Tag Archive | Leaving Michigan

Younger Me Still Exists!

A few days ago, I was at the Biggby’s coffee house where Barry and I always went on his meeting days. I miss him so much and the people there know me and knew him.

Anyhoo…I was staring out the window into the sky, watching the clouds go by and had this sudden feeling of recognition: it was the same feeling I always had staring at the sky while lying on my back behind the high school growing up. I have always loved being alone. But I hadn’t had that feeling in over thirty years.

I thought that part of me had died after 29 years of marriage. Has it been hibernating for three decades? Where has it been?

I feel like I am resuming my single life, which I had never developed in my youth.

And I have a job! I am working for a guy that flips houses, Jim. He’s a really good guy, but a tad ADD. He is unorganized and that’s where I come in. So far, I am simply organizing his receipts, but I have learned how to run payroll. He trusts me with everything, which is huge. He just started his business. My work has started small, but I realize that this job will probably take over my life in the next year.

Long-term agenda: get some awesome experience so I can leave Michigan and work anywhere. I am contemplating Columbus, OH, because I have family there.

Short-term agenda: contact my Indian friend in NC and schedule a long weekend with her before the job takes over my life. I haven’t gone to see her in years. She came to visit me in February 2017. I could not go to her because I could not leave Barry. I have gone nowhere for years. Literally and figuratively. I can travel now that Barry is gone. My first trip was this past February to visit my parents in FL. Now I can have my own life.

Making Changes in MI

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.

Checking Out WV

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.

Not Panicking

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.

Abandonment and Release

“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?

Trying to be Careful

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.


Compensating Dynamics

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?

Dysfunctioning for Two

I was wondering why there had not been much more movement on selling the house. I found out why. I came home last night from grocery shopping to a message from my realtor.

It’s a POA issue. My realtor explained that the mortgage company wanted to update my general durable POA for Barry. Not many things can make me both confused and livid all at the same time, but this did it. How do you “update” something that is permanent and supposed to last forever? Also, they wanted to see the original POA.

I could only think of one real solution: do it again. So I started looking online for general durable Michigan POA forms and found one and downloaded it. I asked my parents if they would both be witnesses and they said yes. I arranged for us to meet at FedEx Office today so I could get it notarized, only to find out last night that they no longer offer notary services. Last night I printed out the form. This morning I called the UPS Store and asked when the notary would be in and they said all day.

Then my realtor called. She explained that I did not need to get a new one and that the mortgage company would somehow help to get my current POA registered at the county courthouse. That could actually be helpful. Also, if she needed Barry’s signature, she would come over after calling us. I asked if it would be more helpful or complicating to follow through with my plan to do it all again and she said it would complicate things. So I cancelled my parents.

Finding the “original” POA is no small feat. I have several copies and cannot tell which is the original. I had it printed in lack-and-white, the pen used to sign was black, and the notary’s stamp was black. I have no idea which one is the original. My plan for doing it today was to use various colored pens for the signatures. That way, when it would be copied in black and white, I would know which was the original. Back in 2008, such a thought never occurred to me.

This is not the first POA issue I’ve had. A little more than a year ago, Sallie Mae tried to tell me that my POA had expired because the notary’s commission had expired in 2013. I had a heated discussion with them. “Look up the word ‘durable.’ It never expires! I cannot get a new POA every time a notary’s commission expires. This is insane.”

Then there would be the issue of the validity of any new POA. The person is basically declaring themselves to be of sound mind. Barry knew exactly what he was doing in 2008. Today? Not so much. It would be easily defeated in court today. Barry would sign anything for me today, if it will put me in a better mood.

The reason for my sullen mood is that I am totally responsible for everything and don’t always know what I am doing! I am expected to make bricks without straw. I am fully accountable without the necessary tools to do an adequate job. I am trying to function for two without sufficient knowledge for one.

My realtor basically had to talk me off the ledge. I told her that I will do anything to make this house sale happen and that I don’t want the buyers thinking I am holding up the process. Part of the mortgage company’s concern is to make sure there are no liens on the property or anything like that. If it takes Barry’s signature, fine. Barry and I own this house, along with the mortgage company. There are no past-due back taxes or anything similar. Just tell me how much money to bring to closing to pay off my mortgage and we will make this happen.

I just thank God for my parents’ willingness to help.

Found Some Excitement!

I was looking for apartments online in Fairmont WV and saw one I actually got excited about. I haven’t closed on my house, but have accepted the offer of the potential buyer.

What’s significant is that I did not know if I was even capable of getting excited about anything anymore. I started to believe that excitement was the logical expression of stupid idealism. Perhaps it is sometimes. I certainly cannot discount that possibility in my life.

The excitement came from seeing the hardwood floors. Nobody should get excited about flooring, except that having hardwood floors, for whatever bizarre reason, has always been a dream of mine.

I am not excited in the same way as when I was young because I am not naïve anymore. My plans include visiting the local office on aging down there and the movement disorders clinic at the university hospital. It’s hard to get enthused about it all. I’m not 25 or even 35 anymore. I’m pushing 50.

People have been asking me what I want. Deep inside, I know exactly what I want: to be alone, to have some serious alone time. To not have to be so available all the time. The other day, I was meditating and Barry just casually asked some question. He has zero social awareness. I can’t blame him for asking the question, but I still yearn to not have to answer it.

The truth is that I am not just looking at this move; I am also looking down the road at the next. When Barry passes, I can literally move anywhere, without regards to Huntington’s resources. This is part of why I want to travel lightly: I don’t plan on staying put. I would love to check out Asheville, NC; Charlottesville, VA; and maybe places in KY or TN. Places where it snows, but it also melts. You’re not still looking at the same nasty slush on Valentine’s Day that came down all pretty and fluffy on New Year’s Eve.  I would never move to Buffalo or Cleveland because of the three dreaded words: “lake effect snow.” I would like to be far away from any Great Lake. The idea is to take some modicum of control over my life and have it be about me and move any darn place I please. Preferably with hardwood flooring.


Strange Epiphany

I had a sudden insight recently. I was watching “Criminal Minds” and they were talking about the two perpetrators sharing a common history that started in 2004 and had these huge events every four years (the show was from 2012).

I realized that I had a four-year cycle of my own. And somehow never noticed it.

  • 1996 Got my first Bachelor’s degree
  • 2000 Emotionally understood for the first time that Barry’s Huntington’s Disease was going to force me to support myself. So I started working.
  • 2004 Went back to school to get real marketable skills.
  • 2008 Got BBA, Barry retired, and then he got stage-four cancer one week after retiring.
  • 2012 Finished MBA
  • 2016 Huge impending move out of MI

The question is how I never noticed this pattern. I read New-Agey books that talk about a natural seven-year cycle. Apparently, that doesn’t apply to me.

I am about to be 49. I could easily live to 73 (24 years). That would give me six more cycles! I cannot even imagine the implications. Holy crap. Transformation can certainly come unexpectedly.