endless mercies

AUDIO VERSION

 

In the spring of 2015, even though Priscilla’s breathing remained stable enough for her to stay in regular home care, her condition progressed in other ways that posed continual new challenges for us.

For one thing, her neck and shoulder muscles became too weak to hold her head up. To do lift transfers, we had to put a stiff plastic insert in the top of the sling for support. As a result, we had develop routines for each kind of transfer all over again, because the sling was no longer behaving in the ways we’d become accustomed to.

For example, to get Priscilla out of bed in the morning, I’d been rolling up the sling so I could slip it under her, turning her from side to side.  But the sling wouldn’t roll up once we added the plastic insert. Now how was I supposed to get it under her? We wrestled with this problem for a couple of weeks.  I discovered that I could at least fold the sling in half, although the stiff plastic kept trying to pop it open again. Priscilla somehow got safely into her wheelchair each morning, although on some days there was a bit of suspense about that. Finally we sent an email out to our Dear Praying Friends, asking them to pray that we would have “grace, patience, and creativity to recognize the right new approaches and become accomplished in using them.”

Within a day of sending out this request, I had an insight. I’d been saying somewhat jokingly that I really needed three hands: one to keep the sling folded; another to position the sling; and a third to hold Priscilla on her side and keep her from falling off the bed (because that’s not how we wanted her to “get out of bed” in the morning!).  I realized I could use the large clip that held our quilt onto the blanket lifter at night as a “third hand,” to keep the sling folded for as long as necessary.  Things started working much better after that, though for a while each lift was still an adventure in mechanics (and in faith and trust, on Priscilla’s part).

Her right hand, one of the last parts of her body she could still move, began to stop working in the spring of 2015 as well. For one thing, this meant that she could no longer drive her power wheelchair. The mobility specialist recommended “attendant controls” that I could operate from the back. But our medical insurance initially denied coverage, on the grounds that I should be able to push her in a manual wheelchair instead. Actually, she would simply have fallen out of a manual chair, and she also needed to make regular back, seat, and leg adjustments, which the power wheelchair allowed, in order to remain pain-free and avoid sores.

We contacted our insurance case manager, who was always a dependable and effective ally. She told us to appeal the decision, and to call her once we had. When we did this, she said, “Give me a minute.” She tracked down someone who had the authority to decide the matter, and that person granted our appeal on the spot!  “I just want you to know,” our case manager told us, “that I’m in your corner.”  She surely was, and it was great to have her there.

Not having the use of either hand any more also affected Priscilla’s ability to do so-called ADLs (“activities of daily living”), such as washing her face, combing her hair, and brushing her teeth. We’d already introduced many adaptations so that she could keep doing “as much as possible for as long as possible” to accomplish these things on her own. For example, when she could no longer move a regular toothbrush up and down, we’d gotten an electric one that she could simply hold in place and let the bristles move. Instead of her leaning over the sink to wash her face with her hands, we’d worked out a system whereby she could use a washcloth and a basin while sitting back in her wheelchair.

But now I had to start doing for her the things she’d previously done for herself with my assistance. Washing her face and combing her hair were pretty straightforward, with some coaching from her. I picked up other tasks, such as cleaning the VPAP mask after each night, without too much trouble. But as I stood in front of her with an electric toothbrush in my hand, poised to brush her teeth for the first time, she said to me, “You’re a brave man.”  Eventually we worked out a mutually agreeable protocol for that ADL as well.

But there was still a concern we needed to address—a more existential one. Priscilla had been told she’d be safely home with God long before anything like this happened to her. Instead, the disease kept carrying her down into more and more severe levels of disability. “Why?” she asked one day, in much desperation. “What purpose does it all serve?”

What purpose indeed. How could it possibly advance God’s interests to have someone like Priscilla inexorably stripped of the power to use the creative and artistic abilities she’d employed so wondrously in His service, and to have her reduced into what felt more and more like utter helplessness?

We struggled with these questions greatly during this season of the disease’s progression. In the end, we found peace and joy by making a choice. We chose to believe what our faith was telling us, that God did have a purpose for all that we were going through, even if we didn’t understand it now, and even if we never found out in this life what it was.

Indeed, we recognized, God’s purposes are so vast and sprawling, and His time horizon so long, that no human being is likely ever to get more than a fleeting glimpse into a tiny part of them. So what made us think we could understand where all the details of our lives fit into this big picture, and how could we make understanding it a condition of continuing to trust God? We’d certainly had every indication that God was still with us, in the form of the help we’d received and the ideas we’d gotten for how to proceed under these new conditions. In the end, it all came down once again to trusting, enduring, and not being offended.

AUDIO VERSION

 

Christmas 2014 was a bittersweet celebration for us.  We knew Priscilla would be going into hospice first thing in the new year, with an estimated life expectancy of three months. (That is, if she didn’t die suddenly in the night, which could happen at any time.)

We listened once again to the King’s College Service of Lessons and Carols on Christmas Eve, this time in its full musical glory on our sound system, instead of on the emergency radio we’d used the year before during the power outage. The next morning I surprised Priscilla by using our special Christmas dishes for breakfast. I’d secretly pulled them out of storage. She was moved to tears because she’d been wishing for some nice holiday touch like that, but she hadn’t wanted to ask me to do any extra work. A neighbor brought us a lamb dinner for that evening and some other friends brought us cinnamon rolls for the next morning.

As a Christmas present, Priscilla gave me a book about the St. Albans Psalter, a beautiful illuminated biblical manuscript from the Middle Ages. We had several opportunities in the following days to sit together in the living room, winter sunlight streaming through the windows, and read aloud through the book, pausing to admire and discuss the many illustrations. These were timeless moments.

Priscilla said grateful goodbyes to her home health care nurse and aide during the last week of December. They’d been with her for nearly a year and she’d become close to both of them, particularly since they shared her Christian faith and hope and cared for her in light of it. For example, Priscilla once mentioned to the nurse how much she was looking forward to “going home” soon. She responded, “When a patient says something like that, we’re supposed to note in their file that they’re suicidal, and ask the doctor to prescribe anti-depressants.  But I can tell you’re not depressed, you’re joyful!” (No notation was made in the file.)

