she rants, she raves

and gone

2011-03-24T19:28:00.000-07:00

Yesterday night, just about an hour after my last post, my dad crossed over. I am sad, but glad that he is at peace now.

Nearer

2011-03-23T20:23:00.000-07:00

Probably only a few more days now, if even that many. Or maybe only a few more hours. Can we learn about living from the dying?

Time passes

2011-03-16T19:36:00.000-07:00

It feels like we are all in a holding pattern. Dad is still bedridden. I don't expect that to change. Some days he mostly sleeps, or naps, with short periods of wakefulness. Other days Dad has longer times of wakefulness, and we talk a bit and joke around. His sense of humor hasn't changed. Dad almost always recognizes us when we come to visit, but often later thinks we are somebody else from his life. Some days he eats and drinks a small amount and other days takes only the water he needs to swallow medications. The hospice nurses say Dad is "transitioning", a period before death that can last anywhere from hours to weeks. Nobody really knows what to expect.

Many changes

2011-03-04T12:04:00.000-08:00

The last 2 weeks really got bonkers with my Dad. He slept only a few hours a night and would wake up believing strange things were happening. He threatened his caregivers, refused to take medication, tried to leave the house in the middle of the night, tried to call 911, sneaked medication he wasn't supposed to have. And then the hallucinations started. During all of this hospice would make changes in Dad's medications, trying to find something that would help him sleep during the night, and then also trying medications to reduce the delusions and hallucinations. I kept feeling like I was 2 steps behind.

Every time we, the family members, thought we had a good plan in place for dealing whatever the most recent craziness was, we'd just as quickly find out we were caught short. Again. Always hoping the next medication change would help. Wondering what might happen next. Wondering if the decisions we were making were the right ones.

We were all committed to keeping Dad in his home as long as practically possible, and keeping him as happy and comfortable as possible. Fortunately, Dad hasn't had issues with pain so far, ibuprofen has worked for any physical pain. The emotional pain is harder to deal with. Pain caused by delusions; of events he's imagined happening, or imagined happening in the past. No amount of discussion would convince Dad that those events weren't real. Much like while I'm dreaming, my dream seems real while I'm in it, and the emotions I feel in the dream and even when I wake from the dream are real. The events aren't really happening, but the emotions are. We finally stopped trying to convince Dad that those events didn't happen, and instead just let him know that we were sorry about how awful he was feeling. He doesn't like that so much either, because he feels we are patronizing him.

Throughout all of this, I've mostly felt unprepared and frequently felt inept and frustrated. With myself. While I am, I think, ready to deal with my Dad's death, I see now that death is just an ending. Its the chapter leading up to the ending that is difficult and contains many surprising twists and turns. I've lumped it together with most of the rest of life, as in, there is no one right way to do this. We just do the best we can, seek advice from those who have traveled this way before, make mistakes, take our bruises and keep going.

The day before yesterday, because of Dad's unpredictable and sometimes aggressive behavior, we were wondering if we would have to move Dad to a facility instead of providing care in his home. Yesterday, things changed. Dad seemed okay in the morning, by our most recent standards, but then slowly started to sort of deflate. It started with difficulty in moving his left arm and leg, by afternoon he was in a bed, sleeping. We can rouse him to take his medications, talk a little bit, but then he just goes back to sleep. He seems very comfortable, and its like he's been waiting to take this nap for a long time. There is relief. For him, for me, for the rest of the family. We don't know what changes will happen next, even the hospice staff say Dad has surprised them at every turn. Right now, he is resting. We are resting.

The hardest parts

2011-02-06T21:49:00.000-08:00

I feel very matter of fact about my dad having brain cancer, and knowing that he will die from it. The part that is driving me 'round the bend is how the disease seems to steal away parts of him first. Personality changes, forgetfulness, obsessions, unpredictability, making up a fantasy world. I wasn't around him all that much while I was growing up so I'm always asking my sister, "Has he always done this?" Whatever the this might be. Sometimes things seem pretty nutty, and we remind each other that it's the cancer, not him, and try to maintain perspective.

