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.

Joy, Challenges, Hassle, and Work

Posted in Personal on December 25th, 2009 by Jim Hughes – 1 Comment

It’s Christmas night, about 11:00, and I just sat down to do some thinking about the past few days.

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!

Mercy and Grace: The Greatest Gifts

Posted in Personal, Self Care on December 24th, 2009 by Jim Hughes – 1 Comment

Ready for ChristmasAs I’ve gotten older, there are two gifts that mean more to me than all of the others: mercy and grace.

It’s not that I don’t dearly appreciate the gifts of having enough and good health and toys and meaningful things to do.

But having God, family, and friends love me in spite of me is truly the priceless gift. They know me for who I really am, and it’s still okay. That’s an amazing feeling.

I hope you know that kind of love this Christmas season.

Merry Christmas to you, and thanks for your gifts of mercy and grace!