On Monday, January 5, 2015, Priscilla entered a home hospice program. Three weeks later, she withdrew and returned to regular home care.

Why? It simply wasn’t time yet, and that became apparent right away. The hospice culture, quite understandably, was geared towards patients who were near death, and who were therefore typically unresponsive or even unconscious. Priscilla, by contrast, was still willing and able to take an active part in decisions about her own care. And so there was a mismatch between the culture and her capabilities.

Hospice caregivers would look at me and ask, “Do you think she would like such-and-such?” I’d turn to Priscilla and say, “What do you think, would you like that?” Then she’d answer the person herself.

At one point a caregiver, after asking Priscilla various check-up questions, went silent for quite some time, clacking away at her computer keyboard. Finally Priscilla inquired, “Is there something else you need to ask me?” “Oh, I’m done with you,” came the reply, “I’m just ‘charting’ now.” (Filling out Priscilla’s medical chart.)

This would have been perfectly reasonable with an unresponsive or unconscious patient. But we had things we needed to get done pretty much every minute of the day, and we couldn’t afford to wait around while somebody charted. Nor did we want to leave a visitor in one room while we attended to responsibilities in another. We had to explain our situation to several different hospice staff to get them to chart somewhere else (back at the office, or in their cars) once they finished their actual work with Priscilla.

It didn’t take long for the mismatch to become uncomfortable.  When we explained the situation to Priscilla’s medical team, they understood and agreed that she should return to home care until her condition became much more limiting. And so, in the last week of January, Priscilla happily welcomed back her home care nurse and aide, both of whose schedules permitted them to add her as a patient once again.

One good thing did come from her brief stay in home hospice. The agency sent over a physical therapist to do an evaluation, and he quickly determined that her shoulder, elbow, wrist, and finger joints were at risk of painfully locking up, as her lower-body joints had been earlier, because she wasn’t using them much any more. We needed to add upper-body range-of-motion exercises to her repertoire, and these helped her remain flexible and pain-free the rest of the way.

As the physical therapist was teaching me these exercises, he kept saying, “I feel as if I know you from somewhere.” He asked a few questions about us, and when he learned that I’d been the pastor of a church in town, he exclaimed, “That’s it!” He and his family had attended the same church under my predecessor, and while they’d moved to a different one before my time, they’d always come back for Christmas Eve. He’d heard me preach on that occasion several times. When he explained this, I recognized him as well, from the greetings we’d exchanged after those services.

Priscilla’s medical team planned to revisit in March the question of what program would be best for her. Meanwhile, they’d work on making resources to address “air panic” available for quick deployment if they were ever needed. Her home care nurse discovered that her doctor could actually write her a prescription for liquid morphine under justifying circumstances, so that became our contingency plan.

In early March, Priscilla’s nurse practitioner told her, “I think you’ve got more than three weeks left, though I’m not sure you’ve got twelve.”  (In other words, she might make it into June.)  Nevertheless, her supervisor already wanted someone else to assume her role, because she wasn’t yet hospice-certified, and “end of life” issues were sure to arise soon.

Priscilla didn’t want to lose this nurse practitioner.  The home care nurse had found her when looking for someone who could write medical orders who would be able to visit regularly in person.  We all agreed that she was exceptionally skillful and perceptive, and she’d become a friend to Priscilla as well.

As a temporary compromise, Priscilla agreed to go into a local hospital’s pre-hospice program, which would add a hospice-certified doctor and nurse to her medical team without causing her to lose any of its other members.  But when the program’s intake nurse interviewed her, she said, “Actually, we wouldn’t put you in pre-hospice.  You’re the kind of patient we’d put right into hospice itself.”  So that plan didn’t work.

Finally the nurse practitioner’s supervisor came with her to see Priscilla.  She recognized that she had a great team of capable people working with her and that she had a good relationship with all of them.  The supervisor agreed that Priscilla would be well served by keeping each of these team members in place for as long as possible.  Since her condition seemed stable, the question of the “best program” was put off again, to the beginning of June.

When that month arrived, we let sleeping dogs lie, nobody else pursued the question, and the issue of hospice slipped quietly off the agenda.

AUDIO VERSION

 

One night in late October 2014, Priscilla was awakened around midnight by pain spreading throughout her lower back.  She couldn’t get back to sleep and at 4:00 she woke me up for help.  I gave her a heavy dose of pain killers and we both slept a few more hours.  Then we called her nurse practitioner and home health care nurse.

They sprang immediately into action, because they’d already become concerned about her.  The nurse practitioner had noted on a recent visit that Priscilla’s heart was beating rapidly.  She’d suspected this was due to failing lungs: the blood was oxygen-poor, and so the heart was trying to send more blood around to deliver what oxygen it could.  The nurse, for her part, had witnessed the decline in Priscilla’s breathing on her weekly visits and had already been thinking it was time to get her into hospice.  She just hadn’t said anything to us about it yet because she knew families had to accept what this meant before they could consider it fairly, so she was waiting until we brought  it up ourselves.

The nurse practitioner got to our house as soon as she could and found Priscilla breathing rapidly and shallowly, with her heart racing.  She called her supervising doctor and he agreed that Priscilla was likely “compensating” for oxygen-poor blood.  But this was not sustainable.  “Sooner or later she’s going to ‘de-compensate,’” he warned, meaning that the heart would become worn out by the exertion and slow down, leaving the body starved for oxygen.  The heart might even stop entirely.  The nurse practitioner later told us that she’d thought this could be the end.

But it wasn’t.  Somehow Priscilla’s body worked out a different way to “compensate.” (No one ever figured out exactly how; “our bodies are marvelous things” was the only explanation the nurse practitioner could offer.)  She pulled out of the crisis, but it was agreed that she would need some new kinds of help.

Priscilla had gotten the VPAP  in April.  Four months later, by August, the symptoms of carbon dioxide buildup had returned, so the respiratory therapist (RT) increased the pressure.  Now, only two months further on, the symptoms were returning again (the back pain, for example).  It seemed the weakening of the lung muscles was accelerating.  The RT now recommended another pressure increase and switching the VPAP from “spontaneous” mode (responding when Priscilla initiated a breath) to “timed” (breathing for her if she didn’t initiate within a certain period).  Her caregivers also felt that the pressurized air should be supplemented with oxygen.

