WHEN IT IS NOT MENTAL ILLNESS

When It Is Not Mental Illness
The Fourth House
By – Sheri de Grom

An estimate by the National Institute of Mental Health states, “One of every four homes in the United States is affected by a serious mental illness.” The five major categories of mental illness are: anxiety disorders, mood disorders—including depression and bipolar disorder—schizophrenia, dementia and eating disorders.

I hadn’t thought much about this statistic until I was driving home from work one evening and started counting the number of houses I passed. In a short drive of no more than thirty minutes I passed seventeen homes where someone with one of the five above- mentioned diseases lived.

“One out of four” struck me harder as I pulled into our driveway and recognized we were a number four.

I’m beginning this feature series, “The Fourth House,” to bring you the story of how my husband, Tom, and I continue to fight for treatment and survival against his brutal disease of bipolar disorder.

I don’t need anyone to tell me that upwards of 90% of all marriages fail wherein one partner is diagnosed with bipolar disorder. Tom and I love each other unconditionally and we will not allow his disease to make us a statistic. From the night we met until the day we wed, neither of us doubted our love for the other. Twenty-seven plus years later, I can’t imagine having made another choice.

We’re currently in the midst of an unproductive struggle to receive medical treatment for Tom, although we have full-pay insurance. I want to scream, “Can no one hear us?”

Mental illness can strike anyone! It knows no age limits, economic status, race, creed, or color boundaries. During the course of a year, more than 54 million Americans are affected by one or more mental disorders.

Those of you who follow my blog are aware that Tom is bipolar. However, this condition does not preclude him from succumbing to other conditions and diseases, such as his diabetes (caused by one of his psychiatric medications) and heart complications. These diseases require constant monitoring.

Unfortunately, in seeking treatment for these other conditions, we have been forced to fight—and are still fighting—the worst kind of stigma staining an individual within the medical community itself. Physicians turn their backs on the medical needs of the mentally ill. Have doctors forgotten their Hippocratic Oath?

Last month, while struggling hourly for an appointment with a neurologist for Tom, I read articles detailing how bipolar patients die on average a decade earlier than their non-afflicted counterparts. The reporting institutions are well-respected on an international level and include: JAMA Psychiatry, Mental Health America, psychcentral.com/news, and kevinmd.com. What caught my attention immediately is that exhaustive controlled studies reveal individuals with bipolar disorder are less likely to receive the medical attention needed to address their non-psychiatric needs.

Tom has me for an advocate. Unfortunately, 92% of the mentally ill don’t have an advocate to fight on their behalf. Their battle for care is endless.

Two weeks before Christmas, 2012, Tom came down with a terrible sinus infection. Since he’s been susceptible to these infections for years, we know the first line of defense is to make an appointment with our otolaryngologist. Fortunately, this young physician is immune to the mental illness stigma. He’s also amazingly dedicated to medicine in general and his patients in particular. We also believe the man is younger than most of Tom’s socks, but that’s another story. Nevertheless, this doctor did everything within his power to bring Tom relief.

Five treatments and seven rounds of antibiotics later, Tom still suffered from blinding migraines. The same migraines that started before Christmas had followed us into late spring and he still had no relief.

The young doctor referred Tom to a neurologist and at first we were impressed with the doctor’s skill set and his thoughts regarding a treatment plan. He expressed concern that Tom’s big toe’s raised when he tweaked the bottom of each foot. He also asked that we bring photos of Tom to his office that was a close up of Tom’s face. The doctor believed the right side of Tom’s face sagged. But, as you might imagine, Tom is not your normal off-the-shelf patient.

The neurologist wrote several prescriptions, asked Tom to have several lab tests completed along with two CAT scans. Tom cannot have an MRI due to his pacemaker.

I asked for an explanation about why the doctor was concerned about Tom’s big toe on each foot raised as a reflex. The doctor told me he would discuss this at our next appointment.

The days crawled by until time for us to return to the neurologist’s office. We were convinced we’d finally have an answer to what was happening to make Tom feel so bad. We deserved to know.

We returned to the neurologist’s office two weeks later believing we’d receive a complete treatment plan and—at long last—we’d have a diagnosis of what was happening with Tom’s body. He was getting weaker each day. He was also sleeping as much as possible to escape the pain and his appetite was gone. I knew more was going on than just a migraine.

We waited for what seemed like forever before being ushered into an examination room. Finally the doctor arrived but what did he mean he couldn’t help Tom. He’d told us at the previous appointment that he’d explain what he was testing for and why. I asked the doctor why he couldn’t explain to us why Tom’s neurological responses weren’t normal but he wasn’t going to pursue the specific problem.

While the neurologist was writing more prescriptions, he said, “You’ll find all of the information you need on the internet. The doc tore the prescriptions from his pad, handed them to me and said, “Make an appointment for Tom in six months.”

