Christmas Shadows

            “…May your days be merry and bright….and may all your Christmas’ be…..”

They sat in their living room watching a DVD of Thomas Kinkade Christmas. It was beautiful depictions of a wonderous time when snow made it a Winter Wonderland and horses were pulling sleighs. People were bundled in their 19th century garb and they were ice skating on picture perfect ponds.

My husband’s father had a camera snapping pictures of the TV screen. I didn’t understand why until “mom” said that it was the poor man’s way of getting a Thomas Kinkade picture….I don’t know if he seriously thought that he could take a picture and have it enlarged for a picture to hang on the wall or if he was being funny. I think that he was serious in his endeavor and I thought, “How bizarre!!”. But, in light of the circumstances, it isn’t.

Both of my husband’s parents have dementia. Mom’s diagnosis is Alzhiemer’s and Dad’s is organic brain atrophy. No matter what the diagnosis, it is dementia and they live in a fog every day. They move in and out of the shadows of time and of their mind. No one knows where they are most of the time. They repeat themselves in actions. Mom repeats the same sentence 2 or three times and if it is a question, you answer the question the same way two or three times. Sometimes, I think it is a different form of “Groundhog Day”. It is the repeating of repeating that repeats over and over again. It is hard on a sane person’s sanity because you know  reality, but they are oblivious, so you are always struggling to right something that is always upside down. There is no way to describe what my husband’s brother lives with on a daily basis.

Most times, Brother spends his time trying to discover what has been done during the day and undoing it the next day. That is the “norm”. The disease is sneaky in that it hides behind a “normal” facade. By the time you realize that something is wrong, all of the poor judgements fall on top of them and it is a mountain that began as a molehill. Or, at least that is the way it happened in this family.

By the time that we realized that there was something terribly wrong, Mom and Dad had mounted a credit card debt that is over $23,000 with 33 percent interest, fraudulent financing on the mortgage and 23 new life insurance policies on Mom that were taken out over a 6 month period of time. It became very clear that something was wrong when their checking account was in the red to the tune of $1200 because all of the life insurances were set up on automatic withdrawal. By the time that Mom and Dad spent the money by going to the grocery store (going to the grocery happened at a rate of 3 times daily and they purchased the same things so there are mulitple bottles of steak sauce,  boxes of cereal, gallons of ice cream, and still no food in the house) and eating every meal out because Mom forgot how to cook. The account was drained and the overdraft fees amounted to hundreds of dollars. Dad also forgot to pay the property taxes and file for tax exemptions so the house payment raised $200. The liteny of financial messes was like trying to unravel a plate of spagetti, no one knew where it began and where it ended.

That was two years ago. Now, Brother has closed out all of the new life insurance policies, consolidated most all of the banking accounts and he has Power Of Attorney so he can file taxes and talk to the credit card sharks, but it does little to try to save them financially. They are most likely going to have to file bankruptcy. How sad to live a lifetime and to have everything gone. But the time has come that Brother cannot live with them because he still has children at home and the children are being sacrificed on the alter of dementia. It has to stop and it has to stop now.

Mom had a “break” or an “episode” the week of Christmas where she forgot how to eat with a fork or spoon. She woke up in the middle of the night in a state of hysteria. She did not recognize her son, Brother, and she was calling for her mother. (Her mother had been dead for over 30 years) She lost control of her bowel and bladder. They called an ambulance and admitted her into the local hospital.

It seems that a Physician’s Assistant had prescribed synthetic morphine patches to help with back pain. The patches seemed to “run out” and Dad would put new ones on early. Brother said that he had taken her off of the patches. This threw her into withdrawal which pre empted this break. If she didn’t come out of this, she was going to have to go to a nursing facility.

When Brother explained this to Dad, he just stared into space. He adopted this “deer in the headlights look” and did not acknowledge that he understood what Brother had said. We learned later that when Mom said that she wanted to go home for Christmas, Dad told her that she was going to a nursing home. It became clear that Dad understands, he wasn’t in agreement with what was said at the time.

It seemed a “miracle” when a few hours later, Mom came back from wherever she was and was oriented to day and time. (This was remarkable because she wasn’t lucid on a normal basis) It was clear that Brother had to bring her home.

My husband has mourned his parents being gone for the past few years. It would have been easier if they had passed away instead of seeing them behave in a way that made him feel as if he never existed. There were days that they understood that he had cancer and it was progressing and then there were days they seemed to think that it was Brother who had cancer. (Brother has cancer of the prostate. It is Husband who has the terminal stage of cancer) I think that it is worse to have them here and yet they are not here. In their minds, they have only room for each other and no one else exists. It is hard to loose your parents to the shadows.

We made the two hour drive. Not because we wanted to but because we believed that this was the last Christmas. It may be the last one with my husband on this earth. It definately was the last Christmas with the parents in their home and not in some sort of facility. It was a strange Christmas.

