[ music | 12 – Duran Duran – To Whom It May Concern ]

Today I sent out an email to the WWW-Style Mailing List. I’m sure most Mozillians don’t read it, however, so I’m reposting it here for comments, opinions, etc. Please leave your thoughts in the comments as I’m interested in everyone’s opinion on this.

[ music | R.E.M – Try Not to Breathe ]

Well, crisis averted, the world moves on. The bleeding was minimal, stopped fast, and by Sunday night, the only lasting effect was some decreased use of her right hand. The musculature is just as strong, she can squeeze her fingers just as well as ever, but opening her hand doesn’t seem to work, so she’s going to need some rehab for that. Other than that, there’s no slurred speech, no muscle tone loss, no drooping of the facial muscles on the right side, zip.

They were unable to find the cause of the clot, however. They did CT scans and an MRI with contrast, a body scan to look for tumors, did an echo cardiogram, blood work, nothing abnormal showed up. During the MRI, they were looking for aneurysms, and found none, but they did find four older small clots. Before now no one had determined the physical cause of her dementia, so there’s some speculation these may have been at least a partial cause. It’s odd because there were never any symptoms of stroke, so both the unknown origin of these clots and when they occurred are mysteries. But they put her on heparin in the hospital, and she’s on a long term blood thinning agent. She’s back at the home and doing quite well now.

One of these days I’m going to get a little rest, too. 🙂

[ music | I’m not playing any music… ]

My mom’s now had a stroke, with some bleeding in the brain.

She had recovered somewhat from the incident a couple weeks ago, but not fully. She was markedly worse than before, and there were progressions of her disease that made it impossible for me to continue to care for her at home any longer. I was receiving great help from the UPMC Northwest social worker, and we were working on placing her in a nearby nursing home that has a special dementia unit, but they didn’t have any openings yet. We were going to have to move her Friday the 20th. We were going to have to temporarily place her in a facility about 25 miles away until the nearby home had an opening. Thursday night, a resident passed away, opening up a bed. This meant mom could go directly to the near facility where she was going to end up sooner or later anyway. to the family of the woman who passed, my condolences. That woman didn’t linger long, thankfully, she took a bad turn just a few days prior, and wasn’t conscious during that time. She died quickly and painlessly, with her loved ones near. It also allowed for the best possible care for my mother to happen, prevent a temporary stay far away, and two transports that could provide for emotional stress to a dementia patient.

I visited her yesterday. She was already doing better than she had been in the hospital, being calmer and easier to talk with. She even managed to get a good night’s sleep last night. She was eater better too.

Today, about 2pm, I got a call from the home. She was being helped into the bathroom, and collapsed. “She seemed to pass out.” They got her back to her bed, but she seemed to be having weakness on the right side, and didn’t seem to be able to squeeze the nurse’s fingers. There was some concern it might be a stroke. I agreed and they sent her back to the hospital ER. It was a stroke, and it had started to bleed. A combination of an ischemic stroke and hemorrhagic stroke. She’s been flown by med-evac helicopter to Pittsburgh.

She’s not in the ICU, so she’s not imminently critical. She’s in the neurological unit while they run a gamut of tests such as a CT angiogram on her head to determine exactly what is going on with the brain blood vessels. I have no idea what else is happening, won’t find out till later and tomorrow. In the meantime I have to figure out when, and more importantly how to get down there. My car’s undergoing a transmission transplant and while it was nonfunctional I let the insurance go, I need to get insurance again. This was all going to happen at the beginning of next month with some paychecks coming in. Nothing like extra stress to keep you on your toes.

P.S. I just turned 29 in March. She’s only 63. This isn’t the kind of thing you expect at these ages. Not that anyone ever expects it…

[ music | John Cage – 4’33” ]

Today we had a hearing at the hospital. On Thursday, since my mother was not in a condition to admit herself, I had to make an involuntary commitment. Today’s hearing was to determine if there was cause to continue the involuntary commitment for up to another 20 days. There was a court appointed attorney to represent her. His job was to strenuously argue her case. The social worked from the hospital said that this attorney was quite good at it, and had several times successfully convinced the court clerk (who reports to a judge) to release a person against the doctors’ advice. After speaking with my mother for a few moments, the only thing he asked the doctor during his “cross examination” was what happens if she needs to stay past 20 days. There are contingencies for that the doctor explained. The attorney put up no argument against keeping my mother at the hospital. She’s extremely incoherent.

