Out in WV, I found a cute little apartment. It was real small, but handicap accessible. I started looking at a hundred I would have to make if I moved to WV, and every single one of them would have to be made in the next 2-3 weeks. OMG.
And then there was Morgantown itself. Absolutely beautiful. Extremely vibrant and busy. I would love the people. They are very friendly. Problem? The hills. There is no flat surface anywhere. Even the parking lot of the apartment I looked at had multiple layers and ramps between the layers. I saw one lady go down a layer without taking the ramp area and getting out of her car to see if she had done any damage.
My car was/is acting funny. Now I know the problem: the cluster. The issue was that the temperature gauge was going toward the red zone and I had visions of being stranded on I-79 or anywhere around there with an overheated engine and no family or friends. I could see me taking Barry to an appointment and being stuck and unable to even tell a tow truck how to find me.
I got home and my toilet decided not to work. I have a corner toilet and am now living with my parents until the situation gets fixed. Drama and trauma.
Don’t get me wrong. We still have to move. We don’t own the house anymore. But I will find an apartment in Lansing. The hundred changes still need to be made, just not all of them in the next three weeks. We still need to get rid of things, etc. But first things first. Getting the toilet fixed. One thing at a time.
I’m in Morgantown, checking out the WVU hospital and apartments.
It is totally overwhelming, but it also feels right.
I’ve been letting myself feel as much as possible. I believe that at least part of the reason people don’t heal emotionally until they are on their deathbed is because that is the only time they have available. It’s hard to meditate and do emotional work as I get lost in the hills of Morgantown and almost get run over by coal trucks. It has been invigorating, confusing, and petrifying–all at once. Holy crap.
Have you ever felt like you should panic? That’s me right now.
In a couple days I am going to West Virginia. I already have hotel reservations and an appointment with a guy from the local office on aging. I have never done any of this. I have never attempted to move alone before. I don’t know what I am doing.
And part of me just doesn’t care. Is this maturity or burnout? Is there a difference? Sometimes, I think courage is just being too tired to give a damn.
I am emotionally exhausted. I have been caretaking for years now.
I am now the emergency room receptionist that tells the guy with the bleeding arm to wait behind the guy with the bleeding chest, who is standing behind the lady who has stopped breathing. If everything is an emergency, then nothing is an emergency. No human can live on the adrenaline rush of panic forever. At the very least, it causes adrenal failure. It is not sustainable. Eight years ago, there was the stage four cancer. The Huntington’s continues to progress. He might have prostate, thyroid, and/or lung cancer now, but that is impossible to know without actual diagnostic tests, such as CAT scans, biopsies, and the like.
And so I continue to make huge, life-altering decisions in the dark. I am woefully uniformed. And yet I must go on.
Part of me says, “What if he gets sick while I’m gone?” The other part responds, “Well, then he gets sick.” I am no longer willing to put my life on hold just in case something might happen. I am done, on oh-so-many levels. If something happens, my parents can call me on my disposable phone and let me know and I will come home. Otherwise, I will simply continue to make plans for myself and him. If he gets frustrated enough, he can actually talk to me and communicate his feelings. That would be refreshing. I don’t even get much of that anymore. My doing absolutely everything and getting no information or feedback of any kind is the exact opposite of my concept of a marriage. There is really nothing much left.
I guess that’s why I am not scared: I have nothing left to lose. I cannot take care of a house and a sick husband. The house is sold. The next steps are obvious and clear. Not fun, but clear. Panic is for people with something left to lose.
“Most people have a question they ask spiritual teachers over and over again, and this is mine: How can I put forth effort and also rest? [italics in original] I open Goldstein’s book to find an answer and come across this line: ‘Abandon those unwholesome states that have already arisen.’…To abandon does not mean in this context that the life in something disappears, but that you let it move on without you….If all management generates an abandoned area, [italics in original] then we know that release is just around the corner. We know that cannot manage all of our gardens, all of our bodies. We know they will abandon us, be released from us whether we like it or not.” Notes on Abandon, by Leora Fridman,p. 53, Tricycle, Fall 2016
This is where I am at: abandoning and being abandoned, looking forward to release.
Last night, I talked to a neighbor and told her I sold my house for 15k. I could tell she was not happy. I just killed her property value. But my house was on the market for over a year and she never asked what I would take for it. Her lack of enlightened self-interest just hurt her financial best interests. I am not angry with her. I actually feel bad for her. In this individualistic culture, people just don’t think long-term. I had decisions to make and I made them without a lot of support or resources. And it is just now dawning on people that my choices might impact their lives negatively. Oh well. It is so not my problem anymore.
