So Much For No Sequestration

I didn't know what the word "sequestration" meant until recently; in case you don't know, it's a term that refers to the making of general, broad-sweeping cuts in government spending due to budget shortfall.  

During the final 2012 Presidential debate, Obama was asked about the budget sequester, and he said, "It will not happen."

Unfortunately, though, it is happening.  Funding for categories of things in the budget are being cut and/or put on hold indefinitely, including Head Start education programs, food inspection, and medical research.  Instead of looking at items in the budget individually to see where cuts can be made without causing long-term, wide-spread harm, with a sequestration, entire categories are being stricken from the budget.  To me, making cuts in this way seems haphazard, short-sighted, and scary.  Maybe careless, lazy, and desperate too.  Actually, there is a one-word descriptor to describe the "plan" that was used by columnist Robert McCartney in an article today in the Washington Post that I think is spot-on:  Dumb.  

               CLICK HERE TO READ THE ARTICLE

Some of the areas in which these crazy cuts are projected to be made seem like a gamble; maybe, just maybe, things will turn out ok despite the loss of funding.  One area, though, in which cutting support in such an extreme fashion is literally a matter of life and death is medical research.  As the article above says, $1.6 billion is slated to be cut from the budget of the National Institutes of Health, which is already underfunded.  "NIH grants pay for most of the basic research in universities and laboratories across the country, [which] has led to practically every major U.S. medical breakthrough since World War II," McCartney reports.  

I read a lot about research in the areas of cancer and other diseases, and lately more and more often I've been seeing information about how we are so close to figuring out a cure for many of them.  Not just a treatment - a cure!  Obviously, without funding, this research will be put on hold or even shut down, and that swings the making of these cuts over into the category of being downright immoral, in my opinion.  

I wonder if the members of Congress and the President actually recognize what will happen; I wonder if they have thought about the implications of the cessation of medical research, either in broad terms or in a personal sense.  I doubt any of them have lived their lives without being touched in some way by cancer; maybe they should sit and talk for awhile to someone they know who is fighting or who has fought it, or maybe they should look at a photo of someone they've known personally who has lost their life to the disease, just to be sure they realize what they are doing with such over-zealous use of their red pens.

I realize it's challenging to figure out where spending cuts should occur when there is a budget deficit, but I'm pretty sure nobody has ever told the members of Congress or the President that their jobs would be carefree or easy.  There are difficult decisions ahead for them to make, for sure, but trying to solve the problems by simply indiscriminately slashing entire categories is just plain - and here's one more word to describe the whole thing - cowardly - and they should be ashamed.

The Night My Husband Went Bald

Two days after my dad went on ahead, my siblings and I, our spouses, and our children all spent the night with my mom.  My brother-in-law Peter sat at the dining room table to work on creating a slideshow of photos of my dad to play at the memorial service the next day; with the rest of us taking turns handing him pictures to scan and giving input about what music to use, he worked on the project for hours into the night.  In other areas of the house, there was talking, comforting, and some crying going on; mostly I think we were all just trying to absorb what had happened and to keep ourselves together any way we could so that we could make it to and then through the memorial celebration we were hosting the next afternoon in my dad's honor.  

Just before midnight, we set up pallets on the floor of my parents' bedroom to the side of their bed, and then Mom and I went to bed in that room with the kids.  Exhausted, we fell asleep just minutes after we had closed the door to the room.

At some point in the night, I woke up and went upstairs to get in bed with my husband; the problem with that plan, though, was that when I'd gone to sleep downstairs it had not yet been determined where the other adults besides Mom and I were sleeping that night.  It was chilly upstairs, and I was anxious to get into a warm bed and go back to sleep.  I peeked into one bedroom and then into the other and saw two bodies in each bed, and so I looked in the TV room and saw a single person whom I deduced was my husband lying on an air mattress completely covered up with a sleeping bag.  I tucked in beside him, and he stirred a little in his sleep, causing the sleeping bag to shift and giving me a little bit of a view in the mostly dark room of his face and his head.  

In that moment, my heart skipped a beat. It was my husband's face, but it didn't look like his head: every bit of his hair was gone.

Without even thinking, I reached out a touched his head; he woke up and said, "I got my head shaved."  

"What???" I said, in disbelief.

"This way your mom can just look around for a bald guy at the memorial service if she needs anything," he explained, still half asleep.  

I was touched.  Shocked, because I'd had no idea that head-shaving was even being considered, but touched.  My dad was bald, as are my brother and both of my brother-in-laws; Kevin was the only adult male in the family with hair.

We went back to sleep for a few more hours, and then we got up and got ready for the gathering for the memorial.  All day I kept looking at Kevin's bald head and doing a double-take; he looked so different than he did with hair.  It somehow fit, though, in that place and time, as an act of tribute to my dad and as an act of protection and support for my mom and, by extension, for my sisters and me.  His newly bald head and even the grouping of the quartet of bald guys at the memorial were quite the topic of conversation, and thankfully it made getting through one of the hardest days of our lives a little bit easier.

On Being Lazy

My dad never picked favorites - whenever he was asked to do so he would flat-out refuse.  He always said that designating a favorite would just make one seem better than another and that there was no point in that. -  After years of hearing him say that, I knew better than to ever ask him to pick a favorite of one over another, but once during one of our middle of the night talks while he was sick, I asked him what he thought the worst quality in a person is. His reply: being lazy. I had to laugh, because that made me think about when remote controls first came out on the market for TV's and he thought they were ridiculous. "It's lazy enough just sitting there watching TV," he'd said, "but I can't imagine why someone couldn't get up off the couch every once in awhile to change the channel or adjust the volume!!"  When he said being lazy was the worst trait a person could possess, though, just out of curiosity I asked him if he thought it was worse to be lazy than to be a liar or a thief. He thought for a minute and then, with a half-smile of his face and in a tone that left me wondering about whether or not he was kidding, he said, "Well, at least when a person does those things, he's putting some effort into it." 

