“What purpose does it all serve?”

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.

Controls much like these were added to the back of Priscilla's wheelchair so I could drive it for her.
Controls like these were added to the back of Priscilla’s wheelchair so I could drive it for her. From top to bottom they are for battery level, power, horn, mode [drive vs. position], and gear. The joystick controls speed, direction, and seat angle.
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.

“In every moment of inmost need, something occurs for my comfort”

AUDIO VERSION

 

“One of my happy opportunities for discovering the goodness that is treasured up for us all lies in watching quietly, as the days and nights slip past, how in every moment of inmost need something, perhaps quite a little thing, occurs for my comfort.”  
– Amy Carmichael, Rose From Brier

Now that Priscilla could barely use her right hand any more, we took the extra leaves out of our dining room table to make it a small circular shape. She reclined in her wheelchair parallel to one of the places, and I sat just off her right shoulder at the next place around the table. For a while she could still grasp a fork or a spoon, and this seating arrangement allowed me to help guide these up to her mouth, so she could do “as much as possible for as long as possible” to feed herself.

But the day came when she realized that she could no longer even hold onto a spoon or fork, and that I would simply have to feed her.  She sat sadly and silently at the table, trying to process this reality.  She was moving yet farther into helplessness and dependence.  I could tell that it was a dignity issue for her.

But at that very moment, a pair of cardinals flew onto our back deck.  As we watched through the glass doors, the male perched on the bird feeder, while the female stayed a short distance away on the deck rail.  The male gathered seeds in his beak, hopped over to the female, and put them in her beak.  “Well,” Priscilla said, “if Mrs. Cardinal can let her husband feed her, I can let my husband feed me.”  The scene had enabled her to break through the barrier and find what Amy Carmichael calls “peace in acceptance” of her new situation.

It was a tradition for me to buy Priscilla annuals for her deck flower boxes as a Mother’s Day present.  I didn’t do this in 2014 because, frankly, we both though she would die before the flowers did.  But when she kept outliving estimates of her life expectancy (people eventually stopped offering these), she finally said, “Let’s just make the best of it,” meaning life with ALS.  So for Mother’s Day 2015, I picked up some red, white, and coral geraniums and planted them in the flower boxes where Priscilla could enjoy them each day.  The weather was unseasonably warm that fall, and by covering the flowers on the first few frosty nights, we were able to enjoy these well into November.

But that was still outside the window.  I thought it would also be nice for Priscilla to have some flowers she could see and smell from up close.  She loved her peonies, but as they were planted in the front gardens, she never got to see them any more.  So I cut some and put them in a vase so she could enjoy their beautiful shape and color and their rich fragrance, which filled our house.

Unfortunately, this first bunch turned out to be the last one available from our gardens, as an unusually warm and wet June made the peonies bloom and fade much earlier than normal.  But when this bouquet was just about past, a friend who knew nothing about any of this called and said she had something she’d like to bring over for Priscilla.  It was large and beautiful arrangement of peonies, in various shades, from her own garden!  We concluded that God wanted to help us “make the best of it,” too.

One evening in the summer of 2015, as I was looking ahead to the next day, I realized that I needed to make a new batch of muffins for our breakfasts.  (Muffins from the store or bakery tended to be too high in fat and sugar, and they were also more sticky and could block Priscilla’s throat.)  As by then I was fighting fatigue all the time, I asked myself, “Where will I ever find the strength to make those muffins?”  But that same evening I got an email from some good friends in Ontario (the couple whose family had winterized our gardens in one weekend) saying that they’d be traveling right past our house the next morning, and that they’d made a batch of our favorite muffins that they’d like to drop off with us!  They were able to visit with us for a few minutes and we had a grand time laughing and joking together—a great time of  encouragement. God had sent us exactly what we needed, when we needed it, by the hands of good friends.

Priscilla had to state her name and date of birth, including the year, for identity verification every time health workers gave her medication.  Visitors sometimes overheard this, so it became no secret that she was going to turn 60 in the summer of 2015.  Our church made her a big birthday card, with everyone’s signatures and good wishes on the inside, and an original watercolor by her artist friend on the front.  She also received cards, flowers, fruit, and balloons from many other well-wishers on this occasion.