Yesterday I bought a disposable phone I can put minutes on. I had problems getting it activated, so I took it back to Wal-Mart. Today it worked because it took more time than usual to get activated. On the way, I was nervous, but decided to abandon the fear. There it was, but if they didn’t get it to work or give me my money back, I would end up going to Verizon and just getting a new phone on my old line. The point is that I do not have a choice. I must be reachable while down in West Virginia looking for a place to live. I have to have a phone. Period. Regardless of my negative feelings or anything else. They got it working. Yea.
So I decided that I could treat myself by going to some locally-owned Lansing eatery one last time. And I realized that all my favorite local places had gone out of business years ago. I didn’t abandon Lansing; it abandoned me. So many times, we do not realize just how much things have changed until we wake up, look around, and say, “Oh my god. Where did everyone go?” Lansing isn’t even a shadow of what it used to be.
Things change. I only have so much time, energy, and money. I must prioritize. Things will be abandoned in the quest for sanity while I try to take care of Barry and myself. My philosophy has always been “If you’re not going to help, you don’t get a vote.” Is anyone listening?
I closed on the house! The house is officially sold.
The new owners are not hurrying me out, but, wow, it really feels weird living in someone else’s house. Truly strange. I now need to find another place to live.
The difference between this life transition and all the previous ones is my level of awareness. I have no youthful enthusiasm left. There is no idealism.
I am moving forward very carefully. I am trying to do things in an orderly fashion. I am trying to listen to my intuition.
I never thought I would be in the position of moving the two of us. When Barry got stage 4 cancer in 2008, he had only a 20% chance of living five years. I got my MBA at the end of 2012. I spent 2013 and 2014 sitting, watching TV with him, and waiting for him to die. Once he died, I would move south. Part of the problem is that he got used to me just sitting and watching TV with him. He liked it, while my soul died. Watching TV and waiting for someone to die is a soul-crushing way to live.
I woke up in 2015 to the realization that I was responsible for a disabled husband and a house, neither one of which I knew how to take care of. And taking care of both was beyond my capabilities. And then there were the crises: automotive problems, a BB through the living room window, an iffy mammogram, Barry’s possible prostate cancer (all health problems are possible because he will not get tested for anything, let alone treated), the bullet through the living room window, the abandonment by people when I needed them most, and on it went. I refuse to feel guilty about waiting for Barry to die back then because I thought it was the most compassionate response I could give, given my information at that time. Who wouldn’t want to die in the comfort of their own home? The point is that I put my life (health, career, etc.) on hold while waiting for him to die. And then he didn’t. Therefore, I am moving us elsewhere. Not my plan.
Now 2016 is two-thirds over. I am living in someone else’s house. And I want to make the next transition as sane as possible. I don’t know what I am doing.
And I am absolutely exhausted. I was sitting in the mall yesterday, trying to meditate, and was asked by a guard if I was okay. I had fallen asleep. Did he think I was passed out? Or worse? Sometimes there is not caffeine in the world to keep me awake. I have decided to try to prepare, as far as is possible, for when Barry dies so I can spend the following month sleeping. Right now I am coping, and I am good at coping. But I know that I am never going to truly relax until he dies and I am out of the perpetual caretaker role. And, if I am not careful, I will get really sick as soon as the stress lets up. That is my pattern: when the stress is on, I am okay and when it relents, I collapse. When going to school, I would get really bad colds about ten minutes after taking my final exams. Selling the house was just a small taste of some of the stress letting up. I know what comes next if I don’t prepare.
The other part of my problem is that I have no goals or dreams anymore. They have died in the past few years. I went to school with goals and ideas. That part of me died last year. Now I have an advanced degree (and the student loan debt to go along with it) to pursue goals that are dead. I just don’t care anymore. I don’t know what, if anything, I can do about that.
So the last thing I want to do is to conjure up a whole new batch of goals and dreams to motivate myself in a new direction.
I don’t know what I am doing and part of me is incapable of caring. I really need to tread carefully here.
I found an interesting book about a week ago, Final Gifts by Maggie Callanan and Patricia Kelley.
I know I have encountered a good book when it connects dots in new ways and makes me think, “Huh. Never thought of it that way before.” These women are hospice nurses. They know what they are talking about.
It is all about Near Death Awareness, not Near Death Experiences (like being resuscitated during surgery or car crashes or another sudden drama/trauma). It is all about the gradual awareness people have when they start to know they are going to pass.
