Been there, done that

Blogging has become a wonderful tool for parents of disabled kids. While exploring Blogger, I have discovered so many fascinating blogs where parents celebrate their kids’ achievements, grieve their losses, support other parents on their journeys, vent their frustrations with the medical and educational establishments. They have created a network of support that spans the globe.

With my kids all grown up and mostly on their own, I admit to having a feeling of “been there, done that” at times. I remember my outrage at insensitive or condescending doctors. I remember the ache I felt when my kid was left out or teased. I remember my sweet sense of victory when I successfully fought to have my daughter with severe cerebral palsy educated in regular classes (the first time our school district had mainstreamed a student with such severe disabilities). I remember my pride at accomplishments, big and small.

I also remember that we had it a bit tougher back then, just one generation ago. Accessibility was not yet the law of the land. I had to bump my kids’ wheelchairs up and down stairs hundreds of times. I often had to leave my daughter’s wheelchair outside the tiny restroom stall and carry her in. Most children had never encountered a child with disabilities in those pre-inclusion days, so we endured so many stares and hurtful comments. For that matter, most adults had had limited exposure to disabled kids, and I often had to challenge their stereotypes as well.

But, when I start feeling smug or patting myself on the back for being such a pioneer, I catch myself. Over the last year or so, I made the acquaintance of a woman whose daughter is my age (56) and has cerebral palsy. We have spent a lot of time reminiscing about the 50s and I am struck by how nonchalantly she talks about raising a child with disabilities in that time. She mentions her daughter‘s stint in Girl Scouts: “Of course, I had to be the leader so she could participate.” She talks about signing her up for dance lessons. She tells me matter of factly how her daughter had to manage the stairs at school on her crutches. She recounts how her daughter was almost not allowed to graduate from high school because she couldn’t participate in PE (finally the family doctor, who was on the school board, intervened and got them to allow her to substitute another elective). And she proudly talks about how her daughter went off to college about 300 miles away, with an adaptive bike her dad had made for her to get around campus. I am really in awe of this woman, who, by her own account, was just a “country girl,” who assumed her daughter would have a normal life and made sure that happened in an era when it wasn’t easy.

So, when I read these blogs by parents who have only been on this journey one year, four years, or nine years, I may initially have that “been there, done that” feeling. I may feel somewhat smug or amused: “What? They think they’re discovering something new?” But then I pull myself up short. Yes, they are discovering something new…something that’s new for them. And it’s in the discovery that it becomes real for them.

If only...

For three or four months I have watched Gabriel get worse and worse. In October the psychiatrist at MHMR took him off clozapine, the medication that is the “gold standard” in treating schizophrenia. Within a week, I knew it had been a mistake.

I called MHMR many times, telling them with rising desperation that Gabriel was getting worse by the day. Sorry, I was told, the doctor is booked, the doctor got sent to another clinic on the day he was supposed to see her, the doctor is on vacation for 3 weeks. Meanwhile, the voices became unbearable, the hallucinations were frightening, he paced and laughed for hours on end.

I took him to the psychiatric ER five times. He told them he saw aliens who were trying to kill him (and that sometimes he thought I was an alien); they sent him home. He told them the voices were bothering him a lot; they increased one of his medications and sent him home. He told them he was scared because the mafia was trying to kill him; they put him in the hospital at his request, but discharged him a week later without changing his medication. He told them he sometimes thought about stabbing himself in the head to make the voices stop; they changed his medication, told me to hide the knives, and sent him home. He told them he saw assassins, the mafia, and Jesus; they admitted him to the hospital as a voluntary patient.

Yesterday I learned that they had gotten an Order of Protective Custody, ie, he had been committed. He says that the doctor told him he will probably be sent to the state hospital next week.

I am so angry! If only the doctors at MHMR or the ER had listened to us, if only they had tried to understand how bad things were, if only they had acted to get him back on track early on! We would have been spared months of pure hell AND Gabriel wouldn’t have regressed to the point that he has to be committed.

