Hospice Humor

We've received overwhelming support since we announced on Facebook that Dave is on hospice care. Thank you so much for taking the time to read this blog. It’s quite therapeutic writing it.

Reasonably, people assume we are in a perpetual state of sadness. At the beginning it was hard, but right now it isn’t so bad. Really. We’ve had plenty of time to process and prepare for the inevitable. Dave has asked us to save our tears until we need them. “Right now, help me celebrate life.”

When Dave started hospice, we thought the end was nigh. He made his bucket list. Within a few weeks Dave had asked six friends to be pallbearers and chose music for the celebration of life service.

I made a mad dash to Magnolia’s Cottage to pick out clothes for the visitation and service. I told the store clerk, “I have 15 minutes. Please help me pick out two outfits.” In 20 minutes, I was out the door with two pairs of dressy caprices, two blouses, a necklace, chunky sandals, and a purse. Well, I guess I better now go shopping for pants and closed-toe shoes. It may be after the snow flies that we say the final goodbye. I told Dave to start working on his Christmas list.

It took a little longer to meet with good old Augie, long-time family friend and funeral director. Can you imagine doing funerals when you’re 86? Augie has kept count—20,000 funerals in his lifetime. Talk about commitment to your work.

I tried going through pictures to print for the visitation. That was too emotional. I’m giving that task to our kids.

After all necessary prep was done, I offered to make Dave’s favorite comfort food his mom made when he was a kid. Dave keeps adding to the list. He’s gained 30 pounds (with the help of being on steroids) and me 10 (I have no excuse). Dave said he looked at himself and said his cheeks look like a basset hound’s. That’s the steroids.

At the beginning when Dave napped quietly in his chair, I’d watch his chest to see if it was moving. A few times, he sensed me standing there, opened his eyes, looked at me and said dryly, “I’m still alive.”

Lately, I gently touch his shoulder or hand as I walk by. One day he rolled his eyes and said, “You’re making me feel like you’re going to start shaking me and shout ‘Annie, Annie, are you okay??” Oh, boy.

So, here we are. It’s kind of like being in labor before delivering a baby. How long is this going to go on?

Kay, Dave’s hospice nurse, has been very helpful in answering my questions. She’s had 25 years’ experience in hospice care. She’s much like me. Our humor could seem to others to be a little macabre (depicting horrifying things related to death. The American pronunciation is “muh-ka-bruh, just in case you probably didn’t want to know).  

But, what do you do? Humor helps with anything, even at end of life.

I asked Kay how people react to knowing they are going to die. She says it is different for everybody, but she’s noticed for those with faith, it is much easier. There is peace in dying.

I guess that is why we are doing okay.

One day, Dave isn’t going to wake up. I’ll deal with that particular sorrow when the time comes. Right now, we’re concentrating on living.

Our People

My friend, Joy, told me the last time we spoke she had been thinking over her life about who her people were. She told me, “Jacci, you are my people.” I was honored and will always treasure those words.

Prior to her getting sick, our paths hadn’t crossed for many years. We had been fast friends from the first day we rode the kindergarten bus together (actually it was a station wagon then) and all through college and my years of living in California.

We laughed because even though I had been back in Minnesota for over 30 years, we talked more when I was 2,000 miles away.

During the Covid lockdown, Joy was diagnosed with cancer, and we rekindled our friendship. We weren’t able to meet, but we began texting and calling one another regularly. We laughed as we remembered all the goofy events of our past, and we talked life, family, and faith. By the time the lockdown lifted, Joy was too ill for visits. I regret we weren’t together while she was sick, but I am so glad we were in each other's lives at the end.

We don’t have to think very hard who our people have been while Dave has been in hospice. Our family, of course—our kids, grandkids, siblings and extended family. We are fortunate we both still have our moms who are a comfort to us. Even though my mom has dementia I still cry on her shoulder. No one can ever replace your mom.

We have a circle of friends who have been stopping by, calling and texting us. Some live close and others are friends from years ago who are now scattered around the country. Some of our greatest support comes from people with whom we’ve become friends just recently.

Surprisingly, though, are the people who have been absent. You wonder if the years you spent with them meant anything. You try to offer grace. You don’t want people to reach out only because they feel obligated or who just don’t know what to say. It would be awkward for them and for us. You’d rather be with people who come because they enjoy being with you. It feels normal, not forced.

I read this article, When Your Spouse Has a Terminal Illness, in Focus on the Family. In the article, a husband whose wife passed away from breast cancer gave guidance to those whose spouses are going through terminal cancer. He said, “Realize that some friends will back away from you and your spouse. Yet, there will be others who can walk with you through the journey.”

“If you go to somebody who hasn’t been through much in life, they don’t know what to do with it. But people who have been through the fires of sorrow will have time for you and a level of understanding.”