He also commented a lot over the years about how crazy (and by that I think he meant lazy) he thought it was when someone would drive around a parking lot in search of the perfect parking spot rather than just parking in the first available place they encountered and walking.  It just wasn't something that he could make sense of, I guess, and he often pointed out that the people who do it at the gym are the worst! 

I think Dad's distaste for laziness - which he thought of as a lack of activity or a lack of effort - made it harder for him to tolerate his physical condition and the challenges that came along with it when he was sick.  I'm sure he didn't like having to be helped or having to wait for help doing things, and it didn't surprise anyone who knew him that he wanted a plan in place so he could "do something" every day to work towards getting better.  When his health declined instead of improving as we'd been told it would with the treatment, though, I started to notice that he didn't comment nearly as much about wanting to have goals for himself or about needing help to do basic things. It was as if he had somehow resigned himself to his condition. I thought at the time that maybe he was just biding his time until he could be independent again.  Now I wonder if he somehow saw letting us help him as trying to help us. 

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.

Steps To Nowhere

Disclaimer:  This is a long post, full of emotion about two things that are important to me - my dad and my profession.  I know LOTS of health care workers including many OT's, PT's, and Speech Therapists who are excellent at what they do and who are dedicated to going the extra mile to advocate for their patients and to meet their patients' needs.  Unfortunately, though, the majority of those with whom we came into contact during my dad's illness were not of that caliber, a fact with which I am finding it very difficult to reconcile.  Here's the story ...

Like lots of kids starting off in college, I really didn't know what I wanted to be when I grew up when I left home to go to college at the age of 18.  It was my dad who took a good look at what my interests and my strengths were and who eventually found out about occupational therapy, a field in which I have loved practicing for the last 21 years.  

I think some people just kind of fall into a career that they see as better than nothing or just so-so, some go with something that motivates them with money, and some just punch the clock while hoping that something better comes along.  And then, of course, there are the lucky ones like me: those who somehow find their way to doing something for a career that they feel they were meant to do, something that, while not always fun or perfect in every way, gives them purpose and intertwines with whom they are in such a way that they know they are following their calling.  I am one of the lucky ones, thanks to my dad.  That's why part of what happened while he was sick disturbs me on such a level that I am afraid that a part of me will always be left feeling disheartened and disillusioned.

Steps to nowhere

The first contact we had with the world of rehab during Dad's illness was just a few days after his surgery, and right away things started out with a series of fumbles and ball-dropping.  The slew of physicians on Dad's case kept telling us that Dad would begin to be seen for Occupational Therapy ("OT") and Physical Therapy ("PT") as soon as he was transferred out of the ICU onto a regular floor, which happened early on the Friday afternoon after his surgery on Wednesday.  When no one from rehab showed up that day or the next morning, we asked again when it would start, and at that point we were told they “don’t do therapy on the weekend."  Evidently, though, the doctors weren’t aware of this policy because when the physician’s assistant for the neurosurgeon came to see Dad around noon on Saturday, he was surprised to learn that therapy services had yet to start for Dad.  Evidently he followed up on it, because about an hour later the OT and the PT showed up.  They had Dad sit up on the side of the bed and use the walker to get around the room a little (he was unsteady during both of these tasks), and they checked his movement and strength (fine on the right, not good on the left).  All in all, the two therapists together were with Dad for a total of about 20 minutes, about half of which time was spent with them telling us that they thought he needed to go to an inpatient rehab hospital for a week or two and that we should visit a few in the area right away since the doctors were already talking about discharge from the hospital in a couple of days.  

Once the initial mini-therapy session was over, my family was left to figure out what our next step was, with the knowledge that we had to work something out in the next 48 hours or less or essentially Dad would be sent home with only a follow-up appointment with the oncologist.  Even now, thinking back to that time gives rise to the sound of a clock ticking loudly in my head; especially considering that we had just been given the news of how severely limited Dad's time was likely to be, given his prognosis. It was nothing short of shocking to think that after only a brief session of therapy the hospital staff seemed to feel that it was just fine to push us out of the nest, even though there was no possible way they could know if we were ready to fly or not (we weren't!).  

And so we were left completely on our own to find a suitable rehab facility in essentially one day (a Sunday at that!).  Keep in mind, too, that at least one of us had to stay right with Dad every second of the day and night, too, because of his impaired balance and mobility and his safety awareness issues, at the same time that we were literally left to use Google and the yellow pages to find some place that we felt could have a positive impact on Dad's future.  To say that the task of figuring out what to do next was daunting is a vast understatement.  

That Sunday afternoon, we toured the only two rehab facilities in the area that took Dad's insurance and that met our criteria, which at that point had essentially been whittled down to somewhere that had therapy services available to be carried out 7 days per week, was clean and safe, would allow around-the-clock family visitation, and had an opening the next day.  We were also hoping to find a place with a Case Manager so that while Dad got his therapies and finished recovering from the brain surgery from the week before, we could get the support and referrals we needed to modify my parents' house to make it safe for Dad to go home and to go ahead and set up all of the follow-up care that would be needed after discharge.  We settled on the second place we saw and let the admissions coordinator know that we were seeking a very short-term stay with aggressive therapy services, probably a week at most so we could then get Dad home and have him get ready to start treatment for the cancer.  The coordinator said that could be arranged.  We were relieved and felt that we had a solid plan in place for the time being.

