Settling In

While it is wonderful to see my Dad settled back in his home, the transition has come at a cost.  The household is tense, which is understandable considering the situation. Everybody is worried, tired and anxious about the path ahead. I feel as if I have to step on egg shells which, let's face it, has never been my strength. Regardless, I am trying to be as accommodating as possible in order to diminish as much of the tension as possible.  Reminding myself that my priority is my Dad has helped me temper my reactions. At this juncture, my only goal is my Dad's comfort. 

My Dad is set up in the living room, close to big windows and his television (typical man with that request). He has enjoyed the activity of the house and talking with friends who have come to visit. Witnessing these exchanges, I am reminded that sometimes less is indeed more. My Dad fatigues quickly and, although his friends are eager to spend as much time as possible, the longer visits render him exhausted. I can't help but think that shorter visits would be advantageous. Of course, even when his health is failing, my Dad is too polite to dismiss his visitors. 

Although the transition to home hospice has been straining, I know that it is best.  He is home in his familiar environment and surrounded by his favorite things. His puppy was ecstatic to be reunited and often comes to the side of the bed for a rub down.  In a few days what is now new and full of tension will morph into a comfortable routine.  At least, that is what I am hoping. 

Email

After a long day of waiting, we were finally able to bring my Dad home. The Hospice agency, along with my stepmother, did a fabulous job setting up a comfortable spot in his living room. I feel a huge sense of relief knowing that he will be comfortable in his own home. It certainly takes a special soul to go into that line of work. I know that I lack the needed fortitude for that occupation. Seeing their compassion in action has restored my faith in humanity.

As we waited for the transfer to home, my Dad and I spent a quiet afternoon together. It was wonderful to talk and reminisce when he was awake.  During his increasingly frequent naps I was able to get a considerable amount of work done. I am accustomed to working while trying to wrangle a curious crawler.  Being able to finish my reports in  the quiet hospital environment was a treat! I was reminded about how much I am able to accomplish when I am not constantly interrupted and distracted. 

After plowing through some appeals I finally took a break to check my email.  I was nervous when i discovered an email from my Representative's office.  I had requested a meeting to discuss insurance fairness for amputees last week, but I have to admit that I didn't have a lot of faith that I would receive an immediate answer. (I was prepared to pester and make myself such a  nuisance that a meeting would be granted simply to shut me up.)

I took a deep breath to recenter myself and calmly opened the message. I almost squealed with delight when I read that my request for a meeting was granted! Okay, in full disclosure I did wake up my Dad with my joyful exuberance. He may be sick, but the smile on his face let me know that he understood and that he was rooting for me. 

Today will be spent making my Dad comfortable and running errands to help my stepmother. During the increasing quiet periods I have a new project: I have to create my talking points for insurance fairness.  I have a big meeting coming up, and I plan on bringing my A game.

Transition to Hospice

If all goes according to plan tomorrow, my Dad will be leaving the hospital. I know that he is anxious about transitioning to home hospice care, and I can't say that I blame him. I try to put myself in his situation in an attempt to channel his feelings and emotions. I immediately feel overwhelmed as I absorb the situation from his perspective. While I think that I would be eager to be in a familiar environment, I am sure that I would be terrified by the unknown. Hopefully the hospice nurses and being reunited with his puppy, Solo, will help soothe some of his emotions and fears.

I'm going to be staying here for a few more days to help get him settled. My stepmother runs a restaurant and is working there much of the evening and night. Even though he'll be sleeping, I will feel more comfortable knowing that he isn't alone. The thought of something happening in the wee hours of the morning and his being alone and unable to get help, is unacceptable. I am so thankful that I am in a situation where I can stay with him with minimal worries. (I'm a Mom so I never completely stop worrying even though I know that the boys are being well taken care of and spoiled rotten.)

I fully anticipate today being stressful, full of emotions and chaotic as we maneuver through this transition. I hope that all of the stress stays hidden from my Dad because frustrating him will have no benefit. Wish us luck as we embark on the next step of this unwelcome journey.

