Barry was on hospice all of one day. It was, on the one hand, astonishingly fast, and, on the other, prolonged suffering and agony from Huntington’s Disease. His death was awful to witness. I cannot wait for the hospital bed to be removed because every time I see it (in the middle of my living room), I see how he looked in his last moments.
He passed with me holding his hand, telling him how much I love him. I believe he waited for the home health aide to leave so he could be with me alone. He was incapable of communicating. He was struggling to breathe. I had just given him another dose of morphine and was waiting for the hospice nurse to arrive. She arrived, despite the icy roads, and, within one minute, declared him dead. I asked, “Are you sure?” and she said, “Oh, yeah, I’m sure.”
Huntington’s is a bad way to go. Before the home health aide left, I commented that, if I saw a dog in that much suffering, I would have it put down. I am having him cremated because I want nobody to remember him the way he looked at the end. I want people to remember the good things about him, not the ugliness of the Huntington’s.
I have been widowed all of 48 hours. I have hardly stopped to breathe. For the past week, it has been nothing but a parade of people coming into the apartment and me signing tons of forms. He was rushed onto hospice and had not even seen the hospice doctor yet. I am waiting for things to calm down. It may be a while.
Today I got Barry on hospice. Things are happening quickly. At least I think so. Watch Barry prove me wrong and linger for a long time. He has stopped eating, so how long can he last given that he has no weight to spare?
I emailed a sister of his, letting her know about his being on hospice. She can let the rest of the siblings know–or not. These are not my favorite people and I debated telling even her. I even gave our address.
Tomorrow I will leave a message for his daughter. I don’t wish to see her, either, but this is her dad on hospice. If she wants her minor inheritance, she will have to provide a way for me to send it to her. We haven’t seen or heard from her since Christmas 2014. But this is it.
I am numb and that is keeping me functional.
Last Tuesday, Barry saw his beloved grandsons, Austyn and Drew. These are the only grandkids he will ever know. They are his daughter’s sons. His son Andrew killed himself six or seven years ago, partly because he had been deployed over and over and partly because he had been genetically diagnosed with the Huntington’s. Andy had no kids. (And, yes, Drew was named for his uncle, Bailey’s brother Andy.) Those are my assumptions. Barry, I, Jeff (Bailey’s ex and father of Austyn and Andrew), and Jeff’s folks all went to Smokey Bones. We ate a lot. Jeff even had donuts. He was a happy guy.
Then we went across the parking lot to Dick’s Sporting Goods. We bought the boys whatever they wanted. Both boys got shoes, but one had to order them online. Jeff is a single dad and really appreciated the gifts and food. (We haven’t seen Bailey since Christmas of 2014. Worst daughter ever. I know it breaks Barry’s heart. I simply cannot imagine treating my dad the way she has treated hers.) I believe this visit with the boys completed something inside Barry. He told his grandsons that he loved them and that dogs rule and cats drool.
The next day, he started saying things like, “It’s too hard. I can’t do this.” He has been very routine-oriented, but he started not being aware of what part of the routine he had completed.
Then Sunday, he stopped eating. He kept saying that he already had eaten and talking about what he had eaten Saturday. I kept telling him that what he ate the day before did not count.
Yesterday, he ate a half piece of apple pie and a few swigs of Frappucino. That’s all he wanted. I thought he would be starving and at least finish the piece of pie. Nope. Also, I called the doctor’s office. What do you do when someone just stops eating and says he’s not hungry? Last week, he had lost 5 pounds. And then he stopped eating. I did not feel the nurse practitioner really took my suspicions seriously when I mentioned hospice. She acted like it might be a year before hospice was on the table. And then he stopped eating. I don’t have a medical degree, but it doesn’t take any education to know that someone as thin as Barry does not have many days left after he stops showing any real interest in food. I feel like he wasn’t actually hungry but liked the idea of apple pie and Frappucino.
Every single little thing he does takes everything out of him. Watching him struggle to eat four or five bites of pie is just painful. And all he wants to do is watch the Justice Network on TV. He keeps saying that he just wants to be left alone so he can watch TV. He doesn’t even want to go to his committed AA meetings. The man has been going for 30 years.
Like I said, I called the doctor’s office. They referred me to the Transitions program. Tomorrow, a nurse will come out and evaluate him. I want her to see what I see. I want her to see him struggling to breathe. I want her to see how belligerent he has become. I want her to see his rapid cognitive decline. I have the paperwork showing how he does not want any feeding tube or life-saving procedures. The definition of hospice is for people who have six months or less to live. If he continues to eat almost nothing, I seriously doubt he has six weeks. If she doesn’t think he qualifies for hospice, she is simply incompetent. I will contact someone else. I feel like it is almost too late to worry about hospice. I feel like the weight is falling off of him and he is almost dead and now we are going to call hospice? His skin looks bad. I am paying attention to every detail because I know I am watching him die. His cognitive decline accelerated about a month ago, but when he saw the boys, I think he got what he wanted or needed.
