Wednesday, December 24, 2008
Sorry I haven't been around lately. I just completed the first semester of my master's program. Yeehaw!
I hosted a screening of the Lyme documentary Under Our Skin at our local library. It was very good.
In other news, I am almost at the end of this treatment. Yay.
Hopefully, the new year will not bring anything dramatic and I'll be able to get back to my regularly scheduled blogging.
Happy Holidays everyone.
Monday, September 8, 2008
The fairy tale phrase "a year and a day" comes from the Celt's habit of measuring the calender by the moon and then squaring it with the solar calender. 13 moon cycles *28 days long=364 days+ one day for the Sun God=365 Every four years throw in an extra day to account for the extra 1/4 day. Damn fine astronomers.
But since last year was leap year by our common calender, it really is a year and a day.
Whatever way you count it, I miss her.
Thursday, August 7, 2008
Thursday, July 31, 2008
The answering service told me they'd send Jerry over. I sat with J for a few minutes. I looked at my father. There was nothing very terrible about his body. We didn't move the bed from the 45 degree angle I had set it at the evening before, when he'd started having trouble breathing. He had been uncomfortable flat on his back, probably from the fluid I had heard moving around in his chest.
Jerry called and said he'd be there in 20 minutes. I got dressed. I wanted to be doing something, so I occupied myself putzing around the kitchen, looking for different phone numbers I would need. I called my brother N who was already on his way to Nashville. J called my brother M, the one who'd left the day before. We asked my brothers if they wanted to see my father, but both of them said they didn't feel they needed to.
After a few minutes I sat down with J. She was still on the couch. She turned to me and said "I'm so sorry." I wasn't sure what to say to that. I looked at my father again...he was gradually transforming from a person to a thing.
Here then, was I, standing at the precipice of the uncanny valley. Dolls that resemble humans too closely become corpses because they seem to be people but are actually things. Corpses are dreadful because they were people, but are things.
I have seen the same thing in reverse at births. The baby makes its entry slowly or quickly. With relative ease or difficulty. Then the baby breathes. Many traditions hold that the soul enters the body with that breath. I always cry at a birth, I can't help it. I used to be embarrassed by this when I worked as a doula, but after a while I found that almost everyone understood. Sometimes I cry just telling the birth stories.
I did not cry at my father's death.
Jerry arrived at the apartment. He sat down next to my father and lowered the head. This startled me, somehow. Making my father look even more dead. "I'm just going to listen to your chest." Jerry said to the body that had been my father. I'm not sure if that was for our (mine & J's) benefit, or just his manner of being with the patient. A long moment passed. Jerry looked at J who still sat on the couch. "Yes, he's gone."
J nodded, seeming to suck up her tears. Perhaps she felt she should be stoic. Jerry looked at me "He seems pretty peaceful.".
"What happens now? Should I call the funeral home?" I asked. Jerry said he'd call the funeral home if we were ready to let them move my dad. I was waaaay ready.
I helped Jerry with some housekeeping chores while we waited for the transport guys. Getting rid of the now-useless medication etc. Jerry said he'd wait around until they'd come in case they needed help.
After about half an hour, two gentlemen in dress shirts and ties appeared at the door. They'd arrived in a white delivery type van and set the cot just inside the door of the building. I was grateful for this. The last thing I wanted to do was discuss my father's death with neighbors.
My father's apartment had a long stairway with a turn at the end. The cot wouldn't fit up those stairs. The two transportation gentlemen stood around for a minute discussing whether to go back to the office for a device better suited to tight spaces. "Couldn't we just wrap him up in a sheet?" I asked "There's four of us and he doesn't weigh more than 150lbs."
The two men looked at each other and shrugged. "Thats fine" said one, he want downstairs to get another sheet. I grabbed a pair of gloves and started wrapping up my dad in his bedclothes "We really don't want these back."
I wrapped the sheets around him all the way up to his neck and one of the men actually covered my fathers now yellowing face. Another moment of weird startlement. Of course, you cover the dead's face.
We all took a fistful of sheet and lifted on 3. He was heavier than I expected. Dead weight.
"He needs to go out the door feet first" said one of the gentlemen. We sort of manhandled him around. We got to the stairs and had to put him down. We picked him up again, but it became very difficult on the narrow stairs. Finally, the larger of the two gentlemen picked him up like a child and carried him, cradled in arms, down.
I helped the gentlemen lay him on the cot and arrange the wrappings again. I belted him onto the cot and zipped up the body bag. The two gentlemen quietly wheeled the cot (feet first) out the door.
Tuesday, July 29, 2008
This is the first major life crisis I've dealt with without my mother and I miss her.
To give details. I was on vacation, visiting friends in MI with my family when my brother called from Nashville on Thurs July 17 that my father had been hospitalized. I had access to my fathers medical records and the reports I had been seeing did not look good, but he was in the hospital and everyone felt he would be okay. On Friday, his doctor inserted a stent into his ureter becasue the growths were now impinging on the structures. His kidney had shut down but there was a slim chance this could make it start up again. I spoke to my brother on Sat. My brother stated to me that it appeared to have worked and they planned to discharge my father on Sunday. In the meantime, I had also spoken to my stepmother, J, who told me they were signing my father up with hospice.