Reconciled

She was

Unseen.

She knew that the people she met

Simply looked right through her,

As if she were invisible.

She was

Unheard.

Her humor, ideas, opinions

Were met with blank faces, ignored.

Soon she alone listened to her inner voice.

She was

Unknown.

Her darkest fears, her dearest dreams,

Remained unspoken, held within,

Nourished in her secret garden.

Unseen,

Unheard,

Unknown…

Yet somehow she was reconciled to this existence:

Better to be unseen than to only see outer appearance,

Better to be unheard than to speak nothing of substance,

Better to be unknown than to be an open blank book.

Bush's note

So George W Bush left a note in his desk for President Obama. I wonder what it said????

1/20/09 The day we've been waiting for

Tomorrow's the day. We will finally wake up from the nightmare of George W. Bush's two terms to a new day. Unfortunately it will take many, many years, if not decades, for this country to recover from the damage this man has done to our country. In my opinion, he almost managed to do what Osama bin Laden couldn't: destroy this great nation.

I will be glued to the TV to watch the inauguration. I expect that the greatest highlight of the celebration will be President Obama's inaugural address. The second greatest highlight, at least for me, occurred yesterday at the inaugural concert, when Pete Seeger led the crowd in "This Land is Your Land." At age 89, Pete's voice has faltered a bit, but his spirit is as strong as ever.

Back in the hospital

I'll keep this short, since I did another all-nighter with Gabriel at the psych ER last night...seven hours. They admitted him and are apparently going to try to get him back on clozapine, which is the medication that he really needs. I'll keep you all posted.

One minute

I left my camera on this morning and this is just one minute of video it captured. You may find it annoying. You may find it disturbing. You may find it very sad. However it makes you feel, keep in mind that it is only one minute.

Now, multiply that feeling times 60 minutes per hour, up to 12 hours per day, for much of the last 4 months. This is what Gabriel and I have been enduring all that time.

According to the doctors at MHMR, the psychiatric ER, and the inpatient hospital, this is an acceptable outcome for Gabriel. Six months ago he spent his time talking with me, researching stocks, downloading music, playing basketball, going to the movies. No one should have to spend their life like this!

Please help Gabriel go to Johns Hopkins!

Dear Friends,

I am asking for help from everyone I know to help Gabriel get to Johns Hopkins for a psychiatric consultation. If you've been reading my blog, you know that things have been very bad for Gabriel for several months, with very little help from the doctors here. I talked with a psychiatrist at Johns Hopkins today and he felt that a consultation there would be helpful.

I am currently on short term disability again, due to back problems. After missing a lot of work due to my heart attack, my mother's stroke, and Gabriel's condition, money is pretty tight right now. So any help towards reaching our goal would be greatly appreciated.

Here's the link to our fund raising site http://www.fundable.com/groupactions/groupaction.2009-01-12.5144311663/groupaction_view?portal_status_message=Your%20changes%20have%20been%20saved.

To Gabriel

At the bottom of my desk drawer, tucked inside an envelope, is a small collection of my favorite photos of you. Looking at them, I can’t help but smile. What a little imp you were: exuberant, mischievous, curious, happy.

Today those times seem very far away or as if they belonged to someone else. It seared my soul to hear you say that you sometimes want to stab yourself in the head to make the voices stop. I feel so helpless, unable to silence the voices or chase the visions back into the shadows. I would give anything to give you some peace.

Another night at the ER

Maybe the psych ER should just reserve two chairs for Galen and Gabriel in the waiting room. Monday night we spent yet another night there. Gabriel came to my room about 11 PM and said he needed to go back to the ER because the voices were really bad. By this point, I have become the devil's advocate when it comes to seeking "help" there. Once again I reminded him that when he's gone there before, with exactly the same complaint, they haven't done anything. I suggested that he put on his headphones and listen to the radio to drown out the voices, as he usually does. He said he'd try. A few minutes later, he was back, again complaining that the voices were really bad. As I had heard the doctors ask so many times, I asked him what the voices were saying. "They say they're going to kill me...or that I should kill myself." OK, I knew we had to go.

