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.

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.

Seeds

My 85-year old dad called this afternoon and read me a letter from his primary care physician.

In essence the letter said that the physician was now associated with a certain Medicare Advantage plan, and that his office would be happy to explain the advantages of this particular plan and answer any questions.  It also presented some of the benefits of the plan, along with other marketing information.

Since it came from his doctor, Dad was wondering if he needed to investigate making a change from his current plan. After all, the doctor was recommending it.

We talked, and agreed that he should stay with the plan he currently has.

To me, this feels like a breach of trust between a physician and his patients. The physician obviously has a financial interest in the plan or he would not be spending money to market it.

What do you think?

That’s going on at our house.  Jenny Dog is a mixed breed who is 14 1/2 years old.  That’s geriatric for a dog, no matter what you use as a multiplier to get equivalent human years.  Based on her size, she’s probably somewhere between 90 and 100 in human years.

She’s slowed down a lot, just like people do as they get older.  She sleeps a lot, and is not as interested in exerting a lot of energy unless it is to get a special treat.  She’ll lobby me mercilessly in the evenings for a treat, and I really believe it’s her main entertainment in life.  And any time we come back in from being away, she’ll check to see if we brought in a sack that might contain a morsel of food.  And if we’ve been around other dogs, we get a special check.

She likes to follow me around, knows my habits well, and even tries to anticipate where I’m heading.  She no longer follows me around as I mow, however, and really had rather be inside in the air conditioned space than to even hang out on the porch.

She’s had a couple of major medical issues in her life.  She had heart worms as a pup, but weathered the treatment well.  The major issue has been an intestinal problem where her intestines were swollen and not functioning properly due to food allergies. It was resulting in liver and kidney disfunction as well, but fortunately a good vet figured out what was going on.  Unfortunately for Jenny Dog, it means eating a special vet diet which she doesn’t think is very appetizing.  She’ll do her best to beg, steal, or borrow some human food that tastes better.

During the last week or so, she’s been having some trouble getting her back end up when she’s ready to get out of a chair.  She can still bounce up into the chairs with no problem, it’s just getting back out of them that sometimes gives her a problem.  Just another sign of her aging.  She also has problems sometimes with the tile floor, which is also a common issue with older dogs.  It means that sometimes I have to help her.

And like all of us who are aging, her hearing and sight are suffering too.

It’s become painfully obvious to us that her time is limited.  It’s also a constant reminder that we’re aging, and can’t do some of the things we used to do effortlessly.

And taking care of an aging dog is just another part of this journey.

Tweet About WSJ Article

For example, we can have cancer, and our perspective may be, “I’m dying of cancer.”

Or, we can choose to have a different perspective:  ”I’m living with cancer until I pass.”

This example is from an article in today’s Wall Street Journal discussing a program for helping cancer patients deal with their illness.  While it’s dealing with cancer patients being able to find meaning for their lives in the face of their illness, it has a lot of value for those of us facing other challenges.  I highly recommend that you read it.

With cancer, nearly everyone’s biggest fear is dying.  But it’s usually unspoken, unsurfaced even.  Once it’s surfaced, the fear can be dealt with.  One can choose to adopt a perspective that gives life meaning and purpose, that takes control away from the fear.

But this principle is much more widely applicable.

Any chronic illness — heart disease, diabetes, arthritis, and any of so many others — generates fears.  What if I have another heart attack?  What if I have to live in a wheel chair?  What if I …?

Your fear may not be from a medical condition, but from a situational condition.  What if I lose my lose the ability to live at the standard of living I’ve become used to?  What if I lose my job?  What if I …?

So what fears are you, or those you love, living with that haven’t been dealt with?

How could you, or could they, benefit from a change of perspective?

Worth some thought!

We either communicate to each person that they have value, or we communicate to them that they don’t have value to us.

If we make eye contact and smile, we communicate in a very strong way that we have recognized their presence, and that we are pleased to share space with them, if even for a moment.

If we avoid eye contact and a smile or nod, then we likewise communicate in a very strong way.  Except this time the message that person receives is, “I don’t recognize your presence, or if I do, I don’t think you’re worthy of my even brief attention.”

There is no neutral.

I was reminded of this truth again yesterday in a series of Twitter posts by Kay Swain (@sandwichINK).  Kay was writing about some time she spent in a wheel chair, and how people would avoid eye contact and act if she wasn’t even present.  Since Kay writes about caregiving, she was applying the importance of being aware for when those we care for end up in wheelchairs.  Kay’s working hard on making eye contact and smiling now.  She learned the lesson first hand.  Thanks for the reminder, Kay!

Then this morning, my friend David Martin, a chaplain in the Fort Worth area for Lifeline Chaplaincy, wrote an article on the same subject in the Lifeline Chaplaincy blog.  David titled the post, Too Easy to Dismiss.  He also talked about people in wheel chairs, but broadened it to anyone who is “different.”  (It’s perfectly fine with me if you click on David’s link and read it before you finish my post.)

This is one of those subjects it would be easy to rant about.  But I won’t, in part because it’s something I have to continually work on.  So rather than preaching, I’ll settle for asking a couple of questions of myself and you as well.

1. What do we communicate about ourselves when we fail to notice, make eye contact with, and give a smile or nod to everyone we share space with, even briefly?
2. What do we communicate about those people to those people we fail to acknowledge?
3. Do we really want to be that kind of person?

I’m sitting at Panera Bread as I write this.  A young lady in the next booth is also writing, and as she got up and went to refresh her drink, we made eye contact and both smiled.  It wasn’t hard, it only took a second, and it felt good.

Won’t you join me in working on this?

Reba, Sara, and Ben making apricot turnovers

Reba, my mother-in-law, was able to come spend several days with us recently, and we made sure to build in some time with her great grandchildren, as well as activities with her grandchildren.

One activity our daughter Sara planned with her was learning how to make apricot pies — a treat that’s become a trademark for Reba.  Turned out that Ben wanted in on the activity too.

So for about an hour, Reba gave step by step instructions and some of her tricks learned through experience to Sara.  It was meaningful for both.

And of course the rest of us enjoyed the fruit of that interaction!

Dad showing off his patriotic hat

This past weekend, Dad came over to celebrate the Fourth of July along with Sara and Mark and Kathy and his great grandchildren.

He loves to interact with children by trying to entertain them.

Looking at these photos and reflecting on how much both enjoyed these times reinforces for me the importance of planning intergenerational activities for them.  Not only is it good for them, it’s great for the younger generations.

Things happen in intergenerational settings that simply don’t in more homogeneous age gatherings.  Seniors become childlike.  Children become more adult-like.  Seniors gain appreciation and respect for the younger generations.  Those from the younger generations gain respect and appreciation for the Seniors.

So, when’s the last time you arranged some intergenerational activities for the senior adults in your life?  Why not join me in resolving to do it more?