Hope

While I wish that this trip was more vacation oriented, I am eternally grateful to be here with my Dad. I spent the weekend with him in his hospital room trying to do whatever I could to make him happy and comfortable.  Today we will be leaving the hospital with the plan to receive hospice care in place. Through discussions with doctors, nurses and social workers, I have heard the terms "palliative care" and "curative care" more times than I can count. I understand that my Dad is not going to be cured and the goal is to provide as much comfort as possible during this transition.

I have learned volumes through this process.  I have researched pancreatic cancer so thoroughly that I knew the answers to questions asked to the doctors. I understand the road that we are traveling and know what we can expect during the final stages.  After his diagnosis I felt compelled to learn about the stages and, as morbid as it may seem, the anticipated path to death.  I felt oddly empowered by the knowledge of what lies ahead.

More than the academics of the disease, I have learned about hope. I have come to realize that hope is a fluid state, constantly changing depending upon the situation.  Embracing the ever changing definition of such a small yet powerful word has helped me accept the inevitable.

Upon hearing his diagnosis, I was hopeful for treatment and a cure. I was hopeful that he would return to his driven self and that cancer would be defeated. I was hopeful for the miracle ending. 

As I gained knowledge through research and while his condition quickly progressed, I realized that my hopeful expectations also adjusted. I began to hope not for a cure but for time. Time has become such a precious commodity, and I was hopeful for more moments and memories.

Upon learning that his time is limited, I was surprised that I haven't abandoned hope, but have again redefined my expectations. Now I am hoping for peace and a smooth transition.  I'm hopeful for the absence of fear and pain. I'm hopeful that our love will help ease the anguish of a life cut too short. I am hopeful that he knows that he is loved. I am hopeful that he passes while dreaming of heaven and wakes up to realize that he is among angels. 

I am planning to stay with my Dad as long I am needed. His body may be failing, but his mind is still sharp. I am hopeful that he will remain alert and at peace despite the ravages of this horrific disease.

Snow Fun- sort of

Yesterday the snow began to fall early in the morning and continued well past dark. Scott and Robby both had school called off the night before in anticipation of the storm, so both enjoyed sleeping in without worrying. Timmy and I quietly played in the living room until the others rolled out of bed. (I tried to convince Hamlet that he didn't need to wake up so early because it was a snow day, but he seemed unimpressed by my logic. I am close to abandoning all hope of his sleeping until a respectable time.)

Robby spent a few hours playing in the snow with his friend, but I opted to keep Timmy inside with me. I am still in a test socket and I worried that the cold and wet snow might cause the plastic to crack. With my going to Texas today I was not willing to take the risk, even if being cautious meant missing out on beating the kids in a snowball battle. 

Instead of playing outside I assumed Momom duties of baking cookies, prepping hot chocolate when requested and dressing, undressing and drying the snow clothes each time they came inside to warm up.  Helping Robby into his garb for the third time I found myself hating the inventor of snow bibs.  While functional, the clothing is difficult to get onto a fidgety, excited 8 year old.  And to think I have another 8+ years of wrangling bulky snow clothes onto kids!

Today the boys have off school again, which is not a surprise with the almost foot of snow that fell yesterday. I'm glad that they are home because it means that I won't have to drive myself to the airport. I wasn't looking forward to schlepping my bags from the long term economy parking lot to the terminal. I suppose I'm a little spoiled with the curb side drop off.  (I know that they will be stuck in traffic, especially when they come to pick me up Tuesday night, but hopefully they won't mind. Or if they do mind, I hope they keep their complaints to themselves.)

I'm headed to Texas and I'm relieved that I don't have to stress about driving to and from the airport. I'm certainly worried about everything else! My Dad isn't feeling well and I worry about his prognosis.  I am trying to avoid thinking about the inevitable and instead choosing to concentrate on the fact that, at this moment, he is still very much alive. Mourning now won't do anything to lessen the pain in the future, or at least that is what I tell myself.

Robby and Scott are going to have a "man's weekend" while I'm away.  It was decided that Timmy is too young to enjoy the bachelor based revelry, so he is spending some special time with my Mom.  I'll miss them both but I know that they are being spoiled and will be happy. 

