Learning as I Go - Persistence, Patience, and Wisdom

If you have read any of my posts, you know that my grandpa has terminal cancer. He currently has cancer of the prostate, spine, colon, bladder, liver, and just recently it has spread to his brain. For the record, he also has a non-lethal skin cancer on his head. That's why he always wears a hat, no matter where he is. In this picture, we were at the Nutcracker ballet at the Coronado Theater in December. He was already sick, but none of us knew it.

Hospice stopped treatment on his head a few weeks ago because it was excruciatingly painful and it was not going to heal before he passes. Really, the sores on his head are the least of his problems. 

Over the past few days, however, my grandma has decided that his head needed to be treated again. She has kept telling me, "It's getting worse, it's getting worse." I reply, "Yes, the sores are bigger but that cancer cannot really hurt him." She would just shake her head at me in irritation and continue talking about how great his head was doing before we got hospice. Every day for the past week, Grandma has told me again how much better his head was doing before hospice, when the other wound care nurse was helping with it. And every day for the past week, I have told Grandma that we stopped treating his head because it was extremely painful and it wasn't going to be cured. And every day, she would say the same thing to me again. The Bickford nurses and the hospice nurse have all told her the same thing. But Grandma has persisted, complaining that no one listens to her. 

After being ignored for almost a week, Grandma took matters into her own hands. She has no medication for his head in their apartment, but she had large bandages that she began putting on his head. I noticed the first pad Wednesday morning. I asked Grandma, and she claimed the nurse had done it. I said that it was going to be incredibly painful to take it off. She claimed that it would be fine if they just used some vaseline on it. Well, that afternoon the hospice nurse had to pull it off and it was excruciatingly painful, as predicted. We talked to Grandma about it. Grandma was very angry and claimed that he needed to have his head treated and it didn't hurt that much if they did it right. 

The next day, Thursday, there was another pad. The Bickford nurse told me that she had pulled one off and that when she had come in a few hours later Grandma had already put another pad on his head. We left it on until Friday because no one wanted to be the bad guy and pull it off. 

Today Lydia, brave Lydia, took on the challenge on Friday. She went in with the intent of taking the pad off Grandpa's head, convincing Grandma to accept that his head could not be treated, and taking all of the pads out of the room. She spent an hour in there talking with them, and by the end Grandma had accepted it. She let Lydia take the pads out even though she was very nervous about it. 

By this evening, Grandma was already complaining again that no one listens to her. She had forgotten most of what Lydia had told her. All she remembered was that no one had done it her way. She told me she doesn't like hospice because they won't listen to her. She told me that she knows best because she's the one with Grandpa all the time. She believes that she knows better than all the doctors and nurses combined because Grandpa belongs to her. The complaining hasn't ceased, but at least I know Grandpa's head won't hurt anymore. 

What My Dog Taught Me about Joys and Disappointments

You've all heard about Benny/Denny/Quinnie, my little dachshund/spaniel mix that the Grands adore. He has three names because I named him Quinnie but the Grands can't remember that. Grandma calls him Benny and Grandpa calls him Denny. He answers to all of it, thankfully.

It is a mutual affection because Benny/Denny/Quinnie loves them, too. He dances by the door each time I get ready to leave in hopes that I will take him to see the Grands. The whole time that he's there, he sits on their laps, entertains them with his toys, and growls protectively at anyone who comes to the door. Grandma takes him for walks around the building.

These days, I call and make sure that Grandpa is having a good day before I bring Quinnie over to see them. Well, today Grandpa was having a good day and I thought all was well. At 1 PM I told Quinnie that he was going to get to go to Grandma and Grandpa's house. He was sooo excited he tore around the house and danced by the door. He could hardly wait to have his leash put on him!

We got to their building, and Quinnie couldn't contain his joy as he sprinted toward the door, tugging at the end of the leash. We got to the apartment, opened the door . . .

 . . . and immediately I knew something had changed. Grandpa was no longer having a good day. Grandpa was leaning back with his eyes closed in obvious pain. Grandma explained that Grandpa had a tummy ache that just started. His lunch didn't agree with him. I let Quinnie go to Grandma but not to Grandpa. Quinnie was clearly a little confused. He wanted to go to Grandpa, too, but Grandma kept him on her lap.

