Blood clot in the leg

If my experience with psychosis wasn’t enough, today I also got some bad news about my grandparents. They returned last night from a Caribbean cruise.

My grandmother informed me that Gramps had some sort of heart issue on the plane trip returning to Seattle. The flight crew gave him oxygen, which s

Well, as I typed out this entry I got a phone call from my grandmother to tell me the paramedics were at their condo and Gramps was going to the E.R. He complained of shortness of breath. I called my brother immediately because last time he got mad I didn’t call right away. Then both of us headed to Providence hospital which is where he was to be taken.

All of us waited at the hospital for hours. Though quiet when I arrived, shortly after A.M.R. brought Gramps in, the E.R. got slammed with only one doctor on duty. Somewhere around 5 a.m. though they determined that Gramps had a blood clot in his leg. They though a small piece of it might have traveled to his lungs, causing shortness of breath both on the flight from Cabo to Seattle as well as Sunday night.

Due to his advanced age and multiple heart medications, they decided to admit my grandfather. He’s been at Providence since. It’s possible he will go home tomorrow. However, he will be using a walker from now on.

I’m glad he’s recovering. The event is accelerating some of my plans and changing others, but I’ll detail that later. I’ll be spending more time helping them though, and it’s caused me to be even more blunt with them about some changes they need to make.

Psychotic Breakdown

For privacy reasons, I am leaving out names from this story. Just don’t ask.

Last night while I was at Quinn’s Pub with friends, I got several phone calls from a woman with whom I’ve gone on a couple of dates over the last few weeks. Since Quinn’s was rather loud and I didn’t want to rudely interrupt the dinner party, I let the calls go to voice mail. When I left the restaurant, I checked them. The first came from B asking if I planned to go out dancing at Noc Noc later, as she was considering heading going to Club V. She called a second time about 30 minutes later saying she thought Club V was too expensive and she might go to the Noc Noc instead.

I thought the calls a bit odd, since in my conversation with her the previous night I’d been pretty clear I planned to attend the second night of Fever (a new disco night) at the Noc Noc. Nevertheless, I called her back and offered to drive to her place to give her a ride to Noc Noc if she wished. She said that would be fine, and that a friend of hers would be meeting her at the park and ride near her place to go as well. I said I would be happy to drive her as well so they wouldn’t have to take the bus.

I arrived about 5 minutes later than I expected due to writing up the Quinn’s review, playing with the site’s infrastructure, and not watching the time. Now the first really strange thing of the night happened. I pulled into B’s parking lot and called her to say I’d arrived. She didn’t answer, so I left a short message saying I’d arrived. I would have walked up to her place and knocked, but I didn’t know the unit in which she lived. In retrospect, that now appears deliberate. Five minutes later I called again, as she hadn’t walked out. This time she answered and said she’d be out shortly, and apologized for being weird. Ten minutes later, still no B. I called again, and again she said she’d be out, again apologizing for how weird everything was. I don’t recall the exact conversation. I thought it odd, but still I hadn’t clued in. Ten minutes after that she finally came out. I was actually a bit annoyed at having waited for 25 minutes, though I held my tongue because I’d arrived late and girls sometimes just take a while.

I drove across the street to pick up J at the park and ride, after which the three of us headed toward the freeway and downtown. I had a Pigeon John C.D. playing, and told them to pick something else if they’d like something else. B immediately and curtly stated Can we just not have music? so I quickly hit the power button. Her manner seemed really odd, but getting my knickers in a twist seemed overkill. Heading downtown on the freeway, B started talking about how she had a bad feeling about the night. Then my grandfather called my cell phone. As he’s been in ill health lately, I reached for the phone to take the call. B screeched Don’t answer that! I said that I had to, it was my grandparents. Everything was fine with them and I got off the phone in under 30 seconds. Then B reported that she’d forgot something at home (never specified) and could we go back and get it.

So I got off I-5, crossed the overpass, and drove back the way we came. When we got to B’s parking lot, things got really strange. She started talking about how she couldn’t go back in. She was afraid to go back in. Both J and I offered to walk up with her to make sure there wasn’t someone lurking in the apartment, or a fire had been started or anything. But she just couldn’t bring herself to go back in. By this point I knew something was really wrong, but I didn’t know what. I have friends who really believe in spirits and premonitions and supernatural crap. I don’t. I think it’s 99% hooey, but I’m also not about to get in someone’s face about it either. An illogical premonition that was so bad we couldn’t do anything was just the start.