To back up here a moment, my father had had a conversation with his doctor the previous week where his doctor had told him that there really wasn't any more chemo to be done. However, my father seemed very optimistic, even planning for a visit to MI while I and the family were there. I was not so optimistic, even packing clothes in case a funeral was held. But even when he was in the hospital Sat he was talking about coming up for the following Friday.
So when I spoke to my brother on Sat I was not surpried to hear my brother ask me to come down for Monday because J. seemed so overwhelmed.
I made flight reservations for Monday morning and arrived in Nashville by myself at 8:30 in the morning.
When I got there, my brother was upbeat. He said that he felt our father was being just a bit whiny and it was my job to convince him he'd be okay.
I was therefore, a little unprepared for how my father looked when I saw him. He looked colorless. Grey hair, skin and eyes. Except where there was livid bruising on his arms. His feet were huge with retained fluid but his hands and arms were like sticks.
He was very glad to see me although he seemed to be in a lot of pain. He said his pain levels were about a 10 on a 1-10 scale. He was sleeping on his couch, which tho' comfortable, made it difficult to keep his feet elevated and hard to help him up if he needed to use the bathroom. Apparently my father had refused the offer of a hospital bed, wheelchair or commode chair--all of which would make his (and his caregiver's) life easier. I told him, he needed at least a hospital bed. We could put right in front of the TV where he wouldn't feel banished to the back bedroom,
Fortunately, the hospice nurse made his appearance right on time at 9:30. Jerry the hospice nurse was really great. My father was a little combative, one point demanding an IV for his dehydration (come to find out, my father hadn't actually drunk anything since the day before). Jerry patiently explained that they didn't typically do IV's in hospice, but they had other ways of dealing with the nausea so he could take fluid orally.
My father was intially rather angry at this, complaining that hospice was not delivering what they promised, but Jerry was the right mix of cajoling and stern. Soon he'd gotten him fixed up with some nausea meds and my father was feeling tolerable. Jerry then gave him some pain medication and that helped even more. Then he took my brother and I aside and explained to us that "I think this is all going to happen rather fast". I asked him "Weeks, days or hours? Because thats going to determine how long I stay."
Jerry said "Well, unless something turns this around, we can't talk weeks." It seemed to me that my brother was shocked just a bit. I think he was imagining another 6 months. He had to return to MI that day however. He stayed long enough to help us move furniture around for the hospital bed the pharmacy was bringing over. Gave my father a hug and was on his way.
I called my other brother and explained to him what Jerry had said. He said that he'd plan to come down the end of the week, but he'd tell his boss he might have to have the next day (Tues) off.
When I sat with my dad, he seemed just a little more confused. He asked for help to and from the bathroom and then another pain pill which he swallowed with the tiniest sip of water. We sat there together for a bit, my father seeming to fall into a restless sleep.
The pharmacy came by with the bed and set it up. We put sheet and stuff on it then moved my father to it. He complained that it was not as comfortable as the couch and asked us to "Just leave me alone for a minute"
I looked at his medication log and found that my stepmother had written down the short acting painkiller at 6:30 AM. He had received several of those since, but J had told me he'd gotten the long acting one at 6:30! It was now 2:30! I asked her about it and she said she'd written the one she'd given him down, copying it from the label, Aha. This would explain the pain then. I went ahead and gave him the long acting one...After about 20 minutes, he said "Wow, you could get hooked on those"
J went back to work in the office for awhile and I sat with my father. I think that J somehow thought she would have been able to leave him alone. There was no way. He really didn't have the strength to get out of bed himself. I sat and knitted and watched a little TV. My father talked to people I couldn't see. Quite animatedly actually. Sometimes he seemd to be having a really good time. Other times he argued. He picked at his bed covers. About 4:30 in the afternoon, his breathing became very irregular. I called my brother and told him he needed to come down ASAP. He said he'd start driving in the morning.
I sat down beside my dad to get his attention. "Dad?" He looked at me instead of letting his eyes wander all over the room "I'm going to stay as long as you need me. And N's on his way here." He gave me the happiest smile I've ever seen and said "Yeah? That's great"
For awhile, I gave myself over to the guilty pleasure of watching "Bridezilla"
J came back and we discussed sleeping arrangements for the week. That night J decided to sleep on the vacated couch and I would sleep in the guest room. I went out for an hour, came back. My father seemed to drift further away. I went to bed.
I woke up about 6:30 on Tues. Checked on my dad. He was still breathing. I tried to go back to bed. Couldn't. Made coffee. J woke up. We talked in the kitchen for a couple minutes about his will, which she'd just found. We went and sat again with my dad, talking mostly to each other but trying to include him. She said they'd both woken up in the night and he's recognized her and talked to her.
I watched my father's breathing, counting between the chest rising, a couple of times counting up to thirty. Then his chest just stopped rising. I waited. J continued to talk. After a long time I whispered "J, I think he's gone." She jumped up and called his name, hugging him. I took a pulse in his wrist. His arm was cold. I looked for the pulse in his throat. Finally I leant down and listened at his chest. He was really gone
Wednesday, July 23, 2008
Those who know me, know that I never had a good relationship with him. So it is deeply ironic that I attended his death. I will write more later when my brain cames back.
Wednesday, July 9, 2008
I'm not sure what my life holds after Lyme. I've seen real improvement during my drug holidays, so I can at least expect an improved quality of life. I still have another 12-18 months on this treatment, so we shall see. I still want to do the Long Trail. And I will still have children at home for 8 more years.