A few days before her birthday, we had a special visitor.  For the first and only time, a male rose-breasted grosbeak came to our bird feeder.  This was just after we’d sat down to breakfast, so we could see him clearly right outside the glass door.  This gorgeous large bird perched there contentedly for over an hour.  Priscilla was transfixed with wonder and admiration, moved nearly to tears by the beauty of the creature.

A day or two before this, somewhat playfully, but also with a bit of curiosity, I’d asked God whether He’d thought about what He wanted to give Priscilla for her 60th birthday.  Clearly He had.

Rose-breasted grosbeak. Photograph copyright Gary Tyson. Taken in Tioga County, Pennsylvania, June 2010.

“This is what are lives are like these days.  There are touches of divine grace all along our path, which is also marked by struggles and tears, exhausting activities, setbacks and inconvenient necessary adjustments.  So moment by moment we lean on God, who has promised to hold us in his righteous right hand and help us. Please pray that we would be patient and understanding as we face our respective individual challenges each day.  And please pray that the eyes of our hearts would always be open to recognize God’s hand in meeting our every need.”
— From an email to our Dear Praying Friends, June 2015.

A Friend is Someone Who Helps You Hold Your Head High

AUDIO VERSION

 

In the summer of 2015, Priscilla’s neck muscles weakened to the point where she could no longer hold her head up on her own.  She now needed what’s known as an “all-encompassing headrest.” This would keep her head from painfully and dangerously falling forward or to the side while she was sitting in her wheelchair, or to the back when she was being transferred in or out.  We worked with our mobility specialist to determine what model would be best for her.

An all-encompassing headrest, the same model we wanted for Priscilla.
An all-encompassing headrest, the model we wanted for Priscilla.

Our indomitable case manager was once again able to help expedite the process for us. Thanks to her efforts, our medical insurance approved coverage the same day our doctor faxed them a prescription. But when our mobility specialist received the headrest from the manufacturer, it had no hardware to attach it to the wheelchair.  So he would have to see whether he could find some that would work.

Around this same time, after 14 months of continuous use, the battery for Priscilla’s power wheelchair stopped holding its charge all day. We recharged it in the afternoons while she was resting in her “day bed,” but we knew it would soon stop working entirely. Then she would either be stranded in bed, if we knew before she got up that the battery was gone, or else stranded out of bed, because the power “tilt” feature was indispensable for positioning a sling under her to transfer her in and out of the wheelchair.

Under other circumstances, we would have had to bring or send the chair for servicing to a company in a different city, forcing Priscilla to stay in bed for who knew how many days. But we asked our mobility specialist whether he might be able to install a new battery when he brought over the headrest, once he found some hardware for it. This was outside his usual responsibilities, but he was willing to help us out by doing this. The only catch was, the supply company would have to get insurance approval for the battery.

Somewhat desperately, since Priscilla was facing a real risk of injury without the new headrest and immobility without a new battery, we emailed our Dear Praying Friends and asked them to pray with us that the specialist would be able to find some headrest hardware, and that the company would apply for and receive insurance approval for the battery as quickly as possible.  This was on a Saturday afternoon.  We had no idea how long we might have to wait for these things to happen.

But on Monday morning, the specialist called to ask whether he could come with the headrest and the battery in one hour.  He explained that he’d been able to pull some perfectly matching headrest hardware off a demonstration model wheelchair that his company had in its shop. They’d also approved him delivering and installing the new battery even while they were still waiting for insurance approval.  Such a thing had never happened to us before, in our extensive experience with the medical system.

And so Priscilla got an all-encompassing headrest for her wheelchair that made things much safer for her, as well as a new battery that enabled us to use the chair all day long without being concerned about running out of power.  We reported this news to our Dear Praying Friends, and one of them suggested that perhaps the headrest was delayed by the missing hardware so that the the mobility specialist could bring the battery along with it, saving us the trouble of sending the chair out.  This may well have been the case.

The new headrest provided the support Priscilla needed when she was in the wheelchair.  But because of the weakness in her neck muscles, her head was also at risk of snapping dangerously from side to side when I rolled her back and forth in bed to put the sling under her or to remove it, or when I was transferring her between the wheelchair and bed (when she no longer had the support of the headrest that was attached to the wheelchair).  And so at the same time we started looking into headrests, we also began to look for a device that would protect Priscilla under these other circumstances.

Our nurse practitioner had previously worked in a surgical unit and when we asked her about this, she knew just what to get:  a two-piece collar that was held together with Velcro.  I could slide the back behind Priscilla’s neck, whether she was in bed or the wheelchair, and then attach the front tightly so that she’d be safe.

