Barry Going Downhill Fast

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.

Advertisements

About cdhoagpurple

I have an MBA, am married to a GM/UAW retiree with Huntington's Disease. I am more Buddhist than Christian. I plan on moving to Virginia when widowed. I have a friend''s parents that live down there and another friend living in Maryland. I am simplifying my life in preparation for the eventual move.Eight years ago, my husband had stage 4 cancer. I am truly "neither here nor there." My identity shifts and I am always surprised where I end up. 2015 was my hardest year ever. This is my Dark Night of the Soul. Welcome to it.

One response to “Barry Going Downhill Fast”

  1. Ninasusan says :

    I’m sorry I missed these…moving on to the next one

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: