A New Perspective on Hope

I didn’t think much about the concept of Hope during the ten weeks my dad was sick; rather, my family and I clung to it like a lifeline, as if it was the medicine that we needed to make it through each day and each night.  After he died, whenever I thought about Hope and the way we had had so much of it during those tumultuous weeks, I felt like a kid who’d been lured into a kidnapper’s vehicle through promises of puppies and candy.  I felt so incredibly disheartened and disappointed in myself for having had such complete belief that my dad (and thus my family) was going to beat the odds. Afterwards, after the rug had been pulled out from under us, I felt like I should have at least suspected that it might have been about to happen.

Here I am three years from the month in which my dad was diagnosed, still shocked and confused that the whole thing happened.  One thing that has changed for me lately though is my view on Hope:

A child I know was recently diagnosed with cancer.  His mom, a good friend of mine, and I have been talking about the injustice of it all, her fresh shock and fury easily unearthing some of mine.  I have felt especially at a loss as to what to say to her since her son’s diagnosis, mainly because I know how empty certain standard platitudes can sound to someone who is on the inside of the tragedy and who is struggling to survive in the midst of such unbelievable turmoil.  “Hang in there”??  What else would she do?  “Be strong"??  As in, don’t cry – or don’t run away?  “Let me know what you need”??  Maybe she can work on making a list and then call all of us to delegate in her “spare” time.  And then there’s the thing that I thought to be the worst form of banality when my dad was sick: “I know just what you’re going through.”  I’ve said it before, and I’ll say it again: that statement will never be true for any two people, even if those individuals are in the same family, are taking care of someone with the same type of cancer, or have some other type of parallel.  It’s always different.  

I did come across a quote that I thought might be something to consider as other words continued to fail me, though:

I came across a story about a child with cancer that was posted on a blog a few weeks ago with respect to Childhood Cancer Awareness Month in September, and some of the words from that story stuck with me: every family battling cancer needs hope.  I like the way the author used the term "family" in that statement as the battle is fought by entire families, and the truth of her words really hit home for me.  People need Hope, especially in the midst of the most difficult things they must endure, like the catastrophic illness of a loved one. That Hope can be for varying things depending on the circumstances - Hope for a cure, for comfort over pain, for more time together, for a solid treatment plan, for a trustworthy medical team, whatever is chosen by each person and by each family.  Sometimes that Hope is nothing more than the knot in the end of the rope that we've tied in desperation and to which we cling so fiercely.  Hope has such value, though, as it is what keeps us from giving in or giving up; it's not that we're heroic or tough or even smart and that's why we keep going in the midst of tragedy - it's that we have to believe so that we are able to persevere, to make it to the next corner, where there just may be something that will change the course of things.  It's stubbornness, it's strategy for survival, and it's love; it's what we do because it's sometimes all that we can do.

In that light, Hope seems brilliant instead of foolish to me, and, for that change in perspective, I am grateful.

A Ticket Straight to Hell

In March of 2012, just over a year after my dad had died after being treated with Avastin, it was reported in the news that the company that sells the drug in the U.S. was being investigated for possible distribution of counterfeit product.

I knew it didn't matter for my family, really, for a couple of reasons, not the least of which was that Dad was gone and nothing could ever bring him back.  The other reason - and the one thing that kept me from going completely ape-shit about the possibility of my dad having been given a fake drug as part of the treatment regiment he received after his brain cancer diagnosis - because the MRI he had when he was admitted the second time to the hospital had shown good early results of the treatment (decreased vascularization to the tumor site) which could not have been the case had he gotten the fake stuff.  

A combination of what I guess was curiosity and grief and empathy for anyone else who might have gotten a bad dose of the drug still got to me after I read the reports; all I could think about what what a TICKET STRAIGHT TO HELL that kind of deception must be, if indeed the claims were true.

After a couple of days, I decided to call the Avastin manufacturer Genetech, and in doing so I ended up being connected to a very nice representative who said that - so far - the fake "lots of product" had only turned up in California, Texas, and Illinois and that all of those "were acquired through unapproved means."  When I asked what that meant, he said that the patients who'd gotten the counterfeit Avastin had either acquired it through an unapproved source like through mail-order or for unauthorized treatments, possibly off-label uses, again none of which apply to Dad's case.  