This device, too, was delayed, not by missing hardware, but by inaction on the part of a different medical supply company that agreed to send us one.  Though we prodded the company frequently, a month went by without anything being delivered.  When our nurse practitioner found out about this, she told us she was “going on the warpath.”  The collar arrived within days.

We saw these new assistive devices as more “friends” for Priscilla that would enable her to keep doing what she wanted to do. But clearly they weren’t the only friends who were helping her hold her head high.  We’d seen once again through these experiences that we were surrounded by people who loved her, prayed for her, and did everything they could to help her.  We made a point of counting our blessings at bedtime, and there were always plenty to count.

The style of collar Priscilla needed to wear during transfers.
The style of collar Priscilla needed to wear during transfers.

Respiratory Failure

AUDIO VERSION

 

When our nurse practitioner told us that because she wasn’t yet hospice-certified, her supervisor didn’t want her to manage Priscilla’s “end of life” care, this made me curious about exactly what that involved for an ALS patient. A search online turned up a very helpful article by Dr. Nigel Sykes, medical director of St. Christopher’s Hospice in London, appropriately entitled “End-of-life Care in ALS.”

Dr. Sykes explained that “most people with ALS die of respiratory failure” (meaning breathing weakness so severe that the body becomes unable to replace carbon dioxide with fresh oxygen in the bloodstream) and that “consequently, the trajectory of decline in respiratory function is the key to anticipating the final stage of the illness.” He warned that “the onset of this stage . . . is often rapid and ALS is a cause of sudden death.” One retrospective study of ALS patients showed that nearly 60% of them had died “within 24 hours of a change in their condition first being noted.” As a result, “the caring team” must prepare patients’ families for “what may appear to be a catastrophically sudden demise.” “All right,” I told myself, “now I know what to watch for, and I’ll need to be mentally and emotionally prepared for the end to come fast.”

In Priscilla’s case, a “change in the patient’s condition” was first noted in July 2015. She then did die of respiratory failure, but not within the next 24 hours. It took six months.

At first she was short of breath for certain periods during the day, but soon this was the case all the time and she needed to recline back in her wheelchair to keep the weight of her ribs off her lungs in order to breathe. When her nurse practitioner came for her next visit, she noticed the change immediately. “Are you experiencing shortness of breath?” she asked.  “Yes,” Priscilla replied, “but not to the extent that I want to go into hospice.” She was determined to stay at home for as long as possible, and the nurse practitioner was kindly willing to abide by her wishes and not force the matter.  As dire as this was, it  wasn’t quite “air panic.”

Still, Priscilla would spend all day just trying to catch her breath. It required 20 or more gasps to get that “caught up” feeling, and she would soon run out of breath again. Imagine running as fast as you can for as long as you can, pushing to the limits of your lung capacity until you collapse on the ground, gasping for breath. That’s how short of breath Priscilla felt all the time.

finish

Yet still she hung on to life.  These were horrible days. I can’t put it any other way. Yet God’s mercies to us continued.  In fact, some of the most direct assurances we had of God’s continuing love and presence came during this most desperate part of our journey.

Friends who lived in other parts of the world started appearing in my dreams at night, right around the time when they would be getting up and remembering us in their morning prayers.  Friends in the United States and Canada showed up in my dreams, too, and these were people who’d told us that they prayed for us in the night if they ever woke up. Some of them reported waking up regularly at specific times, such as 3:00 a.m.  I believe God was reassuring me by showing me in my dreams that He had us covered by prayer around the clock.

One night in a dream I visited with another friend who was already in heaven. I’d known him on earth as a godly older gentleman.  It eventually dawned on me that he’d been a widower, so he knew just what I was going through. I truly believe that God gave him a special assignment to pray for me in those days, because he could do so with compassionate understanding. These dreams encouraged me to recognize that praying friends on earth surrounded us in this deep trial with their love and care, remembering us continually before God along with a throng of those who were already in God’s presence.  This awareness gave us the strength and hope we needed to carry on.

Priscilla knew she was actively dying. She’d heard of other Christians, in their final days, getting encouraging visitations from departed loved ones, or from heavenly beings. But nothing of the kind had been happening for her. “Where are the saints and angels?” she asked, expectations disappointed. “Where’s Jesus by the bedside?”