At the ER, the waiting room was full of folks with very tired faces. Listening to the general conversation, I learned that some of these people had been waiting since 2:00 that afternoon. Sigh...I knew it was going to be a very long night. It was a pretty typical crowd. There were a couple of middle aged ladies with teary eyes, a young woman with her boyfriend, a teenaged boy with his mother who compared experiences in prison with another ex-con in the next seat, an intense young man, a homeless man who apparently had just come to get out of the cold rainy weather to sleep someplace warm. For a while we had to deal with an obnoxious woman who had come with her sister and somewhat elderly father, announcing with dramatic flourish that she had come to commit herself. When she wasn't granted immediate entrance to the exam area and was told to fill out the required registration forms, she started complaining loudly in a string of obscenities. "F-ing fill out f-ing forms? No wonder people f-ing jump off f-ing bridges!!" A staff person at the window told her that they'd get to her in a few minutes. So she went downstairs to smoke a cigarette and, when she returned, she was outraged that they didn't take her right back to the exam area, and her ranting escalated, with her family members hovering around her, trying to calm her down. Far from being sympathetic, I was getting more and more irritated. I'm not a psychitrist, but after all these years of living with my kids and dealing with lots of psychiatric disorders, she struck me not as someone who was suicidal, but as someone who had borderline personality disorder, who was there for one simple reason: the drama. She wanted to stir up her family and she wanted the attention. Sitting there, knowing the severity of Gabriel's problems, I was further irritated that she was demanding to be seen ahead of him and all these other folks who had been waiting up to 10 hours. I finally couldn't stand it any longer and spoke up: "You know, other people have problems, too, and some of these people have been waiting since 2:00." Oops. All eyes were riveted on me, and the woman instantly turned her wrath and her obscenities on a new target. I thought she might come barrelling across the room for me. After several minutes of verbal assault, she left with dramatic flourish, shortly before two security officers showed up.

The rest of the night was uneventful. Several folks finally stretched out on the floor to sleep while they waited for their name to be called. By the time they called Gabriel back to see the doc, it was 6:30 AM and we were the only ones left in the waiting room. The effete resident doctor sat aloofly at his desk, reading through the notes from Gabriel's hospitalization last week. He asked Gabriel about the voices. He asked Gabriel if he felt like hurting anyone else: no. He asked him if he felt like hurting himself. I was stunned and frightened by his answer: "Yes, sometimes I think about stabbing myself in the head with a knife to make the voices stop." Now, a couple of weeks ago, I would have been outraged that they didn't think Gabriel should be hospitalized as a danger to himself or others, but, knowing how worthless the latest hospital stay had been, even in terms of observing his behavior and mental state, not to mention adjusting his medication, I accepted the decision to send him home. I did convince the doctor to try Gabriel on a first generation antipsychotic medication, and, with prescription in hand, we left.

Fortunately, as of Monday, I'm off work on short term disability due to my back problems, so I can observe Gabriel on the new medication. As I write this, he's had 2 doses of this med that he is to take 3 times/day, and he was actually talking with me a bit last night. So there is a glimmer of hope...

The best health care in the world?

"Seven years ago, the World Health Organization made the first major effort to rank the health systems of 191 nations. France and Italy took the top two spots; the United States was a dismal 37th. More recently, the highly regarded Commonwealth Fund has pioneered in comparing the United States with other advanced nations through surveys of patients and doctors and analysis of other data. Its latest report, issued in May, ranked the United States last or next-to-last compared with five other nations — Australia, Canada, Germany, New Zealand and the United Kingdom — on most measures of performance, including quality of care and access to it. Other comparative studies also put the United States in a relatively bad light. "-New York Times, August 12, 2007

Many Americans suffer under the delusion that our medical care is the best in the world. Maybe they're equating "most expensive" with "best." Perhaps they're talking about the care the wealthiest, best insured among us receive. Most assuredly they're not talking about the uninsured, the folks on Medicaid, the folks with chronic physical or mental illness, the people who happen to live in states where human services are a low priority. Anecdotal evidence might not give a complete picture, but it's a telling part of the whole...