B got back in the car, but stated she didn’t think we should go dancing now. I’m sorry, but I just can’t. Can we go get some food or something? I had no desire to eat, but I figured if it would calm her down that would not be a bad thing. So I started the car out of the parking lot.

And that’s when I recall things really went strange. Perhaps B had said something earlier, but I don’t recall it. She started talking about numbers. I was a 4 or a 7, and B was a 7 or a 13 and she was just sure that the combination of the three of us was just bad. I know nothing of numerology though. J and I started humoring B to calm her down. B took a phone call from someone, and then hung up.

We started driving around. No particular direction and B quickly lost all memory of restaurant plans. For a while one direction would be fine, but then B would be sure we had to go a different direction. Then something spooked her and we’d turn around. Still only about 30 minutes from when we first left her apartment parking lot, I was thinking anxiety attack. My plan was calm B down, get her home and asleep. But then she started talking about seeing patterns and signs and portents and didn’t want to look at any signs as we were driving. She started asking if we were seeing them. And wondering why only she could see them when we told her we did not. I started thinking schizophrenia. My plan became to get her calm enough to get her to a hospital.

We drove through numerous north Seattle neighborhoods, some more than once: Greenwood, Green Lake, Maple Leaf, Roosevelt, U-District, Ravenna, Wedgewood, Lake City, and Northgate. B almost threw herself on the car floor when she asked me to turn around and then realized we were on a bad street (coincidentally the street where my great-aunt lives). I had been hoping to get closer to the hospital district, but B wouldn’t cross the University Bridge when we were in that area. Once she felt we needed to stop immediately, so I pulled over. Then someone came walking by and B curled up shrieking that we couldn’t talk to him and that she couldn’t see him. So I quickly pulled out. There were instances too numerous to mention when she behaved like this. All the while she was trying to determine our numbers, declaring she had to make a choice, but didn’t know what the choice was, and later that it was a choice between light and dark.

At one point we came within a dozen blocks of her apartment, and I asked if B wanted to go home. She thought so, but a block later changed her mind. Then and there I decided to head to Pill Hill no matter her reaction. I told her I thought we needed to get her to a hospital, because they would know better than we would what was going on. She thought that was a good idea (though she was absolutely sure she didn’t want the U.W. hospital), but as we crossed the Ship Canal she changed her mind. She didn’t argue when I said I still thought it was a good idea. She did say she’d made the wrong choice though.

As we got to Pill Hill, I asked B if she’d prefer Swedish, Harborview, or Virginia Mason. She was absolutely sure not Virginia Mason, but when we pulled up to Swedish she wouldn’t get out of the car. Then she decided Virginia Mason would be better so I drove over there. J and I walked B inside.

The intake person wanted to know what she needed to see a doctor for. I wanted to say we had a girl who was going psychotic on us, but I figured that might not be the best way to put it with B listening. So we said she was freaking out and seemingly having an anxiety attack. After the intake person, we saw a triage nurse. She quickly homed in on psychotic issues. Most of the folks there knew what they were doing, though I think the intake person had been slapped with a stupid stick in the past. Triage nurse called it paranoid ideations which didn’t seem to set off B. Then an orderly took us to an emergency room.

B was much calmer by now, but still not exactl cooperative. She didn’t want to let them draw blood. She wouldn’t sign the intake form. In the middle of questioning by the doctor, she would dial someone on the phone and start talking to them. I was just thinking of you. She talked to one friend who came down to the hospital. Turned out to be just in time, as B was at that moment walking out of the hospital against recommendation. Her friend talked her into going back in. At that point, J and I sat in the lobby as her friend knew hew much better and could pass on thing like relevant family medical history, including mental illness. I talked to another friend of B’s who came down as well. When she got there, we left after saying good bye to B. I didn’t want to gang up on her and I was exhausted and frazzled.

I have now been witness to a psychotic breakdown, whether actual schizophrenia or a severe anxiety attack or a brain tumor. I don’t know the cause. It’s not something they taught me how to handle in high school, so I felt particularly out of my depth for the longest time. If it ever happens again, I’m pretty sure I’m going to head straight for a hospital rather than humor the person and try to calm them down. Because there just seemed no way to calm B down.

