayed my mantra, God’s will be done.

Tom screamed in agony, “I can’t remember, I can’t remember.” Tears ran down his face as he clawed at himself. He howled repeatedly, “I want to feel, I only want to feel something, please, anything.” He sobbed and screamed incessantly.

He dug his fingernails so deeply into his palms that they bled profusely. I kept my arms wrapped tightly around him as much as possible but he continued to fight me. When he’d get his arms free, he’d continue ripping out handfuls of his hair.

I knew my part well. I held my husband close to keep him from hurting himself. My husband, my love, the one I’d shared conversations with of envisioning retirement in each other’s comfort, companions for life. But life takes twists and turns. There is good luck and bad. Our world changed, but never our love.

This business of bringing Tom back from the brink was as close to hell as I ever cared to get. I’d often wondered if I could fall into the same vat of temporary insanity; then who would rescue us. There’s no one. I must stay not only strong, but sane, for both Tom and me.

Exhausted from fighting him I still needed tohold him tight, otherwise he’d harm himself. I told the three nurses, “Go. There’s nothing more you can do here.” Why keep them with us? We were on our own.

I held and rocked Tom in my arms and whispered memories to him that were dear to both of us. I talked of nights of walking along Carmel Beach, antiquing trips, and lazy days of not getting up but just hanging out.

I sang to him, After The Loving, or at least as many of the words as I could remember. I had to bring Tom back into our world, into the present. I would do anything to make that happen. I’d talk, embrace him, and remind him that I’d always be at his side.

The injection I’d requested finally arrived. Tom resisted the shot and fought hard.

The passions for life that Tom once possessed seemed to slip further away with each hospitalization and each psychotic break. His fears were real.

I remained entangled with Tom long after his injection. I swayed him rhythmically against me and matched the contours of his body with my own. The medication began to take effect, and Tom’s body started to relax.

I dropped my sore arms to my sides. “Tom, how about lying down and covering up with the sheet?”

“I’m cold.” His eyes looked unseeing at some faraway place that I doubted he’d ever been. His teeth chattered and his bipolar body was in sensory overdrive.

Repeating his name, “Tom, I’ll ask the nurse for a blanket, but first, you must promise me you won’t try to hurt yourself. Can you do that for me?” I placed my hands on his shoulders. I needed his attention.

Fifteen minutes later, an aide arrived with two soft blankets from the blanket warmer and I covered him as he lay on the mattress. Ensuring his head was on the practically non-existent pillow; I lie down beside him and felt his nightmare-filled sleep. His body jerked involuntarily and he moaned. Haunting demons filled his tortured rest.

I missed the Tom I married. But, Tom missed himself even more.

I didn’t know how to rescue my husband. He was drowning and I’d never learned how to swim. I knew I couldn’t make everything all right. Tom’s mind was broken and in the process my heart shattered. I couldn’t fix him. I couldn’t make it never have happened. I would always be there to pull us through one more crisis.

Once Tom settled into a more or less uninterrupted sleep, I pushed the call button for someone to unlock the door of the quiet room. I didn’t want to leave Tom but grief and fatigue overpowered me. My body protested with stiffness from forcing it to be in unnatural positions while holding Tom.

I’d been in the locked room 7 hours bringing my husband, the love of my life, back to reality.

I left the locked room with the monitor on at the nurses’ station, retreated to Tom’s private hospital room and curled into a ball on his bed, crying until the tears wouldn’t come anymore. I went over in my mind all the events that might have caused this break and couldn’t find a clue.

I mourned yet again the Tom I knew long ago and the life we had dreamed of. This progressive disease assaulted every aspect of our bodies and our lives. Bipolar disorder lay our lives in ruin every moment of every day.

God, I missed my husband. I missed me. I missed us. These staggering loses were too much to bear. Was this why Tom had psychotic breaks? Where did my husband go?

Two hours later I leaned against the steel door of the quiet room. The room where my husband lay, alone, on Christmas day.

 

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THEY SENT MY HUSBAND HOME TO DIE

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

Baptist Hospital and Medical Center, Little Rock, AR

Baptist Hospital and Medical Center, Little Rock, AR

 

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

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

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

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

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

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

Think back 20 years, would this have happened?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I appreciate your time.

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MEDICAL FACTS I LEARNED WHILE LOOKING UP OTHER INFORMATION

 

Medical 2016/Research/One Woman’s Opinion
By – Sheri de Grom

 

From the back of my Medicare statement:

 

Medicare Difficult To Understand - Getty Photo

Medicare Difficult To Understand – Getty Photo

If you, or someone you’re helping, has questions about a Medicare Summary Notice (MSN), you have the right to get help, and information in your language at no cost. To talk to an interpreter, call 1-800-MEDICARE.

This ruling has become a requirement for all commercial insurance companies and I ask you to imagine the cost to your premium increasing to accommodate this service.

