Going Home

Today is one of mixed emotions. I am eager to return home. The thought of wrapping my arms around Robby and Scott and picking up and snuggling Timmy brings me to a near giddy state. As eager as I am to be reunited with my boys, I am fully aware that I may be seeing my Dad for the final time. It is a thought that I simply cannot fathom, but in my heart I dread that it is a reality.

I am so thankful that I was able to spend the past two weeks with him. Transitioning into a care taking role for a parent has been enlightening. During the course the day I would occasionally be struck by the gravity of our role reversal. He used to care for me when I was young; and now I am was returning the favor.  I'm sure that it will take time to process all of my thoughts and emotions, but for now I'm just happy that I was able to help.

I'm going to have a difficult time kissing my Dad goodbye for perhaps the last time, but I know that it's time for me to go home. Instead of thinking about the grief,  I'm looking ahead, probably because contemplating the reality is too overwhelming and would cause me to break down. So instead of crying I'm going to try to smile. After all, today I get to see my boys again.

It's Okay

The past 36 hours have been heart wrenching. My Dad took a sudden, albeit anticipated, turn for the worst. He is sleeping nearly constantly, but it doesn't appear to be a comfortable slumber. He twitches and vocalizes, which I worry may be pain. When he is awake he reports that his pain is being controlled, so I don't press the issue. I think that this is just part of the process.

Yesterday I sat quietly on the couch next to him. Although he was sleeping I wanted to make sure that he wasn't alone during those brief moments of being alert. Despite his bloated abdomen, swollen and purple limbs and overwhelming weakness, he has not complained. I don't know if he is truly at peace, if he is being stoic or if he is simply too exhausted to explore those draining emotions.

I, on the other hand, feel like I am hanging onto a fraying thread. My heart is breaking as I watch my Dad slowly slip away. I don't want him to suffer, and although I am dreading his death, I want to make sure that he knows that it is okay. When he becomes too tired, when he no longer wants to keep fighting, or when he is weary of the pain, he can let go. We will miss him dearly, but we will be okay. We will grieve, but we will smile, laugh and continue to live. Even his beloved wife, although she will be heartbroken, will forge forward.

Today is my last full day with him. I've been gone from my family for two weeks, and they are eager for me to come home. It is going to tear me apart leaving, but I will contend with those emotions later. (Again, denial is my go-to coping mechanism.) For right now, I am going to continue to sit by my Dad and help him with whatever he asks. I love him and right now, his knowing that is my absolute priority.

Guest Blogger

Last month I was approached about being a guest blogger for the disability.gov site. I was honored by the offer and jumped (well, not literally) at the opportunity.  Yesterday the blog I authored was published on their site. 

As I was sitting next to my Dad, watching him struggle with pain and slowly slipping away, the email announcing the publication was a spark of happiness during a gloomy situation.

I hope you enjoy the blog!

https://usodep.blogs.govdelivery.com/2015/03/16/not-the-only-one/

Unspoken Rules

I anticipated a considerable amount of emotional fluctuations during this trip.  Trying to provide comfort to my Dad through the dying process is utterly heartbreaking. Instead of considering the end result of these efforts, I found I am only able to cope if I live in the moment. The ultimate reality is too much to comprehend, and grieving now will do nothing to thwart the emotions when the time occurs.  Again, avoidance is my go-to coping mechanism.

While I knew that the trip would be difficult, I was unprepared about my need to carefully navigate through the treacherous family dynamics. Everybody is stressed which has exacerbated already tender relationships. I have struggled to find my role in his care taking team, but after trial and error I think I have finally figured it out.

I help my dad when requested, but only when his primary caretaker is unavailable.  Helping when the primary is present seems to result in a conflict.  I have taken to asking questions about care to the primary, not the patient. Offers of assistance are misinterpreted as criticism of the care being rendered.

While I have to admit that I am disheartened by the never verbalized rules, at this point I don't have the energy to contest. I wouldn't say that I don't care, nor would I deny being extremely hurt by the situation. I spent much of yesterday crying tears of frustration. After all, being pushed away and rejected never feels good!

 However, at this juncture, I will do anything to avoid conflict because it puts undo stress on my Dad.  I am accepting the rules because I am a guest to a very personal journey.  My voicing my feelings aloud at this time, although it might be feel cathartic in the moment, would not be constructive given the situation.

I will sort through the emotions of rejection and disrespect later because right now I need my energy to focus on my Dad. (Thank goodness I have a blog!) His time is short and I want it to be drama-free. 

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.