We finally got a diagnosis. After all the medical contacts we made. After all the doctor's office visits done. After all the trips to the Emergency room. We finally (mostly) know what is wrong.
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| My rental for the week: Ram 2500 Duramax Tough Diesel. Much needed for all the hauling. |
But first, let us talk about those initial medical profession visits and contacts that we made in the months prior to the diagnosis made (last week).
I understand there are patients out there that go see the doctor and really do not want to be there. They become sullen. Close off. Do not share information unless prompted continually to do so. Fine. Yes, those patients are a pain in the ass. They may be rude and disrespectful. Believe me, I totally understand handling those sort of people and how difficult they can be. But via the Hippocratic Oath, it is the medical professional's job to work through those behaviors and figure out the root cause of the medical issue(s). And my family feels that we have been failed by this process. Clearly my father has been having a lot of issues, especially in 2016. And through all those visits to offices and Emergency Rooms, you would think someone would have stepped forward and said, "Stop. Something is not right here. All these visits do not seem to be fixing the problem. Maybe we are only treating a symptom and not the underlying issue." But, no. No one stepped forward and suggested this.
Instead, for months now, my father has been telling the truth. He has been suffering greatly. And no one would listen to him and truly try to figure out the why. Even social services came in. Interviewed him. Spoke to those medical professionals. And their response: it is up to Dad's doctor to place him on a hold and get him help. Wait, what? I spoke to his doctor and they told me they also submitted a report to social services asking for their help. WTF. So, who helps my dad? Who will step in, when family is pleading for help stating nothing is working and he is getting worse, and provide that desperately needed help?
Do you know how terrible we, as a family, now feel knowing the diagnosis and knowing he was trying to get help by calling 911 and his family? That he has been suffering greatly all this time? In pain and we ultimately told him to suck it up since the doctors stated nothing was wrong. That he was right all along. That all this suffering could have been prevented had someone truly cared to look at the situation and try to figure it out. Let me tell you, I would never have thought to research and come to the conclusion of what his diagnosis is. And I really feel, as non-medical professionals, it is not our job to come to the diagnosis conclusion.
I know it is not our fault. But we, especially my mother, feel a great sense of guilt. And anger. My father suffered, dammit!! And his time left in this world is greatly limited. If only we could have made his last few months/years in this life more comfortable than they have. If only. I know. No sense dwelling on that.
Returning from a backpacking trip to a plethora of text messages expousing the immediacy of the problem, Key words like "unresponsive", "gravely ill", "breathing tubes" all make for a road trip home immensely stressful. Plane tickets were immediately purchased. Key in, my shut down phase. Where I basically stop communicating with others, especially those closest to me as I attempt to suffer in my pain by myself and assess all that I am feeling. I build those walls around my emotional self super high and reinforce them. And for those that I push away, I am sorry. I really do not want to be closed off and aloof.
I have learned a great deal this past week about end of life care and insurance. I now know the difference between palliative care versus hospice care versus acute care. Palliative is when the patient has an end in sight, sooner than later. And that treatment is not much of an option. Comfort and care are what is provided. Palliative is discussing end of life options: to rely on machines to provide life supporting measures versus opting to not use them and thus ending life. Hospice is provided for people whose end is near. And by near, I mean in three to four months. Acute care is for people whose end is also in sight, but in a longer period of time, i.e. longer than 3 or 4 months. Both services provide comfort for the patient, not life-prolonging/saving treatments. That is what rehab programs are for. And, my dad is no longer eligible for rehab care. His end is in sight.
I worry. The nearest Acute Care facility is at least 60-70miles from my parent's house. Which means that my mom could not visit him daily. Which means that he would be alone often. And someone being alone, facing death who is already depressed and scared, is not a healthy recipe for peace and comfort. I feel bad. I want to provide help and be there for him. But my life is more than 1,500mi away from there. I immediately flew home after hearing the news that he was in critical condition and the end very well may occur. My sister and brother in law came home, too. We stayed and watched over Dad. We cried. And sniffled. And imagined a life with him no longer in it. Something none of us had ever truly contemplated.
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| View of Mississippi River from his hospital room |
We helped clean up my parent's home. Transported things that needed transporting and/or removal. Helped care for the dog. Gave my mother a chance to vent and/or "relax" (as much as a spouse can do that when the person you have been married to 45+ years is facing death and the medical bills keep piling up). I learned a lot about medicare and medicaid. And am glad that there is coverage available for his care.
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| Transported ~700lbs of books from the home. At least another ton left to go. |
It is hard to see your parent in a hospital. Hooked up to respiration machines (intubated), knowing if they are removed, that is the end. I support my father and whatever decision he comes to. I feel terrible knowing his frustration at not being able to verbally communicate. Attempting to use hand signals, nods of the head and writing things down...and then attempting to decipher the scrawl. I am afraid I will never hear his voice again since his life is now dependent upon those machines to breathe for him. I feel bad that I never once saved any of his multitude of voicemails he has left me over the years.
I am thankful to be dating someone familiar with death and the process of dying. Someone who can listen to me explain what I am going through and feeling. And offer up their experiences and thoughts on the matter. I think that alone has helped me immensely. For the majority of my life I have viewed death as a process. We all will reach it some day. Some sooner than others. It should not be a thing feared. It is another step in the circle of life (yes, thank you Lion King, for spreading that mindset). But this is the first time in my life I have been faced with the impending death of a person that I care greatly about. A person that has always been in my life. It is strange to think of life without that person. I know my life will continue on. But I think what stresses me out the most is thinking that he is scared and frustrated and no happy. Beyond all else, I want him to be at peace. I want to provide him with happiness. And I am afraid I am failing at that.
I am now back in Idaho after being by his side for the past week. Shuttling between the CCU at the hospital and home. Trying to be strong and not cry, but at times, failing miserably at it. Tracking down doctors to explain to both him and us what is going on. Joking with the nursing staff. Telling Dad how much I love him and explaining day to day activities to keep him occupied. Watching him express his frustration at being tied down to prevent his tubes from being pulled out. Seeing him unable to talk and attempting to communicate however he can. Watching his face when the doctor explained the diagnosis and eventual outcome and life expectancy. Holding his hand. Cherishing the time I have left with him.
Returning to work today was hard at first. I communicated my desire to supervisors prior to returning that I did not want to be asked about my father and wished for my coworkers to not address it. Which no one did today. I had multiple people walk about and pat me on the back. No words exchanged. I nearly cried every time. I have gotten much better as time has gone on. I can talk about Dad to my close friends and not break down. It is what it is. Or as my UMC put it: "Death is easy. It is the dying that is hard." And truer words could not have been spoken. So very true.
So I will continue to try to find volunteers to go spend time with my dad and get therapy dogs in to give him comfort. I may not be there to provide my own. But knowing that he is getting care and is happy is what I shall continue to pursue until the end...whenever that will be.
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