Dad doesn't walk so well anymore, and usually uses a cane. In truth, he should be using a walker, but he won't. He's tripped and fallen a few times, he's fallen asleep sitting on the edge of the bed and then tumbled over. Twice. He is sometime very forgetful. My sister and I decided he shouldn't live alone anymore. Hospice agreed. He didn't like that either, but conceded. So now my stepbrother stays with Dad a few days a week, and an in home healthcare aide stays a few days a week and the other days Dad spends with his girlfriend, either visiting her in her hometown or she staying a few days here. I go over and visit for several hours, twice a week. We still have some great conversations.

Hospice

2011-01-10T10:32:00.000-08:00

The hospice people are wonderful, my sister is convinced that only the nicest possible people are allowed to work for hospice. I think so too.

Normally, I'm sure its very simple to get a hospice referral. The physician or someone in the office sets it up. My sister called the oncology office to request the referral for our dad. Whoever answered the phone refused to talk to her, even though she has power of attorney and Dad has signed forms for medical release and whatnot on file. She, and her husband both, called the office and left callback requests for the doctor, and he claims he never got those messages. Really, it shouldn't be this hard. I know there are patient confidentiality laws, but they wouldn't even talk to my sister.

My sister is persistent and resourceful, so she called Dad's regular physician's office for help. They were very helpful, explained what they required from her in order to process the request, and set up the referral. And we got to meet the nice hospice people. There is a nurse that right now stops by twice a week, a home healthcare aide who would stop by twice a week to help with light housekeeping and cooking if my dad would let her, and a volunteer who plans to stop by twice a week to keep company and help if Dad wants to make cookies or something. After a previous incident, Dad isn't supposed to do any unsupervised use of the oven or range top. Microwave is ok. Later, and as needed, the frequency of nurse visits may increase, and the hospice doctor can prescribe drugs to alleviate pain, anxiety, agitation, and other distresses.

All of the hospice visits, in addition to our own, are our way of keeping an eye on Dad. The hospice nurse is concerned about Dad living alone, and told us that sometimes things go bad suddenly, like waking up and not being able to get out of bed. Right now, Dad's girlfriend is staying with him. L is truly a gem of a person, but she lives about 2 hours away and can't stay with Dad all the time, she has responsibilities of her own. During the time she is here, Sister and I plan to cobble a plan together, ok, more like plan A, B, C and D, on how to increase supervision for Dad at home, and for when he might need to move into a care facility of some sort. We're seeing more an more changes in Dad's behavior, and we are concerned.

Besides the palliative care offered by hospice, we are very grateful for the insight and experience they offer. I suspect hospice has more direct contact with end stage glioblastoma patients than many doctors. The information the hospice nurse gives us is really helping us understand how Dad's brain is affected by the tumors, and gives us a general idea of what to expect in the future.

Avastin

2011-01-10T07:56:00.000-08:00

Unbelievably, at least to me, we had to wait 3 weeks to see the Oncologist about whether or not Dad was a good candidate for Avastin treatment. Yes, I am still feeling irritated about this. We had just been told that the tumor(s) were growing faster than expected, and that the Avastin might be a way to rein that in a bit. And we couldn't see the doctor for 3 weeks. I was fully ready to start making phone calls and pounding on waiting room doors to find a doctor to talk to sooner, but Dad didn't want me to do that.

So, we did online research, natch. Avastin works by inhibiting blood vessel formation, robbing tumors of the energy supply. Side effects are usually minimal, mostly involving blood leaking through thin tissue like mucus membranes. It can impede wound healing. Treatment must be stopped at least a month before any surgery. Its very expensive, and doesn't work for all types of tumors. But it has been used against Glioblastoma. With good results. What we couldn't find out online was whether Dad could be considered a good candidate for treatment, and would his health insurance pay for it. It is a very expensive treatment. I suggested at least calling the insurance company and asking, but again, that was nixed.

I don't consider myself a "do whatever it takes no matter the cost to save him" person. I understand that recovery isn't likely or expected in this case. But, damn, I want as much information as possible before making a decision. I felt frustrated, not a lot, but accepted these weren't my decisions anyway.

While we were waiting to see the oncologist, my sister and I discussed the future. Dad wants to stay in his own little place to the end, or as close to it as is safe and practical. We agree with him, we want him to be happy, and truthfully, no matter how horrible this might sound, neither of us want to move him into our homes. We did feel that getting hospice involved early was a good course of actions and wondered how to bring it up with Dad, but then he brought it up first. More on that in the next post.

Finally appointment day arrived and 5, yup 5 of us crowded into an exam room. Dad, his girlfriend L, my sister, her very supportive husband, and me. Here is what we learned, in a rather large nutshell; Dad is a candidate for treatment, treatment means coming into the office once every 2 weeks for the rest of one's life and spending about 2 hours hooked up to an I.V. while the drug is administered. Health insurance will pay for the treatment. Effectiveness is tracked by periodic MRI scans and symptom severity. Possible extension of life expectancy, zero to a few months. Dad declined treatment. He didn't say why.

Dad Updates

2010-12-15T17:36:00.000-08:00

Yesterday Dad was scheduled for a Gamma Knife procedure. Dad has trouble holding still, even under sedation, but finally the pre-procedure MRI was finished. Once the Gamma Knife procedure started, Dad still had trouble holding still (he wiggles and fidgets like a 3 year old) and the doctors stopped the treatment because they were worried he might injure himself, and or damage the machine. During that break, the neurosurgeon said that the morning's MRI showed that there was more tumor growth, and there was concern that the procedure would do more harm than good. We decided to stop the procedure. It doesn't sound very good. We're looking into use of a drug called Avastin, it works by interfering with blood vessel growth. Right now we don't know if Dad is a good candidate for this treatment.

Emotionally I'm a bit down, but much better than yesterday, when the news of the tumor growth left me feeling winded. I can accept and face the end result of this cancer, called glioblastoma, but find that acceptance isn't the same as being prepared for some of the day to day realities. Puzzled by some of Dad's behavior, I called the neurosurgeon's office last week to ask some questions. I was told that behavioral, even what seem like personality changes, are typical of glioblastoma patients. Aggressiveness, possessiveness, forgetfulness, lack of focus, I forget all the "ness"es. Typical, and the patient isn't aware that its happening.

maybe 2 is 2many

2008-06-25T07:19:00.000-07:00

Wow, the calendar shows nearly 20 days since I last posted anything to this blog. Maybe I was overly ambitious in starting a second. Kinda like second child, or second pet syndrome. You know, the first one gets all the time and training, all the pictures and parties and such. Well, we'll see if I keep this up.

I have been busy. The boys finished school on the 12th, I did major hardware upgrades to Offspring #1's desktop. New motherboard, CPU, graphics card and ram, oh, and DVDr/w. Over the last 8 or 9 years I've done hardware upgrades to every desktop system in the house, multiple times, and they never work out exactly the same. Plus, whenever I start a new upgrade, the last one was long enough ago that I can't quite remember exactly what I did before. Some of those were very horrid, taking days to get everything working properly. *ind*ws xp doesn't exactly take kindly to major component changes.

The first few times I didn't really understand about xp, and ended up completely reinstalling the os, and then spending, like, 18 hours to go through all the service packs and security updates, and reinstall programs. uhhggg. And of course no install is complete without the requisite phone call to the call center in India to receive another authorization number for the os.

At any rate, the last upgrade went fairly well, the os did balk at bit at starting up but finally decided to play, and now Offspring #1 is able to once again spend hours engaged in yet another massive multi player whatever. Offspring #2 plays as well, but he had me upgrade his system some months ago. BTW, they both are required to pay for their own hardware.