We were stunned. This wasn’t medical treatment. We still had no answers and Tom didn’t want to exist on pain pills. Again the medical community had turned its back on us. Our quest for proper neurological treatment for Tom will appear under the title of a ‘Fourth House’ in the future.

Please join me for my continuing series, The Fourth House.

Previous blogs I now identify as a part of THE FOURTH HOUSE series:

Traumatic Brain Injuries and The Loss of 55 Years of Memory – Part 3 of 5

Sheri's Garden

Sheri’s Garden

Traumatic Brain Injuries and The Aftermath of Memory Loss – Part 4 of 5

The Wrongs of Psychiatric Care – A Blind Date with My Husband – Part 1 of 2

The Wrongs of Psychiatric Care – A Blind Date With My Husband – Part 2 of 2

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About Sheri de Grom

Retired Fed/JAG, 5 yrs. on Capitol Hill. Former book buyer for B and N. Concerned citizen of military drawdown. Currently involved in mental healthcare reform, health care strategist and actively pursuing legislative change wherein dual retirees are exempt from enrolling in Medicare at their own discretion without losing tertiary healthcare benefits. Monitor and comment on Federal Register proposed legislation involving Mental Health, Veterans Affairs, Health and Human Services, Medicare and rural libraries. Licensed OSHA Inspector to include Super Fund sites. Full time caregive to Vietnam era veteran. Conceptualized, investigated possible alternatives, authored, lobbied for, and successfully implemented Title X, Section 1095 (known as the Third Party Collection Program of Federal Insurance).
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82 Responses to WHEN IT IS NOT MENTAL ILLNESS

  1. tersiaburger says:

    What a beautiful love story! Hugs.

  2. cindy knoke says:

    Your blog is so important~

  3. findingmyinnercourage says:

    Your dedication is like nothing I have ever seen! I’m so proud of you! Your heartache breaks my heart. Confidentiality policies prevent family members from getting information they need which to me unconscionable. Continue to battle, finding the answers and please share with us.

    • Dawn – The best thing, IMO, is for a dedicated family member or the partner of the patient (whoever has the patient’s best interest at heart) to have a medical power of attorney drawn up and notorized. The wording will vary from state to state but you don’t need to pay attorney’s fees. Any large bookstore will have books written by attorneys telling what is required in your state. The document you draw up, if signed and notorized properly, will give you access to medical records and a part in the decision process. Tom and I learned early on that I needed a sole of power of attorney for property issues, cell phone contracts, etc. You’d be amazed what comes up and the ill person, for whatever reason, cannot take care of the issue.
      I’ll be talking in later blogs about the necessary paperwork for you to have in your possesion to get the best care for your loved one. Sheri

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  5. Kameron says:

    Thanks for the like on http://imsnowedin.wordpress.com/2013/09/11/3-ways-men-have-failed-women/ !

    I’ve found the medical establishment can be very exclusive if you don’t fit their definition of a certain condition. My mom fought them for years because they told her the condition she had was “in her head”. Turns out it wasn’t and now many people suffer from it

    • Kameron – Thank you for stopping by to read with me. I enjoyed the thought process that went into your post and I found it by clicking from another one of your followers comments. I always love a post that brings in great conversation and yours certainly did.

      I’ve often believed the medical establishment wanted to put some of us into a certain category and leave us there. A prime example for me is that after I retired I gained a massive amount of weight although I continued to walk everyday. I was so afraid for my husband’s health, food became my silent partner. I didn’t have anyone else to turn to and we were in a brand new location. I finally came to my senses about 7 years latter and took off 120 pounds and I see a whole different mindset in how I’m treated everywhere I go. The most significant place however is doctors can no longer blame my medical conditions on being grossly overweight and and I’ve come out of that box where everyone believes you must be dumb and lazy if you allowed yourself to get so fat. I’ll be the first to admit that I did it to myself. But, I’ll be the first to admit, I’m also the one that had the discipline to take the weight off. I feel a million times better and it gives me the strength to continue to fight for not only what Tom deserves for medical care but for myself and others within the health community.

      Please come back for a visit sometime and I’ll try to make it to your blog just as often as possible.

  6. My dear Sheri…must apologise even for the previous comment…never understood your husband was fighting even against the bipolar disorder….I was touched reading your petition..and I can only say that wish you both all the best and to find soon a real solution….
    Lots of love, Luana

    • Luana – There’s never a need to apologise. It’s a pleasure getting to know you and Tom and I both so love Italy. He tagged along on two of my assignments there and as you can imagine, as an artist, he was not ready to come home:) We are still fighting whatever his medical issues are but we are not giving up the fight. I have hope as we are starting to get some good physicians taking a pro-active look at all that is invading his body. I’ll have several posts regarding our struggle regarding the mental health care system. Althogh we are full pay clients, we are often treated as if the professionals couldn’t be bothered.