Priscilla agreed to give these measures a try, once she was assured that they’d only provide comfort and not artificially prolong her life.  But she found that the oxygen dried out her throat and made her terribly thirsty, while the “timed” breaths kept waking her up.  She decided she’d rather die during a good sound sleep, if it came to that, than suffer through thirsty, broken nights, so she went back to plain “spontaneous” breathing.

Priscilla’s medical team now all encouraged her to enter a hospice program.  This could be at-home hospice if she didn’t want to move into a residence.  They explained that sooner or later, as her lungs weakened, she would experience “air panic”—the sensation that she was drowning—and that she’d need liquid morphine to turn off this signal to her brain.  Home health care agencies didn’t have it; hospices did.  “And you really don’t want to be without it when you need it,” they warned.

By then it was early November.  The entrance into home hospice was delayed as we investigated whether Priscilla could keep her current caregivers.  Unfortunately, she couldn’t keep the nurse and aide from home health care, but she would be able to keep her case manager and nurse practitioner, who were contracted through our medical insurance, and the RT and mobility specialist, who “came with the equipment.” So the transition wouldn’t be completely disruptive.

By the time this was settled, caregivers were already shuffling their schedules to accommodate Thanksgiving and Christmas vacations.  “You might as well wait until the new year,” the aide advised Priscilla.  “That way you’ll get your ‘regulars,’ and you’ll only have to train them once.”  Her condition was stable at this point and this seemed a safe enough course.  But we did do all the preliminary paperwork so that Priscilla could go right into home hospice in the first full week of the new year.

Once again, she almost didn’t make it.  In mid-December she had another episode in which she started hyperventilating, and this time she was also shaking uncontrollably.  We still had the supplemental oxygen, but it made no difference.  Somewhat desperately we called our home care nurse, who was supposed to come by sometime that day.  “I’m parked right outside your house!” she told us.  She’d arrived the moment we needed her.  She consulted the nurse practitioner and they figured out how to bring Priscilla’s symptoms temporarily back under control.  But they had to find out what had caused them in the first place, to prevent any recurrences.

A battery of blood tests ruled out the most likely possibilities, such as an infection.  This left, as the probable culprit, a somewhat rare but well documented complication of ALS, “autonomic dysregulation.”  The disease, especially in its late stages, can affect the branches of the nervous system that control things like heart rate, breathing, and involuntary muscle actions such as shaking from cold.  Autonomic “storms,” like the one Priscilla had just had, could be triggered by poor oxygenation.  She’d had a shower earlier that day and the exertion may have been enough to cause this.

So she was walking a tightrope.  ALS was weakening her lung muscles, but her autonomic nervous system was mysteriously improvising some effective response via heart rate, blood pressure, respiration rate, etc. to keep her body oxygenated.  At the same time, the disease was also throwing off this very system that was otherwise keeping it at bay.  I discovered that autonomic dysregulation is implicated in the sudden death of ALS patients, most often at night, due to things like a catastrophic drop in blood pressure or a sudden cessation of breathing.

The RT had told me earlier that she’d discovered, by downloading the data from the SD card in Priscilla’s VPAP, that she had “central apnea.”  I’d wondered why she kept her voice low until I did some research and discovered what this was.  Obstructive apnea, the kind we are perhaps most familiar with, is when you can’t breathe, because of a blockage of some kind; central apnea is when you simply don’t breathe.  In the night, Priscilla’s breathing had been stopping for anywhere from 20 seconds to 2 minutes at a time.  At any point it might have not started again.

From now on I would go to bed each night not knowing whether Priscilla would still be with me when I woke up.  We adopted a new way of saying good-night to each other. One of us would say, “See you in the morning,” and the other would respond, “Either ‘this one’ or ‘that one.’”

For nearly another 400 nights, it was “this one.” Now I’m looking forward to “that one.”

AUDIO VERSION

 

“You look terrible!” Priscilla exclaimed when I came into her office one day in September 2014. Earlier that day I’d helped the home health aide give her a shower, but I’d also rushed in and out of my own office whenever I wasn’t needed, furiously trying to finish a freelance editing project. I’d gone back to the edit once I got Priscilla settled at her computer, but the fact that I was “pushing” to finish showed clearly in the drained look on my face that she recognized with alarm the next time I walked into her office. We realized that trying to do freelance jobs was wearing me out when added to overwhelming daily care responsibilities and long-term accumulating fatigue. We wondered how much longer I should keep accepting these jobs.

The answer came a couple of weeks later. It was a day when no one was supposed to come in or out, so I expected to have plenty of uninterrupted time for freelance work. But as I sat down hopefully at my desk, the phone rang twice in succession. Priscilla’s nurse practitioner and home care nurse were following up on some symptoms that had concerned them. Over the course of the day they each came in for complicated, extended sessions, and a friend also kindly but unexpectedly dropped by for a visit, bringing something she’d baked for us. Throughout the day I kept trying to return to the freelance project, but several times, literally just as I was sitting down and saying, “Finally I can get to some editing,” I’d be interrupted again. In the end, I did one paragraph for the whole day!

“It was an awful day,” I wrote in my journal, but it was also a very helpful day, in that it showed me I could no longer promise clients in good faith that I’d be able to meet specific deadlines. That settled the matter. There could be no more freelance assignments after this one. We explained the new situation in an email to the group of people we had started calling our Dear Praying Friends (from my usual salutation).  We asked them to pray with us that I’d somehow get this last edit done. It took another couple of weeks of hard slogging, but I was able to submit it by the original deadline.

God had us covered for the income we would now be missing. A little earlier in the year, many of the people Priscilla referred to as her “Williams kids” (because we’d first met them when they came to our church as students at Williams College) had gotten together and collected a significant gift for us to live on in just such an eventuality. “We want you to have as much time as possible together,” they explained. Their wishes would now be fulfilled. My time with Priscilla would be both quantitatively and qualitatively greater now that I’d no longer have to look over my shoulder at looming freelance deadlines. Over the next year and a half, other friends additionally provided for us very generously, so that I was able devote myself full time to Priscilla’s care for the rest of her life. I can’t put into words what a magnificent gift this time together was and how grateful I will always be for it.