First, there's Gabriel's continuing sad story. I convinced the hospital not to discharge him on Tuesday, when they had done absolutely nothing for him. I asked the doctor directly, "What was the point of his being there, then, if you weren't going to try to adjust his medication?" I also pointed out that Gabriel himself had asked to be admitted (since doctors seem never to read the charts, I thought this fact might have eluded the doc). He agreed to start Gabriel back on Clozaril. But Friday he called to say Gabriel had not tolerated the drug due to a high heart rate, so he'd taken him off it and was discharging him on the same medications he had been on when he was admitted. I was SO frustrated. I asked him, "So what you're saying is that he will have no life, that he will never be functional again?" The doctor assumed a condescending tone of voice and began lecturing me: "He'll never be normal, he'll never be able to hold down a job..." With great exasperation, I replied, "I KNOW that...how about just being able to carry on a conversation, or do something besides pace and laugh all day?"

Well, I ranted in my car all the way to the hospital and was sinking into despair the rest of the day. Saturday morning I got online and started researching antipsychotic medications and alternatives to Clozaril. I made two important discoveries. Gabriel takes an injectable form of Risperadol and an oral medication called Invega. It turns out that basically they are the same medication! As one article on the oral med was titled, "Invega-Can You Say Patent Extender?" No wonder the combination of the two meds isn't helping much...it's just a huge dose of a single medication, packaged differently. The second thing I discovered was actually some information I had caught in passing on NPR a couple of years ago. The NIMH did a clinical study of the efficacy of different second generation antipsychotics, but at the insistence of some scientists on the study committee, one first generaton antipsychotic medication was included in the study. Now it is a common belief among psychiatrists that the second generation drugs are far superior to the first, but in this study, a moderate dose of the first generation drug was found to be every bit as effective as the newer (more expensive) ones. Plus the old drugs don't have the same serious metabolic side effects as the new ones (weight gain, diabetes, high cholesterol, etc). So why have the old drugs fallen out of favor? According to that NPR report a couple of years ago, it boiled down to the aggressive marketing by the drug companies.

Anyway, if you've managed to read through all of that, the point is that I'm going to ask his doctor to try him on one of the older drugs. He's never been on one before, so maybe he'll do just as well, or better, and might be able to lose some weight and get the diabetes under control.

Second anecdote concerns that pain I've had in my legs for at least 4 years that has severely limited my activities. I used to walk a couple of miles several days a week, even jogged part of the way. Then this pain began, getting so bad when I walk or stand that by the time I walk around the grocery store, my legs are killing me and are numb and I have this tightness in my hips like spasticity. Over the last 4 years, I've become less active out of necessity, gained a lot of weight, developed diabetes, and had that heart attack. Meanwhile, I've been telling every doctor I've seen about this pain, hoping that they would find out what's wrong and do something to help me. One doctor wrote it off as diabetic neuropathy. My current doctor tested my segmental blood pressure, to make sure it wasn't PAD. When it wasn't, she stopped listening to my complaints. Last spring, when I took the boys to the arts festival, the pain and tightness in my legs was so bad, I thought I wasn't going to get back to the car! So the next time I saw the doctor, I asked her if she would order an MRI. I had done enough reading online by then, that I was pretty sure I had spinal stenosis. I had the MRI (she still didn't get it, ordering it because of "back pain" and wanting to check for a disc problem). When I finally got a hold of the nurse for the results, she told me the MRI just showed "normal wear and tear." Shortly thereafter I had the heart attack, so I never followed up with the doctor about the MRI, until the last time I went in. I finally thought to ask her, "Are you sure that MRI didn't show any signs of spinal stenosis?" She checked my chart and said, "Yes, it showed moderate spinal stenosis." I wanted to cry. After suffering this pain for 4 years, not to mention seeing my activities so limited and my health deteriorating, I had finally been diagnosed and the diagnosis had simply been filed away!