      • I understood the situation very well my dear Sheri…sometimes even in Italy happens just the same, even if the system is a bit different, the results seem to be very simillar…
        I sincerly admire your energy and effort you’re spending for your husband…and I’m glad to hear you have good hope for the near future!

        Wish you both a wonderful weekend!
        Love, Luana

  7. My heart and prayers go out to you. Keep on going.

  8. Sheri, I admire your devotion to your husband. He is blessed to have your support and active help through this health crisis he is having. My dad died at age 62 because he lived by himself in another town and was not able to make it to an appointment to see about some side effects he was having. He missed that appointment and died that night. Years of treatment ( including electric shock therapy at one point) for bi-polar illness had given him the same Parkinson like disease that boxers can get. If my dad had had a partner like you, he’d potentially still be alive. He was a kind and gentle father.

    I believe you when you say one in four homes has a mental illness.

    Blessings ~ Wendy

    • Wendy – My heart goes out to you and your father. The same as your father, Tom is the kind, gentle, caring and the most loving of men I’ve ever met — other than my own father. I am so against ECT in any form and if you happened to read my post of ”55 years of memories lost” and what we went through as a result of Tom having had ECT, you’ll understand why I believe the practice should be banned yet is still being administered today. The administration of ECT is big money for doctors and hospitals alike but it more often than not destroys the client and the family that loves them. I’m convinced it’s a direct assult on the brain. Tom was also diagnosed with Parkinson disease after the ECT and we struggled with that diagnosis for three years. Come to find out, he didn’t have Parkinson’s disease at all. It was a side affect of one of his medications. Bipolar disorder is one of the most difficult of all mental illness to treat and it takes not only a first rate psychiatrist but a partner for the patient to over-see that everything is going the way it should.

  9. Lignum Draco says:

    Sorry to hear about this. Unfortunately you are one of many in this situation, world wide.

  10. I cannot understand a doctor acting like a prima donna. Might the problem be he doesn’t want to take on a difficult case? I’ve heard of Doctors interviewing NEW patients and then telling them he can’t take anymore patients if there is a pre-existing (?) condition. What is the world coming to?

    • Tess – Hello and it’s so nice to see you here. I could understand a doctor only wanting to collect the high fees that come from the one hour assessment fee and the labs and other testing wherein he might be a stakeholder. However, the particular neurologist I talk about in this blog is a neurologist Tom was referred to by another physician with the expectatation that a full workup would be completed and a treatment plan resolved.

      It’s interesting that you mention the doctor interviewing the patient. I interviewed doctors when my career moved us to Washington DC. My fast paced career didn’t allow for a lot of test driving of doctors. I’ll do a post later on about how I wrote up a list of questions and telephone interviewed the doctors and if they refused to talk with me, then I took them off my list. I narrowed my list down to 3 doctors to interview in person and Tom and I went in person to meet and greet the 3 doctors and decide which one we thought would be the best to handle Tom’s case. Each of the three doctors said they wished more patients were proactive. It’s an excellent way to find out if there’s a ‘fit’ or not. In this particular case I was interviewing for the lead psychiatrist.

  11. gpcox says:

    This is absurd! I’ve heard of detached doctors before, but this one takes the cake. Is it possible to get copies of Tom’s records for you to bring to another doctor – second opinion?

    • Hi GP – Never fear, I haven’t given up the fight. Matter of fact there’s a part 2 to this blog and I expect there will be a part 3 and 4. I have copies of all of Tom’s medical records going back to the date we married in 1986. Because of different aspects of my career, it’s something I encourage everyone to do periodically. I also have a complete copy of Tom’s medical records from when he was in the military. You know how the VA loves to misplace things. You wouldn’t believe how many times I’ve had to provide them copies of their own records. An RN that I kept under contract for my work with the government still works for me perodically and she summarizes all medical records and presents them to me in a consise and organized manner. She even provides a summary index and it’s rare to find that in the civilian world unless you are preparing a civil defense.

      I’ll post our VA adventure it in a future blog but thought you’d get a chuckle out of it now. We managed to get an appointment with a VA neurologist (after being on his waiting list for 4 months) and that doctor said Tom’s terrible head bain was the direct result of his being bipolar! Said doctor performed no exam and ordered no tests or blood work. Matter of fact he acted agravated that Tom took up his time. He also said there was ‘nothing’ he could do for Tom. I hate to say it but so many of the VA doctors are just there to pick up their pay checks and nothing more. Many that were in private practice and decided they didn’t want to work ‘that hard’ any longer bounced into the VA systems nation wide with a fat bonus for signing up and they work strictly 9-5 and a lot of days the office staff can’t find them for hours on end. The young doctors coming in are the only hope our vets have.

