Changes

Since the moment my dad went on ahead, I've noticed a pattern of paradoxes that has emerged: as he took his last breath, I was simultaneously glad he wasn't suffering anymore but so sad for so many other reasons. I was grateful to have had him in my life for as long as I did, but I felt (and still feel) angry, resentful, and desolate about the fact that I didn't have more time with him.  And after spending time helping to care for him around the clock during the ten weeks he was sick, with his passing I suddenly felt restless and fidgety - but at the same time I felt wearier than I had ever felt in my life, with the dull ache of grief settling into my bones from the first day I had to spend without him.  

Over the course of the past 22 months since my dad died, I've gotten better at some things and worse at others. The dichotomies of these changes in me have been very unexpected, unfamiliar, and sometimes even unexplainable; all of them, however, came as a result of the impact of loss and have caused me to have to reorganize my thinking and my patterns of actions in many ways.

When my dad got sick and throughout the duration of his illness, I felt like I had been forced to take off my rose-colored glasses; from that point on, I couldn't avoid thinking that Karma was essentially bullshit and that there's no such thing as justice.  That was nothing, though, compared to the thoughts that came after his death; at that point, those same glasses were shattered, in pieces, smashed on the ground.  I know now that there's not much - if any - control to be had over bad things happening to anyone, including me, at any time.  I guess I always thought that real insurance (and assurance) came from the kind of cause-and-effect relationship that I believed in before my dad got sick: if you live a good life, both in terms of being kind and giving and in taking good care of yourself, then you will live for a long time.  How can one NOT see the logic behind that?  But, as I came to see, that is absolutely not true.  

The realization of such randomness has effected two contrasting feelings in me - a sense of fearlessness, because, really, carefulness doesn't matter, and also a sense of terror, because, really, carefulness doesn't matter.  I don't know if that even makes sense - but I do know that the fluctuation between those two things can be exhausting and confusing, and I haven't yet been able to figure out how to reason away either of them.  I can see myself walking on a tightrope suspended high over the ground - and I can picture myself cowering in the corner.  Both with blaring vulnerability, and not at all the way I want to be.

Since my dad's diagnosis, I've done a lot of reading about cancer.  Every time I read something or hear something about risk factors and early warning signs, I feel a knot in my gut.  I want to yell a warning of my own to people who may also be reading the same information: Nothing is for sure.  No one is safe.  You can try to live clean, you can do all the right things, you can deprive yourself, you can avoid risks, you can live on a deserted island with no radiation, no cell phones, no microwaves, and you can eat whatever kind of diet you think is best, but YOU ARE STILL NOT SAFE.  And so there is the anger - and the fear that fuels it.  For like C.S. Lewis wrote, "No one ever told me that grief felt so like fear." 

And it does; it really does.  Fear brings out so many things that I just don't believe were present in me before this tragedy - fear that there is something lurking, fear that I have no control over anything, fear that I am messing something up along the way that cannot be taken back, fear that time may be limited for me or for someone else I love, fear that I may go off into the deep end, fear that I am too indentured in grief and loss to do what I am supposed to be doing, physically and philosophically.    

One thing that continues to shock me about grief is how draining it is, both physically and emotionally, even this far out.  It's such an assault to the system on so many levels.  But, with as tired as I feel most of the time now, here's another irony: I often can't sleep.  Many nights a memory involving my dad plays over and over in my mind.  Sometimes that thought is a happy one; other times it isn't.  Regardless, though, and even when I'm not thinking about him, the insomnia seems to have set up camp on a permanent basis, further adding to my weariness.  That tiredness affects my health, as expected, and also, I'm sure, my attention span and my short-term memory, which haven't been at their best either for quite some time. 

The way things are now, I have to work to see the magic in things much of the time.  It's still there; at least I am aware of that - it's just that I have to remind myself of it, and I know I am at risk for not seeing it as I used to do so easily.

Sometimes all I want to do is to be by myself, to regroup or to cry or at times just to keep from spreading my sadness any more than I have to.  At other times, though, I can hardly stand to be alone; I recognize that I need to be around people, especially those who care about me and - even better - those who know what's going on with me and those who try to understand.  