Oh, ya know, part of why I wasn't posting much - we'd been having kick a** heat here, and I just couldn't bear having the 'puter on, generating that much more heat. So I really was trying to minimize use. And I was researching spinning wheels, having suddenly decided I must have one, and learn to spin. And researching how to spin. More about that is on the other blog.

Sumo Time

2008-06-06T22:23:00.000-07:00

Tomorrow, I go watch a Sumo wrestling tournament. A first for me. #2 Offspring is in his 4th year of Japanese language study, and his Sensei scored some tickets for the preliminary rounds. Since the venue is clear up in L.A., (the Sports Arena) I volunteered to drive.

Aren't the Peonies pretty?

Hoping to get caught up soon...

2008-06-04T17:10:00.000-07:00

I've many stories to share from the trip to Knoxville; the dungeon dorm, who needs sleep, ice cream vs sour cream, Tetris blocks, funniest performance ever, the teenager I left behind...

I'll get at least a few of these posted soon, please be patient.

Rant Time!

2008-05-13T17:12:00.000-07:00

Just the other day the local newspaper carried an column about traffic safety and cell phone use. Numerous studies were sited that pretty much indicate that driving while talking on a cell phone incurs about the same distraction level as say, having an animated discussion with someone riding in the car. I wonder who funds these things. Maybe there needs to be a study on near misses while driving and using a cell phone.

So today was just another day when someone talking on a cell phone while driving nearly clocked me. It was like my car was invisible until I honked the horn. He was exiting a driveway and started slowly rolling out onto the street and I thought, "OK, there's plenty of room for him to wait there for an opening in traffic."

Except he didn't wait, he actually started accelerating! Broad daylight, no visual obstructions, didn't stop until I honked and swerved. The look on his face was as if I had just suddenly appeared out of thin air. I'm usually not surprised if someone overlooks me while I'm driving the MINI, it is a smaller car. But I was driving a Mazda 3 sedan this time. And I've had people nearly run me off the road while I'm driving a big white pickup truck. It seems like at least half the time I can see the other driver is holding a cell phone against their ear.

Maybe they would be just as distracted using a hands free cell phone device, I don't know. The MINI is a manual transmission, so if I've got one hand busy holding a cell phone against my ear, that leaves one other hand to handle steering and shifting (and turn indicators, powering windows up/down, activating wipers, adjusting radio, etc.). So I do use a blue tooth device. I like driving with both hands on the wheel, except for during shifts. Having both hands on the wheel gives me an edge when I have to dodge those other drivers.

Fire Pit Done!

2008-05-07T12:24:00.000-07:00

I am astounded at how long it took me to finish this project. Of course, if I knew what I was doing, it would have been a 3 day project instead of what, 3 weeks? I didn't work on it every day (its too hot, too cold, I just can't bear looking at it today), and some days only an hour or 2 but now it is finally done and I'm fairly content with the out come. I do have another rock project in the back of my mind, but there are other things to finish up around here.

Now that the pit is done, I have a few largish (largish - no way in h*** that I can pick this sucker up, but I can probably roll it) rocks to place as accents. Then I can start putting the flagstones (see 'em stacked on the wall in the pic?) back into place around the fire pit. The plan is to space the stones in a pleasing pattern with some wide blank areas in between, then use mortar and decorative rocks to fill in the blank areas.

Gee, there are other benefits besides the self satisfaction in doing these projects. My core muscles are getting a pretty good workout, and I'm hardly going anywhere, so my gas bill is staying low.

Still Hot!

2008-04-29T12:26:00.000-07:00

Today is somewhat cooler, and the normal on-shore flow has returned. Its still plenty warm, but now there is some moisture in the air and I no longer break a sweat just by breathing. Work on the fire pit has resumed, but dammit am I slow at this. It is shaping up, but every time I'm satisfied with one section, I decide to redo another. Perhaps by tomorrow I'll be ready to mix up more mortar, and we can be roasting marshmallows by the weekend, provided its not too windy. I still need to have a spark screen/cover made up to fit over the top.