From the minute we arrived at the rehab hospital, though, I felt there was a lapse in communication and a gap in the services that should have been provided.  As Dad read the newspaper in bed and Mom and I unpacked, the Rehab Director came by to meet Dad.  In talking to him about Dad's medical history, I reiterated that we were seeking a short-term stay of about a week with the goal of getting intensive therapies provided for Dad so that he could get a jump-start in his recovery.  The Director said that the therapists there would evaluate him and then the team would report back to us with a plan; I told him that we would like to have input into the plan and that we were also seeking recommendations about any equipment and follow-up outpatient therapy services that Dad would need after he left the rehab setting. 

Very early the next day, we were presented with a copy of the schedule for Dad's therapy sessions, which were to begin that morning.  The schedule said that Dad would get OT, PT, and Speech Therapy (to work on memory) back-to-back starting at 8 a.m., and then he would get more therapy that afternoon.  Good plan, except the OT showed up 45 minutes late, which threw off the entire schedule.  In what became a pattern during Dad’s stay there, the therapists juggled things around to try to fit Dad in, and oftentimes Dad and the family member who was with him were not informed of the changes and/or the scheduled ended up not being able to be adjusted and some of his therapy got left out. As a result, over the course of his rehab stay, Dad did a lot of waiting, and, as par for a brain injury like his, he was having trouble dealing with schedule changes or uncertainty.  He asked many times what was next, but the answer didn't seem clear to anyone around.

In the afternoon of Dad's first full day at rehab, the Director came into Dad's room and told my aunt, who was staying with Dad while Mom went home for a wardrobe change, that patients there typically stayed for a couple of weeks or more.  He said that the therapists would present my family with a plan in the next couple of days.  When my aunt called to tell me about the conversation, a red flag went up in my head: before we had made the commitment for Dad to come to that facility and less than 24 hours prior to that time, I specifically told the Director that we only wanted Dad to be there for about a week.  Even if the guy didn't know ANYTHING AT ALL about Dad's prognosis, all he had to do was google "GBM" and he would've immediately seen why we were so concerned with time.  Just in case the prognosis that we'd been given had any merit at all, we wanted Dad to be able to do what he wanted to do, and it was becoming clearer by the minute that staying there was not of his preference.  When I got back to the rehab center the next evening, I was told that the Director wasn't on site but that it would be conveyed to him that I needed to speak to him.  He didn't come by all the next morning, and that afternoon we went for Dad's first appointment with the oncologist, after which I had to leave to go home so I could go to work the next day.  After a round of phone tag the following day, I finally got him on the phone, and he told me that the team had presented the plan for a 3-week long stay to Mom and Dad and they'd agreed.  I was stunned that the rehab team had met without input from my family; they hadn't asked any of us the first thing about how my parents' house was structured or what my dad hoped to be able to do when he was discharged.   He insisted that with the extra time Dad would be “much more likely to achieve the team’s goals of supervised/modified independence,” which in rehab terms means that a person goes home able to take care of himself with special equipment (like a walker and a shower bench) but would need another adult to be nearby in case he needed to ask for assistance.  He told me he planned to go over the specifics of the goals the therapists had set for Dad (goals that were set without any family input), and that he would meet with me when I was at the rehab facility in a few days.  I see that conversation now as almost brainwashing; I am no sucker, and, like the rest of my family, I was fierce in my effort to do what was right for Dad, but somehow the guy convinced me that he was right.  Maybe it was because I was totally sleep-deprived and stressed-out, maybe it was because I presumed that given his position he was experienced and knew better than I did, maybe it was of the belief that I had that people were there to help us in our time of need without an agenda of their own.  Maybe (maybe even likely) it was part of the bargaining process that my family was willing to participate in: if it took having Dad stay at rehab for longer to get him back on track, of course that's what we would do!  Maybe it wasn't even that the plan to have him stay longer was wrong; certainly, though, from my current perspective, the way the plan was developed and presented to us was absolutely not right, and, even worse, the quality of the services and the assistance that we were provided as part of that plan was far from adequate, both in my personal and in my professional opinion.

We were also in the midst of dealing with meeting Dad's needs around the clock and with the huge paperwork demands for legal things like getting medical power of attorney and financial things like checking into filing for disability and follow-up things like filling in the 10+ pages of detailed information required to get Dad into the Duke program.  Everyone in the family who was involved in Dad's care wanted to do what was best for Dad, and it was easy to believe that the plan proposed by the rehab team was just that.  And so we threw ourselves into doing what we thought was based on what we thought was their expertise; we agreed that Dad would stay at rehab for three weeks, and we voiced our mission over and over to the staff that in that amount of time we wanted to have the house set up for Dad, any necessary equipment in place, and all the follow-up services lined up so that when we left there, we were 100% ready for whatever was coming next for Dad.

