Egg Shells are Cracking

I woke up yesterday missing my boys terribly, but a Skype visit with them both soothed my frazzled Mom heart. I love technology! Although I am not there to hold and kiss them, seeing their faces did wonders. (I was especially concerned that Timmy would not remember me, but I could tell by the way his little face lit up when he saw me that my fears were for naught.)

Everyday I see my Dad grow just a little weaker. His mind is still sharp, which is a mixed blessing.  Although his body won't quite work the way he would like, it is reassuring to be able to just sit and talk with him. On the other hand, he is fully aware that his body is failing and expresses frustration and embarrassment over the changes occurring. He has always been a proud man, and experiencing these changes has not been easy for him to accept. 

During those moments he is struggling, I find myself desperate to find a way to ease his pain. Most of the time I come up empty, leaving me feeling utterly helpless.  All I can do is remind him that it is okay, and that the changes will not be his legacy. Still, I wish I could do more. 

I continue to step on eggshells, always cognizant of the fact that I am the guest during a private journey. I escape upstairs as much as possible so that I do not intrude in the quiet time between a husband and wife. I sit with my Dad when his wife is running errands or at work, but other than that I try to disappear.  Weighing the needs and desires of my Dad against the stress and disruption in their home is something I am constantly trying to balance. 

Unfortunately, despite my best efforts, I feel like I am failing.  I have contemplated staying at a hotel and visiting my Dad when his wife needs to run errands or work. Although he protests that plan, it may be the best option.  During this time he deserves nothing but peace.  Although unintended, my being here is obviously creating turmoil.

For the sake of my father's comfort I feel obligated to try to remedy the situation, and physically leaving during the day may be the best option.  I guess this will sort itself out today.

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.