When I told him why I was interested in finding out about the validity of the claims, the rep asked about Dad's case, which, as you can tell, I find therapeutic to discuss - and he took an obvious interest in the medical and in the personal details of Dad's story.  He sprinkled in a few kind comments like "Your dad sounds like an amazing man" [I caught the present-tense verb in that statement and really appreciated it] and "I bet that was really hard" to the conversation, but mostly over the course of our half-hour conversation he just asked open-ended questions and listened as I talked.  When I told him that I was concerned that Dad's case would not be included in the statistics provided to his company by Duke University (where Dad was put on the protocol from the clinical trial) on the outcome of patients with brain cancer who were treated with Avastin (more on that later ... ), the rep said that he was taking notes as we talked about Dad's case and that he would cross-reference them to the statistics provided by Duke for comparison.

The rep was nice, and, while of course that didn't solve any of my problems or bring my dad back, it helped just having him listen and seem to take an interest in what had happened.  As we ended the conversation and I hung up the phone, I thought about how big pharma companies and even just phone reps in general usually get a bad rep - and oftentimes they deserve it, but - just like I saw my dad do countless times - this particular rep had taken the time to show kindness to a stranger for no particular reason at all, and I really appreciated the gesture.

Trying to Fix Grief

I'm a "fixer;" I like to fix things.  Maybe that's one reason I'm finding the grief process to be so tough - because there's no righting this situation.

Not that I haven't tried.  I went through with three different counselors in search of a remedy not long after Dad went on ahead, each of whom didn't specifically deal with grief; I liked all of them at first precisely because they seemed to have a linear approach to how they laid out their sessions - my impression was that they were "fixers" too, and that seemed like a good thing to me at the time. 

About halfway through my second session with the first counselor, she asked me how I defined myself after the loss of my father.  What the hell does she want me to say? I thought, and I felt as if I had been sucker punched.  I felt like I was afloat in a sea of sadness on my best days during that time, and on many of the other days I felt like I was drowning.  How do I define myself???  I had absolutely no idea, and I knew it would be a long time before I could withstand even the thought of redefining myself without my dad here with me in this world. And so, without answering, I thanked her for her time and walked out the door.

Two sessions in with the second counselor, she leaned back in her chair, put each of her fingers together with each of the matching fingers on the opposite hand so that it looked like she was about to start doing the hand-gesture that goes along with "Itsy Bitsy Spider," and said, "I think what you need to do is to realize that you were lucky to have been given the time to say goodbye to your father."  Then she just sat there looking at me expectantly, as if she thought that some giant epiphany was going to come to me in that moment.  Anyone who has ever been through the death of a loved one after that person has had to suffer through a terminal illness would not find comfort in that statement, particularly at that point in the grief process.  Without a word, I stood up and walked out.

I waited a couple of weeks and then, mainly because I was concerned that I still wasn't sleeping much at all, I tried again.  About 45 minutes into the first session with Number 3, I got "It's already been six weeks since your loss.  You should ask your primary care physician to write you a prescription for an anti-depressant."  The message I took from that was that I should have already moved on, that six weeks was plenty of time to have moved through the grief, and that I should get over it, and that's really the last thing I wanted to hear.  Strike three.

Luckily, through a friend of a friend, I found my way to a grief counselor about six weeks after that, and that was a different ball game all together.  That made me realize the lack of training and knowledge in the area of grief that the other three had.  The grief counselor let me talk about my experience and my feelings; she had posters on the walls of her office that said things like, "To live in the hearts we leave behind is not to die" and, my favorite: "Every grief needs a thousand tellings."  