Besides the plan for the length of time Dad was to be at the rehab hospital, though, there were other issues that I also felt (and still feel) were being mishandled.  I sat in on several therapy sessions with Dad while he was there.  With my rehab background and having spent so much time with him since the onset of his illness, I knew what his deficits were; I also knew about brain injuries and about what the point of doing certain activities as part of the therapy sessions were - but Dad didn't know either of those things.  Pre-cancer, he didn't, and certainly in the midst of everything, he didn't, and it was part of the job of the therapists to try to inform him of those things.  As I've mentioned, Dad detested inefficiency; he used to comment to me that he thought "all of these new-fangled training programs for runners are just money-making schemes," and then he'd add "Here's the real secret to becoming a better runner:  RUN MORE!"  And so it isn't hard to imagine the frustration, the boredom, the feeling of stagnancy that he must have been feeling when the therapists asked him to do things like matching cards and sorting little trinkets into piles, doing word searches and recalling random words called out to him, and performing leg lifts ("With no weights AT ALL?" Dad incredulously asked the PT the first time she told him to lie on the mat and lift each leg ten times.) and going up and down the make-shift set of wooden steps in the middle of the therapy room ("Steps to nowhere," Dad muttered prophetically as he went up and then down the stairs again and again as part of a PT workout.)  Dad didn’t see the point of many of the activities; he thought they were a waste of time and childish, and in many cases, I didn’t disagree.  It’s hard to be motivated when you don’t see the point, and the point is much more unclear when a person has suffered a brain injury.  Over the course of the time Dad was in rehab, I watched him go from being fairly upbeat and ready to face his charge, to being openly bored and confused about the point of things, to being aggravated and resentful during his therapy sessions.

But still he tried his best, each and every time he was asked to do an exercise or a task, even when he didn't feel like it and even though he didn't see the point.  The couple of times he requested that a therapy session be cut short, he later made up for it by doing extra repetitions and by asking one of us to quiz him on something; he seemed to think that by doing "homework" he would get to go home early.  But again, the payoff from doing the work wasn't as deserved; not only did Dad not get discharged early, he didn't make the progress we had been assured that he would.

Believe me, I know there are know guarantees in life; I knew it then too, from a professional standpoint more than anything: sometimes a person can put forth 100% effort in therapy sessions and still not meet the goals that have been set.  However, what I also know is that it is the responsibility of the rehab team to reassess and regroup whenever necessary, and, if independence doesn't seem to be in the cards at least at that point for the patient, it's their job to make an effort to set that person up with adaptive equipment, follow-up services, and support so that the goal of working towards ensuring safety and some degree of satisfaction on the part of the patient is achieved.  That part is something we as health care workers can control, the follow-through and the empathy and the compassion, even if they technically go beyond the spectrum of our job description.  

Besides having Dad get better through therapy sessions while he was at rehab, our second goal for during that time was to have a social worker or someone like that to help us coordinate everything that was going on.  Mom and Dad first met the Case Manager on Dad's fourth day in rehab when she came by Dad's room (not great when you consider we were originally only planning to be there for a week); she told them she would help with any legal paperwork and also with coordinating services that would be needed after discharge.  She said that the team would meet the following week to decide how much therapy Dad would need after he left rehab and whether they recommended he be seen for therapy at home or in a clinic as an outpatient.  

After that, I tried to contact the Case Manager by phone but kept getting her voice mail and did not get a returned phone call despite leaving repeated messages.   Several times when I was at the facility I went to her office and left messages with the nursing staff that I needed to talk to her; I recognized the urgency of getting the ball rolling for after-care services and supplies, and I was shocked and angered as it became more and more apparent that the Case Manager not the rest of the staff there either didn't see the importance of it or - worse - they just really didn't care.  I called it "watching the Cancer Channel;" these people evidently were just find with putting in their 8 to 5 and then going home without another thought about their patients - if they aren't at work ("watching the Cancer Channel"), to them, Cancer isn't real, it isn't happening, it isn't their concern.  

Over the weekend, therapy services were sparse despite the fact that we had been told before admission that patients like Dad who were there for short-term stays would get 6-7 days of therapy per week.  Dad was restless and bored; for him, there was pretty much nothing to do except wait for the time that he could go home to come.  For us, though, there was a seemingly endless list of things to do.  One of those things was installing grab bars and getting other adaptive equipment like a shower bench set up at my parents' house.

I asked for advice from the therapists at the rehab center on this but was told we should "wait and see," an approach that seemed to us to be at best unreasonable or lazy and at worst careless or reckless.  I consulted with my physical therapist and occupational therapist friends - most of whom are pediatric therapists like I am - and then I used my friend Google to try to figure out at what height to mount the grab bars. Because the therapists at the rehab hospital couldn't/wouldn't (what's the difference?) give us names of contractors or home health therapists who could install the equipment, my husband and my brother-in-law installed grab bars in the bathrooms by the toilets and in the shower, rolled up throw rugs for safety when Dad used the walker, and rearranged furniture to make the house more accessible.  If we couldn't find help to climb Mt. Everest, by DAMN we were going to work together to climb it anyway.

The days of therapy sessions were peppered with unexpected cancellations and rescheduling of therapy sessions for reasons that were not always explained to us, early morning wake-ups by the staff for deliveries of breakfast trays and medications ("The day shift gets mad when they get here at 6:30 a.m. and we haven't gotten all the trays and the meds out to the patients yet," one night-shift nurse told me when I asked about the earliness of the delivery.  "Wow. Just wow," I thought, as I gritted my teeth and told myself and Dad that we just had to stick it out a little longer and then we would control our schedules for things like that.).  Somehow the speech therapy services got switched over to being provided by a student speech therapist, a young girl who was nice enough but obviously lacked the knowledge and experience that we so desperately needed and expected.  (Maybe they should've had the student provide extra sessions of speech therapy for Dad, for free, instead of billing us full price for her sessions as we later discovered they did.)