The trip was hard on my husband. Being around the parents was hard. Three days was more than enough time for everyone’s nerves. It definately is all that Brother can deal with. He has taken all that he can and he cannot take anymore. It was a Christmas that we will remember as a sad and pitiful shadow of what Christmas once was in this family.

If there is a next Christmas with all of the family still intact on this earth, who will know that it is any different than the last when those that you love live in the Shadows. They are lost to us and we are lost to them. It isn’t at all like the movie “Notebook”. It is one more sorrow as we face the uncertain future.

What will 2008 bring but more Shadows? It seems rather thick in its darkenss sometimes, but scripture says that as long as it is called Today that there is hope for salvation. As long as it is called Today there is hope for life and that is what we are holding onto for next year, Today.

Adding to the Shadows part 3

The journey has been fraught with many difficulties, but the obstacles that I am encountering now are the worst to date. I have had times of anger and frustration with insurances, billing departments and collection agencies yet I have not experienced the draining of internal fortitude that I had this afternoon.

Every milestone that my husband has reached has had a down side. He has reached a major milestone in the fact that he has survived long enough to be on Medicare. Many may not know that it is a great accomplishment to reach that kind of eligibility, but with a diagnosis of 4th stage/terminal, it is. He has outlived the prognosis of the doctors, which were 6 month to 2 years. He has survived 2 years and 4 months. But, along with survival comes eligibility of Medicare and the discontinuance of COBRA with his insurance company through his employer and it sucks.

The cost of COBRA was 1/4 th of his disability benefit. That is costly, yet it covered a $132,000 surgery plus many tests, hospital stays and medicines. Out of his 2 million dollar cap, he has 1.5 million left.  Overall, it has been fairly decent in consideration what 20 percent of that amount would have been….that is what Medicare would have paid and we would have had to pay the rest. That is what I am looking at now. 20 percent of whatever the cost of the treatment. I know that Medicare has negotiated the lowest cost of any treatment, but there is absolutely nothing that isn’t costly with cancer.

I spent this afternoon trying to find a supplemental insurance policy that would help with the outstanding costs that medicare leaves and I have discovered that in our wonderful state of Indiana, no one offers a supplemental plan if you are under the age of 65. That stinks. I talked to people from Texas to the East Coast and they have been consistent with their information, Indiana does not offer supplemental Medicare policies. I have found one possibility, but it is a long shot.

I called a friend in the insurance business this afternoon to see if she had any inside information and she found one company, but the premium was untouchable. We cannot afford to pay the premium. So again, we are on this merry-go-round where we are damned if we do, and damned if we don’t….I finally just cried.

Cried because of the senselessness of this business. No one wants the risk. That is a very true statement. We didn’t want the risk either. At one time, we would have had little worries because we  had adequate insurances in every area, but that disappeared along with the businesses that we owned. We have nothing and we are left with nothing…it is a very dark shadow and it makes me angry that the few things that make him feel good and gives him quality to this meager life he has left is going to be too costly to continue.

I suppose this is just another thing to add to the category of UNFAIR…but life isn’t fair. It is hard. There is no need to rail against the wind, the dark of the shadows or the storms….it just wears you out and that is what I am feeling, worn out….totally worn.

I always thought of myself as a resourceful person and I think that I was at one time, but every resource has its limit and I am coming close to my limit. Today, I spent 7 hours on the phone and to top the day off, I received a bill from a pharmacy to which we never submitted a prescription. It was fitting for this day. How ironic! We are billed for something that we never received and yet, it was so appropriate. This whole experience in the medical world has been about receiving nothing that has benefited his survival.

He has underwent so many things that have left him in pain and anguish only to loose his life all the same. I know that it has helped to prolong his life, but in the end, it is the same as the bill for something we didn’t receive….We are paying for his life and he will still loose it….

There are times I become so weary of this fight!!! I just want to sit down and not get up for a long time. But, that isn’t reality. I think someone described bravery of being scared and going into the fight anyway. I don’t think that I am brave, but it is how I feel sometimes…afraid, but going into the fight anyway. That is the only option left to anyone with cancer.

You have to go into a loosing battle and fight with the understanding that you are not going to win. It doesn’t matter if you don’t want the fight, or that you don’t have a weapon to fight with or any security if you fight and win the battle because the war is lost. It feels very hopeless.

And then I feel angry…just plain pissed off. I am angry at the healthcare system, the hospital system and angry at the fact that this is my life. I waited a long time for him to be in my life and now, he is leaving.

That is this moment. Tomorrow, I will pick up the phone and start all over again. I don’t know what else to do. I will continue to look for a supplemental insurance that we can afford and hope that there is one who will be allowed to operate in Indiana….

I suppose, after a day like today, you get an appreciation for Don Quixote and his impossible dream….

Adding To The Shadows Part 2

The following is an excerpt from a paper that I collaberated with my daughter in law for one of her college Sociology classes. She deserves the credit for writing the paper. I contributed to content from the experience with my husband. It should be noted that my son, the husband of the author, is a traumatic head injury x2 victim. He was injured while serving in the US Marine Corp.