      • NotDownOrOut says:

        I am tremendously impressed and have a new project for myself.

        • Cheryl – I”m eager to learn of your new project. The best psychiatrist we’ve ever met is at the VA – the one I drove through the mountains for back in 2005 – he’s still Tom’s doctor (and he’s been promoted so many times he’s not supposed to see patients). Most of his time is spent in DC on administrative matters but all I have to do is call his private cell phone and I have a call back in 30 minutes or less. He’s a highly regarded psychiatrist and in my opinion there’s a special chair in heaven for him. You’ll be hearing more about him in a future blog.

      • gpcox says:

        That is such a disappointment to hear. My father used to rave about the doctors, my uncle and cousin never said anything and my son used to complain – guess I really wasn’t paying attention to how their care was deteriorating. Shame on me and definitely shame on the VA.

        • GP – I don’t want to give the impression that every doctor at the VA is the same as the neurologist we saw. I’ll be honest and say there are some really bad employees that need to be removed from government service (in every department at the VA) but on the other hand, there’s both doctors and staff that are willing to stay 27 hours a day if that’s what it takes to get the job done. The only physician we use at the VA on a permanent basis for Tom is his psychiatrist and I’m convinced the man is a saint. He’s the best we’ve ever had for Tom and the doctor I raced through the mountains for in the 2 blogs I referenced at the bottom of this post. I really should do a blog on the way veterans 65 and over are being turned away from the VA now with the excuse that they are now elgible for Medicare and have Tricare. I feel like I need to do it so people will know what is going on. I so appreciate your support in getting the word out when I post something important about the VA.

          BTW – I heard the first dinner for 12 WWII veterans went without a hitch. Everyone talked and joked and the young psychiatrist and psychologist are overjoyed. The VFW that co-sponsored the event is putting in a formal request to do such an outing twice a month with 12 veterans until all long term stay veterans have had an evening out and the relaxation and opportunity to talk among themselves (the docs are using your material to get the conversations going). I had to laugh when I heard the first menu request: unlimited buttermilk pancakes, lots of real butter, real maple syrup, bacon/sausage/ham, real eggs (at least 3) cooked to order, and all the orange juice they could drink. They had a week to decide on if they wanted to order from a specific menu or if they wanted to order the same thing and from what I understand, there wasn’t much discussion. Who would have thought.

          I previously worked with getting the Dodge vans donated to the VA’s nation wide and have approached them with the idea of donating a van for the precise purpose of getting vets out and about on a rotating basis. We’ll see how that goes over. Tom’s care is taking more and more of my time – but it helps me to have others to think about also. Thank you so much.

          • gpcox says:

            This is overwhelming and so great to hear!! The menu sounds typical of that era and had to laugh when I read it. Will Tom be meeting up with the next 12 vets? I think that might be good for him – you and he are actually the ring leaders in all this.

            • GP – Good morning – It’s doubtful that we’ll be part of the next 12 vets. Tom’s physical health is declining and a brief journey away from home just about does him in. I hope he has the energy to make a trip by the VA with me today as I’m taking books, etc. In addition to the neurological issues, he now has something contributing on the cardic side. His energy level is extremely low. One of the young psychologist is so totally involved with this project there’s not a chance that it’s going to go away. It’s not costing the VA a dime so I don’t see the possibility anyone is going to complain. If they do, I have enough connections on ‘the hill’ to make it pretty messy. (That 5 years in DC was good for something).

              • gpcox says:

                Good for you!! And please shake that psychologists hand for me. So sorry to hear about Tom, tho. Is the cardiac problem something they feel they can repair?

                • Home again, home again and it feels so good. I had a bit of time between appointments today so chased the psycholgist down and gave him an outline for drafting a grant to keep the program running. It’s always a risk that a new program will disappear when the ring leader is moved on to another location. Grant writing is a full-time job but I’ve written several so believe we can pull this off. The expenditures are so low (almost non-existent to the VA or any other governmental agency) that I can’t imagine the agency pulling the rug on the program. We’ll know more about Tom’s new heart issue soon (I hope).

                  • gpcox says:

                    Please – keep me informed.