For probably a variety of reasons, Dad's progress was slow and inconsistent.  I wanted to believe that it was because of the lack of sleep and/or the persistent headaches and pervasive fatigue that Dad suffered from, as much as at this point I want to not feel as upset and full of blame - deservedly or not - as I do towards the staff at the rehab center.  

On the morning that we began Dad's last week in rehab, a nursing aide helped Dad into the shower and then stepped out of the bathroom for a couple of minutes, during which time Dad got up from the shower bench and tried to use his foot to dry water on the floor with a towel, which resulted in his falling.  Luckily, Dad wasn't hurt, but the fall highlighted the fact that there had really been no improvement in his safety awareness since he had gotten to rehab.

After this incident, I called the rehab director to assert that Dad should not be left alone, even for a minute, and to inquire again about getting recommendations and orders for things that would be necessary after discharge, including home health equipment, a handicapped parking permit, outpatient therapies, and insulin training.   No one in my family ever heard back from the social worker, the woman whom we had been told was our Case Manager; eventually we caught on to the very obvious fact that the onus was on the patient’s family to figure out what needed to be worked out before the patient went home.  I thought it was absurd that we were the ones having to make a list and chase down the support we needed; I shutter to think what would have happened otherwise.  After being asked at least a dozen times by my family when Family Education Day would be held so that as many of us could schedule to be there as possible, the Rehab Director informed us that the training would be two days before Dad was discharged.  We told him that was going to be tough to work out for most of Dad’s family; we were all traveling from other cities and were piecing together what needed to be done in between working and taking care of what needed taking care of on our own home fronts.  He said that there wasn’t another option available for this, though, and so I took the day off work and went to the training.  During the training, I inquired about getting an order for a wheelchair since Dad was unable to cover long-distances without totally wearing himself out.  I asked AGAIN about insulin training and seizure training, and I brought up my continued concerns about the need for emotional support.  To all of it, we were told that the recommendations would be given to us in the discharge paperwork, which we’d be given when Dad was on his way out the door.  

At last, though, the day of discharge for Dad came, and we were able to take him home to his house which had been set up to meet his needs, no thanks to anyone at the rehab hospital.  We called and made an appointment for someone from a home health agency to come to the house to go over what types of services we could get for Dad, and it was decided that he would get OT, PT, and Speech Therapy at home.  

Right away I asked if the therapy sessions could be set up on a consistent schedule; it actually shocked me when I was told no, that the therapists each handled their own schedules, and after a week or so of dealing with them coming in and out of the house throughout the day, it became clear that we were once again at the mercy of a group of people who either just didn't get it or just didn't care.  It was of great frustration that the therapists did not seem to coordinate with each other at all and that they appeared not to even consider the sleepless nights that were going on at my parents’ house or the desperate need for routine for Dad and Mom and those of us who were there to support them.  As with the therapy staff at the hospital and at rehab, it soon became apparent that they had little to no experience with working with patients with brain tumors; they tended to treat him more like a stroke patient, and those two things are vastly different.

 One day the PT came at 8 a.m. (an hour after Dad had finally gotten to sleep from the night before!), the OT came at 11:30, and the Speech Therapist came at 3:00, thus thwarting any type of bid for a nap or for venturing to Sonic for a large Diet Coke, Dad’s main pleasure for the day on many days.  The next day, the therapies were at 9:30, 1:00, and 4:00.  There were lots of last-minute schedule adjustments and some cancellations by the therapists, too.  The only consistency from the home health agency was the inconsistency.  Therapy was hard for Dad; he wasn’t the Road Warrior/gym rat that he had been for 50 years before.  He tried to get on the recumbent bike for some extra exercise some days, but mostly he just tried to tolerate the sporadic visits of the therapists and a select few other people who stopped by as he fought off exhaustion. 

Thinking I could tie Dad’s love for swimming in with his distaste for the mundane Physical Therapy sessions, I called around looking for a therapy clinic with a pool, but I was told time and time again that Dad didn’t qualify due to ambulation limits and the possibility of seizures.  I'm not so sure that the reason they wouldn't even consider taking him on as a patient wasn't liability; none of them were even willing to meet him much less try to figure anything out that might help us.

I was taught in OT-school that goals for therapeutic intervention should always be based on what the person wants to do; I don't recall even once while Dad was sick having a health care professional ask him or any of us what he liked to do or what his goals were.  He would've said going to a Grizzlies' game, going to the movies, going to Barnes & Noble, maybe even being able to walk his dogs around the block.  I can't for the life of me figure out why those things weren't addressed by those therapists, why they seemed to think it was just fine to have Dad work on stacking cones, squeezing a ball, and doing leg lifts instead of at least trying to focus on things that mattered to him.  My family was doing what we could to facilitate the things like that that were on Dad's Revised Bucket List, but it would have been nice to have some help.  I've taken kids to the circus, to McDonald's, and to a playground as part of therapy sessions in the past; I don't see why Dad's therapists didn't see the value in making the effort to support Dad's objectives.

And then, the icing on the cake came: the day before Dad was scheduled to get an MRI to see how the treatment was going, he fell in the den and couldn't get up.  My sister Jennifer was there with him and tried for over an hour to help Dad get up; by sheer luck, Dad's swim coach and friend Ashley showed up and was able to help Jennifer get Dad up and into the a chair.  