More than one physician, when I've gone in for a check-up or for a minor physical complaint and then when I've brought up the subject of my struggle to try to figure out how to cope with the loss of my father, has offered to prescribe medication as a solution for grief.   As society does so often these days, these doctors have seen grief as a sickness, as an imperfection, as something that needs to be "gotten over."  I didn't want to be on medicine.  I know it's something that's helpful or even necessary for some people, and I told myself that I wouldn't completely rule it out as an option for myself on down the road -  but I instinctively realized that to numb the feelings associated with the loss of such an important person in my life at that point would not only put the feelings associated with grief on hold temporarily but also would likely numb me to the goodness in my life, and I knew that the latter was all that was keeping me going.  As I had learned from my dad, I mustered all the courage I could and forged ahead, for the most part with the belief that someday, somehow I would find a way to make it through.  Because one thing that I've learned about grief is that not only is there not a "quick fix" for all the things that come along with it, but there isn't really a "fix" at all.      

Two Years Ago

Today I am remembering my family's Journey of Hope exactly two years ago, when we took my dad to The Preston Robert Tisch Brain Tumor Center at Duke University Medical Center in search of a treatment - or maybe even a cure - for brain cancer.

After Dad had gotten his first round of chemo and the "Magic Bullet" drug Avastin there, we spent the night in Durham, as we'd been told by the doctors that we had to do after the treatment in case Dad had any side effects after the first round that required medical attention.

We hadn't planned on staying that night originally; we had been told that we could get to Durham on the Monday before Thanksgiving, go to the first day of appointments at Duke on Tuesday, meet with the advisory team of neuro-oncologists on Wednesday morning, and then hit the road to travel the 500 miles back to my parents' house, in time to make it home that night so we could be there for Thanksgiving.  Our Back-up Plan was to drive part of the way back on Wednesday, spending the night at a hotel along the way and then getting up early on Thanksgiving Day to drive the rest of the way home.

But we also hadn't expected for the team to recommend that Dad start treatment there at Duke, right then.  And, since part of the deal for his doing that was that we stay in the area overnight, we agreed to stick around.  While I sat with Dad in the clinic as the medicine dripped into his veins, my mom and my sister Jennifer met with a hospital social worker to go over insurance coverage issues and other things; the staff at the Brain Tumor Center seemed much more well versed on several important matters like that than did the people with whom we had been dealing at the local oncologist's office.  My brother-in-law, Peter, who had taken a red-eye flight from California the night before to be with us in Durham, hastily searched the city for a hotel that had a suite-style room or two adjoining rooms - one of which we needed to be wheelchair accessible - available for that night.  Evidently, the night before Thanksgiving is a big night for hotels in that area, though, and the only hotel with enough available space for all of us to be in close proximity was not set up for handicapped access.  It was what it was, though, and so after a flurry of text messages back and forth between all of us, Peter booked the rooms and drove back to the hospital to pick up Dad and me, as Mom and Jennifer will still in a meeting there.

Once we got to the hotel, we got Dad situated in the wheelchair, and then I pushed him and Peter carried the luggage up to the room.  Dad wanted to sit in an armchair by the window in our room and watch TV ("It's way too early for bed," he said, as much to himself as to anyone.).  Peter went to the vending machine and got Dad a big bag of peanut M&M's and a Diet Coke, which he poured over ice into a styrofoam cup.  He put the goods on the table next to Dad, and then he and I took a look at the set up in the hotel room bathroom; I was very apprehensive about the fact that there were no grab bars (and essentially nothing else for Dad to hold onto) by the toilet, and, to make matters worse, the toilet seat was low, which would make it even harder (and more dangerous) for Dad to get up and down.  Peter and I decided that he would go to a drug store to try to find grab bars that could be installed temporarily; that seemed to be our only option at the time.