                    • G.P. – Most definitely. I talked with a few of the men that were sitting in a sun room yesterday, (something I had never seen before) and they were chatting up a storm. Oh how I wish I’d had more time but my energy was running low also and knew I’d have at least an hour and one-half drive before reaching home and doing everything required on the home front. I did take the time to shake each veteran’s hand the encouraged them to continue to participate in further outings and oh, you should have seen their faces light up. I need about 10 more hours of super charged time in my day. I’ve seen many of them with paperback books and magazines so gave them first crack at the magazine and books I was delivering (I generally take the VA about 30 books or so per month). Anyway, they were chuckling over some of the women’s fiction in the bag until I explained a bit of the plots and twists and turns and then they perked right up. All books are current – none of those books that have been collecting dust for years on the shelves. They are so wonderous to talk with and although my dad was held back from the war because he was one of the few at Beech Aircraft that could read less than perfect architectural plans. I have another project up my sleeve to involve active duty wives at the local Air Force base but need to get on the General’s calendar. That’s a task for next week. We’ve worked on projects before and I see no problem in getting a new program off the ground.

                    • gpcox says:

                      When you have the time (haha) let me in on what your new plans are. It is so wonderful that you have these connections and are able to do so much good.

  12. Such a state of corrupt misunderstanding and continuous battles millions face everyday ! I read your heartache and your heart-strength! I once read that God will try our very heartstrings & if we endure it, WE have earned his rest which in my ancient scripture studies signifies — God’s presence & peace & personal glory! Don’t get discouraged dear! No cross is ever carried without Him! You’re both in my prayers xoxo

    • Deborah – Thank you so much. My daily mantra through all of this is, “God’s will be done.” I’ve had times when I felt so worn down, I couldn’t think of better words and knew that God would hear me and deal with whatever was happpening in our world. This is a tough road but it’s the one God has placed in front of me.

      Thanks for reading with me. How are you today?

  13. Thank you for stopping by to read with me and a huge thanks for reblogging my post. I appreciate your assistance in spreading the word.

  14. Terry says:

    This is so sad. I am a believer that Western Medicine is just that. Push medications down our throats. Help the pharmacy companies. So many drugs have serious side effects. You in turn need more medications for that. Other parts of the countries have different views and it is this that makes me wish I didn’t live in the Western Medicine Country. I pray that you locate the correct doctor. I imagine there is a nerve pinching or something in the back that is causing the migranes, but until you do find the answers, I will pray

  15. I loved this post!! HAving grown up in a family with a history of mental illness, I can feel your pain. We need more voices such a yours so people can understand that mental illness affects all aspects of one’s life. thank you!!

  16. I have recently experienced the same lack of concern and indifference by my physician regarding some serious health issues. It’s disgusting and appalling. And depressing. I look forward to your future posts on this but I’m sorry you even have to deal with it.

    • PLGCM – So sorry you are experiencing lack of concern and indifference by your physician. Can you leave your doctor and move on to another. I’ve fired many a doctor for both Tom and myself. Thankfully our insurance gives us the flexibility to select our own doctors. There’s no excuse for indifference by a doctor or anyone else for that matter. Once when I was firing a doctor and he told me I could do it, I informed him that I could indeed fire him the same way I fired a dog groomer that wasn’t doing a proper job with our shih tzus. Of course I take the care of our dogs very serious – but for the doc – I knew that using the comparison of dog grooming to medicine would reach his ego and make him all the more angry.

  17. Sheri, every time I read one of these posts, I have two strong emotional reactions:
    1. An overwhelming empathy for Tom
    2. A deep gladness that he has you.

    I wouldn’t want to be caught between you and your goal. I suspect I’d be run over or through. Keep barging ahead, and let those blocking the path fall by the wayside.

  18. words4jp says:

    As always, thank you for sharing your words with us – I send lots of hugs and prayers your way:)

  19. When I got to the point where the doctor said for Tom to come back in six months, my mouth dropped open. WHAT THE HECK! I, too, am appalled but also read with interest NotDownAndOut’s suggestions. Knowing you from your posts, no one could have a better advocate than you are for Tom. I can only hope that somehow, some day soon Tom will get the help he, and all patients, deserve without going to such lengths.

    • Patti – I’d love to be able to say that someday soon we’ll see a change in how individuals with a mental illness are treated in the health care industry – but don’t hold your breath. I’ve been fighting for the proper care and respect for Tom ever since his first admission and that was Dec. 7, 1987. I’ve spent thousands upon thousands of hours advocating for mental health reform at both the state and national level for many years and feel as though the surface has barely been scratched.

  20. Jane Sadek says:

    Sheri, I’m so sorry you’re having this battle. It reminds me of the struggle I had with my dad’s physician. He believed that as long as your blood pressure was right, you were fine. In Dad’s final days, the doctor actively ignored me, even though I was fully documented as Dad’s POA, MPOA and guardian. That’s why I was so grateful for Mom’s physician who took an active role in our lives in my mother’s last days. He’d always been a good doctor, but he went above and beyond any expectations in the final months.

    I truly believe that part of this medical myopia is related to time. They have so many i’s to dot and t’s to cross that no amount of staff could fully accomplish it, yet everyday the costs go up for them and the income they are allowed to earn goes down. And now we want to have them reporting to the IRS on our sex lives, gun ownership, etc.? There is something radically wrong with this picture!