Her gasping for breath, amplified by the VPAP, became so loud that it began to keep me awake at night. I moved, very reluctantly, down the hall to sleep in the hospital bed, just so that I’d have enough energy to make it through the next day. But my ears were attuned to the sound of her voice, so that in my sleep I could still hear her call me, even faintly with a breathing mask over her face, whenever she needed help.

One night she called me in to restore the seal of the mask, which had started noisily leaking pressurized air. After I fixed it, she told me, “I liked what you did when you came in before, how you put your hand on mine and left it there till I fell back to sleep.” “This is the first time I’ve been in tonight,” I responded. “No,” she insisted, “you were here before. I liked it so much that I even took the mask off to call you back, but you didn’t hear me.”

“How did you do that?” I asked, since she no longer had the use of her hands. “Oh,” she said. “Then maybe it was a dream.” But then she thought about it some more.  “No,” she insisted, “it couldn’t have been a dream. It was too vivid, too real. I could feel the pressure on my hand.”

“You’ve made this a happy time.”

AUDIO VERSION

 

Our niece Ashley, Priscilla’s sister’s daughter, had been talking with us on and off about coming to help with her care. At the end of the summer of 2015, she offered very definitely to come.  We felt that the time was right for us to accept.  Just a couple of days later, the young woman who’d been helping us for nearly a year with laundry, vacuuming, cleaning, dusting, etc. told us that she was going to take a full-time job and would no longer be able to work for us.  God knew what help we needed and put it on Ashley’s heart to offer to come at just the right time.

She arrived in mid-September and immediately was a huge blessing to us. She jumped right in and picked up the work our former helper had been doing.  She also took over many tasks that I’d been doing, such as serving meals. This allowed me to concentrate more on Priscilla’s direct care and to conserve my energy a bit.

One day shortly after she arrived, we realized that she’d already finished all the household tasks I would otherwise have had to do.  We actually had some free time, so we set up the portable ramp and drove Priscilla out to our back patio to spend two glorious hours out there on a warm, sunny afternoon.  It was only the third time she’d been able to go outside all year.

Ashley added many bright touches to our lives. She’d studied floral design and  became our “in-house florist,” creating bouquets from the gardens and also caring for arrangements that others sent. She played upbeat music in the background as she did her housework, and she got us hooked on the current season of a singing competition. We’d watch episodes over the Internet, using a laptop computer perched on Priscilla’s knees, and then offer our opinions on the competitors as amateur judges.

Ashley learned some of the direct care tasks herself so that she could do them if needed.  She quickly learned to use the wheelchair attendant controls so that either one of us could help Priscilla get around the house. Priscilla eventually needed oxygen all the time, so when I moved her from place to place within the house, Ashley would pick up the long cord that led to the compressor and keep it out from under the wheelchair.  She also learned how to do the upper body range-of-motion exercises. We’d do them together, standing on either side of Priscilla, and this took less than half the time it took me alone.

Though Priscilla’s condition was downright scary at times, with prolonged episodes of desperate breathlessness, Ashley always stayed bravely at her post.  She kept the house running and never “freaked out.” She knew we’d call her if we needed her to help with any of these episodes, and that otherwise we needed her to keep doing what she was doing.

By mid-October, Priscilla was no longer able to chew and swallow solid food.  Ashley, it turned out, was a gifted and adventuresome cook, and she found a variety of creamed soup recipes on the Internet and adapted them for Priscilla’s needs. We hadn’t known we’d need an in-house chef to prepare foods for a specialty diet, but this was one more way, we realized, in which Ashley had come at just the right time. We asked her to create meals that we could all still eat together.  As we explained in an email to our Dear Praying Friends, “Jesus said, ‘Life is more than food.’  We find that much of the ‘more than’ comes from sharing the same food at the same table. It’s our goal to keep doing that for as long as possible.”

When Ashley first agreed to come, we arranged for her to go home for two weeks to spend Christmas with her family.  She left on December 22 and we expected her back on January 5. We didn’t realize that she’d actually completed her work with us. She’d been an invaluable help to us in so many ways, and beyond that, she’d been a cheerful and encouraging companion throughout those three months. Priscilla said to her when she left, “You’ve made this a happy time.”  She told many a friend while she was with us, “Ashley has been an angel sent from God.”

Priscilla with our niece Ashley.
Priscilla with our niece Ashley.