In the midst of our conference by the bathroom door, we heard a noise from the bedroom area where Dad was.  We hurried in and saw Dad nonchalantly sitting in the chair watching TV, with most of his drink and the majority of the M&M's spilled all over the floor.  "What happened?" I asked him.  "I didn't try to get up," he responded, which made me think that either he did and didn't want to admit that he couldn't do it, or he had no idea that I was referring to the fact that there was stuff spilled all over the floor next to his chair.  Peter grabbed towels from the bathroom, and, as he and I cleaned up the mess, I noticed that the table where the drink and candy had been was on Dad's left side, the side that was his dominant but in which he had impairment in sensation and strength because of the tumor.  It was evident that he had either accidentally knocked over the stuff on the table by just moving his arm, or he had reached for something on the table and knocked it over, or he had tried to get up out of the chair by pressing down on the only thing around him - the table- and then the table had tipped slightly, causing him to have to sit back down and the stuff on it to spill.   In any case, he seemed to have forgotten that anything had happened.  When he saw us cleaning up the spill, though, he started asking questions: "Did I do that?" and "Where is Vicki [my mom]?" and "When are we going home?" - and - the one that I thought was the most alarming - "Am I going to get chemo today?"  Shit, I thought.  I had been so hopeful over the last few hours as we heard from the Duke team about the benefits of their treatment protocol and then as I sat beside Dad in the Chemo Room watching him get the Magic Bullet treatment.  Now I was just scared, because with him not noticing or not remembering how he'd spilled and then with those questions, it seemed like he was getting worse.

But, as we had been doing during that time, Peter and I exchanged a look of concern, but we held it together and moved on to the next task at hand: while I sat with Dad in the hotel room, Peter drove to pick up my mom and Jennifer at the clinic.  He dropped off my mom back at the hotel and then he and Jennifer went on a quest for the safety rails, which, as seemed to be par for the course for us, turned out to be not nearly as easy as we'd thought it would be.  Traffic was nightmarish, and none of the drug stores in the area had what we needed in stock.  My sister tried to look up medical supply companies on her cell phone as Peter fought the traffic, but cell phone signal was sketchy.  Finally, they found a little hospital supply store that had the rails; they paid for their purchase and made their way back to the hotel.

Once back in the room, Peter and I looked at the directions for installing the grab bars and realized we needed a screwdriver.  He called the front desk and got connected to the hotel maintenance guy, who agreed to let us borrow one.  Peter handily removed the toilet seat, fastened the frame that was connected to the grab bar to the toilet, and replaced the seat.  Good to go.

The sun was just going down by that time, and Dad was already fighting sleep.  Like every night, he talked us into helping him into the bed and then talked about how he wasn't hungry but would try to eat something for supper and how he knew it would make for an odd sleep schedule to go to sleep that early but he was so tired he didn't think he could help it.

We let him sit up in bed watching TV as we came up with a game plan for what to do for supper. Peter volunteered to sit with him while Mom, Jennifer, and I went downstairs to the hotel restaurant, and we said we would bring food back to the room for the two of them.

I remember sitting in the restaurant thinking about just how surreal the whole situation was, from the fact that my dad had brain cancer, to the way his treatment had been started much more quickly than we'd anticipated, to how we'd been directed to stay in the area for an extra night, which meant we wouldn't make it back in time to join in on the Thanksgiving feast with the rest of my large extended family who had been expecting to celebrate with us after our trip.  As we ate, we talked about what a whirlwind the trip had been, how grateful we were that the Duke team seemed to be in our corner, and how hopeful we were that the treatment would help.

After we'd gotten back to the room and Peter and Dad had eaten, Dad announced that he was going to sleep, which was a cue for Peter, Jennifer, and me to retreat to the hotel room next door.  We positioned the door between the adjoining rooms so that it was almost closed, so we could hear if we were needed in my parents' room but so that we could whisper in our room and not disturb my parents.

As usual, Dad had to get up a few times during the night to go to the bathroom, and we were glad for the grab bars each time.  Because he had been started on the chemo pill just after he had the IV treatment that day, we had been instructed to be sure that the lid of the toilet was closed each time before he flushed and to make sure he thoroughly washed his hands after using the bathroom to protect him against toxic chemicals (Doesn't it seem weird that they were having him ingest the chemicals but he had to take extra precaution to avoid being exposed to them externally?).  We tried prompting him through the bathroom door to remind him, but, because he didn't always listen to us before he did something like flush or try to stand up by himself, eventually my mom just started going in there with him to be sure that he was following the safety procedures.

