Posts Tagged ‘end-stage liver disease’

Hospice: Things can be unpredictable!

Posted in Caregiving, Grief and Grieving, Personal on January 24th, 2010 by Jim Hughes – 2 Comments

Dog Visit in Hospice

Tomorrow it will be four weeks since we got the call that Steve had been sent to the hospital in an ambulance, followed a few days later by a diagnosis of end-stage liver disease and a prognosis of three weeks to three months to live.

The next week he was moved to a residential hospice. Two weeks ago tonight, we had a call that he was not expected to live through the night. But he did.

A week ago we were back down visiting him, fixing him a pie, and taking his dogs to visit him. He didn’t move from the bed. In fact, he didn’t even sit up. We had a few one sentence conversations.

The hospice doctor felt that his condition had stabilized however, and plans were underway for Steve to move to a residential hospice facility for less critically ill patients.

Tuesday, after we were back home, Steve called me and we had a very lucid ten-minute conversation — something that hadn’t happened at all during our visits. And he has continued making phone calls, and having long conversations, all week.

Friday he was able to get up and walk with assistance. Saturday he was able to walk with one cane and go to a nearby BBQ place for lunch with his brother.

It’s been a strange, stressful, roller coaster ride so far. We’re thankful Steve is enjoying some better days, sort of an unexpected bonus for him. But even that adds to the stress, trying to manage contingencies, handling location changes, dealing with his changing needs.

It’s a reminder that dying is an unpredictable and individual thing.

We can’t know what things will happen next, only that they’re unpredictable. So we take one day at a time, all too aware that we’re not in control.

Thanks so much for those who have provided words of encouragement and support and especially prayers. It helps keep us going.

We’re in Crisis Mode

Posted in Caregiving, Grief and Grieving on January 6th, 2010 by Jim Hughes – 1 Comment
foot bridge

© Jim Hughes 2009

Our family is in the midst of crisis. I really don’t know any other way of starting to write about all of this.

My wife’s brother Steve is dying. He has end-stage liver disease, the result of alcoholism.

The crisis began Monday a week ago at 9:00 am. We received a call from his friends who he had called to come pick him up so that he could move in with them. They quickly figured out that he was too sick for them to care for, put him in an ambulance to be taken to the local hospital, and in spite of his instructions not to call us, did.

Steve has been essentially estranged from the rest of the family for lots of years by his choice. We all last saw him three years ago when he came to his mother’s 80th birthday celebration. And we had seen him a couple of times in the ten years previous to that. In recent years, he has talked regularly with his mom by phone, and occasionally with us.

His estrangement has been to keep a number of things including his alcoholism hidden from the family, especially his mom. A couple of years ago his liver problems became so serious that he had a surgical procedure to improve his condition. Initially none of us knew about it except our daughter Sara, a nurse practitioner, who he discussed the medical things with. He swore her to secrecy, and he made her his health care power of attorney. After about a week of struggling, she told us and we were able to talk to and support him as he went through the procedure. But even so, he was adamant that his mom not know. The procedure was quite successful, and although we were aware that he was having financial difficulties, we were unaware that his physical condition had been deteriorating.

So the call last week was without warning. I can’t say, however, that it was unexpected.

What we learned from the call was simple. He was very sick, he had no money, no insurance, had abandoned his apartment, and had no one to take care of him. That’s pretty much a crisis.

There’s too much to try to put in one post, so consider this just an introduction to a number of posts that will follow. I will tell you that God has blessed us in countless ways during this time. Steve has received excellent care and is in a wonderful hospice as I write this tonight.

I need to write about this experience for me. Writing is one of the primary ways I know what I’m thinking.

But I know it’ll also be helpful to some other folks. As we’ve shared what’s going on with our friends and church, we’ve been surprised by the number of people who have or are going through similar situations. So I hope you’ll feel free to comment and journey with me through the posts that will follow.