    Good on you for your new series. I hope it raises awareness of your dilemma.

    • Jane, I absolutely agree that there is far too much meddling by outside parties (ins. cos., government, etc.) trying to insert themselves between the doctor and the patient.

    • Jane – I agree with you that the medical industry is over-regulated. Look what’s happened to the airline industry as a result of regulation. We’re treated like cattle. The specific incident I reported on in my blog, the neurologist was allocated one hour for a new patient visit. At the one hour level, and because he’s a specialist, Medicare paid him $280 and BC/BS paid him an additional $95. As far as I’m concerned, he was adequately compensated for the less than one hour we were in the office. Tom and I both have many physicians that are scheduled to see us for 15 minutes and are paid accordingly but yet take however much time is required to address whatever problem we are presented with. Our return visit was allocated 45 minutes due to it being a consultation for diagnostic results. As you may well imagine, we were not with said doctor for 45 minutes. He was paid a total of $210 for that visit. To add insult to injury, he sent us a bill for what he considered our part of the bill that Medicare and BC didn’t pay when he and his office staff have to know that it is illegal to do so. He also tried to bill Tricare for the same services when he had already been paid in full. Somehow I don’t have much respect for this man. On top of that, if I reported him to the 12 different agencies and boards that I could report him to, it would possibly stand in the way of my being able to secure appointments for Tom with other doctors. Medicine is a wicked world in many ways.

      • NotDownOrOut says:

        What awful experiences you have had! I need to read even more back posts to catch up.

        • The mental health system is broken from the inside – out. When the state hospitals were closed it sent mental health care into a ball spinning out of control that communities could not deal with. Many of the individuals placed in group homes were not able to care for themselves at the level required for such an arrangement. I know many honest and hardworking individuals that took on the responsibility of running group homes and did so with integrity and pride. Unfortunately, more often than not, the group homes were left unattented by a responsible individual and often when that individual was present, they weren’t responsible. Monies allocated for the residents of the home were used for personal pleasure and often the residents of the homes were hungry and without proper heat and/or air conditioning, etc.

          I shudder to think how those without insurance cope in the mental health world. So many end up in the prison system and that’s another horror story that will blow wide open one of these days.

          • NotDownOrOut says:

            I fear you are right because we no longer offer patients and, for those unable to make decisions for themselves, families many solutions that do not involve incarceration. The woman I know with a living schizophrenic sister has done all she can for her sister in terms of fighting for disability and other financial support. She goes hunting for her sister when her sister stops her medications. She is a liaison with employers and every type of government agency. As a lawyer, she’s equipped to do this skill-wise. But her mom through her sister out and her sister has lived on the streets, sometimes for protracted periods–too frightened to go to shelters. This isn’t even a worst case scenario. Without an advocate, it’s the street. I have often encountered certain people on the street enough times to have a speaking relationship. They sometimes break my heart with their circumstances. Some are too distrustful to take help when it is offered. I’m glad Tom has you. It sounds like you make a good team–something we can forget about when choosing mates. Love and loyalty mean making it through rough times together.

  21. NotDownOrOut says:

    Sheri, I heard on NPR about a week ago the results of a study on doctor bias. The results confirmed other studies showing that doctors routinely offer Caucasian patients medical treatments and pain relief that they do not offer to African American patients. It did not matter whether the two patients presented with a broken bone. The doctors offered the Caucasian patient pain relief and allowed the minority patient to wait without pain relief. This was true even when the doctor was not Caucasian, even when the doctor and patient were of the same race. The study, and its predecessors, controlled for all other variables, including income level, insurance, time of day, and traffic in the office. The conclusion drawn was that discrimination took place and was unintentional. Just as pernicious for the patient, but tough to address because the doctor was not aware.

    Here, the doctors you mention are not necessarily trained to understand mental illness. They may be unaware that they have prejudices. They may be out of their depth and unwilling or unable to say that.

    I thought as I read your post about the movie As Good As It Gets. When the character played by Jack Nicholson wants his favorite waitress back at work he pays a doctor (played by Harold Ramis) to make a home visit to see the waitress’s chronically sick child. The doctor expects test results in the same day. He promises to get to the bottom of the problem and that the child will get better. Helen Hunt plays the mother/waitress. I forget the name of the actress who plays her mother. They become giddy and unbelieving and ultimately overwhelmed with relief and sadness. My guess is that you would love to have that moment in care for Tom.