Power Plant!

2008-04-26T12:01:00.000-07:00

We've a power plant on the roof! I flipped the switches yesterday and those panels are busy doing their thing! The electric meter is running backward for most of the daylight hours. I was surprised by how early the system started making power this morning.

Oh, I am still trying to get my fire pit built. I am appalled at how long I am taking to get this done. I have most of the rocks selected, just a few more and then I'll start with the mortar. I sure hope I like how it turns out. Its not like a knitting project, something that can be unraveled and redone.

Today is unseasonably warm, and I've convinced myself that I shouldn't be out in the mid-day heat. It would be nice to wrap this project up this weekend.

They're Installed!

2008-04-18T17:45:00.000-07:00

All of the installation process finished up yesterday afternoon. I've been shown how to flip all the switches and start taking advantage of our very own roof mounted power plant. But I can't touch those switches yet. The city inspector was here this morning, and signed off his inspection. Now we wait for the power company to send their inspector out. Today is Friday, so hopefully by sometime next week we'll be converting sunshine into electricity!

Bang, bang, whir, zzzzzz....

2008-04-15T11:55:00.000-07:00

That is what it sounds like inside my house right now. The solar panel installers are busily getting the panel mounting hardware installed.

Gettin Solar Powered!

2008-04-14T13:55:00.000-07:00

Today the installers arrived, they're up on the roof making all manner of noise, pounding, tapping, drilling and thumping. In the garage too, where the control panel for the system gets installed. Everything should be finished and working by the end of the week. Pictures soon!

Wow HOT!

2008-04-13T22:17:00.000-07:00

As in the weather. I was so busy complaining in my last post that I didn't take time to mention how stunningly beautiful it is around here right now. Oh, and my goodness, these incredibly huge butterflies were all over the Echium flowers, those things were almost as big as hummingbirds! I wish I'd managed a picture, but my little camera couldn't keep up. So I have just picture of the flowers. Lots of blooming flowers, all kinds of birds all over the place, and weather so warm all the windows are open. I know it won't last, and I wouldn't want it to, but I'm enjoying it right now. Update! The huge butterflies aren't butterflies at all, but White-lined Sphinx moths. Today I don't see any. They could be dead, apparently they die shortly after reproducing.

We've decided to redo a small part of the backyard. The Offspring are reluctant participants, but boy-oh-boy, are they big enough to get some work done now! We had an area partially covered with flagstones, and grassed growing between. At least that was the plan. Mostly the weeds were coming up in between with the grasses sort of here and there. It didn't seem like a very inviting place, so its getting a makeover.

The grasses and weeds were killed and dug up, and then the flagstones removed. The d.g. below is getting re leveled (it wasn't draining well before) and then the stones will be replaced and small river rock set in between. We're adding a fire pit to the area too, and I've just about finished digging out the footing. The Offspring have been collecting rock from around the property, and hopefully tomorrow I can start building the pit.

Oh, and tomorrow the solar panel installation crew comes to start our installation. Bye-bye electric bill!

Yikes, where does the time go?

2008-04-11T14:52:00.000-07:00

Last Sunday afternoon we returned from Sacramento. We decided to try and skip the L.A. area completely, and so went south on the 99 then cut off on the 58. I don't remember ever driving along that stretch of highway before, and so enjoyed seeing some new territory. I really liked the foothills above Bakersfield, and all those enormous wind turbines outside Tehachapi. Eventually the 58 brought us to 395 south and finally the 15. We did indeed skip all that L.A. traffic, and managed to miss any inland empire traffic as well.

I didn't get as much knitting done as I'd hoped, DH had to take a conference call on his cell phone, which lasted over 2.5 hours. So I took over driving duties at Kramer Junction and brought us all the way home. He was still on the call when he got out of the car. During that entire time, no conversation and no radio. sigh.