My Opinion: At least 24 languages are offered and include: Vietnamese, Tagalog, Russian, Portuguese, Polish, Korean, Japanese, Italian, Haitian Creole, German, and French to name a few.

If I required medical care in any of the above countries, I would be asked to pay for services rendered. I would not be offered a plan such as Medicare and no one would bother to translate their language to English. Many citizens of the countries named are fluent in English but from my experience these same citizens are selective about when they will use their language skills.

Is MEDICARE broke because we try too hard to be nice to countries whose leaders and/or citizens would just as soon see us dead? Who decided this was a good investment of our tax dollar? Why are we so afraid to stand up for ourselves and say, enough is enough?

From TIME, Oct. 5, 2015:

TIME magazine offered three (3) ways for consumers to get better health care. They based their summary on Leslie D. Michelson’s new book, Patient’s Playbook. The book is listed as one of the top fifteen of 2015 by AARP.

  1. Bond with your doctor. I agree 100% with Mr. Michelson’s assessment that it’s tough to
    Author: Leslie D. Michelson

    Author:
    Leslie D. Michelson

    make small talk during short visits. But people who have strong relationships with their primary-care physicians tend to be more open about important health details and are likely to get the preventative exams that are right for them.

  2. Get second opinions. In the U.S. alone, diagnostic error contributes to the death or disability of at least 80,000 people a year. It’s important to consult with multiple medical experts before agreeing to surgery and other major treatments.
  3. Don’t be afraid to travel within the United States to major medical centers. Community hospitals offer quality care. But for complex problems, it’s worth considering a major institution; if it accepts your health insurance, the cost will be roughly the same.

From AARP, Dec. 23, 2011 & reprinted Dec. 26, 2015:

An AARP Bulletin discussed five (5) ways you can easily be labeled a difficult patient and have your doctor dislike you:

  1. You don’t arrive on time.
  2. You treat your doctor’s office as your personal assistant.
  3. You don’t admit that you’re not taking your medication.
  4. You diagnose your own medical problem and tell the doctor how to treat it.
  5. You start asking questions just as he/she heads out the door.

From the American Association of Orthopedic Surgeons – Your Access to Health Care Services May Be Threatened:

Severn Sales Laboratory Equipment

Severn Sales Laboratory
Equipment

There is an effort in Congress to prevent physicians from owning imaging, physical therapy services and pathology services. This doesn’t make sense because it hinders access to quality care. If a patient cannot have these in-house services it will cause scheduling delays, prolonged waits, the need to travel to other offices, etc.

The prohibition of these services could present significant harm to our elderly, disabled, poor and military families. It would not be fair to discriminate against those patients and purposely inconvenience them as they are some of the most vulnerable in society.

My Opinion: I appreciate having all the services mentioned above at the same place as my physicians. It’s an added convenience and a bonus I always look for when considering a new provider.

shinglesFrom The Centers For Disease Control:

  1. 1 in 3 people will get shingles in their lifetime.
  2. If you’ve had chickenpox, the shingles virus is already inside you.
  3. It’s hard to tell when the shingles rash will erupt.
  4. Unlike chickenpox, shingles can be painful and can lead to long-term nerve pain.
  5. Your risk for shingles increases as you get older.
  6. MEDICARE DOES NOT PAY FOR SHINGLES VACCINATION. IF YOUR PRIMARY INSURANCE PAYS FOR THE VACCINATION, ASK YOUR DOCTOR TO ORDER IT FOR YOU BEFORE YOU ARE OF MEDICARE AGE!

It’s amazing to me just how much information is available along with how much mis-information. We must become informed consumers in selecting our healthcare providers and consider carefully the decisions they make for us. It is a matter of our life and death.

Thank you for reading with me.

 

 

 

 

 

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WHEN ARE WE RESPONSIBLE FOR OUR OWN MENTAL HEALTH?

Mental Health/Stigma/One Woman’s Opinion
By – Sheri de Grom

 

FROM MY JOURNAL – ARKANSAS, OZARKS
FALL, 2004

Pinterest

Pinterest

We’ll only have peace within when we surrender to ourselves. The worst stigma of all is the individual who’s aware they need help and would benefit from help but refuses to allow themselves to obtain it.

My soul turns in and the world moves, dark and sluggish. Interests once penetrating every part of my being have left me alone. This is a foreign concept. How can I walk away from being victimized by a mental illness?

Globally, one of four will suffer from a mental illness in their lifetime.

We’d moved from our dream retirement home in Brown Summit, North Carolina for greener pastures. The demons in NC were tearing Tom apart and I could not allow that to happen. You may read that blog here and here.

Sitting above the shoreline of Bull Shoals Lake [located a stone’s throw from our back

Life At The Lake

Life At The Lake

door], I marveled at the sweet sounds of the water massaging  the round pebbles and back out again. What peace. What tranquility. Would this be home for us?