    I am sad it has not come, but I have never known a person who acknowledges having a mental illness who has had it either. I had a friend whose sister is schizophrenic. I have a friend whose entire family suffers from bipolar disorder or depression. I had a friend with anxiety disorder and sometimes depression. I have a friend with seasonal related depression. I have a relative who takes antidepressants and remains unable to overcome the worrying symptoms of that depression. They often reflect on their own unwillingness to simply be medicated. The medications have side-effects that often disrupt their lives in new ways: lack of sex drive, extreme gastric distress, loss of taste, headaches, lethargy.

    We seem to address mental illness when it leads to violence, and then, only until another news story replaces it in public awareness. I am sad that you have shared with so many others the frustration of no answers or worse, no information because of apparent lack of concern.

    I am a helper bee (not always appreciated). So, I cannot just say “hugs” unless I first ask a few questions so I can puzzle about the subject constructively (even if that proves futile). Have you ever written to a doctor who took your husband’s information and then did as this most recent doctor did and just prescribed Tom more meds? If he read your blog (perhaps not presented as a blog so he did not fear you would post his answer), would he ignore you? Have you ever requested a copy of Tom’s medical files be downloaded to a zip drive so you could have someone else review them? Is there an ombudsman for your insurance plan who can answer insured’s questions about quality of care? Is it possible there are research hospitals providing relevant care where the research component of practice might offer more insights or options?

    I see from your post that you already serve as case manager and don’t mean to suggest you don’t have enough to do. I read your post and think quite the opposite. But I’m trying to think of what I would do, and this is where I started in my own hypothetical search for answers. What did people do before the Internet? They had to go to medical hospitals and use libraries to try to fathom fields that seemed unresponsive in practical settings. How terribly sad that we’re still reduced to doing that despite so many improvements in medicine, science, and technology.

    Hugs!

    • I would expect the leftist NPR to find some skewed survey to propound a finding of racism, but that’s really irrelevant to Sheri’s situation. She has a real problem, not one manufactured by leftists promoting their own agenda, and there should be answers out there somewhere.

    • Cheryl – Thank you for your analysis of the situation Tom and I have battled for more than 27 years. I appreciate your taking the time to affer a thorough analysis and opinion. The bias you speak of that was reported by NPR could well cross over to many other situations. A significant weight loss taught me the difference in the way I’m treated by medical personnel everywhere. Before the weight loss, everything could be blamed on the weight. After the weight loss, the medical community is willing to look for what the underlying problems are. I use this example to simply state that if you took away Tom’s diagnosis of bipolar disorder, he would be treated the same as all other patients. An example we experienced as a couple – when we first moved here, we were fortunate to enter the practice of a premier internist. We normally made our appointments one right after the other. Usually the nurse would ask if it was okay if we go in the same examination room and Tom and I don’t have secrets from each other and said we didn’t have a problem with that. What we did have was the highly respected internist only wanted to talk to me when he was discussing issues that were of concern to Tom. After a couple more appointments, we had the nurse put us in seperate examination rooms to see if that would improve the situation. The doctor continued to save his questions about Tom for me to answer. When I asked the doctor why he didn’t talk to Tom about Tom’s health, the doctor told me that he hadn’t had good relationships with mental health patients in the past and normally didn’t take them into his practice. I asked the doctor if he could provide me some examples of problems he’d had with past patients and he told me he didn’t have time to go into detail. At that point, Tom and I decided we should look for a different internist for him. We located another internist that has Tom’s care front and center each time Tom has an appointment or we need him on an emergency basis.

      You mention the movie As Good As It Gets and the moment in time when the child will get better. I know Tom will never ‘get better.’ His quality of life could improve by about 90% with proper medical care. When we located Tom’s current psychiatrist, that particular doctor is indeed, as good as it gets and more. I plan to do a blog about this particular doctor and his value to both Tom and myself.

      At this point I must stop as I have an appointment but will return to address your additional comments. I sincerely appreciate the value of your response.

      • NotDownOrOut says:

        Thanks for sharing your insights with everyone else. I learned some things that did not entirely surprise me, but did sadden me greatly. The reason I asked about writing after a disappointing meeting is that I once had a doctor whose nurse wanted to watch me undress. She always managed to be in the examining room sitting at a desk asking questions and taking notes. I never paid attention until I noticed her reflection in a piece of stainless steel. She was strange. On my next appointment–for results–she told me to put on a robe and I declined. I even said that she made me uncomfortable. She had a little fit, but I stood my ground. I tried to raise the subject with the doctor, but he got up and left before I got to the disturbing part. That completely “weirded” me out. So I switched doctors and wrote him a letter. The friend who referred me to him said she enjoyed his care a lot more after his longtime nurse left. It did not help me, but I may have educated the man. He never answered my letter, but I’d like to think he did learn something helpful that caused a change in his staff.