On Monday afternoon the Younger Offspring decided he was ready to start a major upgrade to his desktop system. Can you guess who most of the work fell too? Plus I was trying to finish up rearranging my bedroom and cleaning the carpet before dinner time. All the components of the system were going into a new case, along with a new motherboard and new graphics card. Oh, and the new power supply that was needed to drive the new components. (insert trip to big box electronics store on Tuesday here)

On connecting all the cables, I realized the mb only supported one IDE cable, and YO's system had 3 IDE drives. We were short one. We decided to get another SATA hdd, and just copy the 2 IDE hdds over to it. Cut to Wed. morning. I get up early to order the new hdd online instead of another trip to big box store. We were planning on heading out to Joshua Tree to meet up with some folks and play around on top ropes. I didn't really want to go (odd), but DH really wanted me to, and I knew I wouldn't have time to work on the system on Thursday, so figured waiting or parts to be shipped wouldn't hurt.

As it turned out, DH had remember wrong about the dates for the J-Tree meet up, so we didn't go at all, so I cancelled the online order (mostly) and YO and I went to the big box store after all. This turned out to be a great move. I was looking for some cables and found an adapter that allows IDE devices to be plugged into SATA. Yippee! No need to buy 500 gig hdd, saved about $80. Too bad it didn't work at first, but we found ways to work around the lack of the DVD-ROM. The adapter only works properly if the IDE device it's connected to is set to master mode. I finally remembered to check that this morning, and now everything is working beautifully.

Last Tuesday was my finally whale watching trip of the season, and both offspring agreed to go with since they're on spring break. We didn't see any whales, sadly, but did get some good looks at one of the submarines leaving the sub base. I'm told it's a Los Angeles class fast attack sub, but I really have no idea.

Monday the solar panel installation is set to start, I wonder how smooth all that will go?

Themes

2008-04-03T21:20:00.000-07:00

Do other people end up with themed days, or even weeks? The theme around the house lately is leaky stuff. The pool pump started leaking in February and needed a new gasket. The water heater started leaking last month and needed replacing. Another piece of pool equipment started leaking and needs replacing. The part is under warranty, but the labor to dig it out and replace it isn't. The irrigation line sub meter installation started leaking - the plumber came back and fixed it. And now that its not raining anymore, all the irrigation lines need checking for leaks or just function. Thankfully, none of the cars seem to be leaking anything, but when the repair guy came to fix the garage door, his truck leaked transmission fluid all over the driveway, puddles in some spots. Sometimes one of my dogs leaks too, that's sort of off and on. sigh...

Where does all the time go?

2008-03-31T16:24:00.000-07:00

I can't believe I've started a second blog. Obviously still living in an imaginary world, where I have all the time I need to do everything I want to do, in addition to all those things that just plain need doing. Some irrational part of me believes that I can force myself into greater efficiency if I've less free time. I did finally get my car washed last week, and the irrigation system mostly up to snuff, except for the part on drip lines.

I thought I'd be saving money and work time by installing drip to replace some of the overhead watering on one of the slopes, but that hasn't been the case. The drip hoses don't stay in place well on the slope, but I very much doubt that has anything to do with the dogs running through and over everything. Or the gophers burying the emitters. Or Shae chewing through the lines while trying to dig the gophers out. At any rate, the lovely and well spaced winter rains seem to be over, so the irrigation system needs to function. I thought I'd get it done today, but decided to go photograph the wildflowers on the hill instead. Soon most of the bloom will be over, and I know I'd regret not getting out to see what is blooming.

The area north of the house burned maybe 4 or 5 years before the house was built, and while there is plenty of scrub, it looks like toyon and some other shrubs are just finally getting some size, over 10 years later. There's another shrub I don't recognize, I've got to look it up. OK, Coffeeberry or Rhamnus californica. Anyway, it was a lovely walk. Shae and I startled a deer, she looked very well fed. I didn't get any pictures of the doe, but will post some of the wildflower ones. Some of the flowers are so small, tiny little purple blossoms, multitudes of different little yellow ones, I wonder if I'll ever learn all their names?