So, I did more research and found that 3 years ago the FDA approved a new, minimally invasive procedure for this condition that has given a lot of people back their mobility and their lives. Tomorrow I have an appointment with an orthopedist who does the procedure and am fervently hoping that he thinks I am a good candidate for it.

My point is this: if we have the best health care in the world, why did no one listen to me all those years while my health deteriorated and why did I have to ask for the MRI and why was I told that I just had "normal wear and tear" and why did I have to find the possible solution online and refer myself to an orthopedist? To those who oppose any changes to our health care system, just remember, it might be working for you, but for many folks, it isn't working. Some people are driving a Lexus or Escalade, but many others are driving an old jalopy, others are riding the bus, and millions have to walk.

Farewell, 2008!

As I look back on the year 2008, it would be easy to dwell on all the trials and tribulations. But since I’ve written at some length about the negatives, I’ll give you all a break and remember the good things that happened during the year.

Our second treeing walker coonhound, Boo, joined our family in March. Coming from a background of being abused and/or never being socialized in the first place, he has had a slow adjustment. He still cowers or slinks away when anyone enters the room, but has finally begun to approach me to be petted and will snuggle up next to me on the bed.

The election, of course, was a high point of the year. During the primary season, Texas actually was part of the process, for once, and the candidates made several appearances here. Gabriel and I went to Dallas for an Obama rally.

We watched election results at the rehab hospital with my mother, whose 90th birthday was on Election Day. We were all thrilled with the result.

I had hoped to be able to take the boys on a vacation this year, but with all our medical problems and expenses, it just didn’t work out. But we did have some fun times close to home:

A hike at Dinosaur Valley State Park…


The Main Street Arts Festival…


The Fort Worth Zoo.


Although my mother’s stroke was one of the storm clouds of the year, the silver lining was that I spent a lot of time with her and felt grateful that I could help her, give her support, and be her advocate.

And lastly, this confirmed dog lover fell in love with a stray cat, whom we named Mufasa. For several months he was our porch kitty and all of us, but especially Marcus, got very attached to him. About a month ago, I saw the body of an orange cat in the street a few blocks away, and feared the worst. Several weeks went by and we didn‘t see Mufasa, so I had to face the fact that the dead kitty must have been him. But then yesterday, I walked outside to go to work, and here came a cat walking down the street. At first I couldn’t believe it was Mufasa, but when I called his name, he came to me! We were so happy to have him back, safe and sound!

So, farewell to 2008 and welcome 2009. May the new year bring us health and happiness.

49th in the nation, indeed!

In case I haven't mentioned it in the last 5 minutes, Texas ranks 49th in the nation in per capita mental health spending. That should give you an indication of the quality of services in our great state. So I suppose I shouldn't have been outraged by the phone call I got today from the social worker at the psychiatric hospital, informing me that they would probably discharge Gabriel tomorrow.

Now, I went to visit him briefly yesterday. He was talking a bit more, so I asked him if he was feeling better. "No, not really," was his response. Keep in mind that this is the county's public hospital mental health stablization unit, not some private country club facility. Images of Bedlam come to mind. So it's fair to say that no one in their right mind (no pun intended) would choose to be there if they could get out. I would expect Gabriel to say that things were fine just to get back to his cigarettes, music, and fast food. So, if he says he's not better, he must really be having problems, that even HE can recognize.