It would be wonderful to believe the Arkansas Ozarks is an enchanted place where mental illness, more commonly known as a brain disorder, could tag onto a rainbow, float over the Ozark mountains and move to another place. Unfortunately this never happens.

No one is exempt from brain disorders. One in four homes has someone living there with a mental illness. The crisis presented inside the home includes: stigma, loneliness, hunger, the inability to work and adequate insurance coverage to procure necessary medications. These are just a few of the latest enemies.

To drive away the excruciating pain of the mind and the physical illnesses haunting the body, illegal substances and alcohol are commonly used. These brain disorders are not caused by weakness of character or bad parenting. They are the result of a biochemical disturbance of the brain and no one is immune.

No amount of love or money will save you or me or someone we love from developing a brain disorder. Mental illness is more common than cancer, diabetes, heart disease or arthritis. Comparatively, the success rate for treating heart disease is more successful than the treatment of a mental health diagnosis.

Even though there are thousands of people in the Ozarks with mental illness who are living full and rewarding lives, many are still afraid to ask for help. The stigma of mental illness keeps them from receiving the help that is readily available.

Artisan blowin glass.

Artisan blowin glass.

Unequal insurance coverage, fear of discrimination by friends, families and co-workers and stereotypes of the mentally ill all serve to cloud people’s understanding about the very nature of mental illness.

The fact is that remarkable things begin happening when individuals with mental illness feel it is all right to get treatment: families stay together, kids stay in schools and out of trouble, adults become more productive on the job and health care costs decline.

By changing attitudes and shattering the myths surrounding the illness, we’ll accept that people really do move from mental illness to mental health.

Thank you for reading with me. I always appreciate your time.

Sheri

 

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MEDICARE – WHAT REHAB FACILITIES & NURSING HOMES DON’T WANT YOU TO KNOW

Medicare/Physical Therapy/Medical 2016
By – Sheri de Grom

The Centers for Medicare and Medicaid Services passed a law that’s good for the patient and not the establishment.

The settlement agreement means that there have been changes to the manual that Medicare contractors use to process claims. These claims will no longer be evaluated based on potential for improvement but on the need for skilled care. Skilled care will qualify for Medicare even if the medical record reflects that the patient continues to deteriorate or maintains their current condition.

PHOTO ID 100469476 Stuart Miles/Digital Photos.net

PHOTO ID 100469476
Stuart Miles/Digital Photos.net

Facilities are rating an increasing number of patients as needing the highest level of therapy. This level requires 120 minutes of intense therapy daily and documenting this amount for high payment. The reality is that most patients cannot endure the scheduled therapy prescribed to meet those high standards of payment.

Medicare classifies nursing home residents into one of 66 groups depending on the patient’s needs. More than one-third of the groups are for patients who require physical, occupational or speech therapy. Medicare pays more for patients who need the most therapy.

The New York Times reported Oct. 5, 2015 that nursing homes and rehabilitative units bill Medicare for more therapy than patients need.

One of the best kept secrets in nursing homes and rehabilitative care units is that they operate at a profit.

Photo Credit: StauratMills/Free DigitalPhotos.net i.d. 100352582/annankhml

INFUSION OF CASH DUE TO OVERBILLING FOR PHYSICAL THERAPY

‘Profit’ used in conjunction with nursing homes and rehabilitative units is something we don’t hear about. This segment of health care is not eager to open their accounting books for anyone to examine.

The facilities receive more in Medicare payments than it costs the provider to give the patient care, exploiting the billing system while they are attempting more therapy than the patient needs, or can tolerate.

Common sense [obvious to those in the medical profession, caregivers and families of patients everywhere] is that chronically ill patients often require skilled care before returning home from the hospital. These people are too ill to withstand any type of rigorous physical therapy. Physical therapy adds unwarranted pain for this frail population.

Thank you to Birdie Avarialte for posting this photo.

Thank you to Birdie Avarialte for posting this photo to her Pinterest site.

DO NOT ALLOW YOUR LOVED ONE TO BE DISCHARGED AS SOON AS THEY STOP SHOWING IMPROVEMENT IN PHYSICAL THERAPY. THIS IS NO LONGER LAWFUL!

The changes I’ve described above apply to the traditional Medicare program and to private Medicare Advantage plans. They apply to people 65 and older, as well as to people under 65 who qualify for Medicare because of disabilities.

Medicare’s new law, now in place, should circumvent the nightmares families face across the nation. Patients upon discharge from the hospital and too ill to go home no longer must meet the rigorous demands of physical therapy, as in days gone by. They may go to skilled care for recovery [unless your medications are too expensive or you have a mental illness diagnosis]. I’ll be discussing these problems in a separate blog.

Thank you for spending time with me. I sincerely hope the changes in Medicare will enhance your life and the lives of those you love.

 

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