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?