He referenced a devotion by Oswald Chambers that says, “You can always recognize who has been through the fires of sorrow … and you know that you can go to him in your moment of trouble and find that he has plenty of time for you. But if a person has not been through the fires of sorrow, he is apt to be contemptuous, having no respect or time for you, only turning you away.”

We’re so grateful for the people who have hung in with us. You’ve been present. That’s what we need the most. Thank you. You are our people.

When Dave and I looked a little more "fresh." 

P.S. I was going to post pictures of the people who've been walking alongside us, but realized I don't have photos of many of them. I guess you forget to take pictures of the people in your everyday lives--that needs to change. So, instead I'm posting one of my favorite pictures of Dave and me taken 12 years ago at Amber and Paul's wedding. Shoot, we've aged just a bit!

Anticipatory Grief

Just in the last few days I've heard several people speak of anticipatory grief--the description of what people experience as they wait to lose someone. Dave's been on hospice for the last six months. Anticipatory grief fits.

We discovered in January that residual brain tumor tissue from Dave’s previous surgeries had grown, and rather rapidly. 

When the neurologist gave us the news of where the tumor was, next to the brain stem, he said "What on God's green earth are we going to do about it?" He suggested palliative care then hospice for comfort care. When pressed he said it would be months, not years.

Dave's first brain tumor occurred when he was 17. It was a life-changing event. He went from all-star athlete with full-ride scholarship offers to having to learn how to walk and talk again.

Dave’s always pressed on no matter what’s been thrown at him. Five brain and two spinal surgeries to remove meningiomas, rounds of radiation treatments, and spinal nerve damage that left him with debilitating pain for the last four years. If that wasn’t enough, a year ago he underwent what is called The Mother of All Surgeries to treat peritoneal mesothelioma. The procedure involves removing the lining from all the internal organs, pouring in heated chemo, and rocking the body back and forth to kill off any remaining malignant cells. Dave's suffered through more atrocities than one should have to endure. 

For the first time, Dave admitted he was tired. Enough is enough.

Thankfully, Dave isn't in a lot of pain and still has his dry wit. His balance and vision are progressively getting worse. He experiences extreme fatigue and naps through most of the day. His face is puffy from months of being on oral steroids to reduce swelling.

A happy benefit of the steroids is the pain that has sidelined him for the last four years has been reduced to "almost nothing" (probably something for the rest of us, but Dave's pain tolerance is that of a super hero's). He can now go on occasional drives with me, something we haven't been able to do together for a long time.

The steroids have also dramatically increased his appetite. Dave grazes throughout the day. I stock the pantry with the snacks he craves--Vanilla Wafers, Twizzlers, Lorna Doone's and Cheez Its. He's never been much of a drinker, but now he looks forward to Beer-Thirty every afternoon with one of his favorite craft beers. Dave says he doesn't give a rip about the weight gain. Can't blame him there. The trade off is good for not having to endure relentless pain. He said he'd like a t-shirt that reads "Steroids and Carbs Make Me Happy." Our friend, Sandy, had one made. Got it yesterday in the mail.

It's actually been a great summer. Our kids and grandchildren have been coming over for family dinners. Our little posse of friends show up and hang out with us regularly. We've reconnected with friends from years ago when we lived in California. Dave and I enjoy just the simple pleasures of drinking coffee on the deck, watching the antics of the hummingbirds at the feeders, listening to worship music, and recounting all the ups and downs we've had through the years. It's a season in our lives where we're not in a rush to be somewhere else. We can just sit and be. It's glorious really. 

Sometimes we need a break from each other. I hole up in my art room to paint. Dave's good buddy, Mark, comes to hang out with Dave on Thursday nights while I go to a support group. Every day I try to go on a walk or a bike ride.

There are cool perks with receiving hospice care. Weekly Dave gets either a massage or reflexology treatment. Caregivers get in on the reflexology treatments too (which is essentially an amazing foot massage). The reflexologist's name is Julie. When my treatment is done, Julie leaves me paralyzed in the recliner to mark the date she will be back on the fridge calendar. Then she quietly tip toes off. Bless her.

Moments of grief sneak up on us--Dave for what he has lost in this life. Me for what life will be like without my rock, the one who listens to me wail and then talks me off the emotional cliff I sometimes find myself.

Anticipatory grief, yes. But there is also the excited anticipation of what Dave will experience--whether it be weeks, months or a year from now. I imagine the voices of billions upon billions of believers throughout the generations joining with all creation to worship the amazing God of the universe. Sometimes I'm a little envious Dave will almost certainly beat me there. 

I've watched this video countless times since Pastor Ty shared it with us on one of his visits. I've shared it too with a number of friends. What awaits is beyond our comprehension. Anticipatory JOY!