I am, I think, much better at being supportive to others in difficult situations and more empathetic or, in some cases, sympathetic towards others these days.  Don't get me wrong: I cared when I heard about people going through hard times before my dad got sick; I just didn't GET IT on the level that I do now.  I now realize that it's a blessing to me to be in a position to help someone else who needs support, and I think I'm more in tune with what to say or do in certain situations because of my own experiences over the past couple of years. 

At the same time,though,  I am less tolerant of what I have come to see as drivel and drama.  I have a hard time nodding in complacent agreement when I hear someone say they just had the worst day of their lives – really?  Did you hear that someone you love has a death sentence coming down the pipe?  Did you watch a loved one die?  Did you bury a family member today?  Then your day wasn’t all that bad.  OR – when people say “I almost died!” when they’re talking in superlatives like “I was so shocked” or “It was so hot” – really?  From listening to complaining to watching someone make a big deal out of what is essentially nothing, I guess I am just more intolerant of certain things these days, which admittedly isn't fair of me, considering I certainly need more than my fair share of tolerance and understanding from those around me much of the time.  

I read several blogs written by fellow grievers, each with their own set of circumstances, story, and timeline, and each with lessons for me along the way. One thing I am more aware of now is that constant talk about sadness and anger and unfairness aren't necessarily the most pleasant to read, and more to the point aren't the most productive.  I think we as a society see something that is broken, and we try to fix it; when we are sick, we do what it takes to get well.  And I think as such our tendency is to want to hurry up and heal or to get over our grief as quickly as we can, but I'm not sure that's the right thing to do.  Most people who are actively grieving seem to be doing it in private for the most part, and maybe that's not the right idea either. 

And so then there's the guilt, and the shame, and the secrecy of the sadness of it all, which is a point of sadness within itself.  I realize this may seem a bit sensationalized, or repetitive, or self-centered, as if I think I am the only person who has ever suffered a loss.  I don't mean for it to be like that - I guess I am just searching for some kind of answers, and, oddly I know, I also realize that those answers really don't exist.  There is no pattern to grief; there is no to-do list that will ease the pain of the loss.  It truly is what it is, because, as Dad would say, what else would it be?

Some of the changes I think are positive though ... I am much more observant of the Silver Linings in my life; I don't go a day without recognizing how lucky I am, even on my worst days of grieving.

I take more pictures.

I appreciate the positive in my life - and the people, even more than I did before.

I write more - because it helps me to sort out my feelings, and because one of the things that hurts the most about having lost my dad is realizing that some of his stories are gone, too, and I want to try to save as many of those as I can.

Part 31 - Battling

Continued from Part 30

During the 75 days that Dad was sick, there were parts of him that were still the same from our pre-cancer days, but other things were very changed.  The help that he needed was all-encompassing, exhausting, stressful, sad, and draining, but so worthwhile; the only time while he was sick that I felt like I wasn’t free-falling was when I was right by his side.  His needs and what felt like the constant activity and vigilance that were necessary were very effective at counteracting our own panic and the sadness and, truth be told, in a weird way, the reality of it all.  When I was with Dad, I couldn’t worry about Christmas shopping or paying bills or much of anything else; it took 100% of my focus just to meet his needs.  When there were two or more of us there with him, one person was able to be right with him, and the other person could get a little sleep, make something in the kitchen, sort the medications, make phone calls about Dad’s care, do laundry, or work on setting up something else for Dad like the ever-changing therapy schedule, a doctor’s appointment, or the rare outing in the community.

On a daily basis, Dad was battling almost constant headaches, overwhelming fatigue, loss of appetite (he said, “I’m ZERO hungry!” whenever food was offered), and a pervasive feeling of being cold (he frequently asked if the heater was broken or if someone had turned down the thermostat, even though it was set on at least 75 degrees).   In typical form, though, Dad mustered his strength and pushed on, as did we.

On the Sunday before the MRI and Round 3 were scheduled, my sister arrived at my parents’ house from California.  Dad had been talking about wanting to go to see a movie for a while, and so my sister and Mom called the movie theater nearby and spoke to the manager about the accessibility of the restrooms there.  Like the trip to Duke, it wasn’t enough for Dad just to have access to a bathroom with a stall with grab bars; he needed constant cueing to use the walker and to guard against other obstacles like a wet floor and thus wasn’t safe unless someone could directly supervise him at least in getting close to the toilet, from the toilet to the sink, and from the sink to the door to exit the restroom.  As we had discovered on the way to North Carolina, most places don’t have single-stall type of facilities, and neither did the theater.  When the situation was explained to the manager, though, he offered to supervise Dad on his trip into and out of the men’s room, and so the “Let’s Go To The Movies” Plan was put in motion.