Even if I weren’t trying to do freelance work, Priscilla’s needs were still expanding to the point where I was no longer able to keep up with many  household tasks. For a while, a neighbor had kindly been sending her house cleaner over to help us, but now we recognized that we needed even more help than this—with things like laundry, in addition to cleaning and vacuuming. This same neighbor then connected us with a young woman of many talents who was looking for occasional work to supplement her income as an artist and singer-songwriter. (You can listen to one of her songs here.)  She started coming for several hours at a time, first once a week, then twice a week, to help with regular household tasks and also with what we called “special projects.”

For example, at one point Priscilla accidentally backed her power wheelchair into a framed watercolor of orchids that her brother had done for her.  She cherished this painting and we’d hung it in a low (and thus vulnerable) spot because she wanted to be able to see it from her “day bed.” The painting fell off the wall, the frame broke, and the glass shattered. But who better than an artist—our new helper—to take it in and get it reframed? Hearing that we now had her coming in regularly, some other friends sent us a generous gift specifically earmarked for “household help,” to cover her well-earned wages.

So the last quarter of 2014 saw some significant life changes. I gave up freelance work to devote myself full time to Priscilla’s care, and we had someone coming in regularly to help with many domestic tasks. And there was one more important change. Different women from our church had been alternating sitting with Priscilla on Wednesday afternoons while I ran errands. But now they all started coming at the same time, because none of them wanted to miss the visit with her.  A devotional/prayer group was born. Each week they’d read a selection from a Christian book and then pray for one another and for other needs they were aware of. Priscilla always looked forward to these times and I know the other women did, too. One of them confessed to me, “I first started coming so  you could run errands, but now I come to see Priscilla.”

But all of this nearly didn’t happen. The doctors had predicted that Priscilla would likely die by the fall of 2014, and she almost did.  In my next post I’ll explain what happened.

AUDIO VERSION

 

Priscilla loved to be outdoors. When I was working as a pastor, I’d leave for the office in the morning and she’d step outside “just to wave goodbye.” Often when I returned for lunch several hours later, she’d still be out there. She’d have spotted a weed or dead stalk in a garden, gone over to deal with it, and quickly become so absorbed in gardening that she never went back inside. So it was a real disappointment when she became effectively housebound around the time of her diagnosis. She bravely accepted the new reality, but also greatly cherished any opportunities she did have to get outside.

She had become very sensitive to temperatures, both too warm and too cool, so it had to be a steady 70º or so if she were going to be outside for any length of time. Temperatures began to get back into the right range by mid-June 2014. Going out onto the deck provided a fresh-air experience for her with the least amount of effort for both of us. But we faced two new obstacles to getting out there. The sliding door out onto the deck had become broken, and our mobility specialist had warned us not to try to roll over the 2-inch “curb” to go to or from the deck in the power wheelchair, as we’d been able to do in the manual one. “You need a ‘threshold ramp,’” he explained. This was a 2-foot-long version of the same kind of ramp we used to get in and out of the garage. So we ordered one of those.

About a week later, on a day when the temperatures were in the low 70s, a friend from church came over and fixed the sliding door. Later that same day, the threshold ramp arrived. Since conditions were perfect, we decided to put it right to use. Priscilla poised her power wheelchair at the top of the ramp and looked down. The deck rail was only four feet beyond its end. “This is like trying to land a plane on an aircraft carrier” she said warily. But then she adventurously launched forward. Though she’d only gotten the wheelchair a week earlier, she was able to stop and “turn on a dime” at the end of the ramp, and we enjoyed the rest of the afternoon out on the deck.

The next day she went after bigger game. She realized that the threshold ramp would also work for the “curb” at the garage door. If she first went down the 12-foot ramp into the garage, the 2-foot one would get her onto the driveway and she’d have access to the sidewalks and streets of our neighborhood. Temperatures were once again just right, so out we went and over to the grounds of the nearby middle school. Since it was summer, there was no traffic and the trees, lawns, and gardens were looking great. Priscilla breathed in the fresh air and soaked in her surroundings. She said it was one of the happiest days she’d had in a long time.

For a while after that the weather was too warm for such outings, but on the July 4th weekend it cooled back into the 70s. We celebrated “Independence Day” by going all around our neighborhood together, following our old walking route, for the first time in two years.

Many other times that summer we went out onto the deck at least for breakfast, before the day warmed up too much. But by early August, Priscilla’s arms and shoulders were becoming so weak that she was concerned she wouldn’t be able to hold herself in the wheelchair as it went down the ramp, particularly since there were jerky motions as she started and finished the descent. So our mobility specialist added a shoulder harness that we could strap on whenever she chose.  It was much like one a person would wear for a roller coaster or other amusement park ride, though it was not rigid but made of comfortable but tough stretchable fabric. Now she could go up and down the ramp confidently and safely.

In mid-August there was another unseasonably cool day when the highs were in the low 70s. We decided it was the perfect opportunity to walk the block once again. On a smooth stretch of roadway Priscilla got a mischievous smile on her face. “You know,” she said, “I’ve never tried this out in fifth gear.” (The wheelchair had five speeds, but she never went higher than first at home.) She took off down the street at full speed. I could barely keep pace by running alongside. She finally had mercy on me and slowed down, and we both laughed so hard that we nearly collapsed.

When fall arrived, the temperatures cooled down and Priscilla concluded sadly that she probably wouldn’t get outside again. She was still able to admire the fall foliage out the windows.  She could see orange and yellow trees, but she missed the red ones.  None of those were visible from the windows.  (When I came home from shopping, she would ask me, “Did you see any red trees?”)  But then in late October there was an unseasonably warm and sunny day when the thermometer hit 74º.  Priscilla had no appointments with home health care workers that day and so she was free to go outside one more time in the sunshine.

We went all the way around the 2½-mile route we used to walk together, with Priscilla bundled up in a warm shawl and a blanket.  We were able to check in on all the sights we used to see, including the trees on one street that always turned a gorgeous red in the fall.  Here’s how Priscilla described this “grand day out” in an email to a friend:

“The ‘walk’ was absolutely divine. We saw lots of red trees, which are my favorites. It was definitely a gift from God to have perfect weather conditions and no one coming to the house so that we could get out. The sky was so blue. I also loved the way the leaves were backlit by the sun, many of them decorated with shadows from the leaves in front of them. So many different patterns!”