I stayed for a few minutes. Grandma and I took Quinnie on a walk around the building, and Grandma saw one of her friends rolling out streusel in the dining room. Grandma got distracted and wanted to help her friend with the baking, so I realized that I'd have to take Quinnie home. I started to walk out with Quinnie, but my joyful pup wasn't so excited anymore. He trotted along obediently, but his head was down. We got home and Quinnie curled up on the couch with the other dogs and took a nap.

It occurred to me that disappointment was a familiar feeling with Grandpa's illness. Because you never knew what the day would bring, there were many days when things didn't turn out like you'd hoped. But Quinnie was giving me the perfect example of how to cope with disappointment. Be patient, go about life as usual, and wait until the next opportunity.

Just a few days later, Grandpa was feeling better and I took Quinnie over to see them for the afternoon. Quinnie was just as excited as ever. At last, he had the afternoon he'd been wanting.

Don't Lose Heart with People

I think we all lose heart with people sometimes. We hear the news of murders and violence, we look around our communities and see people's rudeness and lack of consideration for others, we see the road rage, and we are tempted to lose heart. But sometimes it's just a matter of where we're putting out attention.

This week I've been reflecting on the truly wonderful people in my grandparents' lives. These are people who love them enough to be there for them, who pray for their welfare, who seek to be a part of their lives in these last precious days and months. People who go out of their way to be there and do things for Grandma and Grandpa in whatever way they can.

Two shining examples are Nick and Debbie Neff. Nick and Debbie came to see the Grands last week, driving all the way from southeastern Michigan to northern Illinois just for a one day visit.

My grandparents have known Nick since he was knee-high. The Grands began going to the same church as his parents, Joe and June Neff, back in the 1950's and they became fast friends. Joe and June had four boys. I believe Nick was in the middle there somewhere.

He and his brothers Christopher, Timothy, and Danny were an energetic bunch compared to my grandparents and their only daughter, my mother Gale Lee, but they had so much fun together. My mother loved running around with the boys and the Grands and the Neffs had a grand time chatting away the hours. They went camping together. The Neffs had a crazy big 16 person tent. That was a wonderful outlet for the energy of four little boys and one hyperactive girl.

The Neffs lived in a large two story house with white pillars out front and red shutters. From my visits with Grandma to the Neffs, I remember those pillars and shutters clearly. I thought they were really bold and beautiful. They were far different from the small brick ranch that the Grands lived in. The Neffs lived on a busy boulevard, but their beautiful house was set back from the road a bit.

My grandpa recalled last week that one day Joe and he were sitting in the dining room of the Neffs' home, and the boys were running around the house in a circle, chasing each other from room to room. Apparently, the chaos was starting to get to Joe. As they paused in their game, Joe said to them, "Why don't you boys go outside and play in the road?" The boys ignored him, but my grandpa got so tickled. Even now, this memory makes Grandpa laugh. What a blessing to see him laugh!

Nick and Debbie drove six hours one way to spend one day with the Grands, but you know what? That effort paid off in the bright smiles on the Grands' faces and in the new memories that Grandma and Grandpa now have. What does it mean to love someone? How much does it matter to spend one day with two little old people in an assisted living home? More than you can imagine...

The next time I think that a few minutes or hours aren't worth spending with someone because it's so little time and so much effort, I'll think of Nick and Debbie's trek across the Midwest to spend one day with the Grands. Thank you, Nick and Debbie, not only for loving the Grands but for being an inspiration to all of us.

Grandma's Wisdom: Treasure Each Precious Day

When Grandma and Grandpa were still living in Dexter, I bought Grandma a devotional book for Christmas called Jesus Calling by Sarah Young. Grandma and I decided to talk each night and share our devotion for the day. It was a beautiful time, just a few minutes where she and I would read, talk, and pray together. Sometimes Grandma would understand the devotion right away and sometimes she needed me to explain it to her. Those moments were so precious that words really do fail to capture them.

Since the Grands came up here last June, we haven't been sharing our devotion as often because we see each other more and we just never got in the habit of it. But more and more we have been reading them together again. Grandma always reads hers at night and tells me how much it meant to her. She asks me if I read mine. Now that she's on the Exelon medicine for her thinking, she usually doesn't need me to explain it. That's a beautiful thing.

So last night I called around 8:45 and we decided to share our devotion. This devotion, written from the perspective of Jesus as if He were talking directly to us, said, "Seek my face more and more. You are really just beginning your journey of intimacy with Me. It is not an easy road, but it is a delightful and privileged way; a treasure hunt. I am the Treasure, and the Glory of My Presence glistens and shimmers along the way. Hardships are part of the journey, too. I mete them out ever so carefully, in just the right dosage, with a tenderness you can hardly imagine. Do not recoil from afflictions, since they are among My most favored gifts. Trust Me and don't be afraid, for I am your Strength and your Song."