 

Signs

AUDIO VERSION

 

One day shortly after our niece Ashley went home for Christmas, Priscilla asked me, “Is the oxygen compressor on?” She was wearing a cannula that was connected to the compressor by a hose, but she didn’t feel as if she was getting any oxygen through it.  But the compressor was on, and oxygen was flowing through the hose.  It’s just that her lungs had become so weak that even with oxygen flowing freely to them, she felt as if she were breathing stale air.

She was awakened several times during the next few nights by the awareness that she was out of air, even though she was using the VPAP.  She had to breathe as deeply as she could to get back to sleep.  On one of those nights, I had a dream in which I looked out the window and told her, “There’s a dark limousine waiting for you.” “I know,” she replied. “Wait,” I said, “it’s going away.” “There will be another,” she responded. In retrospect, I wonder whether I sensed subconsciously, even in my sleep, that she was having these near-death experiences.

But then I started having new kinds of dreams. For some time I’d been having ones like the one about the limousine, in which the two of us were together but a separation was imminent. Now I started having dreams in which we were already apart. In one of them, we were at a picnic, but Priscilla was at a different table, bathed in light.  She was smiling, and she was surrounded by friends from different parts of our lives. For her part, Priscilla told me about a dream she had in which she was walking around among people whose garments glowed with iridescent colors.  “I’ve never dreamed anything like that before!” she said excitedly.

One morning after I’d transferred her out of bed, she had to lean back in the wheelchair for quite some time to catch her breath. I was watching her cautiously to make sure she was all right, and suddenly it struck me that I’d never seen her look quite so beautiful before. She’d always been considered a beautiful woman. One of her “Williams kids” wrote her a letter of support and appreciation when he learned of her illness.  In it, he recalled her beauty and shared what he thought was its secret: “You had a glow about you that seemed to be not just physical but spiritual.” That was even more true now. Though she was barely still alive, she was glowing with a celestial radiance.

A friend had written her a letter a little before this in which she’d compared her to the autumn leaves that were “most radiant, breath-taking, and inspiring just before they leave the tree.” She told her, “You look stunningly beautiful in your final phase of life here on earth.”  I’d already been struck by something similar myself, but everything I’d seen to this point was just a glimmer compared with what appeared on this late December morning. The heavenly glory was breaking through.

Certainly when seen in retrospect, all of these things—the critical breathing problems, the dreams, the unearthly beauty—were signs that the end was near. But the end of my strength was also near. I’d started pleading, “Lord, please don’t let my strength fail before Priscilla goes home.” It wasn’t at all clear which one of us would last longer.

Another of the photos of autumn leaves that friends sent us.
Another of the photos of autumn leaves that friends sent us, this one with a turning in the road.

“We need to get you into the hands of people who can take care of you.”

AUDIO VERSION

 

When our niece Ashley went home for Christmas, she left us well enough supplied with soups for our suppers and fruit salad and baked goods for our breakfasts that we could make it through those two weeks without me having to cook.  She also told me, “Don’t worry about vacuuming or cleaning. I’ll catch up on those when I get back.”  Even so, without her help, my work load increased to the point where it soon consumed what little  energy I had left.  I had to do ROMs by myself, for example, and I had to add things like laundry and dishes back to my to-do list.

More significantly, Priscilla’s caregiving needs had expanded considerably over the previous three months.  We just hadn’t realized it because we were getting so much help with other things.  She now needed to have her throat suctioned throughout the day to prevent choking.  Without Ashley to manage the oxygen cord, I’d have to disconnect it to get Priscilla from one room to another.  I could move her the length of the house in about 90 seconds and reconnect her, but by then she’d have nearly passed out and it took time and effort to get her stabilized again.

I’d already been teetering on the brink of exhaustion, and the extra work pushed me over the edge.  On December 26, Priscilla had to call me repeatedly for suction in the night.  I barely got any sleep and that finished me off.  I had no strength left to care for her at home.  We were no longer a patient and a caregiver, we were two patients, one with ALS and one with exhaustion.  “I’m so sorry,” I told her through tears, “I’m so sorry.”  “Don’t apologize,” she reassured me. “I’m amazed you lasted as long as you did.”

We made one last effort to get my strength back.  A neighbor kindly came and helped with housework while I rested.  But as soon as I tried to resume something like a regular schedule, Priscilla saw it was draining me completely and told me, “You don’t look good at all!”  I had to admit that I didn’t feel good at all.  I lay down next to her in the bed and said, “We need to get you into the hands of people who can take care of you as soon as possible.”  That meant residential hospice.

