The latest edition of Tricycle magazine has an article entitled “A Good Enough Death” that is really well-written. It shares the story of a guy with cancer that is cared for by his sisters and an ex-girlfriend.
The difference between this guy’s caretakers and myself was that I did not know I was watching the dying process. I was watching every sign and symptom and taking each and every occurrence as something I would have to deal with in the long-term. I did not understand the significance of what I was witnessing.
Nine days before Barry died, I had taken him to the doctor;s office. His behavior had changed radically in the previous month. I asked the physician’s assistant, “When do I call hospice?” She poo-pooed my question with, “That could be month’s from now.” She then enrolled Barry in a program for people that don’t qualify for hospice. I believed her and took her at her word.
He stopped eating that weekend. He didn’t have an extra ounce of fat on him, but I still thought he could live another couple of weeks. After the weekend, on Monday, I called the program and asked for someone to come out for an evaluation. They said they could send someone on Wednesday. He qualified for hospice on Wednesday, we got him onto hospice Thursday, and he was dead Friday.
The day he died, I was giving him morphine every hour. I called the hospice nurse because the home care worker said I needed to (due to the mottling on his feet) and because there was no way the morphine would last all weekend with me dosing him every hour. I needed a greater supply than the teeny container I had been given. The hospice nurse arrived and declared him dead within one minute of arrival. I may have given that last dose to a corpse.
Before the nurse arrived, I was wondering how and when to put him into a nursing home and how I would handle all the mental and physical breakdown I was witnessing. I didn’t think he would last six months, but I assumed he would survive the weekend.
I am so glad I told him I loved him and held his hand before the hospice nurse arrived. I even heard the death rattle and wondered if that’s what it was.
I was so clueless.
I was there for every little detail of Barry’s death, comprehending nothing. I did not understand the significance of anything I was witnessing. I don’t know if I was fully present like I could have been.
The frustration comes from feeling misled. I was believing people that understood no more than I did, but spoke with the voice of authority. I accepted their assertions because I knew no better.
Being present is not a substitute for understanding what is occurring. I might have done things differently had I understood what was going on.
Is all of life like this? God knows I feel clueless much of the time. I continue to make plans. Are they meaningful on any level?
I have felt so stuck for so long. I don’t know what the cure is. I have believed such garbage in the past, especially religious rubbish. I now trust no one, including myself. I have been wrong. They have been wrong. We are all so painfully wrong. The only thing worse than not knowing is believing people who don’t know what they are talking about but pretend that they do. The emperor has no clothes. We are all naked.
I’ve been dealing with authority issues lately. Not in the sense of my having problems with authority figures, but in the sense of what is reality-based and what is not.
At work, we have several new managers. I have no problems with any of them in particular. However, one of my co-workers, the other day, told me that Manager A had told her to do “recovery” (making sure the dressing rooms were cleared out). Meanwhile, racks were coming out and I was putting the clothes away. Manager B comes up to me and asks if I had been getting any help with the racks. I said that, to my knowledge, my co-worker was supposed to be doing recovery. Problem? Manager B is unaware of Manager A’s orders. Communication problem. I talked the other day to Manager C about the incident and told her that there needs to be communication amongst management because I don’t want my co-worker fired for doing Manager A’s bidding and not Manager B’s. I have no power over any of this.
Later in the day, another co-worker was telling me that Nancy Pelosi doesn’t have control over the House Democrats that she should. I said, “That’s not actually true…” I did not mean that she really does have control over the members of her party. My meaning was that it is simply not in her job description to have control over other House Dems. Adulthood does not work that way. The newly-elected members are not ultimately accountable to her; they are accountable to the voters that put them in office in the first place.Whether the voters want them to agree with Pelosi or disagree with her,that is what they will do. She knows it is beyond her control. Period.
I had general durable power of attorney over Barry. That’s about as much control over a human being as is possible. And I still respected his free will and choices as much as possible. I could have thrown him into a nursing home and did not.
The only times I have ever seen the kind of control my co-worker thinks Pelosi should exercise has been in various cult-like religious settings. When people fall in line with whatever a leader says, they have abdicated their adulthood. They are now children wearing grown-up clothes.
The reality is that authority is not pro-active; it is reactive. Authority figures can only impose consequences after someone does something against the rules. The boss can fire you.The parent can take away your X-Box.
Do Republicans seriously think Pelosi can get her members to fall in line with her? She is not the Dictator of the House, only the Speaker. That level of authoritarianism is exactly what scares me about them.
My conservative co-worker scares me a little. And amuses me even more. He is probably a good twenty years younger than I am. He is going to learn some very hard lessons. I’m glad I have no real relationship with him. I respect other people’s choices, whereas I don’t think he is capable of that.
We all have choices. We can all do whatever we want. And we all have the right to impose consequences on each other’s behavior. Most people understand the first idea and miss out on the second one completely. I guess these are lessons we all must learn the hard way.
Life is hard sometimes.
I haven’t been getting any of the jobs I have been applying for. Thank God for Goodwill. They really appreciate me. I just wished my job used some, any, of the skills I worked so hard to obtain.
I have stopped over-valuing my MBA. There are too many baristas out there with advanced degrees. Having the education without the real-world experience is a handicap to finding employment. People need to get the experience first and then, and only if their boss says “If you want a promotion, you need such-and-such a degree”, get the degree. Then they have both experience and education. They are good to go. The sky’s the limit.
My problem is that I got my degree and then spent the next six years taking care of Barry. The reality is that I will never be “the right fit” for a position because there will always be someone with more experience than I have. This is why people put their loved ones in nursing homes: they have to get on with their own lives. They simply cannot put their lives on hold indefinitely. People don’t go into nursing homes, generally, because their health takes a sudden downward turn. No. People go into nursing homes because their family members just can’t take care of them anymore. It’s too physically, emotionally, and career damaging to the caretakers. By the time someone goes into a nursing home, their health has usually been going downhill for years.
Reality: I should have put Barry into a nursing home a few years ago. But I would have felt guilty and he was so remarkably self-reliant for so long. And I would have had to sacrifice all savings for Medicaid and Medicare to pay for it. I truly thought I was doing the right thing. I was soooooooo wrong. And now I am paying the price. I truly feel like I am being punished for doing what I mistakenly thought was the right thing by the job market. I knew I was making a sacrifice but I did not fully understand the permanence of the sacrifice. He’s been dead over a year and the sacrifice is ongoing.
I even thought of ending myself. I may still do it eventually, but I am too exhausted to deal with it now. My car needs fixing. My apartment has bugs, which I think might be termites. And the people at work genuinely appreciate me. I do not take that for granted. When that is no longer enough to keep me up and running, all bets are off the table. I live in a bad neighborhood and I live alone now. No one would blame me for getting a pistol for self-defense.
So many choices seem like “a good idea at the time.” Such famous last words.