So, when the social worker told me that he might be discharged tomorrow, I couldn't believe my ears. I asked her if they had adjusted or changed his medication. No, they hadn't. I told her that I would of course come pick him up if they let him go, but that I was quite sure things would be the same as they had been for the last 2 months: hell. I gave her an extensive rundown of the recent history regarding med changes and behavior, just as I had already given it to the ER doctor and the unit nurse.

What I really wanted to ask her was, "What the hell have you all been doing with him for the 4 days he's been there????" It dawned on me that every time I have asked the staff how he was doing, the answer was either (a) I haven't seen him much today, I guess he's been in his room, or (b) he hasn't had any behavior problems. In other words, he has mostly been withdrawn and hiding out in his room, hallucinating and feeling paranoid. Great...big help. At least at home I notice if he's agitated or hallucinating or firing imaginary guns at the aliens.

Psychotic Christmas

Our house is very quiet tonight...Gabriel was admitted to the hospital last night. For the first time in two months, there is not the sound of hysterical laughing, high-pitched gibberish, or pacing feet. I feel a bit guilty saying it, but the calm is something of a relief. Here is how it came about...

To say our Christmas was low-key would be putting it mildly. For only the second time since I adopted Jesse, we didn't have a tree. With all that's gone on this year and my recent bout of severe depression, the holiday season has hardly registered on my radar. So there were no lights, no stockings, no tree, no hullabaloo. Frenetically, I did my rather limited shopping (tight budget this year after missing so much work and still paying hospital bills) in the last two days.

So on Christmas morning, it was a far cry from Christmases past. When all the kids lived at home, we gathered around the den, passed out the gifts, and then went around the circle, opening one gift at a time. I had wanted the kids to take the time to admire and appreciate each gift. But with dwindling numbers, that tradition fell by the wayside. This year it was even less ceremonial, as Gabriel paced back and forth through the den and kitchen, opening a present, sometimes seeming to forget what he was doing. Soon it was time to get ready to go eat at my mother's center. Gabriel required frequent reminders to brush his teeth and put on some deodorant. I gave up on trying to get him to change clothes.

At my mother's we had a delicious buffet. The meal went fairly well, though we continue to get quite a few stares when we show up for a special meal. I guess we seem quite a spectacle to some of these old folks. Gabriel hardly spoke during the whole meal, of course, as he now rarely speaks to anyone unless it's to ask me to take him to some fast food place. At some point he left the table, and I figured he'd gone out front to pace in the parking lot and listen to his radio on the headphones (this is how he tries to drown out the voices).

Back home, he was withdrawn and morose. The laughing was gone, giving way to a very depressed state. He went from room to room, spending some time lying on Marcus' bed while Marcus watched TV, lying on my bed, sitting silently in my computer room while I worked and watched TV. He didn't interact, but seemed not to want to be alone. Much of the time, he sat with head in hands, the picture of misery. I asked him how he was doing, was he hearing voices, etc, but he flatly said he was OK.

But a few minutes later, about 11 PM, he came to my room and asked me to take him to the hospital. I admit that at first I was reluctant. He'd been to the psych ER 3 times in recent weeks and all they did was adjust his medication once and send him home. I figured it would be the same this time. But when he said "I'm scared," I decided he should go.

Amazingly, we were the only ones in the waiting room. I was relieved to see that the doctor who was there was the best one we've dealt with in the past, a very kind person I first met at the dog park a few years ago. He talked with Gabriel and with me, and I couldn't believe my ears when he said he was going to admit Gabriel and left to do the required paperwork. Gabriel had been in much worse shape during his previous visits, but had never been admitted. Then it dawned on me that the difference was that Gabriel himself had asked to come...it was a voluntary admission, not a commitment...at least for now.

I didn't go see him today. I felt bad about that, but for one thing, I knew we would just sit there in silence while he hallucinated, and for the other thing, I was afraid that if I went he would want to leave with me and, since he's there voluntarily, they'd have to let him go. I'll go for a short visit tomorrow, probably, and take him some clothes and toiletries. But today I took advantage of the quiet and calm to unwind from the tension of the last two months. Aaaaaahhhhhhh.....