After Ashley left, the OT came for a therapy session that had been scheduled earlier.  Jennifer told the OT what had happened, but he really didn't seem to understand and/or care.  He had Dad do some hand exercises from the recliner in an   Jennifer asked the OT to help her get Dad to the bathroom before the guy left; he acted annoyed, but he agreed.  The two of them assisted Dad in getting up and behind the walker but quickly realized there was no way he could walk at all; he was just too weak.  They ended up pulling a dining room chair over to Dad and lower him onto it, and then they pushed him in the chair along the hardwood floor into the bathroom and then into the bedroom, at which point the guy hauled ass out of there right after Dad was back in bed, leaving my sister alone at the house with Dad with no way to get him out of the bed if he needed the bathroom again or anything else for that matter.

 Looking back from this vantage point to the time while Dad was in the rehab hospital and to the time he spent in the home health therapy sessions, I have to say that it was a complete waste of his time.  It makes me feel ashamed to be part of a professional group with some members who choose not to go the extra mile, or possibly even not to fulfill their job responsibilities - or, taking it even one step further - even to step up to help a fellow human being.  My family was desperate to find a way to help Dad to get better, or failing that to make accommodations for him to help preserve his dignity and his enjoyment of the time he did have left; we truly felt that we were fighting for his life, and we desperately needed help from someone who could do something to help us in that fight.  

  

 

Part 45 – Spending Time

Continued from Part 44

As the sun came up on the first day of the year in 2011, family members filtered in to Dad’s bedside in the den of my parents’ house.  Dad alternated between dozing for short periods of time and talking to those around him in a raspy voice.  As we watched him dutifully try to swallow the pills that we gave him, we decided to start splitting them in half and then, if (when) even that became problematic for him, our back-up plan, which we ended up needing to employ only the next day, was to crush them or to ask the Hospice nurse for a liquid form of the same medicines.  Like the Hope to which we were all still so desperately clinging, we would adjust the medicines as needed as part of the Bargain, while never losing sight of our overall goal of keeping Dad as comfortable as possible.

When I think back to the scene at my parents’ house that morning, I see it in my memory like footage on a time-lapsed video:  a flurry of activity, with different family members and later the Hospice nurse coming in and out of the picture and with Dad there in the center.  After a brief and probably unnecessary discussion with my mom and my sisters, I cancelled the arrangements for the trip that Mom and I had planned to take with Dad to the Brain Tumor Clinic at Duke for a follow-up visit on January 17.  I emailed back and forth with Dad’s swim team coach and friend Ashley as she worked to put together a schedule of meals to be provided to my parents’ house several times a week by Dad’s teammates on the swim team and other friends through the first week in March.  My sisters and I wrote out a calendar showing when each of us would be there with Mom and Dad through the end of February.  We were all struggling more than I can adequately describe to process what was happening and to think about what the future would hold; the amount of time we would have together was still very much unknown, and I guess it helped us in some way to feel a tiny bit of control by having a plan of sorts, “just in case,” a phrase that we seemed to be using a lot during that time.  It was so hard to try to find the right balance of what should be done right that second and what reserves we would need at different points in the future.  As my brother Lee said in an email, “Ideally we would all take leave at our jobs and just be there [with Dad] 100 percent over the next few weeks and months.”  Even though none of what was going on was ideal, I suppose we were all still hopeful on some level that Dad would rally enough to have some quality time left, and of course we wanted to do what we could to be prepared and to be present for that, if our hopes came to fruition.

After Dad had gotten home the day before, I had updated the Care Page to let people know that he was home, and, in the morning on New Year’s Day, I updated it again.  We knew that a lot of people were wondering and worrying about Dad and about us, and we hoped that through these updates, we could inform others about the fact that we had chosen to bring him home with hospice support while making it clear that we did not want to garner sympathy.  I, in particular, didn’t think I could bear anyone else’s shock, sadness, grief, disbelief, anguish, or – what I thought would be the hardest to hear as I looked at Dad lying there in the bed – denial.  I had more than enough of those things on my own.  I felt like I was so fragile that I would absolutely fall apart (or unleash) if anyone said that they were sorry or otherwise framed our decision and Dad’s presence at home with us as a loss, even though of course we all regretted that his body could no longer withstand the treatment we had so hoped would give us a miracle.  We wanted (and needed) support and love, and thankfully that’s exactly what we got, through the many messages on the Care Page and via other sources from our extended family members, our friends, and even from people whom we didn’t know but who knew Dad.

We thought Home would be nourishing for Dad, enough at least for him to improve enough to be comfortable and settled.  As fuzzy as some of my recollections of my thought processes are from during this time, I clearly remember that we were all expecting weeks and maybe even months still with Dad and that we were hopeful (personally, I was actually expectant) that he would feel ok during the majority of this time.  My sister Jennifer, who lived the furthest away, had reservations to fly home with her husband and children in the afternoon that day, and, like the rest of us, she was painfully torn about whether she should stay by Dad’s side – which actually seemed less hopeful – or go home as planned and come back again to see him soon.  How we desperately wished that the Hospice nurse or someone else would (or could) tell us what the best thing to do was!  Instead, though, as we had been doing during the entire ten weeks that Dad had been sick, we pulled together and did what we thought should be done, with Hope and a couple of back-up plans in our back pockets.  Mainly, our Plan was to have a Plan, even though we knew revisions and adjustments would most certainly have to be made along the way.

Before she and her family left to fly home, Jennifer booked a flight to come back the following weekend.  Lee, who also lives far away, booked a flight to come for the weekend after that, and Nancy, my husband and hers, and I filled in as many of the other spots on the calendar as we could.  We made arrangements with a company that provided “sitter service” (How awful is that term?) to have a trained nursing assistant come during the other times so that there would always be a third person at the house to help Mom with Dad, plus the Hospice nurse, around the clock.  None of it was ideal, but it was the best way we could see to arrange for Dad to be at home, as he wanted and as we did too.  