During the next 20 days the hospital social workers are helping me place her in a care facility nearby. There are two excellent facilities with ten miles of me, luckily.

What this means is my mom left home Thursday, and isn’t coming back. I miss my mom. It wasn’t supposed to end this way. It wasn’t supposed to happen so fast.

[ music | Depeche Mode – Policy of truth ]

I’m a little tired of ignoring a rather large elephant in my room here, so this is me acknowledging an elephant you in all likelihood didn’t see. However, I do, and I want rid of it. So I’m going to partake in the typical self-indulgent blog post. I don’t want pity, I just don’t want to pretend there’s nothing wrong anymore.

At the age of 28, I officially became the caretaker of a parent with dementia. If that seems a little young, it is, because the parent is definitely on the young side of the bell curve of dementia patients. And as often the case, I’d been a caretaker for several years before the disease was actually diagnosed. It’s amazing how effective we can be at lying to ourselves and avoiding conclusions we want to avoid. I was so good at it I made a complete ass of myself to several people for about six months at the end of 2005 and the start of 2006.

At the start of May 2006, things devolved to an untenable state, and an ultimatum was issued. Either my mother checked herself into the hospital to determine what’s going on, or I would. In a wonderful turn of real life melodrama, my statement was, “I’d rather have you hate me and be well than love me and be sick. One way or another, this is going to happen, today.” She checked herself in, and within a week, we had the diagnosis.

Dementia is a spectrum of diseases rather than a single specific one, with the most commonly known type being Alzheimer’s disease. Dementia tends to describe the condition of the patient and symptoms rather than the cause. She doesn’t have Alzheimer’s, nor does there seem to be any easily recognizable gross organic defect like what you see in Alzheimer’s, Parkinson’s, or Dementia with Lewy Bodies.

She was started on several medications immediately, two of which I cannot speak highly enough. Aricept and Namenda. Her reaction to these was rapid and incredibly positive, far more than one would expect reading the literature. Within a few weeks she was significantly more lucid and coherent, and far more capable than she had been in quite a while. She wasn’t perfect, but in these situations, you’ll take 80% of normal when you can get it. For roughly a year things went so much better. For that year I an unable to express my gratitude.

However, about two months ago, things started to decline again, with alarming rapidity. Last week we went back to the doctor after only having a check-up three months ago. We tried some adjustments to the meds, and things looked to improve a little. Until Thursday. Without unnecessarily delving into detail, I was forced to hospitalize her again to see if we could see what was going wrong now. It’s somewhat of a crisis, and things have never been this bad before. Things were actually quite fine Wednesday, we enjoyed the local fireworks display. I don’t know what changed, and I don’t know where things will go from here. We’ll see shortly I assume. There’s a meeting tentatively scheduled Monday with the doctors at the hospital.

I’m saying this because I need to unload, and to stop acting like this stressor doesn’t exist. I’m also saying this to remind people of the old saying, “Life is what happens to you while you’re busy making other plans.” It’s rather prophetic that John Lennon said that the year he died. Three dear friends lost parents of their own recently. One’s father died of heart disease, another’s mother to ovarian cancer, and one just a month ago lost both to a car crash. My situation is by no means unique or unusual.

I never had a good relationship with my father, but I love my mother dearly. If you got along with one or both parents, pick up the phone, talk to them, tell them you love them, whatever. But cherish whatever time you have with them, your siblings, your kids, your friends. Life is far too short, and goes by far too fast. It’s like falling from a cliff at night: it’s exhilarating, it’s scary, and you never see the end coming. Enjoy it while you can. Every day can be the most wonderful gift in the universe.

Just don’t get caught making plans.