The book is chock full of examples of attempts of dying people to communicate with family and loved ones. People use language that is familiar. One example had a dying man using a football illustration to show he was going to die before noon on Sunday to his football-obsessed family. Another example was of a dying diplomat struggling to find his passport. He was speaking the language of travel. To another dimension, but still departing soon.
The book shows how to ask the right questions to help interpret their coded messages. Dying people often speak symbolically and, like dreams, those symbols are often only meaningful to the speaker/dreamer.
The main problem is that the dying person is often over-medicated and the natural assumption of family and friends is that the dying one is confused, delirious, or suffering from dementia. Sometimes these conditions are true and need to be dealt with, but sometimes not.
This information comes at a good time for me and Barry. The Huntington’s is causing him to slur his words and I don’t always understand him. Now I know how he might communicate with me. He might talk in WWII military language or some form of hippie-speak.
Of course, there was the assumption that the dying person’s denial needs to be respected. That’s why I don’t think I could ever be a hospice anything. I don’t have any respect for denial as a coping mechanism. As a phase of the grieving process, denial is inevitable. As a coping strategy, denial is always dysfunctional. If the person is still in the “stage” of denial a year after a terminal diagnosis, an intervention may be in order, in my opinion. “Respecting” the person’s denial at that point is nothing but enabling they dying person to not deal with reality and places all the burden of dealing with reality on the family members. That is not okay from my perspective, ever. Enabling is not compassionate, in death or addiction. Speaking as the perpetual caregiver, Barry’s inability to understand things is bad enough, but understandable. But I am done tolerating straight-up denial. You see, I have to function for two. I am not given the option of living in a fantasy world and I will not ever “respect” anyone’s insistence that I live in theirs. Love is stronger than death, but denial is not a respectable means of coping with the inevitable we all must face at some point.
My perspective is that we all have three things: time, money, and energy. We are all exchanging them for each other by eating convenience food or borrowing money or whatever. The most precious variable by far is time. Denial robs us of time to make things right, tie up loose ends, and finish unfinished business. Time we can never get back. Oops, too late now.
I am obsessive, not that anyone can tell.
Part of me has become a ravenous reader of books related to death. Obviously, a big part of that was Barry’s terminal diagnosis back in 2008. I wanted to prepare myself. And it is 2016 and he is still living and I am still reading. Frankly, it was starting to give me the creeps. So lately I’ve been asking myself why I am still reading these books. It didn’t take much digging to know the answer.
I want to know how to prepare. I want to know the signs of impending death. I want a clue. It sounds so obvious.
I’ve prepared as much for Barry’s (and my own, for that matter) as I can to this point. I have the plots, the grave marker, etc. Everything but a casket.
But what is with me trying to understand everything? I am simply trying to fill in the blanks because I am dealing with an unknown degree of Huntington’s dementia. Barry doesn’t understand much of anything and his communication skills wane by the day.
I think a big problem is my being left in the dark regarding just about everything involving his medical condition. Barry doesn’t want to treat anything, so all the health-care providers have gone into full-blown palliative-care mode. They are all like, “Let me know if and when he is in pain and we will address that then.” I see the attitude shifts sometimes when receptionists go from, “Please complete these forms,” to, “Don’t worry about all those forms.” And then there’s the neurologist at MSU that eagerly showed the intern/resident Barry’s enlarged lymph nodes and then casually told me to schedule an appointment for Barry a year from then. A year? Seriously? That told me that the doctor’s attitude was somewhere between “There is nothing more I can do for him,” and “I’m letting him go home and die in peace.” Given the medications he is on, I expect some 3- or 6-month monitoring.
This is part of why we are moving. We are moving for two reasons: 1) I am incapable of caring for Barry and the house and 2) we clearly need some more Huntington’s resources than we have here. Perhaps WVU will be able/willing to provide me with more information as to what is going on with him physically. Part of me does not even care what is going on; I just want a clue and maybe a timetable. I want to know what I am dealing with.
It reminds me of when I was working in my mid-twenties and realized quite suddenly that my family dynamics were such that, out of my three brothers and myself, never more than one sibling at a time had some huge drama. We managed to somehow take turns. How does that work? It struck me so hard at work that day. What the hell kind of subconscious dynamics were going on that the four of us so consistently managed to alternate drama?
Barry cannot learn and his communications are getting less clear by the day. So, in typical fashion, I overcompensate. The problem is that if I don’t do it, it simply does not get done. Period. How do I back off from that? How do I not overcompensate?