ALSA Evergreen Chapter

Mom asked that if folks want to donate money the appropriate donee would be the ALSA Evergreen Chapter:

http://webwa.alsa.org/site/PageServer?pagename=WA_homepage

There’s a donation page there.

Also the Walk to Defeat ALS is over, but they’ll still accept donations that way. Mom’s collected 10,853 so far. If you donate you could put her over 11,000.

http://web.alsa.org/goto/philw

What now?

I am okay. I am relieved. Since January, mom basically wanted just a few things and she got to do them. She saw my grandmother’s 80th birthday party. She got to see her second grandson. She out-raised by far everyone else in the Bellingham Walk to Defeat ALS. SHe is no longer in pain, though her pain was never severe like a cancer patient’s can be.

I miss her, and will miss her. And I will have emotional breakdowns on occasion. I know this from previous experience. I am far more content than when Matt died though.

A vigil will be held Sunday night at St. Joseph’s Church in Lynden. The funeral will be Monday at 11 am, followed by a burial a half mile away from mom’s house, and then a reception back at the church. My friends are welcome to come even if you didn’t know mom, though by no means will I be disappointed if no one does. I don’t need support there, but I will need to decompress afterward. I am extremely uncomfortable with people expressing condolences to me, which will happen in spades at the services.

I’ll write this now. Feel free to give me a hug. I know some folks are concerned about me. I need the hugs. I need people. However, I am not ready to talk about mom’s death. Period. Or really about my mom or her illness at all at the moment. If I want to talk about it, I’ll bring it up. If you see me crying in a corner (or not in a corner), give me a hug, sit with me, hold my hand, provide hookers and blow, but please please please don’t ask me to tell you what’s wrong.

I am the executor for mom’s will. For the most part that will be pretty simple. It goes to dad. But I need to close up some accounts, deal with some investments, and help distribute personal items that my mom wanted people to get. I will also have to do some things to help dad get set up independently. Things like signing him up for Medicare, maybe teaching him some basic cooking, etc. None of this will I start really until next week though.

I will move back to Seattle full time some time in November. I expect to be there every weekend from now on. I’m not sure what I will do once I have moved back. Things I have considered: working at Barnes and Noble or another bookstore, restarting my plans to open a bookstore, buying an unlimited Greyhound travel ticket and hosteling around the U.S., going back to work in software, taking an ALS patient advocate position, running for city council.

Jason came back up here today and has been shepherding me. I don’t have any required things to do until Sunday.

I plan to be in Seattle Saturday night. I will be out dancing at the Noc Noc. I need some normalcy. I need loud stompy music to calm my mind.

What happened

Mom agreed last week to start taking morphine if the doctor and hospice could put together a drug cocktail that would limit the side effect of stomach cramps and itching. With the use of diphenhydramine hydrochloride, that shouldn’t be a problem. The hospice nurse was supposed to bring the drugs and instructions for administering them. I was there to transcribe the instructions or at least be another person besides mom who understood the instructions. Dad doesn’t get complicated instructions. Mom can’t retell them very well, even though she understands them. Hospice nurse didn’t show. Turns out Tuesday was her day off and she had rescheduled mom’s visit for Wednesday but didn’t tell mom. I left around 12:30 after waiting a few hours and calling a few times before finding all this out. Anyway, this is important (in my head at least) because mom wasn’t on morphine and my understanding of later events was colored for a time not knowing if it was mom’s condition, or her taking of morphine that was causing her to be non-responsive.

At 9 o’clock the evening caregiver called. After she fed mom, mom had regurgitated most of her food. This is something that had been happening for a couple of weeks, but on a smaller scale. All mom had told me though was the new food formula didn’t agree with her. I suspect it was more her body just rejecting food at all. I’m not a doctor though, so that’s a judgment call I’m not qualified to make. Tuesday night though, a fair amount went up far enough and back down into her lungs. They had suctioned what they could from her throat, but mom was having trouble breathing and was in distress. The caregiver told me it was the end. I discounted that pronouncement though because she’s seemed a little too ready in the past for things to be the end, when they weren’t. But it still was serious and I grabbed a book and some stuff to stay the night, and headed over.

When I arrived mom was sitting on her chair leaning forward, with a distinctive gurgling sound emanating from her throat as she breathed. She sounds like that when she needed to be suctioned of saliva, but this time they couldn’t reach it. Dad was on his knees in front of her hold her head up. She felt like she couldn’t breathe if she leaned back in her normal position.