All I want at this point is to keep him comfortable. And that is challenging enough.
He’s been going downhill so slowly for so long. He would decline a little bit and plateau, decline a little bit and then plateau, for years……Starting the middle of last month, the decline accelerated greatly and I see no plateau in sight. This is a free fall.
Many things are happening this week. Tomorrow, we should see the boys, Barry’s grandsons. Their dad’s parents are bringing them to Lansing. We all plan on going to Smokey Bones. This is huge. I believe he really needs to see them one more time.
Wednesday, Barry goes to the doctor. We already had an appointment scheduled for the 31st, but the insurance company insisted. Pain in the keester, but let them see what I see. In their minds, Barry is probably improving and therefore no longer qualifies for help. In reality, the only question is how close he is to qualifying for a nursing home. Barry has gone downhill a lot just in the past few weeks. For example, yesterday, Sunday, he spent all day trying to convince me it was Monday. We were even watching CBS Sunday Morning for part of it. We missed his Sunday meeting because of his insistence that it was Monday. His routine has been absolutely everything to him and now his confusion supersedes his routine. So this morning he insisted it was Tuesday. I said no, but there is a marathon meeting today, New Year’s Day. I just don’t want him expecting the boys today. Also, he has gone downhill physically. I spent last week with a cold or the flu. I call it “the creeping crud.” My godsister gave it to me at Biggby. And then I gave it to Barry. The aspiration debris in his lungs is now infected. He sounds awful. Let the doctor see him. I want this all documented. I want others to see what I see.
Then Thursday I go to the cancer people and they officially train me to do the mail. I already understand some of it, but I can take notes.
I haven’t done much this week with the Excel file because I have spent my time sleeping. It feels so good to breathe again.
It’s so hard to watch Barry because absolutely every single little thing is so difficult and exhausting for him.. The Huntington’s is kicking his ass now. I didn’t see his dad at this stage, so I don’t know if he ever got this bad. It’s painful to watch.
God willing, and so far not so much, this phase will be mercifully short. The reality has been the opposite, however. The pain and problems just linger on and on…But I am pretty sure I see the light at the end of this tunnel. I seriously cannot even imagine what kind of shape he would be in a year from now. A year? How about two months?
It is Christmas day and it is snowing–hard. I am very glad to not be driving in this crud.
I am watching TV and the Weather Channel is talking about the ever-dreaded lake-effect snow and showing a picture of… Massachusetts! Are you kidding me? They kept talking about New England and showing New York. New York does make some sense because it borders Lake Erie and Lake Ontario. Syracuse and Buffalo are the focus.
Meanwhile, in my world, Lansing, Michigan, the snow is coming down probably an inch an hour. The radar is typical for this kind of system. Frigid air sweeps across Minnesota and Wisconsin. It is 5 degrees and sunny in Milwaukee. The same air traipses across Lake Michigan and dumps snow across the lower peninsula, starting in Holland and Muskegon and coming as far east as Lansing sometimes, like today. It will be warmer here than the other side of the lake. It might be fifteen degrees here. Meanwhile, the Weather Channel doesn’t even give our state an actual name. They refer to our region as “the Great Lakes.” When Canadian air sweeps across the Great Lakes, it doesn’t just snow in Buffalo and Cleveland! Just saying. We don’t gt the press because crappy weather is not noteworthy. It’s snowing in Michigan in December. So? And your point is…? Yawn.
Meanwhile, I am trying to accomplish something. I am working on an Excel file to show my student. I have found another type of chart she might prefer to the bell curve. It’s called a histogram. For the smaller job codes, a graph is silly, but the vaster job codes could use a histogram. I am trying to get things done before it is hot and oppressively humid, which is the flip-side of almost being an island. When it is hot, hazy, and humid, I don’t want to do anything at all. So this is my opportunity.
The upside is a white Christmas. The downside is a white MLK day, a white groundhog day, a white Valentine’s day, and sometimes a white St. Patty’s day. Ugh. On my mark, get set, go.
Many things are swirling around in my mind now. I finished my Christmas shopping last week and have been doing holiday stuff this past week. I sure will be glad when the holidays are over.
They seems to really like me at the American Cancer Society. I have been helping the secretary Laurie out and helping her get a lot done. It is very rewarding.
And I have been fighting with Excel. This student of mine emailed me some files and I was all enthused about showing her how to make something into a table and sort by anything she wanted. Problem: the file she gave me was so huge that Excel basically vomited on us and informed us that there was not enough memory. So I couldn’t show her anything and she was very frustrated.So I went home and did some huge deleting of columns (like names and dates of hire) or anything not absolutely necessary to using the evaluation scores. And I found out how to make bell curves. I emailed her some. She is very happy and wants them for all the job codes and supervisors. This one sheet has 2,254 rows. I told her I would start working on the job codes for that sheet, but this would be unbelievably time-consuming. So I can do some amazing things on Excel, but that has been sucking up time and energy.