The next morning, on Thanksgiving Day, everyone but Dad woke up early and packed up our gear; we were eager to get started on the drive home.  We had a hard time getting Dad up and getting him ready; he wanted to have his face shaved, and it took major negotiating to skip it so we could just load up and go.  It was quite the antithesis to his usual tendency when it came to starting out on a road trip; every other time, he was the one getting up early and urging the rest of us to hurry.

Many restaurants and even some gas stations were closed along the way on the long drive home, and, by the time we finally made it back to my parents' house that night, we were hungry and exhausted.  We ate leftover Thanksgiving food that had been packaged up and put in the refrigerator for us after the big family meal that we'd missed.  Dad ate a little turkey and dressing and then went to bed; as usual, though, even with as tired as he said he was at the beginning of the night, he had a hard time sleeping and battled a headache all night, finally falling into a medicated sleep just before the sun came up.

The ringing of my parents' telephone woke us up early the next morning; it was a nurse from the nursing home where my grandmother was calling to tell us that Grandmom had taken a turn for the worse.  My siblings and I hurriedly got dressed and drove to the nursing home to be with Grandmom, and the challenges continued all day long.  A cold front had come through overnight, and it was very cold and windy outside, which added to our problems, especially during the family photo shoot.  

When I think back to that day, one of the most difficult days of my life, I remember the brutal cold, the confusion, the fatigue, and the extreme concern about Grandmom, but what I remember most is how hard Dad worked to take part in what was going on around him - and the feeling of love between all of us.  I remember noticing how difficult it was for Dad to tolerate the cold weather as he was helped out of the car, as he sat in the wheelchair for pictures to be taken, and as he was helped back into the car so he could get back home.  Like a lot of things going on then, the photo shoot seemed almost dreamlike: for as much as I was in denial about the prognosis of the brain cancer, I guess some of the reality had sunken in because not long after the news of his diagnosis had been given to us I scheduled a family photo shoot for the day after Thanksgiving, knowing (desperately hoping?) that the whole family would be together then so that we could have our picture taken, all together.  

We made it through the photo shoot and through the next couple of days, trying to keep all of our spirits up as we watched over Dad and Grandmom.  

I don't remember a lot from the time my dad was sick, including the details of what else we did over that weekend, but I do remember that I felt a sense of unease (even more than usual) when I left my parents' house that Sunday.  I really wanted to be present when the "magic" we had been promised happened; I envisioned Dad suddenly standing up from the bed or his recliner, steady on his feet and with clarity in his eyes and a smile on his face.  But more than I wanted to be there to witness first-hand the miracle, I just wanted one to happen.  I wanted to see the fulfillment of the cause-and-effect; I wanted the promise of the hope that we had to be realized.  It had been a whirlwind past few weeks, especially the one leading up to Thanksgiving, and I was exhausted both mentally and physically, but I was so very thankful for the love and the time together that we had.

I Remember

• I remember running behind my dad along the side of a street for miles, trying to imitate how he carried his arms and watching him wave at the people in every car that passed by, whether he knew them or not.
• I remember how he brought a tennis ball for us to bounce and two pieces of gum - one for each of us - along on long runs so that he had something to distract and entertain me with when the road seemed long.
• I remember him handing me a stick of gum, with the wrapper stuck to the gum because he'd been holding it in his hand for over a mile as we ran along, and saying, "I just chew mine with the paper on it," and so I did the same thing.
• I remember being impressed at how he knew exactly what the minutes-per-mile pace that we were running was at any given speed, how he knew where every working public water faucet in town was, and how he always seemed to know the mileage along our route but then he'd insist that we drive the course to double-check after the run.
• I remember him telling my sisters and me to sit on his back while he did push ups.
• I remember when he ran to my track meet, ten miles away, and how the other kids on the track team said he was crazy when our school bus passed by him on the highway on the way to the meet.
• I remember when he ran from my grandparents' house in Nashville to Centennial Park, about 11 miles, in freezing cold weather and how when I picked him up in the car I saw that sweat had dripped down and frozen off his ear lobes and it looked like he had earrings on.
• I remember seeing the needle with the pain medicine being brought in to his room in the ER after he was hit by a car while running in a marathon and hoping the shot hurt him less than his broken leg did.
• I remember being so angry that I wanted to kill the old lady that ran over him.
• I remember the hopeful look on his face when he said he was too lucky to get cancer.
• I remember wishing there was someone I could be angry at then too.
• I remember turning my head when I answered him so he couldn't see the doubt or the tears in my eyes. 

