Thursday, March 24, 2011
and gone
Wednesday, March 23, 2011
Nearer
Wednesday, March 16, 2011
Time passes
Friday, March 4, 2011
Many changes
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.
Sunday, February 6, 2011
The hardest parts
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.
Monday, January 10, 2011
Hospice
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
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.
Wednesday, December 15, 2010
Dad Updates
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.
Wednesday, June 25, 2008
maybe 2 is 2many
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.
Friday, June 6, 2008
Sumo Time
Aren't the Peonies pretty?
Wednesday, June 4, 2008
Hoping to get caught up soon...
I'll get at least a few of these posted soon, please be patient.
Tuesday, May 13, 2008
Rant Time!
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.
Wednesday, May 7, 2008
Fire Pit Done!

Tuesday, April 29, 2008
Still Hot!
Saturday, April 26, 2008
Power Plant!
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.
Friday, April 18, 2008
They're Installed!
Tuesday, April 15, 2008
Bang, bang, whir, zzzzzz....
Monday, April 14, 2008
Gettin Solar Powered!
Sunday, April 13, 2008
Wow HOT!

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!
Friday, April 11, 2008
Yikes, where does the time go?
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.