After I read this, I said that the part about God meting out hardships was hard to accept. I wasn't even really sure I agreed with that, but then if God is omnipotent He has to allow the afflictions because He could stop them at any time. Really, God is a confusing subject, way bigger than I will ever understand. And I'm perfectly happy with that, because I am far far far from omnipotent or omniscient. But when it comes to ideas like God metes out hardships, I struggle. The childlike part of me thinks, 'Why would God want to do that?' I was thinking of Grandpa and his suffering. I was thinking about all of the suffering I've endured and the suffering I see in others, especially the innocent and vulnerable. Why, Lord?

I know there are complicated theological explanations for all of this, but I think Grandma's was far more amazing than any of them. When I said that it was hard to accept that God has a hand in our afflictions, she got that strong undertone in her voice, that authority that says she knows she's right about something, and she said, "No, Lara, the fact is that the Lord has to take us home some way. We're all going to have something wrong with us so He can take us home. Now that's just common sense. And this thing with Grandpa, well, that's the Lord's way. We all have to go some way. It's just common sense. And I just treasure each day with him. When we are here, just the two of us, it's so peaceful. I'm so content. These are precious days. I want you to do the same thing, Lara. Treasure each day."

Treasure each day. That's Grandma's lesson to me, one that I think is too often lost on me. I have the illusion of time, the belief that there is plenty of time for what I want to do and who I want to spend time with. The idea that there are no guarantees is true, but sometimes it is meaningless to me because of that illusion of time. But I'm learning. I'm learning to treasure the days with my sweet Grands because I know they are so few. I just pray that I can treasure all my days and all those precious moments in life that only happen once. Because truly, nothing ever happens more than once. And there will come a day when my Grands will no longer be here. That day is in the not-too-distant future.

I think about this with my son, too. There will come a day when my son no longer lives in my house. The day has already come when he will never again sit on my lap. I miss those precious moments. I console myself with the thought that there will other treasured moments to take their place, but really that is feeding the illusion of time, too. I can't really know that. Even with my husband, will I someday look back on these times and wish I had treasured them more because they are gone forever?

I think we avoid thinking about things like this because it seems depressing and morbid. We don't like to think about loss, about how brief life really is. But if we don't face the reality of loss, will we ever fully embrace the reality of joy? Can we treasure our days without facing the reality of loss? Or do we remain trapped in the illusion of time?

My grandma has no illusion of time, and it has sweetened each day of her life. My grandma is a very wise woman.

Accepting that It's Going to be Okay

I like to fix things. The Grands like to fix things, too. When things are broken or not going right, we like to do something to make it better.

Maybe that's why we feel the way we do - out of control and sinking fast. I feel like we're on the Titanic in those last few hours when everyone knew it was sinking. We know that Grandma and I are going to end up on the lifeboat but Grandpa isn't. It's devastating to sit here and write this, knowing that he isn't going to survive this.

He's getting worse. His energy fluctuates and his pain is rising and he has intense itching at intervals throughout the day. He throws up a lot. It seems like his symptoms are always a step ahead of us. Last week he was incredibly sleepy, so much so that he couldn't keep his eyes open. It turned out he was being given only oral Benadryl for the itching, because Grandma and he had refused the cream. But I knew that Benadryl in combination with the Norcos he's taking would make him really really tired. So I called and everyone agreed to get him off the oral Benadryl and use the cream. The itching is related to his liver function so the oral and topical should work about the same. At least that's what I was told.

After he got off the oral Benadryl, he wasn't nearly as tired but then he was in excruciating pain. It was terrible. He couldn't stand the pain and the nurse was with someone so it took her a few minutes to get to him. When she came, she gave him another pain pill but it took about half an hour for him to feel better.

Then he started throwing up. He threw up all afternoon and all night. In the morning, I stopped by and he was still sick. So I went to the store and got him some bananas, applesauce, and toast. Most of the BRAT diet. And of course Vernor's ginger ale. He wanted to eat so he had some of the ginger ale and felt better. He wouldn't eat the toast so I ate it. I hadn't eaten all day and by that time it was 1 o'clock.