Храмы России

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Translation:

On the serene holiday of Christmas
Candles flare up, bells call out
The time of meeting.
Again the distant star
Points the way,
But each one seeks
His own path to the cathedral.
In cathedrals of Russia, on Christmas evening,
We are healed by the spirit of highest hope.
Cathedrals of Russia…love and redemption
And the first contact with Eternity.
In the hour of doubt and trouble you hear
Those words which were given
To us from on high.
On Christmas you open
The doors of the cathedral,.
The triumph of shining faith
Will be with us.
In cathedrals of Russia, on Christmas evening,
We are healed by the spirit of highest hope.
Cathedrals of Russia… love and redemption
And the first contact with Eternity.

I'm not sure what Christmas means to me anymore. I would say I have no faith at this time in my life. It is simply too difficult for me to reconcile the idea of a loving, omnipotent God with the suffering of good people and innocent children.

And, yet, there is something within me that is moved by the spirit of the day. Strains of certain carols stir deep emotion. The message of hope, peace, and goodwill still resonates. In the song above, I love the verse which says "Again the distant star points the way, but each one seeks his own path to the cathedral."

Perhaps I am lost, but perhaps I am simply on a very long detour or a rugged path through the wilderness or wandering in the dark of night...

Oxymoron of the Day

And the Oxymoron of the Day is: Reality Television.

While we all could think of hundreds of examples, no doubt, I learned of an outstanding example yesterday. In a blog entry last January, I mourned the passing of my friend Phyllis. Her story in a nutshell: she and her husband Darrell created and raised a large family together, 24 children, some biological, some adopted. Most of the adopted children were considered special needs because of physical or emotional disabilities. In 1995 tragedy struck, when Darrell died unexpectedly of a heart attack. Phyllis, instantly a single parent, did an amazing job of rearing her children. But several years ago, she developed pronounced weakness in her arms and legs and was eventually diagnosed with ALS. She passed away last January. One of the grown children returned to the family home to care for the disabled and minor children who remained at home.

Yesterday I ran into a member of Phyllis’ church, who told me that the church had applied to the “reality” show Extreme Makeover: Home Edition in the family’s behalf. You see, the family lives in a 1970s vintage home, built on 3 levels, which makes it very difficult when they’re caring for 2 young adults with severe physical disabilities in wheelchairs. From this woman’s report, Extreme Makeover gave serious consideration to the application, but in the end, rejected the project. And why was it rejected? Because the family's story didn’t have a “happy ending” and was too “depressing.”

So much for “reality” television…

The flood

Well, it finally happened. I had a major meltdown this week. I suppose it was bound to happen, sooner or later. I mean, the stress has pretty much been unending all year: Marcus’ two surgeries and his slow recovery, the bad evaluation I got at work in June, my heart attack in July, my angioplasty in August, Gabriel’s deteriorating condition since September, my mother’s stroke in October, the financial hit of missing so much work and paying medical bills. Through it all, I’ve been quite depressed, but have shed very few tears…until this week. Once the dam was breeched, the trickle of tears became a flood that lasted well over 12 hours.

So what was the straw that broke the camel’s back? (I know I’m mixing metaphors, but I guess my brain is still drying out.) Since it involves work, I can’t go into too many details, but the bottom line was this: I was disrespected. My professional opinion to discharge a patient was questioned and the company is sending another therapist in to re-evaluate the patient and give a second opinion. Never mind my 30 years of experience in the field…I have someone second guessing my professional judgment. I wish I could quit, but the reality of needing to stay with this company so I qualify for health insurance and FMLA (and maybe long term disability) overrides my self-respect.

She saw her life like this::
A stone was thrown into a tranquil pond,
And gentle concentric ripples
Spread in ever-widening circles.
Then, reaching the barrier of the shore,
The waves, now weaker, reversed direction,
And the circles began to shrink
Until the crossing waves died completely,
And once again the pond, so still, reflects
The golden light of the setting sun.