They’d called hospice, and the on-call nurse was on her way. Though they were in the middle of another emergency so she wasn’t there yet. She came and helped us dose morphine. It would help mom breathe and make her comfortable enough to sit in her normal position. She told me that it was possible the aspirated fluids would cause pneumonia, which would pretty much be fatal to mom. So I was prepared for this to be the start of the end. That wouldn’t happen overnight though. I expected the night to be rough, and mom’s breathing to really start to decline over the next few days.

After a second dose of morphine at midnight, mom finally was able to go to sleep with the BiPap machine on. The caregiver took up a seat around the corner in the TV room (she can hear mom from there and can watch her from behind). Dad crashed out on the couch across the room, though he only lightly dozed. I went in to the guest bedroom, where I read Brokeback Mountain and then turned out the lights. I got about 2 hours of sleep.

At 3 am the caregiver woke me. Again it was the end, according to her. She wanted me to call Joe. She and dad had taken off mom’s bipap because she was essentially choking on the air. It should self-adjust to her breathing, but it could no longer do so. Her inhale would stop as soon the air started going in. Mom was mostly coherent. She was having a fit like normal when she was extremely uncomfortable but couldn’t explain why or how to fix things. She wouldn’t really communicate anything except that whatever it was we were doing wasn’t working. She spelled out “UP” to me with her foot. She wanted to go back to the forward position she’d been in when I arrived at 9. Dad can’t make out what she’s saying when she spells with her feet, and lots of times I can’t either. But I got that, and she relaxed when I said it. We got her leaned forward. However, she didn’t respond to anything else we asked. She could hear, but didn’t do anything more than move her feet in response, and not in a coherent way. In other words, she moved to indicate distress but not communication. She was so anxious that responding with “right foot yes, left foot no” wasn’t working. I then went in to the hall and called Joe. I told him Mom was not responsive and he should come up.

I called Elaine to tell her mom’s condition and to give her a chance to say goodbye over the phone in case it was the end. But she didn’t answer. I called Dan, and after the grogginess left him held the phone to mom’s ear. She wasn’t moving except occasionally in distress at that point. Then Joe arrived. He called Elaine but no answer, and then Elaine’s husband with no answer. They called back shortly thereafter though. Phones had been recharging in another room. Held the phone up to mom’s ear and they both said good bye. We told Elaine we thought mom could hear but weren’t sure. He asked mom to wiggle her toe if she could hear, and she did, which was the first time since 3 that she had done anything responsive. So we held the phone up so Elaine could talk some more since we knew mom could hear.

At this point I still wasn’t certain if it was the end, or if her being non-responsive was a result of the morphine. Morphine can make you sedated when you first take it, and that could easily be the reason why she wasn’t responsive. At 6 I called hospice because I wanted guidance. I knew there wasn’t really anything they could do to fix mom, though. The regularly scheduled visit was supposed to be Wednesday, and I asked her to get them to move it to first thing. They said they would. They would likely put mom on a morphine pump. At this point, I expected that mom had very little time left, but I wanted an idea of how much and an idea of whether she would be lucid at all again. That was essentially what I wanted when the nurse came.

After talking with hospice, we leaned mom back somewhat, but not as far back as she normally sat with the bipap. THe closer to supine she was, the harder it would be for her to breathe. Her diaphragm works against gravity in that position rather than orthogonally. So we didn’t go as far back because I didn’t want to hurry her death. But we couldn’t hold her head up anymore as we were getting very tired. So we went back just enough that her head leaned back against the back of the chair, and then used a piece of cloth to hold it in place.

The morning caregiver called at 5:45. I suspect she wasn’t going to come in, but Dad said mom was dying and so both her and her mom came (her mom is another one of our caregivers). We alternated holding mom’s hand and waited. This period feels busy, but I can’t recall what happened, if we had anyone come by or talk on the phone. The fourth caregiver also came in. I’m glad she did, and she was there almost until the end. She’s passed all her tests to become an LPN, but just hasn’t received the certificate yet. She’s the most medically qualified of the people we hired. Rock steady as a caregiver as well. Oh, the next door neighbor came by and held mom’s hand for an hour or so. She and mom were good friends. She then went to work, but they told her to go home at noon because she was so distracted. We sent the overnight caregiver home. Told her that she needed some rest if she was going to come back that night. She made me promise to call her after hospice arrived and told us anything.