Why does a free society allow insurance providers to dictate patient health care as deemed medically necessary by the attending physician?

     This paper focuses on quality, timeliness, and efficiency of medical care based on the allowable limits that insurance providers impose upon individual healthcare. This topic needs to be researched due to the fact of the rising costs of medical insurance which in turn causes individuals and companies to purchase less than adequate policies. This gives authority to the insurance companies to decide what medical tests, procedures, and doctors that a patient can select and it includes medically necessary pharmaceuticals. This takes personal empowerment from the patients and professional provider and gives the final decisions that were once made by the physicians and places it on  an impersonal enitity such as an insurance provider that does not have adequate medical training, empathy or understanding of patient needs.

     ………we are operating from the perspective that medically necessary healthcare is limited by concrete and immovable requirements as deemed by medical insurance carriers. …… The following passage is from the American Medical Association. This information reflects a case study in which the insurance provider of this patient limited or prevented adequate medical care.

     “Allison is the resident taking care of Renee and is concerned that Renee is not doing well enough to be discharged. Allison would like to keep Renee in the hospital another day to ensure that she remains afebrile on oral antibiotics and that she is able to go 4 hours between treatments. The HMO, however, refuses to authorize additional inpatient care. The HMO has authorized payment for a home nebulizer for Renee, and the administrator for the plan feels that someone of Renee’s age with her history should not require additional inpatient care.” (American Medical Association, 2007).

     There are many resources and personal accounts of individual freedoms being compromised by insurance providers dictating less than adequate or medically necessary healthcare. The following an excerpt is from an online blog of several individuals discussing inadequate healthcare treatment.

     “Insurance companies and pharmaceuticals have barged in and made their camp with our trusted physicians. We are losing out on recommended tests and proper physicals as well as unbiased decisions on prescriptions! Have you been refused tests you know you should be getting? Open up! Don’t stand for it! ( I especially talk for women, as they will be refused the same tests a man gets automatically saying-*it happens to women*, it’s this, or it’s that, and refuse a MRI, or other important testing!-it’s total Bul ****-with a capitol on the *bull*) Are we going to quietly allow these corporations to dictate our healthcare?” (E-thepeople.org, 2003).

References:       American Medical Association, (2007) HMO-Dicated Patient Discharge           Retrived 09-24-2007 @ http://www.ama-assn.org/ama/pub/category/12045.html    E-thepeople.org, (2003). Who is governing Insurance Companies’ Rights to dictate Healthcare. Retrieved 09-24-2007 @ htt/://www.e-thepeople.org/article/31509/view?viewtype=best&skip=10

………Conclusion: Are we as a society going to accept healthcare designed by impersonal insurance dictations or are we going to find the solution by raising our voice? This problem impacts innumberable families on a daily basis because at the end of the day, it is the quality of life that truly matters.

     The subject for the paper was what freedoms have we lost that we once took for granted. The healthcare paper was in response to my daughter in law’s recent days fighting with the insurance company for coverage of a medication for vomiting. My son has intractable migraine like headaches. Some days, he has as many as six/day. Not all headaches cause nausea and vomiting, but those that do exasperate his headache pain to the point that it is unbearable. When that takes place, my son has to be loaded up in the car and driven 20-30 minutes to the local hospital for treatment of IM medications. This 30 minute car ride is where my son screams in pain until he reaches ER.

     The medication that he needs is Zofran sublingual. This medication is the only one that can prevent the kind of episode that I described and the medication is also called “Gold” because of the cost. If my son had cancer, like my husband, the insurance company would have no trouble approving it because it is necessary to control the nausea and vomiting that results from chemotherapy. But, because my son has traumatic brain injury, the insurance company, in their great wisdom, withholds its approval because there are other anti-emetic drugs. They want to ignore that my son has taken all of the alternative anti vomiting drugs and they do not work for him. The Zofran does work.

     As my daughter in law argued with the insurance company, the realization came that 25 years ago, the doctor would have ordered the medication, the insurance company would have paid for it and that would have been that. Since the days of HMO and managed care, the insurance companies have become little gods and approve or deny a persons care.

    As my daughter in law continued to debate and argue the issue, I thought about the intangible aspects that these publicly traded companies can never value. They can never understand the terror that my grandsons endure as they are all in the car racing into the night with their beloved father screaming at the top of his lungs for 30 minutes until they get to the ER. If this Fortune 500 hundred company could see the horrified wide eyes of these two beautiful children, would they be so insistant in denying approval of this drug. What is the cost of “Gold” if it prevents my grandsons the emotional trauma that they will have to overcome in their adult years because they have a family with a 100% service connected disabled and unemployable veteran in their family? How can you give a monetary value to the nightmare that they have already lived through in their young lives????

     Just as my husband waits to see if we can get assistance for the cost of the Xeloda, which will determine if he stays here through the holidays or not, the question begs to be asked, who is in control over his body? Is he, or is it companies who control medicines? Right now, it is not my husband.

      Just something else that adds to our Shadows as we walk toward the sunset…….