Mom purchased tickets online to avoid a wait in the cold, and they loaded up into the car.  In another example of a change in his usual personality and tendencies, though, when they pulled up in front of the theater, Dad announced that he didn’t really want to go.  Concerned that he would regret his choice later, Mom and my sister tried their best to talk him into going in, but to no avail; thinking that it would lure him in, Mom even went into the theater and bought a tub of popcorn – Dad’s favorite thing about going to see a movie – and brought it back out to Dad in the car.  Dad was insistent, though, and so the mission was scrubbed.

Once back at my parents’ house, the strain of the day’s events and the sadness of everything going on was evident in Dad; tears flowed as he told my sister and my mom that he didn’t think he would ever be able to do the things he wanted to do again.  Like the workings of his memory and the sensation in his left arm that seemed to come and go and that we just couldn’t really predict or comprehend, Dad obviously had a lot going on emotionally.  We were right there with him to support him, but he needed more. We felt like we were paddling against the tide, with no lifeguard in sight.  

When my sister called to tell me about the afternoon, I put a call into the oncologist.  I told him about Dad’s anxiety about the upcoming MRI scan, and he said that he would call in a prescription for an anti-anxiety medication to Walgreen’s.  I asked again about an anti-depressant for Dad, and the doctor said we could discuss that at the upcoming appointment.  I told him that we are all discouraged at the lack of progress.  He said he had been wondering about that too and that he wasn’t sure if the Avastin needed longer to work in this case or if there was some brain damage from before or during the surgery that was either irreversible or just taking longer to heal regardless of the Avastin dosage.  He said he was interested to see the results of the MRI scan, which we would go over at the appointment on Wednesday, and that he would speak to the team at Duke about the plan after that.

In the meantime, my sister had made contact with the neuropsychologist from the rehab facility, the tall runner-looking guy to whom Dad had responded so well before our trip to Duke, and the guy had agreed to work Dad in for an appointment right after the MRI scan on Tuesday.  With the MRI at the hospital downtown, the appointment in another part of town, and then the candlelight service at a church near my parents’ house that evening, it would be a very full day, but we were hoping for a good result from all three.

                       Dad loved "The Sound of Music," and this song makes me think about how

                          we felt like we were climbing mountains, fording streams, and following

                                    rainbows with all the love that we had, in search of a dream.

Coming soon ... Part 32 - Falling

Part 8 - Safety First

Continued from Part 7

Just after Dad was moved to a room on the neuro floor, reinforcements arrived; my husband and my daughters, my youngest sister’s husband, and my brother joined us, a welcome distraction for Dad and much-needed support for my mom, my sisters, and me. 

The first order of business in the new room per Dad’s request was getting his face shaved.  Due to the lingering problems with sensation and strength in his left arm and hand (his dominant), Dad needed help shaving, and my brother-in-law volunteered for the job.  “I feel better already!” Dad exclaimed when they were done.  He wanted his head shaved too, but we reminded him that the surgeon had said the incision couldn’t get wet yet so that part had to wait. 

“I think I’m finally tired of watching football,” he commented later that day.  He was an Auburn University graduate and a fan of their football team, and so we thought he would enjoy watching the game on TV that afternoon.  His attention span and his energy level were not up-to-par, though; he couldn’t handle watching TV or even having a conversation for more than a few minutes at a time.  He repeatedly requested that Mom bring his cell phone and/or his laptop to him at the hospital; at one point he even said, “She keeps hiding it from me so I won’t do work.”  We pointed out to him that he had just had brain surgery a few days before, but he was unwavering in his campaign to get possession of especially the cell phone back.

  

Full disclosure:  we weren’t just worried that Dad might overtax himself if he was given his cell phone and/or his laptop. We wanted to protect the brokerage company for which he worked, his clients, and most especially him because we knew that his memory, reasoning, and impulse control were skewed.  We couldn’t tell him that, though, and he wasn't able to realize it himself, but as a result he was frustrated and sometimes angry about the lack of access and independence.

