Caregiving

Times of Refreshment

Posted in Caregiving, Personal, Self Care on July 30th, 2010 by Jim Hughes – Comments Off

I think he's smiling!

It’s Friday, and I woke up early this morning.

I’ve enjoyed the quiet, watching the sun rise in a clear sky, hearing and watching the world in my back yard wake up. I saw the great horned owl come home to roost from his night’s hunting, ready for his day of rest. I saw the wasp that started building a nest on our back porch go from sleeping while hanging by a thread to the nest to resuming active building. I heard the sounds of other creatures big and small beginning to move, and the sound of traffic as people became busy.

Meth the goldfish, the name Eloise gave him because he’s lived so long (short for Methuselah), was excited that I was up, hoping for a few flakes of food. Missy Dog was still curled up in a ball when I went to let her out of her kennel. But she too was eager for the day after a few stretches.

I slowly sipped a cup of home-roasted Honduran coffee, not because I needed the caffeine, but because of the joy of its rich taste.

And I had a quiet conversation with God. We talked about Jim and Pam, and the slow process of recovery from a double lung transplant, about the joy of small steps, about the challenges of each moment. We talked about Earnest and Xenia, each caring for spouses who have suffered debilitating strokes. And we talked about many others, currently on my prayer list, asking his blessing and intervention for them.

But we also talked about how amazingly beautiful this world is that he’s given us to live in for a little while, and I spent some time wondering what Heaven must be like if this world is so gorgeous.

Most of my mornings are not this good. I wish they were. It’s a calm in a storm, a chance to catch my breath, a time of refreshing.

Much of the last week has been about caregiving. It had worn me out. I had lost a night’s sleep at the ER with daughter Sara as she suffered though another bout of pancreatitis. Then after getting her home, there was concern and being on call as she rode it out. I also spent long hours with Dad at doctors’ appointments and tests. Sara’s recovered and Dad’s test results were good. Another storm weathered. I’d never wish that I was not the go-to guy for them — I prize being able to be there for them. But it has its price.

My refreshing comes from quiet times like this morning. And from some focused time taking and processing and sharing photographs of beautiful things. And reflecting. And conversations with a God who loves me they way I am. And having a loving wife who puts up with me even when I’m weird.

I’m hoping that you’re having times of refreshment along the way too.

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.

Hospice: Black Bottom Pie, Dogs, and a Phone Call

Posted in Caregiving, hospital visits, Personal on January 19th, 2010 by Jim Hughes – 2 Comments

Black Bottom Pie

Eloise and I were in Florida for the long weekend visiting her brother Steve in residential hospice. I wrote briefly about our visit on Saturday. Here’s a brief update on our Sunday and Monday visits.

Eloise had been thinking about what she could do special during this visit for a while, and decided that making Steve’s favorite dessert, black bottom pie,  would be it. It was the special food their mom always prepared when Steve was coming home. It was his “birthday cake.”

It’s not an easy pie to make. You first prepare a custard, then make half of it chocolate which forms the bottom layer. The other half of the custard has beaten egg whites folded in along with some vanilla, and forms the second layer. After these layers have set, it’s topped with whipped cream. We spent quite a while just shopping for what Eloise needed to make the pie. We ended up having to go to three stores to find an electric hand mixer. It turned out to be one expensive pie, but we just decided to call it priceless.

When we arrived at the hospice, Steve was sleeping, and really didn’t want to wake up, so we watched a little football, and even our cheers and groans at the Cowboys didn’t arouse him. However, a guy came to visit with a therapy dog, and that helped Steve start waking up. He was about to go back to sleep when I started telling him that Eloise had made him a black bottom pie. That made him decide to wake up!

With an aide helping him, he ate a whole piece, mumbling appreciation and even rolling his eyes at how good it tasted. It was worth all of the work to see him enjoy it, to talk about how important it had been in his life, to explain that it was his mom’s recipe. We made sure the staff all got some as well. He talked some, but mostly dozed after eating the pie.

Monday our goal was to take his dogs out of the kennel and take them to visit Steve. It’s been the thing that he has most wanted since this all began. We had planned to do it Saturday, but the kennel was closed for the weekend.

Steve’s dogs are golden retrievers, and though they are good dogs, were quite a handful for us. But once we got them into his room they settled, and aside from wanting to drink out of the toilet, were well behaved. Hospices are dog friendly places, and encourage pet visits. The staff had all heard about the dogs, and all came in to meet them and be part of the time together. Steve really enjoyed the time with them, and talked more and even laughed several times while we were there with them. The dogs didn’t really understand the bed thing, but we were finally able to help the dog Steve raised from a pup to get up on the bed with him so that Steve could hold and rub on him. It was an emotional scene for all of us.

Shortly afterwards, we said our goodbyes, as we had to leave to take the dogs back to the kennel and catch our flight home.

We had been able to have some memorable moments, and it was a good visit.

One of the interesting twists to all of this is that Steve’s condition has stabilized to the point that he will move to a different resident hospice house this week. He doesn’t require the level of care that is provided at his current house. In fact today, Steve called me on his cell phone and we had a good conversation — much better than any we have had in person since this all started. He didn’t remember that we had been there for the weekend, but with prompting remembered the dogs coming and the pie. A week ago he couldn’t talk, and today he has been talking since he woke up.

We don’t know what the days ahead hold. But we know that God has been at work in all of this, and for that we are thankful.

Visiting the Hospice

Posted in Caregiving, Grief and Grieving, Personal on January 16th, 2010 by Jim Hughes – 4 Comments

© Jim Hughes 2010

We’re back in Florida to visit Eloise’s brother Steve who’s in hospice.

When we made the reservations over a week ago, we didn’t really know if he’d still be alive. And in fact, last Sunday night, the hospice folks really didn’t think he’d make it through the night. But he’s rallied, and we got to spend some good time with him today.

What I noticed most was how aware he was of our presence, and that he heard everything we said, even when we thought he was asleep. He’s having a hard time putting words to his thoughts, and it’s very difficult to understand him, but we managed to have some short conversations.

I was reminded how important presence is — whether there is a conversation or not. Steve mostly slept this afternoon, and Eloise and I would read or just sit. But every so often, Steve would open his eyes and look at us, and every once in a while he’d say something or try to answer a question.

I could tell he’s glad we’re here to spend some time with him. And I’m glad too.

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.