Part 43 –At Last

Continued from Part 42 

I wish I could draw, because if I could, I would draw two pictures side-by-side, one that shows how I pictured things going as we prepared and then got to bring Dad home from the hospital, and the other that shows how things actually went. 

On Dad’s last night in the hospital, his mood fluctuated between excitement about getting to go home the next morning and distress that he couldn’t leave even sooner. “My ride [the ambulance] cannot get here soon enough!” he said impatiently several times.  My sister Nancy and her husband David stayed with him during the first half of the night; per Dad’s request, David shaved Dad’s face, and Dad and Nancy talked about what Dad was going to wear home the next morning.  “I guess I’ll wear flannel pj’s and running shoes for the ride home,” Dad announced.

Dad put in a special “last dinner in the hospital” request with David, who kindly went and picked up a to-go order from Steak ‘n Shake.  Dad ate half of his order of Three-way Chili, took a break, and then proceeded to gobble down some pretzels, half of a Snickers bar, and an entire Cliff bar, and, of course, washed it all down with Diet Coke. 

By midnight, my sister Jennifer and I had tagged-in for the late-night shift with Dad.  He was getting super-antsy; he requested and was given a sleeping pill and later another pill for anxiety, but nothing seemed to calm him.  He directed Jennifer and me to “get real close,” and so we each pulled a hospital-grade recliner up next to one side of his bed and put the bed rails down so we could hold his hands and talk to him while he tried to go to sleep.  After an hour of so of more fretting (“You PROMISE I’m going home FOR SURE tomorrow, right?” he asked us repeatedly), he dozed for about an hour but woke up again around 3 a.m. saying, “It’s just too much!  I hurt all over!”  After watching us try for quite some time to get him settled again, Nurse Jim gave Dad a pain shot, which knocked him out for a few hours.  

While Dad slept, Jennifer and I talked to Jim again about how worried we were that we wouldn’t be able to take good enough care of Dad at home.  Jim was very reassuring and, as an added bonus, packed some “to go” supplies for us to take home.  He sang the praises of hospice care and of the support they had to offer.  Finally, we looked through the window of the hospital room and saw the sun coming up over the horizon; at last, it was Going Home Day!

About 8:00 that morning, Mom and Nancy took over at the hospital, and Jennifer and I drove to Mom and Dad's house to coordinate the preparations there.  Dad continued sleeping for about another hour; when he woke up, he remembered right away what was planned for the day.  He was still very anxious, though, and still in pain.  By 10:00, he started experiencing some shortness of breath.  “When is that ambulance going to get here?  Why can't they hurry up?” he asked over and over, first eagerly, then angrily, and then desperately and in a panic.  When Nurse Dave noticed Dad’s heart rate climbing and saw the anguished look in his eyes, he gave Dad a pill for anxiety and a shot for pain.  At last, Dad relaxed, and then he fell into such a tranquilized sleep that he did not wake up even as the paramedics transferred him from the hospital bed onto the gurney and then into the ambulance, as they sped down the highway, or as they wheeled the gurney into the house.

Meanwhile, at my parents’ house, my husband Kevin and my brother-in-law David were hastily rearranging furniture while Jennifer and I directed the set up of the newly delivered hospital bed.  Kevin and my daughters went on a mad dash to the store to buy extra sheets and pillows which we quickly threw into the laundry; we wanted to be prepared for bed-linen changes, and we knew the pillows would be needed for positioning Dad in the bed.

