Well Used

Some weeks I need my Moleskin.

I need to physically write things down, bullet lists of to do’s that I can check off as I go.

For some reason, it just doesn’t work the same when I do it on the iPhone. I’ve tried all the apps, some of them very good. But I end up feeling more overwhelmed, instead of more focused.

During Dad’s illness and recovery period, it was my go-to for information ranging from his Rx list to Dr. contact information to lists of what I needed to handle and ideas of how to do it.

It’s not a big Moleskin. It’s one that will fit in my pocket, one which will allow a pen to be held when it’s kept closed by the elastic closure thingy.

When things are going along pretty smoothly, I don’t need it. I keep up with things in my head or on my calendar.

But when things get hectic, as this week’s going to be, I grab it and start writing. It’ll be in my pocket the whole week, keeping me focused, keeping me comfortable, like a blankie.

What helps you be focused and comfortable during hectic or stressful weeks?

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.

My buddy Jim Clarke got his new lungs last Wednesday night. The fact that a double lung transplant is even possible just boggles my mind. And yes, it’s a BIG deal — for Jim and Pam and their family, and for all of us who love them (which is easy because they are such loving and serving people). I’m so anxious for him to recover to the point that we can enjoy his laugh again!

Also last Wednesday, I spent time with one of our members who is in her last days. She and her husband have been though so much the last couple of years — she fighting cancer, him recovering against all odds from a massive stroke. However, as I visited with the family, we were able to talk about all of this and even laugh together frequently. Even though they have been dealt difficult blows, they’re handling it all with grace and gratitude. And as I prayed with this beautiful lady who had been non-responsive, she audibly prayed along with me.

In addition, I have two friends caring for their spouses who have suffered debilitating strokes. And several who have lost their dads in the last few weeks. And even more who are caring for their aging parents, dealing with all kinds of difficult issues.

The way they, and we, are getting through each day is the commonality that brought us together in the first place — our faith, and our hope. We are able to face each day through the presence of God — often seen through those dear people he has brought our way — in our lives.

Today I’m especially thankful for that.

Missy Dog

It’s my dog’s fault. Well, sort of.

Missy Dog has abundant energy, and is seemingly always either receiving my attention or getting in trouble in an attempt to get it.

Of course, the reasons I haven’t been writing are more complicated than that, and it’s not fair to blame it all on Missy.

On the positive side, I’ve been devoting a lot of time to my photography. There’s so much to learn, so much to shoot, so much to post process and to share.

I’d love for you to drop by my personal blog (which I’ve converted to be primarily a photo blog) to see some of my recent shots and how I’m doing with this newly revived passion.

There was also both an unconscious and conscious decision to pause my writing on this blog. We’ve had a lot going on personally — difficult seasons — so far this year.  Several of my last posts were about my brother-in-law being in hospice. Happily I can tell you that his condition has improved so that he is living independently. But then in March, my 85 year old dad had a heart attack followed by pneumonia, resulting in 10 days in the hospital and an extended recovery. That thrust me into an essentially full-time caregiving role. Happily, his recovery has gone very well. Not only have these situations required a lot of my time, but a lot of emotional energy. Writing about them and difficult seasons in general has just not been something I’ve had the energy to do. And I’ve needed to focus what energy I have had into activities that provide renewal (like the photography).

I’ve missed the writing, though. And I have a number of things that it’d be good to write about. So I’m back — but with no promises about how frequently I’ll post.

Thanks for reading!

This is not the result any of us wanted.

We have prayed with great faith for healing, knowing it was against the odds of nature all along. If pure willpower could win this fight, this man would have won. If being greatly loved by so many people could make a difference, it would have.

After he signed the paper and the witness and the hospice representative left the room, we didn’t have words to give each other in conversation that would make any of us feel better or deal better. So we prayed to the One who understands how we feel, the One who can carry us through these difficult times.

The prayer I spoke was one of lament, telling God that this was not the result we wanted, admitting our pain, our frustration. But I also found words to express our love and faith to God in spite of not getting what we wanted, our total trust in Him to provide for our best good. And I also uttered a number of requests — for His care and protection and love for this family as they continue down a most difficult road.

As people of faith, we frequently pray for healing even in the face of long odds. We are praying for a miracle, for an outcome that flies in the face of logic, of reason, of grim statistics of nature.

Sometimes, admittedly infrequently, God grants our deep desire. I rejoice, and my resolve to keep praying for divine intervention is strengthened.

More often, He doesn’t. Then I express my lament, my sadness at the pain of this life. My resolve to continue praying for divine intervention is not lessened, but I am reminded that I, like Job of old, don’t know the answers.

I was reminded of Job yesterday, that in spite of pain and frustration, that he didn’t lose his integrity.

And that it was time to give that helpful book a fresh read.

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.

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.

© 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.

© 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.

They’ve been good.

But sometimes they’ve also been a little challenging.

We have a new puppy, and she doesn’t play well with others yet. I was stubborn, and refused to board her. I’ve paid for it. She’s now chewing on her toy Sara gave her. Actually, she’s chewing on the shell of the toy, as she has already gotten to the stuffing which I removed and threw away. But she doesn’t seem to care much.

Eloise and I have learned to answer the same question again and again as if it’s the first time it was asked. My mother-in-law is visiting for a few days, and her short-term memory problem is worsening. But she has had a great time playing with great grandchildren and being with family, and we’re thankful she’s here.

I think it adds so much to have four generations together for Christmas, as we did today with Reba and my dad being part of the celebration. Their traditions that they handed to us are a big part of how we celebrate the season.

Our daughter-in-law Kathy’s parents are also in town, and we’ve gotten to spend time with them last night as we had tamales and opened some gifts at our house and again today at lunch at Mark and Kathy’s as we opened more gifts.  It’s so good to share grandchildren with such fine people.

We’ve had wonderful food — some of it traditional in our family, and some new things which may become part of the our tradition. Sara made Alabama Fruit from her grandmother’s recipe, and Kathy made a corn casserole that’s become part of the tradition. Last night’s tamales was a first for us, but it’s a long-time Texas Christmas tradition, and likely one that will become a standard for us as well.

But with all of this good food has come lots of dishwashing and cleaning. Our last load just went in the dishwasher a little while ago. Good things come at a price.

I guess what I’ve been thinking about is that our Christmas this year is just a slice of life. It’s the joy of family being together sharing food and each other, but also the challenges that this life brings. Part of it’s fun, and part of it’s hassle, and part of it’s just plain work.

But as I think over the past few days, what I choose to dwell on are not the challenges, not the hassle, not the work. I choose to dwell on the smiles, the laughter, the joy seen on the faces. I’ve captured many of those digitally, even more through the camera of my mind. And I’ll replay them again and again in coming days.

I hope your memories of this Christmas are also ones of joy!