Missing Jane

Tending to Ending (forty-nine)

Dad and I talk about my mom often, but it feels particularly poignant here in Maui in December, two years after mom’s last Christmas. Here I can stand where her hospital bed was. I can lounge in the chair where she watched for whales and wondered each day at how she ever got to be so lucky. Here, I walk the same floors she and I paced together on the nights when she was  agitated and too afraid to sleep. 

And here, in the living room, I remember sweet moments like when my parents sang a duet, each holding the other’s gaze, my mom so weak her words came out as a whisper. I assumed it was a love song or maybe a solemn hymn, until my dad explained later, “No, that was the Whiffenpoof song! We sang it in college at the bars!” 

It has been a year and a half since my mom died. Memories from that time bring up such a mix of emotions. I found myself saying to my dad recently, “Everything went so well, considering how horrible it all was.”

Which was something my dad but maybe no one else would understand. Horrible makes sense. Alzheimer’s and cancer are horrible. But when I think back to how many people showed up just when we needed help, and how many things magically came together in ways I couldn’t have planned, and how much love and gratitude we were able to express. Well, it is an intense mix. A season full of ache and grace.

I want to share excerpts from our recent conversation here which include Dad’s perspective on familiar themes: grief of losing a spouse, the value of community, and some of the more confusing aspects of caring for a loved one with Alzheimer’s. I want to also take a moment to acknowledge and thank my dad and my sisters. This journey is theirs too, and they have been so very gracious in allowing me to write openly (all year!) about our family during such a tender time.

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The question I get most often from my friends these days is, How is your dad?

And you don’t know what to say, do you? (laughter)

I tell them you are doing well. But I always feel like I should explain more because of course this has been a profound loss. I think you’re doing well because you talk about missing mom and you are playing tennis and you aren’t isolating.

I think in many cases people find it hard to continue to do things they used to do as a couple. I talk with both my tennis friends and also our joint friends, and for that matter, mom’s friends. I even went to the ladies Saturday breakfast. I knew they would want to talk about mom, and of course they asked how I was doing. I’m not uncomfortable in that kind of setting.

That was the breakfast that used to be a book group that you went to with mom?

Yes, when the Alzheimer’s was getting bad, the only way she would go was if I went along. So, her friends made an exception for me. I was the only guy there.

I’m so glad because now it seems like it helped keep your social fabric somewhat intact too. Also with the Brennan’s. You had Sunday breakfast with them before mom was sick and when mom was sick and still now. I think there’s a temptation to back away from social situations when someone is sick, probably for lots of reasons, and especially with an illness that affects cognitive abilities.

Well, even when mom couldn’t go out anymore, that Caring Bridge site made such a difference. People could feel involved without feeling like they were intruding. People felt more included.

And you didn’t have to catch everyone up on what happened when she died. I think it meant everyone felt closer to you and after mom was gone, that probably helped.  

A strong community has definitely helped. You know when Dennis’s wife died a month or so later, I told him we were going to start having a widower’s BBQ once a month with tennis guys. Whoever wanted to come. Sometimes we had six guys and sometimes twenty. It was good for him, but it was good for me too.

It’s been harder to find ways to get together since the pandemic. But I can still play tennis, still have lunch outside. Zoom with my daughters.

What else has changed during this time of grief? And what has helped?

I am not as teary as I was. I certainly was emotional during mom’s transition. I’m not one of these never-cry guys. But the activity of caring for her, that part was really helpful. You don’t want to need to do it. But in those circumstances, participation felt like—at least I can do something. It’s not worth very much, but I have a purpose here.

You often say, “Jane wouldn’t want me to mope.” Did she say that?

Yes, that came from your mother. She actually used that word. And it was towards the end. It wasn’t like she used that word often. It was when she knew she was going to die—later on, she didn’t know—but there was this time she was aware. She said, “You know everyone dies, Ron. I don’t want you to mope.” It wasn’t like she repeated it. But that one morning she said it and I hung onto it because…

…it was one of the clear things she said when she was aware.

Yes. Very clear. Ok, I thought, I’m not going to mope. I hear you.

What does the grief feel like these days?

I still always feel like I should be checking with someone. Your mom and I, well, we weren’t dependent, but we were interdependent. We operated by consensus. Whenever I have decisions, I still turn around to ask her things. I feel I should be asking someone.

Last year when I was redoing the condo, I would wonder what she would think about the new rug under the table, about whether we should move the couch. I would still ask her. And then I’d laugh, because I always knew exactly what she would say. She’d say, “Well, it’s ok. It’s nice.”

Things were never important to your mom and so she didn’t have strong opinions about them. When we redid the Pine Street house years ago and had this professional decorator help us, Barbara would come over with sixteen different ideas for the bathroom.  Mom would say, “Ok, that one.”

And Barbara would say, “Well, you could…”

And mom would say, “No, that’s good.” She was done. Barbara couldn’t believe she didn’t want to think it through more.

When was the hardest time?

At the end of her life during the last weeks here in Maui. It has got to be. Every day it was the question of whether it was going to be the last time I was going to have any form of communication with her. And her pain and there being only so much we could do about it. That was the toughest, but the rest was not easy either. It was hard to lose her. It was hard when we learned the cancer came back.

I have a question for you. Did you think she decided to come to Maui, or do you think we did?

Both, or a combination. At the end she agreed that it was a good idea. Before that, she was unsure. Because sometimes she thought I just wanted a free trip.

(laughter)

Really, she was so good at reading people. She knew we were trying to get her to do things like go into the ridiculous hyperbaric oxygen chamber. And because of the Alzheimer’s she didn’t understand the reasons. So, I don’t think it was that she didn’t want to go to Maui, I think it was that she couldn’t figure out why we wanted her to go to Maui.

Because she always liked to go to Maui.

Yes, so it seemed weird. Also, she was in tremendous pain. It was before hospice.

I actually think I know the moment mom made the decision. It was the night after we found out the cancer was back and there were no good treatment options left. Sandy and Amy and I brought over pizza. She knew we were all sad.

I was very sad.

And mom turned to you and said, “We are going to go to Maui and it’s going to be just fine, Ron.” I don’t know if she said that exactly, but I felt like that was the moment.

Yes, that was my sense, she ultimately agreed with us. It was good we got here when we did.

There were so many things like that, that seemed to just barely work out, just in the nick of time. Like the memory book. And different people getting here to see her. You had some really sweet moments together, rainbow sightings and your dance marathon.

(Laughter)

You know your mom never liked dancing quite that much before. She usually was a one dance kind of person. We danced for hours that day.

Do you still feel close to her?

Oh, yeah. Yeah.

I do too.

I don’t see any reason why I wont always feel close with her. After you count the time we dated, we were together more than 60 years. I’ll always be close with her.

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Also Related

My dad mentioned a couple things that I have written about in previous Tending to Ending essays that I want to link to here.

In Bridges, I wrote more about our experience with CaringBridge, a nonprofit social media service designed to help people communicate with family and friends during medical journeys.

If you want to read about our memory book project, Love in the Room covers that project and other ways to bring people close at end-of-life even, when they are far away.

If you’re curious about what a hyperbaric oxygen chamber is, you can read more in Not Knowing, which is about the beginning days of my taking on a caregiving role.

Thank you for reading Tending to Endings. If you would like to make sure you don’t miss a post, please subscribe! I began Tending to Endings to help build community and conversation around end-of-life matters.

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