We had decided the day before that the hospital bed would be set up in the den; we thought Dad would enjoy being “in the mix” and that he would really like watching his flat-screen TV right by the fireplace and the space heater that was set up in that room.  Our husbands switched out the curtains so that heavier ones were hung in the den to block out early-morning sunlight (ambitiously – or maybe crazily – we still held out hope that Dad would be able to sleep despite the track record since he'd gotten sick).  The guys brought a couch from upstairs to add to the couch in the den so that two people could easily sleep in the room with Dad at night.  It was a mishmash of furniture and equipment, but it was as we felt it needed to be so that we could accommodate Dad’s needs at home.

A Hoyer lift

The medical equipment guy also brought a pressure-relief mattress and a Hoyer lift, which is a specialized device that uses a sling and hydraulic power to gently and safely transfer a person whose mobility and strength are compromised from one place to another.  I was familiar with patient lifts from my hospital/nursing home days of employment in the past, but it had been years since I’d operated one and even then it had been more of an industrial grade model.  Jennifer asked the rep to instruct us and then to watch us use the lift to be sure we wouldn’t risk injury to Dad when we used it to lift him.   Jennifer played the role of the “patient,” and Kevin, David, and I practiced using the lift until we felt confident.  We hurriedly put sheets and blankets on the bed, and then we waited.  (We had his favorite Dodgers blanket and his Glee pillow all set to go!)  Oddly, along with Jennifer, David, my husband, my daughters, and me, and alongside all of that medical equipment and awkwardly arranged furniture in the house, it felt like there was Hope, something positive in the room with us.  And at last, I, who had had tears streaming pretty much non-stop for several days, was able to stop crying.

When Dad’s “ride” arrived at the hospital as scheduled about 11:00 that morning, he was still knocked out from the sedative.  There were no big goodbyes with the staff, there was no cheering by Dad or by anyone else, there was no Going Home outfit of flannel pj’s and running shoes for Dad; everyone was all business and efficiency.  Had he been awake, I’m not sure if Dad would have high-fived everyone at the nurses’ station and in the hallway on his way outside or cried tears of joy and relief – maybe both.  Regardless, though, it was a smooth ride home, something that was well deserved and perhaps even long overdue.

When the ambulance quietly pulled up into my parents’ driveway around noon that day, we were as prepared as we could be inside the house.  The fireplace was “on” (as Dad said about the gas logs), there was Diet Coke and Foster’s chilling in the fridge, and the pets were quarantined in a bedroom to keep them from being underfoot during the transfer process.

I had envisioned Dad, exuberantly smiling and laughing as he entered his house that day, but the scene unfolded much differently.  Dad slept as the paramedics rolled him in on the gurney through the garage and into the den and as they smoothly shifted his sheet-covered body into the hospital bed.  He slept as they simultaneously raised the rails on each side of the bed, checked his vital signs once more, and quietly exited out the back door.  He slept while the dogs and his cat Foster came back into the room and took their places on the pet-beds by the fireplace.  In fact, he continued to sleep for several more hours. Not quite the homecoming I had predicted, but at least it went smoothly and at least, at last, Dad was home.

While he slept, we unpacked, did more laundry, and watched over him.  I got out my laptop and searched the Internet for modified clothing that I thought would make it easier for his clothes to be changed when needed.  I kept picturing him sitting up in his recliner, wearing sweatpants and a running t-shirt, but I wasn’t sure how it would work for him to be dressed like that because of his catheter and the PICC-line in his arm.  I bookmarked a website that sold what they referred to as “easy access clothing,” but the clothes they offered were not what I would call stylish – and for some reason (habit, denial, hope?), I still thought that mattered.  Finally, I wrote “ask about clothes” on the To Ask Hospice Nurse List in the Notebook; We have to figure out something about what he will wear, I thought.  He won't want to keep wearing a hospital gown, and surely the Hospice nurse will have a resource for what we are looking for apparel-wise.