Hair Gel

Yesterday afternoon I drove Robby directly to the barber after picking him up from school. I honestly don't remember the last time he had a haircut, but I do know that he looked like a ragamuffin when he bolted out of the house with his lunchbox in the morning.. With my going out of town to visit my Dad this weekend, I wanted to knock one small thing off my ever-growing to-do list.  Thankfully getting a haircut is no longer a traumatic event, so I figured it would be easy to knock out before the snow storm rolled into the area.  (Incidentally they are both home from school again today.)

I was taken back when we walked into the barber shop.  Robby strutted up to the desk and carefully signed his name into the log. Instead of waiting for me to instruct the barber, he requested that his hair to be "epic cool and awesome, but not too short because he doesn't want to look like a punk."  Watching him walk back without giving me a second thought, I was reminded that he is growing up. He is quickly transitioning from little to big kid, and I don't mind admitting that I am not ready!

I allowed Robby to take control over his haircut, and he emerged with a completely new style. He looked so grown up, but the request for a lollipop reminded me that he is still a kid. Our days of wash-and-go style are gone because he was introduced to the wonders of hair gel.  He is quite impressed with the styling product, although I suspect we are going to have to reinforce moderation in use.

Mr. Bill came over to visit before the storm and Robby took the opportunity to unveil his new do.  Mr. Bill was duly impressed, telling Robby that he looked "smart and handsome" and assuring him that the ladies were going to love it.  "I know Mr. Bill.  Chicks dig hair gel, right?" 

Sigh.  Did I mention I'm not ready for him to grow up?

Fight for Change

Yesterday the weather finally cooperated, allowing me to pick up my new socket. My goodness, what a difference! The aches and pains that had slowly become the norm are gone. I had forgotten how liberating the absence of pain can feel. 

Sitting in Elliot's office, waiting for the final tweaks on my new socket to be complete, I was reminded about how lucky I am. I was prompted to get a new socket because I was experiencing some pain. Changes in limb volume and shape is something  common for amputees. What is unusual was my ability simply to call the office and begin the process. I am fortunate to have a prosthetist who does not accept pain as par for the course.

Too many amputees are rendered with a less-than-ideal fit because their insurance won't approve a new socket and/or their practitioner refuses to fight the denial through the appeal process.  These individuals are stranded in limbo, trying to cope with an uncomfortable device or foregoing the prosthesis altogether. I have no doubt that Elliot will have to battle with Elsie to get paid, but he never allows my comfort to become collateral damage.  I am all too aware that few practitioners operate with these principles.

I become so frustrated when I contemplate the spiraling insurance abyss that prosthetic wearing amputees must try to traverse. Right now insurance companies are calling the shots, and amputees are suffering with inadequate components and ill-fitting sockets.  Something needs to be done to ensure that all amputees are able to access comfortable, functional devices.

The issue is so massive that tackling it feels overwhelming. Perhaps the enormity of the issue is working in the favor of the insurance companies.  Fighting for access-for-all feels like a David vs. Goliath battle which has left the community wringing its collective hands in frustration. 

With amputees trending in popular culture, I can't help but hope that the time for battle is approaching. I see Amy, Noah and even Oscar (pre-conviction of course) as our fife and drummers, setting the stage for an insurance revolt. Popular culture is being inundated with amputees, and perhaps our plea for insurance equity will finally be heard. 

I keep hoping for somebody else to fix the system, but too many people are suffering while we wait. I have come to believe that this issue is so massive that it will require the collective community to work towards a resolution. If we want change, we have to be willing to become involved and stop passing the buck for somebody else to do it for us. I have long believed that our strength lies with our numbers, and it is time that we unite behind this issue.

 I am lucky because I live near Washington DC, I know the issues, and I'm an amputee.  Perhaps it is time that I put my efforts behind the issue.  Today I am going to make some phone calls and schedule appointments with my Representatives and Senators. I doubt that I will receive face time with any decision makers, but I plan on making such a compelling case with the aides that they will take up the banner for insurance equity.  Does anybody want to join me?