We agreed that the opportunity to take this walk had been the kind of “good and perfect gift” that the Bible talks about God giving His children.

AUDIO VERSION

 

As I shared in an earlier post, Priscilla’s computer crashed in August 2011 and God provided funds in a remarkable way to replace it.  This “forced upgrade” turned out to be a blessing in disguise.  As Priscilla’s disease progressed, the new computer’s updated hardware and software offered her much assistance that wouldn’t have been available with the old one.

For example, it came with a finger-tracking bluetooth mouse, instead of one that she had to lift and move by hand and that was tethered to the computer by a cord, limiting the distance at which it could be used. Once we got the power wheelchair, we found that it didn’t fit under her desk the way the manual chair had. But she could still sit close enough to the desk, with the bluetooth mouse on a mousepad on her lap, to use the computer much as she always had. Even when she could no longer have lifted and moved the old mouse, the finger-tracking feature of the new one kept her in business.

Apple also built an enhanced dictation feature into its newer operating systems. This allowed Priscilla to dictate rather than type most of the material in her emails. When the feature didn’t quite hear her correctly, she could use the mouse to select the misspelled word and fix it using an on-screen keyboard.

By the fall of 2014, Priscilla’s voice was becoming fainter because of lung weakness, and the dictation feature was having increasing difficulty understanding her. So we looked around for a good external microphone that we could connect to the computer via a USB port. We identified a studio-quality one that we thought would work well and we ordered it. The next day, we received an unexpected gift for almost exactly the price we’d paid.

When the microphone arrived, Priscilla tried it out and exclaimed, “It didn’t make any mistakes!” We were encouraged to think that God still had a purpose for her to offer her support and counsel to friends literally around the world via email, well into her disease progression.  (These days I sit at the same desk and use the same microphone that Priscilla used to dictate her emails to record the audio versions of these posts.)

But I wanted to see whether I could help her keep using the computer for more than email. I got myself up to speed on Apple Script and was able to write a short program to get Firefox (our preferred browser, which was not from Apple and so not automatically “speakable”) to take her, upon spoken command, to Google. Now Priscilla could do Internet searches by dictating the search terms.

So what about Facebook? Priscilla liked keeping up with people’s lives that way. One night I had a conceptual breakthrough. I realized how I might generate a URL that would take me to the Facebook login page with the email already filled in.  All I had to do was “hack into” the 400-character prefabricated URL they often sent me as a link, for example, to view a follow-up comment on a thread I’d posted to. I was able to pull out the right 100 or so of these characters and create the desired URL. I plugged it into an Apple Script program that would tab to the next field and type in the password upon the spoken command “Log In to Facebook.” Priscilla loved having such commands at her disposal. Technology was mercifully enriching her quality of life.  And though I was doing only the most rudimentary kind of programming, I still felt like a mad scientist.

Amy Carmichael writes in Rose From Brier that sometimes a person who’s an invalid simply wants relief from their situation, and that “there is nothing that can so quickly give this release as a book that takes me out of my own life into the lives of others.” Priscilla found this to be true and was an avid reader throughout her illness.

At first she’d hold a book on her lap and turn the pages herself. When her arms and hands became too weak to do this, she switched to listening to audio books on CD. She had a small CD player that she used with earphones. When she could no longer open and close the player to change CDs, she started using a tablet, the gift of a friend, to listen to MP3 audios with apps such as Audible, Hoopla, and LibriVox. And when she could no longer use this tablet, I would cue up the book for her on the Internet site of one of those services and run a long “mini-to-mini” cord from the computer’s line-out port across the room to her “day bed” and plug it in to her headphones.

In these various ways she read, or listened to, at least one book a week, often more, during the last three years of her illness, meaning at least 150 in all. Some of these were more “popular” works such as The Adventures of Sherlock Holmes.  But since I’d been a literature major in college, she also asked me to recommend some classics for her to catch up on. She listened to works by authors such as Dumas, Hugo, Jane Austen, Charlotte and Emily Brontë, and James Fenimore Cooper.  When she found an author she liked, she’d listen to everything they’d written that was available to her on audio.  (All five of The Leatherstocking Tales, for example—four more than I’ve read!)  Thanks once again to merciful technology, she was able to keep pursuing her education even when she could barely move.

AUDIO VERSION

 

“Someone’s getting out of his car in front of our house, and he looks just like Simon!” Priscilla called out to me excitedly from her office one Saturday morning in May 2014. “Reeea-lly?” I responded from the kitchen, stretching out the word to suggest that maybe I knew more about this than I’d let on. “It is Simon!” she exclaimed. “And he’s coming to the door. What’s he doing here?”

That was a good question, since Simon, whom we’d known for over twenty years, ever since he came to our Massachusetts church as a college student, lived in a major city on the East Coast. Priscilla wheeled herself to the front door and was there to greet him when I let him in. “What are you doing here?” she asked, now able to get an answer directly from the source. “I came to see you,” he replied. “I know that,” she responded, “but what brought you to East Lansing in the first place?” (People would sometimes stop to see us when their work brought them to town, for research collaborations at Michigan State, for example.) “I came to see you,” he repeated. Then she understood that he’d made the ten-hour drive just to see her.

He and I had conspired to keep the visit a secret until the last moment because Priscilla had been experiencing agitation as a symptom of ALS and it was best for her not to have to anticipate out-of-the-ordinary events. Simon had driven most of the way after work on Friday, stayed in a hotel along the route, and come the rest of the way this morning. He’d set up in a local coffee shop and I’d phoned him to come to our house as soon as I’d finished helping Priscilla get ready for the day, around 11:00. And so it was that he appeared at our door, bearing a fresh dozen of our favorite bagels, just as we were coming out for our customary late breakfast.

We had a marvelous time sharing this meal and then went out onto the back deck to visit some more. Simon helped us with some yard work, just as he’d done in his student days. Around 3:00 he explained that he really needed to get going, as he’d made plans with his wife and children for the rest of the weekend. After some heartfelt goodbyes, he got into his car and drove all the way back to the East Coast!

