Wednesday, December 31, 2008

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.

Monday, December 29, 2008

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.

Friday, December 26, 2008

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 was a voluntary admission, not a 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.....

Thursday, December 25, 2008

Храмы России

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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...

Monday, December 15, 2008

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…

Saturday, December 13, 2008

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.

Friday, December 12, 2008

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.

Friday, December 05, 2008

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.

Wednesday, December 03, 2008

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…