And I have been reading a book called “The Wild Edge of Sorrow.” It is fabulous. It talks about all sorts of different types of grief. Grief isn’t just about losing a person. It’s also about dead dreams and hopes, unmet needs from childhood, lost species, lost cultures and languages, and suffering of all kinds. It talks about the need for community and safe places to process feelings. Our culture basically sucks at that.
Part of why I have been reading so much is that I can’t watch TV. I can’t stomach it. When Barry got stage four cancer in 2008, he only had a 20% chance of living five years. I spent 2013 and 2014 watching TV with him and waiting for him to die. I spent 2015 praying for either of us to die (didn’t care which of us). So now, in my mind, TV=waiting for death. I know it hurts Barry that I don’t sit and watch TV with him much, because that is really all he can do, but I have to get on with my life. And TV is not a productive part of that. TV is not where I want to place my attention. I am moving on.
Lots of things are happening now.
This week will be crazy. I am volunteering Mondays and Thursdays for the American Cancer Society. This Wednesday will be my last time at the Women’s Center, although they said I have cat-petting privileges anytime. If I need to pet a cat, I can always go there and pet Taser and Luna.
Also this week, I do tutoring on Monday and Wednesday. I saw my student last week. She knows nothing about Excel and has two projects to do. We worked on one, looking at the policy differences of various unions she deals with. I showed her what she wanted and then showed her a much easier-to-print way to do it in Word. So she decided to do it in Word, seeing as there are no actual calculations in this project that would make Excel a better choice. I don’t see my job as being an “Excel Tutor” but rather as a “Solution Finder.” She said she knew of others that need help with Excel, so this could grow into something.
And there are miscellaneous things this week. Such as getting my hair cut Monday night. I haven’t had a trim in probably eight months and I’d rather give the business to a friend than pay a stranger. In addition, I am making peanut butter balls with my former Protestant minister’s wife. They are such good people that they give Christians a good name and there aren’t a lot of such folks left in this world. We’ve been doing this for probably twenty years. She’s been having some health problems and memory issues, so I am unsure how many more years we will be doing this.
Of course, Christmas is coming up. I just mailed cards with money orders to Barry’s grandsons in Algonac. I made him do the writing in the cards but I did the envelopes because it is important that the postal service find them legible. And we just mailed a card to his daughter up in Clare county, with our address sticker on the envelope.
Why is that significant? Because nobody, and I do mean nobody, in his family has our address. We moved a little over a year ago and left no forwarding address–on purpose. His sisters pretended to offer help and then when I tried to get actual assistance, the response was, “Now is not a good time.” Seriously? Is it ever a good time to be in a crisis and need help? So I basically told them to go screw themselves and not to contact us further. And so far, so good. The only time I ask any of them for anything (or ever will) and the answer is no. And I was asking for very little. Really? Gee, I am so sorry I inconvenienced you.
Back to Bailey, his daughter. I called her ex’s mom (the grandsons’ grandmother) and it turned out that Bailey wanted our phone number so a friend could contact us. Reality check: we know none of her friends. Never have. In other words, she wants money. Why doesn’t she have our phone number? Barry has been calling her every other Friday since she turned 18. He only gets her machine, but that’s not the point. She doesn’t have caller ID? Before we switched to Verizon probably five years ago, we still had a land line with the exact same number! An old phone book would do the trick.
Anyhow, Jeff’s mom said she wants she and her husband to come with Jeff and the boys to Lansing. I said we would take them to Smokey Bones and the boys could buy what they wanted at Dick’s, which is just across the parking lot. At this point, every event with Barry has to be treated like possibly the last one ever.
I told Barry about all of this and at first told him his daughter was not welcome. He says, “Why not?” I reminded him that she threw a fit when she found out we saw the boys this past February and referred to Barry as “that child molester.” Funny how no one can even imagine Barry doing anything remotely inappropriate and he said, “I can’t even molest myself.” Such a guy thing to say. I said I might call 911 if she shows up because I don’t want her anywhere near us.
But then I reconsidered and told him he could see her if I’m not there because I can’t guarantee what I would do if I saw her. We haven’t seen her since Christmas of 2014. That is a marriage and a divorce ago. I have always had the policy of not interfering with Barry and Bailey seeing each other. Until I heard about her throwing a hissy fit when Jeff brought the boys for a visit and referring to her dad as a child molester. That’s why giving her our address is such a big deal.
Then it struck me like a ton of bricks. Maybe she wants her inheritance now. Barry wants her to have $2500 when he dies and it sounds like she is totally broke up north. I don’t care when she gets it. If that’s what she wants, we can arrange that. I can stick it into an account somewhere and let her know about it when she wants it.
Is this the closure Barry has been waiting for? Is this what he is living for?
Either absolutely nothing is changing or more is happening than I can keep track of. But a lot of movement beats being stuck any day.