So what was the point of making a 20-hour round trip for a 4-hour visit? Simon made this trip for the same reasons as the many other visitors who came to see us over the next several months—more than 70 in all, from some twenty different states, provinces, and foreign countries.

They came, first of all, to pay tribute to Priscilla’s life. They wanted to tell her what impact she’d had on their lives and thank her for it. One relative who lived at a considerable distance, whom she’d really believed in and helped over the years, found out on a Wednesday that she had a fatal illness and arranged to come with his wife that weekend, to be sure he’d have the chance to express his appreciation.  Along these same lines, some visitors wanted Priscilla to meet their young children, and for them to meet her, so the children could share a little bit of of the experience they’d had with her.

But while these visitors were with us, they were also able to help us in practical ways. This had been happening somewhat already. For example, a couple who were our close lifelong friends came with their two teenage daughters in the fall of 2013 and winterized all of our gardens in one weekend. In 2012 it had taken Priscilla and me five weekends to do this, and we knew there was no way we could even attempt it on our own now.

But what had been a trickle now became a flood. Every set of visitors always asked, “What can we do to help?” We gratefully prepared a list for each of them. For one thing, they helped us keep up throughout the growing season with our lawn and gardens, which were a source of joy and fulfillment for Priscilla when they were orderly, and of distress when they weren’t. In one case, a first set of visitors cut down some brush, the next set cut it up into pieces, and a third burned it in our fire pit!

In another case, when the influx of grass and weeds among her flowers became too distressing for Priscilla, she prayed that God would send someone to help. Without knowing anything about her prayers, a couple who were our good friends began to feel strongly that they wanted to do something for us.  They kept asking about this and ultimately sent the wife to us for several days while the husband held the fort and cared for their children.  When she arrived, we tentatively went over a short list of neglected household tasks and Priscilla finally asked, “How do you feel about gardening?”  “Oh, I love gardening!” she replied.  “I can do it for hours without noticing the time go by!”  By the time she left, the influx had been beaten back.  Priscilla knew that neat gardens were a “want” rather than a “need,” but her kind Heavenly Father had sent just the right person to help with that anyway.

Visitors also helped in countless other practical ways. For example, upon learning that the weight of the blankets had become too much for her, one of Priscilla’s brothers ingeniously fashioned a “blanket lifter” for her out of thin PVC piping. But this was not all our guests did for us. Priscilla and I realized, in the midst of the “flood,” that they were also helping us to anticipate what heaven would be like. We were enjoying timeless fellowship in rapid succession with people who came from many different seasons of our lives, as a foretaste of what lay in store for us when we would all be together forever.

And still later in the year, we recognized one more reason for, and value of, all these visits. We realized that each our guests was walking a bit of the road with us, for anywhere from a few hours to a few days.  This helped our difficult road feel a little shorter and a little bit brighter. And for that we were, and are, very grateful.

As “The Servant Song” by Richard Gillard puts it:

We are pilgrims on a journey.
We’re together on the road.
We are here to help each other
Walk the mile and bear the load.

I will weep when you are weeping.
When you laugh, I’ll laugh with you.
I will share your joy and sorrow
Till we’ve seen this journey through.

When we sing to God in heaven,
We shall find such harmony
Born to all we’ve known together
Of Christ’s love and agony.

AUDIO VERSION

 

In the spring of 2014, Priscilla made a third significant transition to a new assistive device.  She also moved from a manual wheelchair into an electric one. Getting a definitive diagnosis had coincided with a watershed in the progression of her symptoms. We found out that she had ALS just as she was becoming unable to transfer, breathe at night, or move about the house without mechanical aid.

A physical therapy evaluation at the hospital had suggested that Priscilla’s arms and shoulders would soon become too weak for her to push herself in a manual wheelchair. Our home health care physical therapist (PT) agreed with this assessment, and so shortly after Priscilla was discharged, she began the paperwork needed to get a power wheelchair. But she warned that this could take several weeks.

“In that case,” Priscilla responded, “is there any way you can help me find a seat pad for my manual chair?” It had a “sling seat” that wasn’t very comfortable now that she was in it most of the day. We’d looked online for pads, but the size we needed, 15×15 inches, was small and the selection was limited. (The narrow seat did, however, allow Priscilla to maneuver well within our house.) “Oh, I think there’s one that size at the office,” our PT replied. It turned out that this was the only seat pad at the office. No one was quite sure how it had gotten there. But it was thick and comfortable, and a perfect fit. Our PT gave it to Priscilla to use until her power wheelchair arrived.

A mobility specialist from the medical supply company that would provide the wheelchair came and discussed all the feature options with us. He looked over our living situation and recommended a model that he thought would suit Priscilla’s needs well. He worked with our PT to complete the paperwork needed for a formal prescription, and our doctor signed it right away. This should have been enough for the chair to be ordered, assembled, and delivered.

But the process was unfortunately delayed for several more weeks by an agent in the company that handled equipment financing for our medical insurance. She kept insisting that we had to pay 50% of the cost of the power wheelchair. These can cost as much as a small car, so this would have been a formidable sum. But our insurance contract stated clearly that once we’d met our out-of-pocket maximum for the year (and the hospitalization had taken care of that), all equipment would be covered 100%. A customer service representative from our medical insurance even called over to explain this, and a notation was made in Priscilla’s file. But the agent insisted that the insurance representative was simply wrong, and that we had to pay 50%.

Clearly we were up against the proverbial “immovable object.” We started asking friends to pray that the issue would be resolved. This included the two people we were working with most closely to get the new wheelchair. From a couple of things our PT had said, Priscilla had felt free to ask her, “Are you a Christian?” and she’d replied, “Of course!” And the mobility specialist, after asking about our life stories in the course of his work and discovering we’d been in the ministry, shared his own deep faith. They both agreed to pray with us. I recorded in my journal at this time, “We’d asked everyone to pray, so we’d see what God would do. We trusted His purposes and timing in all this.”