He had been itching, too. He said that when he rubbed his arm, it felt like sandpaper. That morning the nurse had done a great job helping him stop itch. She had scrubbed his skin wherever it was itching and then she put the topical cream on him. I told him that was wonderful because the sandpapery feel was from the toxins that his body was emitting through his skin. Since his liver isn't processing toxins very well anymore, they are coming out through his skin and his digestive tract. And they are affecting his thinking.

Because he's hallucinating now, too. He was sitting in his recliner and he thought he was driving his car. He kept trying to get the recliner to go. Grandma came out and saw him moving his hands and arms, and she said, "What are you doing?" He said, "I'm trying to get this thing to go. I gotta get to work." Grandma said, "Dad, you're not in a car." Then he could see that he wasn't. He was really upset about that, but he did feel better when I told him that it was related to his cancer. I said, "Grandpa, you're not losing your mind. The toxins are affecting your thinking, too."

But the itching continued. The itching had been bad before and it was getting worse. Grandma thinks this is because he's not getting the oral Benadryl but it's not. It's because the itching is getting worse.

Today Grandma had a complete meltdown because of Grandpa's itching. She was convinced that Grandpa needed oral Benadryl, that that would fix everything, and it was all my fault that he couldn't have it. She said that all the nurses told her that I was the one that wouldn't let him have it. She went completely nuts. It was awful. So I hung up the phone and called the RN coordinator, Lydia, my savior in dealing with Grandma. She went in to talk with her and they calmed down.

In the meantime, I called hospice and Lisa said that there is a medicine that is good for this itching. She would evaluate him on Wednesday and then call in the prescription. At the time, that seemed fine. But after a while, I realized that we probably needed that prescription right away. I called Lydia back and she called in to get that prescription. Hospice got it to her right away, but it was a while before the pharmacy was ready to deliver it. Several times in the evening, I called to see how the Grands were doing and if the medicine had come in. Every time, they were patient and caring with me. And I knew they were with Grandma, too. At 8:30, I learned that the medicine wouldn't be there until 10. I offered to go get it, but do you know the director of Bickford said she'd go get it. She got in her car and went to the pharmacy at 8:30 at night to get Grandpa his medicine.

By now he has it, and maybe he'll rest a little better tonight. We can only hope. Meanwhile, I sit here feeling lost and hurt that Grandma blamed me for his itching. His cancer symptoms are not my fault. Lydia said that sometimes people just need someone to blame. Who do I get to blame?

No one. There's no one to blame for this. It's not going to be okay, and there's really nothing any of us can do to change that.

When I was in high school, we had to take a class called Life and Death. It was a religion class (I went to a Catholic high school). We all called it Death and Dying, because it seemed like that was what it was really about. In that class, I first learned about Elizabeth Kubler-Ross's stages of grief. I know there's been some change to it over the years, but her research is still the foundation of our understanding of how we cope with death. If I remember right, the stages are denial, anger, bargaining, depression, isolation and acceptance. I may be missing one, but this is most of them. I think it's safe to say that I am past bargaining but I'm not at acceptance. I am having to face that it's never going to get better. But I'm not okay with it.

My grandma still thinks she can control this by raging against her perceived opponents (me and the nurses), demanding that people give him pills, and trying to fix the symptoms. But none of that is going to work, because he isn't going to get better.

As I'm writing this last sentence, I think about Heaven and I realize that nothing could be more false. I realize he's going to be better off than he ever has been before. He's going to be in Heaven where there is no more pain, no more suffering, no more loneliness, and no more sorrow. We won't be there with him just yet, but what is 50 years compared to eternity? I'll be there, too, within a blink of an eye. That's what I think when I think about Heaven.

But then I think about earth and I realize that 50 years is a long time. It's hard to accept that it's okay that he's dying, that it's going to be okay because he's going to Heaven. But I think what's hardest to accept is that I'm going to be okay without him. I've never lived without him, and I just can't imagine what it will be like.

I know I'm a grown woman but he's my grandpa. I spent a lot of time with my grandparents when I was growing up. The Grands were the only ones that provided me with any stability. So now, as I face losing my grandpa, I am losing the only source of stability I ever had as a child. Somewhere inside of me is a little girl who has always known that Grandpa was there. Grandpa would always be there to lean on and take care of things. Grandpa would always know what to say at just the right moment.

Who can I lean on now? I turn my head to the left, and I see my favorite picture of Jesus. I'll lean on Him, and everything will be okay.