As good as it gets

Incredible. Tonight Gabriel’s giddiness turned to moroseness. As we sat at the kitchen table, eating supper, he kept looking at me intently. If you ever saw Charlie Chaplin’s Gold Rush, it was reminiscent of the scene in which Charlie and a gold rusher were snowed in in a mountain cabin, without food. The gold rusher stares intently at Charlie, hallucinating that he’s a giant chicken…supper! That’s how Gabriel was staring at me. I started asking him if he were hearing things. Yes, voices. Did they tell him to do bad things? Yes, no. Was he seeing things? Yes, aliens. What were they doing? Trying to kill him. When you look at me, what do you see? Sometimes I see an alien.

That was it. Time to head back to the psych ER. I have to admit it scared me that he thought I was an alien, who was trying to kill him. I thought they would keep him at the hospital. I thought wrong. They STILL don’t think he’s a danger to himself or others, so they sent him home. Matter of factly, they stated that no drug is comparable to Clozapine, but he can’t take it now because of the white blood count, so although they increased his other medication, I shouldn’t expect his delusions and hallucinations to be controlled.

This, apparently, is as good as it gets.

Update: Hanging on

It’s been a while since I’ve posted a blog here. I’ve been short of time, energy, and inspiration. But thought I’d write the obligatory update:

My mother got out of the hospital on Nov 21st, about a month after she had the stroke. I’m pleased to report she was able to return to her own apartment at the independent living center, initially with a 24 hour/day assistant. But she is doing so well and needs so little assistance that we’ll end the 24 hour service at the end of this week and just pay for an aide at the center to help her with laundry and a few other small tasks. Her language is still severely impaired, so she has a home health speech therapist working with her three times a week. Everyone who has worked with her (aside from the jerks at Healthsouth) have commented on what a tough lady she is. Yep, that’s my mother.

While making daily trips to the hospital and getting things arranged for Mother’s return home, I’ve also been nursing my coonhound Boo through a serious injury. In my backyard I had a piece of lattice held up with two metal stakes. Foolishly, I never considered them a hazard. One day I came home from the hospital and noticed that Boo was awfully quiet and just lying by my desk. After an hour or so, I looked over at him more closely and saw that he had a huge gash on his side, about 8 inches long and gaping almost 2 inches wide! I finally figured out that he must have tried to jump over the little lattice fence, which he has done hundreds of time, and must have missed the jump and come right down, catching his side on the metal stake. So off we went to the 24 hour animal emergency clinic, where he had to be put out and stitched up. In spite of having an e-collar and antibiotics, the wound got infected and most of the stitches pulled out. So we just had to let the wound fill in. Poor Boo. In addition to the pain, he had to suffer the humiliation of wearing the e-collar (he’s heard every satellite dish, lampshade, and conehead joke in the book) and a white t-shirt to keep the wound covered. I’m relieved to report the wound is finally almost healed.

And then there’s the worsening situation with Gabriel. He has been taking his medication, but due to high white blood cell counts, he had to be taken off of Clozapine (the “gold standard” medication for schizophrenia). It’s obviously the one he needs, because since they took him off it, Gabriel has deteriorated fast. For the last month, Marcus and I have listened to up to 20 hours a day of hysterical laughing and constant pacing. At this point, I probably should be committed myself! I have been calling MHMR for more than a month, begging for them to get Gabriel in to see the doctor, but she wasn’t even there the last time he was scheduled to see her, and won’t be back at the clinic until Dec 12. I must admit, I’m feeling pretty hopeless right now. From the reading I’ve done, it appears that there really isn’t an effective alternative to Clozapine, not to mention that the type of schizophrenia Gabriel has is the most resistant to treatment and the one with the worst prognosis.

Sometimes it’s really hard to keep hanging on…