The issue was finally resolved when the social worker our medical insurance had assigned to Priscilla called the recalcitrant agent and “read her the riot act” (as she put it). The wheelchair was ordered forthwith, and our insurance paid 100% of the cost, as it had been prepared to do all along.  But by now the delivery had been delayed so long that Priscilla’s arms and shoulders had weakened to the point where pushing herself in the manual wheelchair was very difficult and painful. I was pushing her if she needed to travel any distance or move up onto a rug from the wooden floors.

So why the delay? No doubt God was pursuing many purposes, as always,  in a complicated situation, but one thing we did find out about was that the delay actually helped save a marriage. The complex process of ordering the wheelchair, which was drawn out even more by the dispute over coverage, got us working with a variety of different people we wouldn’t otherwise have had the chance to get to know so well. One of them shared with Priscilla, who was always a sympathetic and encouraging listener, that her marriage was in trouble. Priscilla prayed and counseled with her, but then lost contact after the coverage issue was resolved. But over a year later, we learned from someone who knew this person that she felt Priscilla’s counsel and prayers had helped her get on a new footing with her husband.  Their marriage was happy once again. This story gave us a small glimpse into the continuing purposes that God had for Priscilla’s life even as her disease progressed into greater and greater disability.  It also helped us appreciate how much larger than our own personal concerns God’s purposes must be all the time.

As can be imagined, when the power wheelchair finally arrived, there was a learning curve. On her second day using it, Priscilla got stuck in a doorway, with the back wheels slanting against the frame in different directions, preventing movement either forward or backward. I had to climb up onto the chair, squeeze through the small remaining doorway space, and lower myself off the back of the chair so I could disengage the wheels from the motor, thus deactivating the automatic locks, and push Priscilla back out to safety.

But she’d always had great hand-eye coordination, and before too long she was zipping around the house swiftly and smoothly. Another “friend” had come into her life to help her keep doing what she wanted to do.

AUDIO VERSION

 

We crossed a second threshold in the few days after Easter—a more ominous one. (Perhaps the blessed visit with our friends and the return of the birds on Easter weekend had been “tokens for good” to cheer us on as we faced these new challenges.)

Priscilla had been waking up each morning with a headache. She was also having vivid nightmares, she had difficulty lying on her back, and she was getting night sweats. During the day she had trouble concentrating. We mentioned these things to our home health care nurse and she said they sounded like the cluster of symptoms that indicates carbon dioxide buildup. Priscilla’s lung muscles were apparently weakening to the point where they were having difficulty exchanging the carbon dioxide in her blood for fresh oxygen.

As soon as the nurse explained this to us, I heard these words in my head:  “The harbingers are come.” (These are the opening words of the poem “The Forerunners” by George Herbert.)  While Priscilla’s earlier symptoms had been disabling but not life-threatening, these nighttime symptoms were the first signs of the complication of ALS that was the cause of death for most patients, respiratory failure.

Priscilla would now need help breathing, and she’d have to talk to a respiratory therapist (RT) about that.  If this were the case, then Priscilla knew exactly which RT she wanted: a woman who’d attended the church we’d served in town. I’d performed her wedding ceremony, and Priscilla had coordinated her wedding reception.  The only problem was, our medical insurance used a different company as its respiratory equipment supplier, and RTs worked for the supply companies.

We spoke with our nurse about this late on a Friday afternoon, when businesses were already closed. But first thing Monday (as in 8:00 a.m.) she called our insurance case manager and the two of them got to work. By the end of the next day, the RT we wanted was in our home for her first appointment with Priscilla! Our insurance had once again approved an exception from their “default” supplier, thanks to the vigorous efforts of our two advocates.

It was a true blessing from God to have this friend and sister in Christ, who was also a very skillful and knowledgeable medical professional, at our side to walk us through the breathing challenges that Priscilla would face from this point onward.  Priscilla made very clear that she didn’t want any artificial life-prolonging measures. “That would be an invasive ventilator,” the RT explained.  What she had in mind instead was non-invasive ventilation, which would alleviate Priscilla’s distressing symptoms at night without extending her season of disability.

This was specifically a VPAP, or variable positive airway pressure machine. It would send in air under pressure to give Priscilla a boost whenever she initiated a breath, and it would leave a little pressure in place afterwards to keep her airway open.  It took a little while for the two of them to settle on just the right machine, mask, and head strap.  But within a couple of weeks, Priscilla was using the VPAP comfortably each night and sleeping much better.

Then I started having vivid nightmares of my own. During the day there were many responsibilities to attend to, but at night an undistracted mind could register the fact that the disease was now openly displaying its fatal character.  I had one recurring dream in which the two of us would head to an airport or train station, but Priscilla wouldn’t get out of the car or taxi when we arrived. “I’m not going with you on this trip,” she would explain. She seemed to accept peacefully that we were going to be separated for a while. Sometimes these dreams were so vivid they woke me up, and when I realized what they meant, I didn’t feel quite so peaceful about it.  Things got to the point where I dreaded going to sleep at night, because when we were awake, whatever the challenges of Priscilla’s illness, at least we were still together! But I can see that I really needed to process what was happening, and I hope that these dreams helped me do that.

Earlier I mentioned Herbert’s poem “The Forerunners.” In it, he meditates on the first appearance of white hairs on his head. He recognizes them as signs of aging, and wonders whether he will one day lose the ability to express himself articulately. (As a preacher who also wrote poetry in English, Latin, and Greek, this was a heartfelt concern.) In other words, he was processing, too.

Herbert concludes that if he can always say in his heart, “Thou art still my God,” it won’t matter what he can no longer say with his mind, because the best he can hope for his words anyway is that they will reflect his love and loyalty to God. And so he says, speaking to his words directly, that the end of them would not be the end of him:

Yet if you go, I pass not; take your way:
For “Thou art still my God” is all that ye
Perhaps with more embellishment can say.

Priscilla herself was also saying, perhaps now with slightly raspy breath, “Thou art still my God.” When we sent out an update to tell our friends about the new VPAP machine, she requested that we end it with this quotation from Amy Carmichael’s book Rose from Brier:  “I have been asking that our dearest Lord may have the joy (surely it must be a joy to Him) of saying about each one of us, ‘I can count on him, on her, on them for anything. I can count on them for peace under any disappointment or series of disappointments, under any strain. I can trust them never to set limits, saying, “Thus far, and no farther.” I can trust them not to offer the reluctant obedience of a doubtful faith, but to be as glad and merry as it is possible.’”

