I haven’t heard my mom’s voice since just after Christmas 2006. She slurred her words starting in January and used a Dynavox starting in July. Those sounds have replaced my memories of her voice. I couldn’t remember it.
Called Dad’s cell today and got his voicemail for the first time ever.
It’s mom on the message.
I’ve got her voice back.
But I can’t hold myself together.
I barely remember mom’s voice. The last time she tried to talk to me was over the phone after a family vacation to Ocean Shores. I left a day early because Erin needed to get back to work. On the way home, mom called to ask me something. I couldn’t understand a word she said.
Dad fared better than I did. He was able to interpret mom’s grunts four or five months longer than I could.
At the first A.L.S.A. support group meeting mom went to, someone there loaned her a Dynavox. Basically a talking computer. It has a touch screen that lets you pick letters or words. It has a computer generated voice that speaks what you’ve typed. It’s portable, at least compared to a laptop. Thing weighed more than my laptop though. But it’s design makes it more usable for carrying and speaking than a laptop. Under the hood it ran Windows CE, so it had typical Windows stability issues. The new versions run Windows XP.
Mom had a love/hate relationship with her Dynavox. I asked her to practice with it before she needed to use it. I figured it would be easier to solve any problems with it when she could still talk. But she didn’t. It was too slow. And it was too much like giving up. So she only started using it after her speech was nearly gone.
A Dynavox is a pretty versatile machine, but it’s not designed specifically for A.L.S. patients. It’s primary users are seriously mobility impaired, paralyzed, or with severe loss of fine motor control. Eventually mom got to that point, but not until the last few months she was alive. A.L.S. patients tend to lose their speech either near the beginning of their illness (in the case of bulbar onset A.L.S.) or near the end (in limb onset A.L.S.). There are exceptions, but these are the general cases.
For those with bulbar onset A.L.S., using the touch screen is pretty slow. You can use a U.S.B. keyboard with a Dynavox. Mom could still type 60+ words a minute. So she didn’t slow down that much actually at first. The problem was that you couldn’t map any key on the keyboard to be speak
or clear
. So she’d have to reach over to the touch screen to make it say what she’d typed. And then she’d have to reach over again to clear it so she could type her next sentences.
Even so, she talked
slower than she used to, but was still just as wordy as ever. For instance, Mom would still preface her statements with To answer your question …
followed by the answer, rather than just answering. I constantly battled with having the patience to wait for her to get through her wordiness with a slower mode of communication. Not everyone had the patience. Having visitors over would be difficult because while they waited for mom to type something, they would continue the conversation with other people in the room. By the time mom pressed Speak
, the conversation would have moved on.
As mom lost the use of her hands, it became more difficult for her to type. Again the A.L.S.A. helped out, this time with buttons and switches and a giant trackball. Instead of typing, she would use the trackball to click on stuff on screen. It was slow, but the Dynavox has built in word prediction, something like what cell phones do.
The A.L.S.A. actually helped out with two Dynavox machines. While they are pretty sturdy, they don’t stand up to repeated abuse. Mom’s Dynavox got dropped a few times. Eventually it stopped working. Once when the U.S.B. port was damaged. Another time when the screen stopped responding. Both times the A.L.S.A. had a second machine for mom to use while the original was getting repaired.
At $7500 a pop, that’s a hell of a lot of help. Mom had pretty good insurance, but they didn’t cover communication. Speech aids were specifically excluded. Most A.L.S. patients don’t have insurance coverage for A.A.C. Without the A.L.S.A., they’d be S.O.L.
This is one of a number of articles I’m writing to bring up awareness about A.L.S. and to encourage donations to the 2009 Walk to Defeat A.L.S. I’ve set up a donations page to collect money, where donors can claim one of over 100 books as a thank you gift. If you don’t have the money to donate, you can help by publicizing and linking to that page. I’ll be giving away a signed book by Elizabeth Bear for those who help publicize the drive (and more prizes will be forthcoming). More information on that offer can be found here.
The two most famous cases of A.L.S. are that of Lou Gehrig and Stephen Hawking. Stephen Hawking’s illness is somewhat atypical for A.L.S., in that most patients with the disease have a lifespan of 2 to 5 years after diagnosis. Longer lived patients survive 10 to 15 years. If indeed the underlying disease is A.L.S., Stephen Hawking is the longest surviving patient ever.
Lou Gehrig’s performance as a Yankee started declining in 1938, mostly his power at the plate. By 1939 he was having problems running the bases, fielding balls, and connecting with pitches at all. After 2,130 consecutive games played, Gehrig benched himself. Weeks later he went to the Mayo Clinic where he was diagnosed with A.L.S. Two years later he died.
Stephen Hawking first noticed symptoms when he was rowing. He didn’t have the strength he previously had, and then he started falling down. Over the next 40 years, he has gotten progressively worse. At this point in his life, he uses his cheek to control his speech A.A.C. device.
The first symptoms of A.L.S. that mom noticed were that her tongue and throat felt odd. Not loss of strength in her arms or legs. We (her family) started noticing that she slurred her words, and my brother and his wife talked mom into seeing a doctor. She got her diagnosis in March 2007 and lived 18 months afterward.
The prognosis for a patient with A.L.S. can’t be determined with specificity. Some patients live longer than others, and the reasons why are largely unknown. In two visits to the A.L.S. clinic at Virginia Mason, the doctor there refused to even speculate. For one, he thought knowing lowered the morale of the terminally ill. But the main reason was that there just isn’t any way to predict.
One thing that is known is that people with bulbar onset A.L.S. tend to have symptoms that progress faster than patients with limb onset. Bulbar onset is when the first symptoms show up in the function of swallowing. The medulla oblongata is also known as the bulbar nerves. They control the muscles that effect speaking and swallowing. Typical limb onset A.L.S. affects all the limbs first, sometimes progresses to the bulbar nerves, and lastly affects the diaphragm. For some reason that generally seems to take longer. Bulbar onset affects those nerves first, followed by arms and/or legs, and finally the diaphragm. In mom’s case, the decline in her breathing came concurrently with the loss of function in her arms and legs. And the prognosis, rather than the 2 to 5 years that most limb onset patients might expect, is 18 months to 3 years. Mom’s illness fell at the short end of that range even.
Bulbar onset has a whole different set of challenges than limb onset. Communication and eating are the first set of concerns for bulbar onset patients. Mobility and strength are prime problems for limb onset patients. Mom didn’t lose enough strength in her legs for that to be a serious concern until the last few weeks she lived. Another patient we knew didn’t lose the ability to talk or swallow ever. Because of the differences, in the early stages the same disease doesn’t even resemble itself.
This is one of a number of articles I’m writing to bring up awareness about A.L.S. and to encourage donations to the 2009 Walk to Defeat A.L.S. I’ve set up a donations page to collect money, where donors can claim one of over 100 books as a thank you gift. If you don’t have the money to donate, you can help by publicizing and linking to that page. I’ll be giving away a signed book by Elizabeth Bear for those who help publicize the drive (and more prizes will be forthcoming). More information on that offer can be found here.
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.
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.
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.
November 24, 1948 – October 15, 2008
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.
Well, mom’s team broke $10,000 in this year’s Walk to Defeat ALS.
Thank you to Deirdre, Tara and Amber for reposting my donation pitch. Thank you to Erin for coming up to the walk. Thank you to the people who donated; books will be on their way in a couple of weeks.
Mom had a good time visiting with folks. Jason sprained his ankle. Erin got to hold Nicholas. I have some leftover burgers. All in all a decent Saturday.