Around the middle of the morning that day, I went upstairs to take a shower.  As I was getting dressed, Jennifer knocked on the bathroom door.  “Dad is eating bacon and drinking beer!” she said excitedly through the door.  With my hair still dripping wet, I hurried downstairs to see for myself, and there he was, in the den, with the head of the hospital bed cranked up, eating bacon and some of what he referred to as “fruity dessert,” which was fresh fruit that had been purchased already cut-up at the grocery store, a long-time favorite snack of his. Evidently, Dad had smelled the bacon that my brother-in-law David had been cooking in the kitchen and had requested some along with the “fruity dessert” and a Foster’s, and, of course, he had been served all three right away.  The TV was being changed back and forth between two of Dad’s standard New Year’s Day favorites, football and the parades.  I remember sitting in a chair beside his bed and consciously soaking in what was going on in the room, so happy that we had been able to bring Dad home and that we were all there together in that moment, but so sad because I couldn’t help myself from realizing the necessity of hoarding that memory in my mind for when we couldn’t be.

In the many pep-talks I had gotten from Dad before races I had run when I was growing up, he had always advised me to run an evenly paced race while still saving enough energy to “surge” before the finish.  “The race can be lost anywhere along the way,” he said every time, “but it can only be won on the last part of the course.”  I guess that morning was Dad’s surge, his way of “kicking it in” on the last part of the course for us, even though he had already put in such an outstanding, impressive effort along the way.  

“I need to close my eyes for a little rest,” he said after he ate.  Not long after that, though, he opened his eyes and motioned for me to come closer to him.  As I leaned in, with fear and confusion in his voice he asked hoarsely, “How will you know what I want to tell you when I can’t tell you anymore?”

Looking back from my vantage point now thirteen months later, I wonder if he meant what I thought he meant at the time when he said these words.  I thought he was seeking reassurance that we would be able to meet his needs if he lost his voice, and, as such, that is what I focused on when I responded to his question.

“We’ll know because we’ve been able to spend so much time with you, and we know you,” I told him.

Not completely convinced, he said, “Are you sure?” 

“Yes, Dad,” I told him.  He made a motion with his fingers by his shoulder at the edge of the sheet on the bed, and then an idea came to me about how I could prove to him that we would know what he was trying to tell us, even if he could only gesture.  “You want your covers to be pulled up, right?” I asked him.  

“Yes,” he said, and then my sisters and I demonstrated the other hand signals that we had all come to associate with what he wanted or needed over the past weeks, from touching his forehead to mean “I want a cold cloth on my head,” to tapping his mouth to mean “I want something to drink,” to making a slight “come here” gesture with his index finger to mean “I want a little piece of chocolate.”  I could see acceptance coming into his eyes, and, although I’m left to wonder if it was in regards to something much larger, at the time I took it to mean that he believed and trusted that we would continue to be able to meet his needs, and I was so grateful for that.

Over the course of the previous afternoon and during the night, we had decided to rethink our plan of having Dad’s bed in the den.  Instead of enjoying being in the center of the activities going on in the house, he seemed confused and overwhelmed, and we hoped the solution was relocating the hospital bed to my parents’ bedroom. 

Because we knew the move could potentially be stressful and could contribute even more to his level of anxiety and confusion, we asked Mom to take the four kids to run an errand to cut down on the number of people in the house so that we could keep things as quiet and serene as possible.  And then, while Dad closed his eyes again for a little while, we huddled to come up with a plan of how we could safely move Dad and the hospital bed from one room to the next.  Fortunately, the bedroom was on the same floor of the house, just around the corner from the den, but there was a short, narrow hallway that included two ninety-degree turns to navigate in between, and there was no way the hospital bed was going to fit through that opening without being disassembled.  Dad had suffered so much from being moved while he was in the hospital, and we knew that the transfer could be scary and even painful for him, and so we turned over several possible strategies before settling on what we thought was the best idea for the move.

The Hoyer lift was out; having to turn Dad back and forth in the bed to stuff the harness underneath him and well as having him dangle in the air as we cranked the lift so the apparatus’s arm would swing him outward was just too risky.  And so, we improvised:  my sisters and I pulled the sides of the sheets underneath Dad up and wrapped them around him in a swaddling fashion.  We lowered the bedrail and the adjusted the height of the hospital bed as low as possible, and then our three husbands swiftly and surely yet very gently slid/lifted Dad straight across from the bed to the couch.  My sisters and I sat on the floor next to the couch to act as “human bedrails” and to distract and comfort Dad as needed.  In a span of less than five minutes, our husbands, working in tandem while throwing out periodic reassurances like “Hang in there, Bill! We’re almost done!”, deflated the air mattress, disassembled the bed frame, moved all of the equipment from the den into the bedroom, and put everything back together, including putting on a fresh set of sheets on the newly-relocated bed.  

I left my sisters to sit with Dad and stepped into my parents’ bedroom to check things out, and I was happy to see the hospital bed all set up, right next to my parents’ king-sized bed.  With the rail lowered on one side of the hospital bed, the two beds were almost conjoined to make one giant bed.  Given the circumstances and what we thought Dad needed, I thought it looked perfect.  But next came the really tricky part: moving Dad from one room to the other.  Again, we decided to forego the equipment (the wheelchair and the lift) and to use strategy and muscle: with Dad still cocooned in the sheets and blankets and with my brother-in-laws clearing the way and providing back-up support “just in case,” my husband carefully lifted Dad from the couch, swiftly carried him down the hallway to the bedroom, and tenderly placed him on the bed so that my sisters and I could quickly cover him up to keep him from being cold.  Dad so obviously trusted his three son-in-laws so completely; he asked them once during the move, “Y’all have me, right?” but other than that he didn’t seem nervous or scared at all during the transfer, and he definitely seemed relieved to be in his own bedroom once the process was over.