        • Cheryl – I thought I would return to responding to blog comments yesterday upon my return from appointments but things just didn’t work out that way. Being a full time caregiver takes a lot out of me and I haven’t started the treatment for my hand and arm yet and am dealing with chronic pain. My treatments are set to begin Oct. 14. I’m not sure how all of that will combine with the care I must establish for Tom.

          I wanted to address the issue of ‘never know a person who acknowledges having a mental illness who has had it either.’ I understand about the nasty side effects to the medications and I’ll be addressing that very issue in future blogs. I’ll also be addressing my own walk with clinical depression, PTSD, work alcoholicism, multiple addictions and panic attacks. I met many a dark and lonly night when I was oh so close to walking ‘over the edge’ and the only thing that held me back was knowing Tom needed me. I’ve gone through my own process of interviewing mental health care providers for myself and indeed, there are the good, the bad and the ugly. I’m posting a blog in the near future about my entry in the mental health arena as a patient and how reluctant I was to go there – but it has saved my life. It was only when I admitted the issues openy and freely that I set my own self free.

          I also have examples coming up of how I’ve ‘handled doctors’ that did not have Tom’s well being foremost in mind. I’ve set in on more hospital meetings wherein Tom and other patients have been treated like sheep being moved through one door after another, all in the name of writing embellished case notes in order to receive maximum insurance payments.

          I started my quest for the appropriate care for Tom long before I used the internet for anything. I haunted medical libraries along with case law. After all, the two made up the crux of my career and I was no stranger of knowing how to use either to my advantage. I also had access to the best minds at The National Institute of Health, National Alliance for the Mentally Ill and served as the legislative liaison at both the state and national levels. I’ve heard horror stories at every level of treatment for so many patients. Our story is just the tip of the iceberg.

          Thanks for reading with me and again for your comments. Mental health is a completely foreign concept to many that do not have to walk the path day in and day out.

  22. ksbeth says:

    i’m so sorry you are having to fight for what you are entitled to. there is such a range of understanding of mental illness, and such a stigma still, that many change the way they treat or react to people, based upon this. i have a dear friend whose son is bipolar and not only is she trying to balance life at home, but with all of the medical people involved/uninvolved. interesting, that if people suffer from most any kind of illness, other than mental illness, they are treated differently. that last doctor’s behavior is inexcusable and it must make everything all the harder.

    • Hello Beth – Doctors are a mixed bag and we never know what we’re going to be dealing with until a good 6 – 8 weeks have gone by. The initial appointment might seem all is okay. Then when you return from any exam for results, the doctor may very well decide he doesn’t want you for a patient at all or simply just gloss you over. One my major concerns at the present time is that Tom has been ill for about a year now with something that is not related to his mental status and if each time he has an attack, what additional damage is being caused to his body. Needless to say – I’m still battling to find answers.

  23. Sheri, my heart goes out to you both. Thank you for sharing this! I too am appalled by the lack of concern, actual REAL treatment for this area. It literally blows my mind. The sad thing is that until someone you know requires help in this area, you really have no clue of the lack of services. The stigma and misinformation just adds to the problem. On top of that, confidentiality policies prevent family members from sharing or getting information. It is ridiculous. I have a family member who has suffered for most of their life from various mental illnesses. Lots of medications (that cause other problems) but nothing more is offered. I feel your pain. Hang in there. ((((hugs))))

  24. Brieuse Bernhard Piers-Gûdmönd says:

    I said WOW to myself about 5 times after I read that. WOW to the clarity of writing. WOW in disbelief at the specialist’s indifference. But most of all, WOW to your dedication. A fantastic piece thanks.

    • Thank you Brieuse for reading with me and leaving a comment. Additionally, I feel hopeful when I’ve reached someone about the plight of mental health care in our country – even when a patient has full pay insurance. It makes me shudder when I think of all the patients that don’t have advocates for them and also don’t have insurance to cover their needs.

  25. pilbra says:

    I suffered to with depression for a long time and people need to be made aware of it.

    • Hallo Pilbra – Thank you so much for reading with me. I too go through some nasty bouts with depresion and often have mored into clinical depression. That’s no fun, is it. I’ve often wondered how it’s easier for me to get health care (both on the medical front and on the mental healthcare front) when my diagnosis seems so simple compared with Tom’s diagnosis. It’s so hard for us to explain to others what depresion is – have you ever been able to pin point the cause of your depression? I know much of it has to do with being Tom’s caregiver but then I also know much of it has to do with fighting with medical care for him and the total exhaustion I feel. Sometimes I want to crawl into a hole and hide or run-away. Do you ever feel that way?

  26. Reblogged this on petitemagique and commented:
    Please, be aware of this.

  27. Thank you so much for sharing this. We have to make more people aware of this. A mental illness is a very hard battle and deserves a lot more attention. I hope it’s okay that I reblog. Lots of love ♥

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