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?
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.
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.
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.
Yesterday, I was at Barnes & Noble, as usual on a Friday. When I arrived, it was 84 degrees, bright, sunny, and a touch humid (okay, it was like breathing soup).
Then I sat down and did some meditation with my eyes closed. I opened my eyes 17 minutes later. It was as if someone had turned down the lights. Suddenly things were noticeably darker. I looked outside and it appeared ominous. I checked out the temperature online and it was 80 degrees. It was like it had gone from mid-summer to early fall in 17 minutes! I was jarred.
A couple days ago, I accepted the crappy offer (that was actually my idea!) for the house. It will still be worth it to get out of Michigan. The old real estate adage applies: location, location, location! The reality is that pretty much no one wants to move to Michigan and educated people like myself find even bankruptcy a small price to pay to escape a state with few decent-paying jobs and zero chance for promotion.
I don’t know when I will be able to work, but, without a house to take care of, I have a better chance anywhere else on earth of finding meaningful employment.
And yesterday reminded me just how quickly things can change. That offers me hope.
Tomorrow, I am going to my realtor’s office to accept the offer of $15k for my house.
I am getting less annoyed at the loss and more excited about moving. I just have to find us a place to live. That’s all.
But my goals are getting clearer. The place I am looking for needs to be affordable and as barrier-free as possible. I’m thinking of checking out senior housing. Barry will be 65 at the end of September. He may not last more than a few years, so I need to know how long I can stay after he passes because I am not a senior.
It’s starting to become real. We will close by September 1. I will be extremely gone by November 1. I am getting out of Michigan before shoveling season starts! That is my dream come true. Tomorrow is supposed to be in the low 90s. My thought is that it will be the hottest day I will ever spend in Michigan again.
And meditating has been giving me insights. I never get to the point of stopping all thoughts. It feels like thoughts leak upward into my consciousness. The insights seem real obvious, but if they were, I would have had them already. I am extremely logical and I have conscientiously prepared for as many eventualities as I have thought of.
I can’t say with a straight face the things are “falling into place.” Instead, I feel like I have been slowly removing every imaginable obstacle (financial, social, emotional, you name it). I have been clearing the tracks and now I can hear the train in the distance.
The potential buyer of the house is bringing his investor by on Sunday to show him the house. The guy probably thinks that what I am offering is too good to be true. That’s fine. If the investor agrees, I get to probably cheese off my realtor and sell my house for a $48k loss. Woohoo?
The last time I moved, obviously, was when we moved into the house. We were 12 or 13 years younger then. We moved into the house. It was the obvious next step in our lives. We had saved for years for a down payment and looked around at the various houses on the market. (OMG. I am so unbelievably glad we didn’t buy any of the ridiculously overpriced houses we saw back then! I would seriously be stuck in Michigan till I died. Not a joke.) There was the pride of ownership and the hopes and dreams of youth.
Fast forward to today. Barry is not participating in any meaningful way because of his health. In other words, I am moving us to a different state. We are not upgrading; we are downsizing. I feel like I am undoing everything from the first move. The dreams, hopes, optimism, and pride—all gone. This is me waving the white flag of surrender that I am incapable of taking care of Barry and a house.
And yet I am luckier than some people I know. My neighbor next door got foreclosed upon. One of my best friends declared bankruptcy, got foreclosed upon, and had to put her dogs to sleep because they did not handle the move to a Maryland apartment well. At least I have a house to sacrifice.
This is the first time I am advancing to the next stage of my life without any idealism, excitement, or pride. This is all extremely humbling (humiliating), nothing to brag about. And this is if I am lucky enough to sell it!