Mom and the kids came back and were glad to see that the undertaking had been a success.  We set up a baby monitor in the bedroom with the receiver in the kitchen and, when Dad announced that he needed a little quiet time to rest, we left the room for a while, although I will admit that my sisters and I took turns standing right outside the bedroom so that we could listen and peek around the corner to check on him every couple of minutes.  It felt odd to leave him alone even for a minute, something that we hadn’t done since he’d gotten sick 70 days before.  The whole situation felt surreal and very dichotomous; it was so good to have him home but so overwhelming and shocking that we were where we were.  Watching him over the next couple of hours as he slept, I think part of me had already accepted that our time with him was very limited, but another part wanted (and needed) to believe that he could turn things around and hang on for much longer, although of course I didn't want him to have to if that meant more suffering for him. When I pressed for information during her visit that afternoon, the hospice nurse said that she couldn't predict how long but that she would guess it would be “in terms of weeks rather than months.”  As my mom, my sisters, and I listened to her words, our hearts were breaking.  We wanted to do whatever he needed, and yet what was so obviously happening was something none of us wanted to accept. 

Nancy was sitting in the room with Dad when he woke up, and he told her to tell me to come into the room so he could ask me something.  She did (she thought he was going to ask for medicine), and I did, and Dad asked, “Can I have a beer?”  I told him yes and that I would check the schedule to see what medicines he needed and then after that I would bring him a beer.  He seemed a little perturbed by my answer, and then he suggested not so subtly, “How about if you get the beer first and then do whatever else after that?”

I guess I hesitated for a second, and so he added for emphasis, “Don’t worry; just hurry!”

“OK, Dad,” I said, and as I left the room to get the beer, he called after me:  “Tell everybody: don’t worry, just hurry!” 

I returned as quickly as possible with the beer, and then I held the straw while he sipped it.  After a couple of minutes, he seemed to tire, and he told me to put an extra Foster’s under his bed “just in case” he needed it for later.  He said he didn’t want to have to bother anybody or to wait if he wanted it.  I told him that I liked getting things for him, and, with a half-smile on his face, he responded, “Well, then, I guess I just don’t want to have to wait.”  

Jennifer, her daughters, and her husband each spent time with Dad before they had to leave for the airport that afternoon.  Each of them had to lean in close to him so they could hear him talking with his scruffy voice.  When my nieces told him they loved him and then got up to leave the room, he put forth a visible effort to push his voice into an audible whisper as he called out that he loved them, too.  As my husband, my daughters, and I did when we had to leave the next day, they all thought they still had time to come back and spend more time with him; none of us foresaw the speed at which things would happen over the next few days.

We continued to take turns sitting with or lying in the bed beside Dad for the rest of the day, through the night, and into the next day.  He was still having intermittent pain, mostly in his head and his throat, and he was still having some anxiety, but all in all his discomfort seemed to be much better controlled than it had been in the hospital.  Dad didn’t seem distressed about his own plight; his anguish came from worrying about his family and our future.  He so obviously trusted that we would take care of him, but he also seemed to want to still be able to take care of us, too.  It was like that was the last thing on his Revised Bucket List or on his “to do” list.  

Although we gave Dad some small sips and then later squirts from syringes of water to drink, he was no longer requesting anything to eat or to drink. Little by little, we realized the truth about Nourishment, the substances necessary for growth, health, and good condition.  What he needed wasn’t food or calories – it was re-assurance, comfort, and love.

By Sunday morning, we noticed that Dad’s level of anxiety and even confusion seemed to escalate if there were more than a couple of people in the room with him at once or if he could hear any type of background noise like that from the TV or any music.  He seemed to like having someone there with him and several times patted the space in the bed beside him to indicate that he wanted one of us to lie down beside him in the bed, which we were happy to do.  The pain medicine that we had been instructed by the Hospice nurse to give him on a strict schedule “to stay ahead of the pain” allowed him to rest intermittently, but at times we could see that he was distressed, even in his sleep.  Several times while he was asleep, he called out things like, “I have to check on Mom!” and “Stanley [his younger brother] and I have to finish our homework!”  By the time I had to leave to go home with my husband and my daughters, the worrying was blurring over into his awake-time too.  It seemed like Dad was pulling out all the stops just to hang on.

Before I left, I went over the medication instructions again with my mom and Nancy, who, along with Nancy’s husband David, were staying there.  My daughters and my husband hugged and kissed him goodbye, and he in turn told them he loved them.  As they packed the car, I went into the bedroom, climbed into the hospital bed, and put my head on Dad’s chest.  He was quiet and still.  I told myself that he seemed to be resting peacefully and that that was a good thing, but I couldn’t stop the tears from coming so fast and furiously that after a couple of minutes I had move my head from his shoulder so I wouldn’t get his entire shirt wet.  I told him that I loved him, that I was so proud of him, and that I would always feel so lucky to have him for my dad, and then I kissed him and got up to walk out of the room.  Although I did not realize the quickness of the events soon to unfold, as I looked back at him, so small and so quiet in the bed, I knew in my heart that, despite his struggle to stay with us and ours to keep him with us, Dad was fading away.

Up Next … Part 46 – Paving the Way