At 8:45 the hospice nurse called. She had ordered the morphine pump and was waiting at the pharmacy for it. She expected that to take a half hour, and another half hour after that to get to our house. She arrived just before ten. She installed the pump and explained everything to us. She took mom’s pulse, temperature, measured her breathing. She told us that typically people in mom’s condition live another 12 to 24 hours. Not a few days as I thought might be the case with pneumonia. She might have some lucid moments but that was not guaranteed. Likely she’d aspirated so much fluid that the remaining space in her lungs couldn’t absorb enough oxygen, particular since her muscles couldn’t move her lungs very well either. Her heart rate would accelerate as her breathing weakened trying to make up for less oxygen in the blood. And then it would lessen as lack of oxygen affected the heart itself. Her extremities would turn blue and the color change would travel from the ends toward her torso.

Before she arrived and told us that, I called Jason. THe plan had been originally for him to come up and we would work on his resume. THen my grandparents wanted to visit and so Jason would drive them up (mom gets upset when they drive) and they’d visit mom while Jason and I worked on his resume. I told him mom took a turn for the worse, though we didn’t know much at that point. But things obviously had changed from Monday’s plans. I wanted to make sure he was okay with the changed conditions. I told him mom was unconscious and had been nonresponsive since 4:30 or so. My grandparents might be upset. So I wasn’t sure if he wanted to drive people he barely knew into that situation. He was willing.

We called both Elaine and Dan to tell them. I left mom’s around 11, headed home for a quick shower and supplies. I expected to hold vigil at mom’s overnight. I called my grandparents on the drive back and explained mom’s changed condition. They took the news pretty well, though I didn’t give them the time prognosis. And I also called the overnight caregiver. I got back to mom’s around 12:30.

The hospice nurse had left by then. The hospice social worker had also arrived and left. The caregivers had moved mom from her chair to her bed. I can’t remember the reason.

We were still alternating people holding mom’s hand. Her breathing was very irregular at that point, and her legs were blue up her calves. Someone from the church came and prayed with mom. The rest of the family were talking, holding conversations, keeping the room as pleasant as possible. Jason arrived with my grandparents. Mom’s breathing stopped, and Joe held her hand as her heart stopped. It was 1:50.

Last days

I will be mostly offline for the next few days.

I don’t really know what to write here. Mom does not have long to live and I’ve probably heard my last communication from her. She took a turn for the worst last night.

Please go hug someone you love. Just in case.

Instead of LJ condolences or *hugs* or whatever, please tell me a happy story. Something real and happy from your life.

My day as a caregiver

No caregiver this morning. The daytime person has been sick this week. Dad and Elaine covered on Monday. Had a substitute caregiver Tuesday. She also worked yesterday morning. And this afternoon. But she couldn’t work this morning. So I went over around 7:30 to back up dad. He went to the ALS support group at 11:30 after which he planned to see Elaine at the maternity ward, so I was alone with mom from then until 2:30 when the caregiver arrived.

Being a caregiver freaks me out. Particularly because mom loses it sometimes when things don’t go right. And since I don’t have any practice things have a good chance of not going right. On the other hand, I’m not too bad at it. I’m very attentive, and I talk her through everything. Additionally, I DO NOT want to be taking my mom to the bathroom or dressing her. a) it’s seeing my mom at her most vulnerable. b) bodily fluids. Also, not so much with the bathroom thing, but I hate suctioning her. I hate jamming a tube down her throat so far she should gag. The fact that she hasn’t had a glass of water or a really thorough mouth cleaning in a few months means her mouth smells and it makes me want to gag. She’s had her teeth and throat and tongue swabbed, but her jaw can’t be pried open to really go in there.

Mom mostly slept in the morning, so I actually finished a book. I set her up with the tablet PC in her chair with the trackball (she uses her feet) and she played games most of the time I was with her. I got a fair amount read then too, but I had to pay attention since we don’t have voice software on the tablet. Her signal for me was to take her foot off the trackball and lay her leg down. That worked pretty well.

Uncle again

Elaine’s water broke at 11 pm last night. Brian, her husband, took her to the hospital, where my nephew was born at 4:52. They called home as soon as possible. Mom is thrilled. Baby will likely be named Nicholas Taylor. They haven’t decided on spelling so the BC hasn’t been filled out/done/made official yet.