Herbert also said in his poem,

True beauty dwells on high: ours is a flame
But borrowed thence to light us thither.

I know from Priscilla’s bravery and loyalty to God, and her peace in the face of these ominous new symptoms, that her way was being lit by a torch of the type Herbert describes, one lent to her from heaven to show the way there.

AUDIO VERSION

 

“Yesterday night was our last belt transfer,” Priscilla announced on the morning after Easter.  Her legs had been steadily losing strength, to the point where I could barely lift her off the wheelchair.  (“I thought I was picking you up,” I’d admitted,“but I can see you were helping a lot with your legs.”)  On Easter evening, without leg support, the belt transfer we did to get her into bed aggravated her back so badly that it twitched painfully all night.  For every transfer from now on, we’d have to use a Hoyer lift. (This video shows how one works.)

We’d just crossed another threshold into a deeper level of disability.  But once again, God demonstrated that He was traveling with us by sending special mercies to help us and encourage us along the way.

The first of these mercies had been to get us a lift that would work in our home.  The model we were originally given was too wide to fit through our bathroom door, so it wouldn’t get Priscilla in and out of her shower chair.  It also had no wheel locks.  (A Hoyer lift is designed to be self-balancing—it moves back and forth to adjust to the patient’s changing center of gravity—so most of the time you want the wheels to move freely.  But there are some times when you do need to lock them.)  Finally, this model couldn’t reach all the way down to the floor to pick Priscilla up if she fell (as was necessary on a couple of later occasions), and it also couldn’t reach high enough to place her on our bed.

We identified another model that had none of these drawbacks, but the medical equipment company our insurance ordinarily worked with didn’t carry it.  Our home health care physical therapist shared our concerns about the first model and made just the suggestion we needed.  She told Priscilla to try asking her doctor to prescribe the one that would work, and he agreed.  As a result, after a flurry of phone calls, our insurance approved using a different equipment company and the new model was delivered.

This was in mid-March.  We knew we couldn’t wait until the lift was our only option before learning how to use it, so I started practicing.  One Sunday after church, the student Priscilla had helped to find a car came over to help her with her “new vehicle.”  Taking turns being the patient and the attendant, he and I practiced Hoyer lift transfers in various situations.

That same Sunday afternoon, because we weren’t able to attend church any more, our worship leader and his wife had already arranged to come and sing some songs for Priscilla.  When they saw us practicing with the lift, the wife told us that her mother used to use one all the time as a special education aide in schools, and that she’d ask her if she would coach us.  The mother agreed and came over a few days later.

She provided the solution, obvious in retrospect, to a problem we hadn’t been able to solve.  Priscilla kept slipping out of the sling, even though we weren’t doing anything different with her than for the student or me.  (Fortunately we’d started by trying to lift her up from the bed, so at least she had a soft landing.)  “I think the sling’s too big,” the mother said.  Of course.  The student and I were “large,” while Priscilla was “medium,” and they’d given us a large sling.  As soon as we swapped this for a medium one, the lift worked just fine for her in every kind of transfer.

The mother also recommended making linings for the legs of the sling, to avoid soreness and chafing.  Priscilla asked a neighbor (the one who’d been so helpful to us during the power outage) whether she knew anyone in our area who was a seamstress.  “Yes,” she replied, “and you know her, too.”  She’d introduced us to a woman from her Bible study who’d already been sitting with Priscilla when I needed to run errands.  But the fact that she was a seamstress, and even taught sewing courses, had never come up.  Now she took measurements of the sling legs and returned later that same day with fleece sleeves for them!

After this Priscilla and I did one or two lift transfers each day, in various situations, to gain experience for when we’d need to do them all the time.  As a result, and thanks as well to the help God had sent, by the morning after Easter we were ready to go “all Hoyer.”

We would now do at least six lifts per day:  in and out of bed, morning and night; in and out of the bathroom; and in and out of the hospital bed, where Priscilla rested in the afternoons.  When she took a shower there were two more transfers, in and out of the Shower Buddy.  Since each lift took 10-15 minutes even if everything went right (longer otherwise!), we were now spending 1-2 hours each day doing transfers.  But the alternative was for Priscilla to be confined to bed, rather than leading a full life in her own home, and neither one of us was willing for that to happen.  So it was worthwhile time.

There were still two more problems to solve.  First, how would Priscilla get dressed, since she could no longer stand up, even briefly with assistance? As I explained in an earlier post, Priscilla was an accomplished seamstress herself, and she and her newly discovered seamstress friend figured out together how to alter her dresses so that I could put them on her in the morning after she’d been placed in her wheelchair.

The second problem was the challenge of correctly maneuvering three pieces of equipment—Hoyer lift, Shower Buddy, and wheelchair (first manual, then electric)—in the narrow confines of our home.  For example, the seemingly most obvious sequence for transferring Priscilla from the wheelchair into the Shower Buddy ended up with the wheelchair impossibly behind the Hoyer lift, rather than in front of it, on the way back out of the shower.  We had to work out protocols for each maneuver to avoid dead ends like this.

Some years earlier I’d gotten hooked on the Rush Hour puzzles that require you to move cars and trucks around in a tight space to free a little red car from the gridlock.  I honestly believe that working on those puzzles helped me visualize solutions for situations like the one I just described.  (For that one, we just had to remember to move the wheelchair around to the foot of the bed, once Priscilla was out of it, and not leave it at the side of the bed.)

I look back with amazement and gratitude on the fact that while we did literally thousands of Hoyer lifts over a two-year period (six per day adds up fast!), we never had an accident in which either one of us was injured.  The only imperfection in our model’s design was that the release knob was on the front of the vertical post.  There it could be accidentally knocked open, causing Priscilla to plummet towards the floor. On two occasions the knob bumped against the rail of the hospital bed and released, but she was already over the bed and landed softly.  On a couple of other occasions, Priscilla’s weight shifted unexpectedly so that her foot kicked the knob loose.  But both of those times she was above her electric wheelchair, which had a padded air cushion seat.  So she wasn’t hurt, but she did suggest, “Let’s try not to do that again.”