As an occupational therapist, I started asking about Dad getting OT and PT right after his surgery, and the Pass the Buck/Wait and See Game continued.  First we were told he would get therapy when we got to a regular floor instead of the ICU.  Then we were told they “don’t do therapy on the weekend (even though he was moved to the regular room in the early afternoon on Friday).  Evidently, the doctors weren’t aware of this policy because when the physician’s assistant for the neurosurgeon (a different one from the one who gave me a fake non-working cell phone number the night before the surgery) came to visit on Saturday, he asked how P.T. was going and was surprised when we said it wasn’t.  About an hour later, OT and 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 checked his movement and strength (fine on the right, not good on the left).  **Side note:  Dad wasn't really discouraged or bothered by his newly incurred "issues" or the fact that he had gone from being Ironman-ready to needing help walking in less than a week, which speaks very loudly to the point that there was as much of a cognitive deficit present as there was a physical one.**  The therapists let us know right away that they recommended a short stay in an inpatient rehab hospital and that they thought we should go and visit a few in the area right away since the doctors were already talking about discharge in a couple of days. 

Dad wanted to go home, and we wanted him to be able to, but the more we watched him struggle with the physical aspects of tasks and – even more to the point – the cognitive aspects, particularly the safety precautions and his own limitations despite repeated warnings from the staff and from us, the more we became convinced that it wouldn’t be safe to take him home yet.  We considered taking him home and setting up the therapies on an outpatient basis, but we were told that outpatient rehab would take place two or three times per week at the most, and of course it would require someone to load him in the car and drive him to and from a therapy facility.  (The logistics of the latter were more extensive than I feel like I can clearly explain.  Let's just say that Dad's impulsiveness and his "I can do it myself" attitude were not a good combo.)  Obviously, we thought, the more therapy he gets in the acute phase of recovery, the more quickly he will regain function, and so we changed our focus from taking him home to finding the best inpatient rehab facility in the city.

That Sunday, on Halloween Day, we toured two rehab facilities.  (We considered a third but it was part of a nursing home, and we knew that would be too hard of a blow to Dad, and - truth be told, although I am sure this was not part of our thought process at the time - on us.  I kept picturing us driving up to the nursing home/rehab facility with Dad in the car and hearing him say "What the hell? Are we looking for another nursing home for my mom?")

The first rehab facility we toured was near the hospital where Dad was; there seemed to be lots of patients there who were fairly young and who had a military background, which we thought Dad would prefer more than geriatric stroke patients, but this place had strict visiting hours for family which did not include overnight stays.  Basically, they didn't allow anybody but the patient to be there during any unstructured time - the time that was exactly when Dad wasn't safe when left by himself.  ("What the hell??" indeed!)  They said they wanted the patients to rest and/or to work on doing things for themselves during that time, which sounds great unless someone has had a series of traumatic brain insults like Dad had (the tumor, the lack of oxygen when he stopped breathing during the MRI, and the surgery).  Other than proposing the use of a "bed alarm" which would be set to sound at the nurses' station if (when) Dad got up by himself when he wasn't supposed to, they could not give us a plan for how they would keep him safe since he persistently tried to get out of bed and walk around without the walker and without paying attention to safety rules.  The bed alarm was not nearly adequate; he could easily have been up and in the floor with his only-partially healed skull/brain knocked against the floor by the time someone heard the alarm and checked on him.  The lack of plan, and our concerns about his safety, very obviously, were a total deal breaker.

The second place on our list was about 15 minutes further away from my parents’ house and was a rehab floor in a hospital; our reinforcements had to leave at that point and so Mom stayed at the hospital with Dad while my youngest sister and I continued the reconnaissance.  (The hospital where Dad was didn’t offer rehab stays - once the patient was "medically stable," he was to be discharged.)  This second place seemed to be well organized, and, when we spoke with the admissions coordinator and told him we were seeking a very short-term stay with aggressive therapy services, he said that could be arranged and that family could be with him 24/7.  Done.

We returned to the hospital and told Mom about our findings, and then she told Dad that she wanted him to go to rehab instead of going straight home to speed up his recovery.  He was onboard with the plan even though he really wanted to go home; he was highly motivated to “get back on track,” he said.

Next in our story … Part 9 – Going to Rehab