Saturday, January 31, 2009

Difficult week

We got back in the wee early hours this morning from an emergency trip downstate about my dad.

He has not yet been diagnosed - the type and origin of his brain infection is still unknown. His brain biopsy from Christmas eve has made the rounds from his regional Hospital, to U of M pathology, and is currently still at the University of Washington for specialized testing. His high volume lumbar puncture revealed massive amounts of white blood cells indicating infection, but not what type of infection. Cultures are being run for fungal infections, which take 6-8 weeks, believe it or not.

My dad was released from U of M about 2 weeks ago, when his mental confusion and erratic behavior caused by the brain infection seemed to subside, as they awaited the results of these specialized tests. He was very weak and could hardly walk so he went to stay with his brother temporarily- just a month ago he was a strong and vibrant active 62 year old who ran his own construction business.

After he recovered his physical strength a bit, he refused to stay at his brothers and returned home where he lives alone. He did ok for a few days with my uncle and his wife checking up on him, but his behavior started falling apart again. No one could reach him - he had apparently thrown away both his cell phone and his home phone because "they didn't work". He put his mattresses from his bed out in front of his house, in the snow. He broke the TV's in his house because he couldn't get the remotes to work. He bundled up his trash, and threw it down the basement stairs. He went to a car dealership and purchased a new car (even though he already has a newer car). It was a stick shift, and he would take out the car and "forget" how to drive it or where he put it. He walked home 2 miles in the freezing cold without a jacket because he couldn't remember how to unlock the car.

Last Sat night, his neighbors (with whom his is on very good terms) called the police about his increasingly bizarre behavior. The police took him to a psychiatric hospital who refused to admit him because he doesn't meet any criteria of mental illness and his issues result from a medical condition.

On Sunday, my dad was trying to get into his new car which was parked in the driveway. When he couldn't immediatly open the door (it was locked) he began pounding on the door with a mallet. When that failed to produce the desired results, he got into his other car, which was in his garage, and repeatedly rammed the new car with his other vehicle, in an attempt to move it out of the driveway. The neighbors called the police again. The police took him to the regional medical center and petitioned to have him admitted against his will. He was.

We drove down, as well as 2 of my three sisters, one from Mobile Al, and the other from Nashville TN. We met with the hospital social worker who explained that my dad needed an immediate guardian appointed to safeguard his physical and financial well being until he could hopefully be treated for the brain infection after the cause is diagnosed. The hospital has provided documentation from it's physicians that my dad's executive funtion was significantly impaired and he was incapable of making decisions. We went as a group, us three sisters, Wood, my uncle and his wife to probate court that same day to petition for emergency guardianship for my dad.

The court, in its infinite wisdom, refused to grant emergency guardianship. Because he isn't in immediate need of a life saving medical procedure, like a ventilator or something. The fact that he can't be released from the hospital, no medical decisions can be made, and none of his bills have been paid since early december is apparently no concern to them. They assigned a court date of March 2nd to hear the case. Yes, March 2nd, over a month from now. At which time they may, or may not, assign a guardian for my father. My dad will be "warehoused" in the hospital until then, as he cannot be released for his own and the safety of others. For an entire month. He is receiving no medical treatment, as no one can seem to decide how to treat him. The hospital, recognizing his current limited faculties will not allow him to check himself out AMA. We cannot move him into a skilled care facility, which would be more appropriate, because we don't have guardianship. We can't pay his bills. But the court deems this not an emergency.

Wood and I had to leave to return home to work. I'm the closest daughter, and I'm 8 hours away. The entire situation is completely unreal. I hadn't ever realized that someone completely capable, independent and competant could literally lose control of their mental capacity literally overnight, short of a huge brain trauma, like a car accident. This is not a slow decline, a part of the aging process - my dad is a relatively young, very active and healthy guy. I fear that if they don't begin SOME sort of treatment soon, the damage done could be permenent. I never imagined it would take this long to identify what he has and how to treat it. With his compromised immune system, a month in a germ filled hospital seems completely unacceptable if he is not receiving any treatment whatsoever. My dad is lucid and isn't "out of it", so he knows what is happening to a certain extent. He doesn't understand why he is in the hospital and seems defeated that he can't go home. He seems to me like he has given up the fight and given up. I cried a good deal of the way home - I feel completely powerless.

Friday, January 16, 2009

35 below zero....

This is our second day where wind chills have been this cold and schools have been closed. The entire week has been frigid. This winter has been brutal this year - the worst since we moved up here. We are about 60" above normal for snowfall this year. At this rate, we'll end up well over 300" for the winter season. It's getting to the point that is is very difficult to see around the corners at intersections - the snow is that high that you are not quite sure if traffic is really clear or not. Folks are having to dig their mailboxes out - the snow is high enough to cover them completely.

I am so sick of being cold. At work, I have only 2 heated mattress pads and 6 electric blankets left in stock for the season - they have just been flying off my shelves. However, we have plenty of shorts, capris and summer tops, just landed for spring. Guess the corporate buyers at our headquarters in Texas need to spend some quality time up here - we won't need shorts until late June at the earliest. In these tough economic times, who is going to spend money that is tight for clothing that you can't wear for a solid 5 months??? Meanwhile, all winter apparel is on deep, deep clearance, and my customers are snapping up great deals like infant/toddler separates for $1.18 each, kids winter coats for $8.98 and Women's sweaters for $5.99. I bought the girls about a dozen pair of jeans yesterday - they were $2.98 each, and cute tops that were $1.78 each. Those prices were BEFORE my employee discount. All of our clearance is an EXTRA 40% off the lowest marked price. I don't think you can shop at thrift shops for those prices. Deals abound - if you haven't been to the mall lately, it's definitely worth checking out to stock up for your family.

Now, the important stuff....

My dad is stable - no change and he hopefully will have the CT scan in the next day or so, followed by the repeat spinal tap. We continue to pray and have hope that the dr's can identify and resolve this crisis.

I have become a regular at daily Mass in the past few week, between my dad's health and my oldest daughter. I admit that I can't fathom the big picture at all at the moment. Paradoxically, there has been great peace and joy in my growing closer to Him and I have received some very unexpected graces.

"And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."

Sunday, January 4, 2009


We just got back to Marquette this evening. My dad got out of the hospital yesterday. It is believed that this significant brain infection is caused by a previous virus or some sort of exposure from the past - possibly even as far back as when he was stationed in Lemoore California (where I was born) back when he was in the Navy. The theory is that this unknown virus or whatever was inactive until his Rhumatoid arthritis IV treatments, Remicade, significantly supressed his immune system, causing it to become active and attack his nervous system/brain. They have sent his brain biopsy to Washington State university for some very specific tests. They need to to another spinal tap, so that the fluid can be sent to specialized labs across the country so that they can identify the organism. They have a few specific ones in mind, but they need to be sure, because the treatments for them have significant side effects and can even be fatal. He can't have the spinal tap until he fully recovers from the brain biopsy, as there is an accumulation of fluid in his brain, so they will wait about 2 weeks, if he doesn't get any worse in the meantime, and do the spinal tap then. He is still significantly ill, unfortunately. It was excruciating to have to leave to return home.

The specialists at U of M are top notch, and I can see where they get their reputation from - what an incredible place. If you have to be sick, that's the place to be. They are obviously used to seeing things that are VERY far from the ordinary.

I got to see my younger sister while we were down there. When I last saw her, G was only a baby. She's never met A at all. We all went out for Ethiopian food at a restaurant a few miles from the Hospital.