Not long after that, the medications ordered through Hospice were delivered to our door – no having to get out in the cold again, no waiting in line in Walgreen’s, no insurance co-pays!  My brother-in-law Peter inventoried and organized the pills and recorded the name and the dosage of each in the Notebook.  A little while later, Linda, the intake nurse from the Hospice service, arrived.  As our husbands and my daughters stood guard over the still-sleeping Dad in the den, my mom, my sisters, and I sat down with Linda at the dining room table for an exchange of information.  She asked questions, she told us more about Hospice, and she assured us that we would have the support we needed to care for Dad.  We asked questions (shocker, right?), we told her about Dad and our story, and we showed her the Notebook, including the chart we had been using to keep up with his medications before he had gone to the hospital.  Linda looked at our lists and our charts, and with the utmost compassion in her eyes, she told us that we had done a good job keeping up with everything.  “Hospice is here now to do most of the ‘figuring out’ for you, though,” she said tenderly.


“We’re just so worried, and we want to make sure we do everything right for him,” I told her.  She told us that, above all, Hospice would focus on symptom-relief and comfort, and she pointed to a little box that had been included in the delivery from the pharmacy.  “That’s the Crisis Kit,” she said. “It will be here just in case.”


“In case what?” my sister asked her.


“In case he gets into distress for any reason – if he has trouble swallowing or breathing or if we need extra help controlling his pain,”  she said.  She must have seen the panic start to creep onto our faces, because she quickly added, “If you have any concerns or notice any changes in him at any time during the day or night, you should just call the Hospice nurse on duty and she will come right over.  She may even instruct you over the phone about giving him medicine in the Crisis Kit or in the prescription medications he has.  Don’t worry, though, you won’t have to decide any of it on your own.  We will take the reins, so to speak.” 

We asked her about the two things on the medical care list that made us the most nervous:  flushing the PICC-line (to keep it open in case it needed to be used for medication administration at a later time) and dealing with Dad’s blood sugar issues.  To the first concern, she said that an RN from Hospice would come by at least once a day and could do the procedure, instead of by us.  She opened the blood sugar testing kit and showed us the lancets and the glucose testing meter.  She explained how we were to insert a lancet and a glucose test strip into the testing meter, push a button to release the lancet into his finger, and then wait until we saw the blood sugar reading appear on the digital screen.  “Do you want to try it on him while I am here?” she asked.  “It’s not time to do it yet but we can just do it for practice if it will make you feel better.”


“Just do it on me!” Jennifer volunteered.


“Seriously?” Linda said.

“I’d rather have it practiced on me than on Dad,” Jennifer responded, and so Nancy set up the meter and checked Jennifer’s blood sugar (a perfect 100!).  We were good to go on that.


I told Linda about my quest for suitable clothing options for Dad, and she said that, while we were of course free to purchase custom-made clothing, many of her patients who didn't just wear hospital gowns wore "street clothes" or pajamas that had been cut down the sides or up the back to make it easier for those items to be put on and taken off.  Easy enough, I thought.

Linda said that she needed to look in on Dad as part of her initial assessment.  I told her that we did not want to tell him that we had called Hospice.  She said that she had had that request before and that her “rule” was that she would take off her name tag which prominently identified her as being from a hospice service and that she wouldn’t bring up the subject with Dad but that if he asked her if she was from Hospice she wouldn’t lie to him.  Fair enough, I thought, and we lead her into the den to see him.  She gently and efficiently checked his vital signs and then went back into the dining room to record the information in her notes.  She hugged my mom, my sisters, and me and told us that another RN would be coming in the morning and that she or the other nurse would be available by phone if we had any questions or concerns.  We felt better; we felt like there was a plan and a back-up plan in place.  We felt like we could handle things, at least until the next day, and, as it had been, our strategy was to take things one day at a time.

As the sun was setting and the room was starting to get dark enough for us to need to turn a couple of lamps on, Dad opened his eyes and looked around.  “At last, he is awake!” I thought.  I waited for him to break into a big smile and say that he was so happy to finally be back at home.  Instead, though, he said in a desperate, gravely-sounding voice, “But you promised me I was going home!”  

“You are home, Dad!” I told him.  But he wasn’t convinced.  We told him he was in his den and we pointed out the things around him.  The more he looked around the room, though, the more disoriented and upset he became.  Finally, my sister picked up Foster and put him in the bed with Dad.  Foster curled up right next to Dad and purred loudly, as Dad petted him and dozed off again.

Up Next – Part 44 – Hospice, Part 2