It was the middle of the week between Christmas and New Year’s.  We didn’t know whether the people we needed to talk to were even working.  But we started with our home care nurse.  She was working that day, and she had an hour and a half to give us starting at 1:30.  We wanted our neighbor to be sit in on this conversation, and she was free to come because it was winter break at the school where her husband worked, and he could watch their kids.  We wanted another friend, our pastor’s wife, to be part of the conference, too, and she was already scheduled to come and sit with Priscilla that afternoon.

Just as these three women were walking in the door at 1:30, the phone rang.  It was our insurance case manager.  She had no idea that a meeting  was just beginning that vitally required her participation, since insurance pre-approval was required for admission to hospice.  She began, “I hadn’t talked to you guys for a while, so I’m just calling to see how you’re doing.”  I explained how timely her phone call was, and she said, “Priscilla needs pre-approval for hospice.  I’ll get right on it!”

We decided to try to get Priscilla admitted as a resident of the same hospice whose home program she’d been in at the start of the year.  Getting someone into hospice within a short time frame is unusual.  To set up the home program, we’d had to meet first with a social worker, then we’d had a separate meeting with an intake nurse, and so forth.  It was a good thing we’d started the process late in 2014 in order to get her into the program by early 2015.  But because Priscilla was already in their system, now they simply re-activated her file, transferred her from home care to residential care—they had a room available for her—and that part was settled.

She still needed two more things.  The first was the insurance pre-approval.  Our case manager was able to arrange for that within a couple of hours.  We also needed a doctor’s certificate.  The person we were working with at the hospice told me, “I’ve faxed it over to them to sign, and now we’re just waiting.”  I asked, “Would it be okay if I phoned the doctor’s office?”  “Sure,” she said, “see what you can do.”

Our doctor was in a large and busy practice, so that when you called, you got the “phone tree.”  (“Please listen to our options carefully . . . if you know your party’s extension, you may dial it at any time,” etc.)  I listened to all the options, but I didn’t like any of them, so I hung up in despair.  But then I said, “I’ve got to do something.”  So I called back.  A receptionist picked up.

I explained about the doctor’s certificate.  She went to look for it and came back to the phone.  “I have here it in my hands,” she said, and then explained, “The doctor is working today, but he’s in his office with the door closed.  I’m not supposed to interrupt him, but I can slip it under the door and hope he signs it.”  I explained how desperate our situation was.  She listened very sympathetically and then said, “I’ll knock on his door and ask him to sign it.”  She returned a couple of minutes later. “He’s signed it,” she said, “and we’ve faxed it back to the hospice.”  Then she added, “We want you to know that our thoughts and prayers are with you.”

It was about 4:00 by this point.  The hospice told me, “She’s in, but we don’t think you’d like what we’d be able to do for her if she came today.  It’s so late that we’d have to bring her over by ambulance, and the room wouldn’t be ready.  But we can come get her tomorrow morning.”

So we had to make it through one more night.  If we’d had any doubt—which we didn’t—that moving Priscilla into residential hospice was what we needed to do, that night would have dispelled it.  She had to have her throat suctioned repeatedly and I got practically no sleep once again. She’d reached the point where she needed round-the-clock care, and no one individual could provide that.

At 11:00 a.m. the next day, which was New Year’s Eve, a hospice representative came to do some final paperwork, and at noon an “ambu-cab” pulled up to our house.  I drove Priscilla down the ramp and over to its lift, the driver raised her up, we rolled her in, and she was strapped down for a safe ride.

A wheelchair secured for transportation with tie-downs.

We were able to do this because her wheelchair had “tie-downs.”  These are large, flat metal rings that are attached to the four corners of a wheelchair to allow for this kind of transportation.  A year and a half earlier, when the mobility specialist was fitting Priscilla out for the wheelchair and going over the different features she might need, he asked, “Do you need tie-downs?”  “No,” we replied, “she plans to use the chair only in the house and maybe the neighborhood.  She’s not going to ride anywhere in it.  We don’t need tie-downs.” He said, “I’m going to give them to you anyway.”  If he hadn’t, she would have had to go by ambulance, and we would have had to figure out some other way to get the chair over to her.  Yet another in the stream of endless mercies.