My First Holiday Season Alone

EPISODE 14:  Surviving the Holiday “Firsts” and My 3 Guidewords for 2023

My husband died last summer. I’ve experienced a lot of “firsts” without him: his birthday, my birthday, Halloween, Thanksgiving, Christmas, New Years, and most recently, Valentine’s Day. Some of those days passed without incident. Others…not so much. 

It’s March. I survived those holiday “firsts”  And I’ve decided on my 3 guidewords for 2023, an important ritual I do every year. Those words and my first holiday season. That’s what this episode, #14, is all about. 

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You’re listening to My Spouse Has Dementia, a podcast that uses personal stories, occasional interviews, and simple rituals to support dementia caregiving spouses. My goal is to help us SURVIVE. … because about 40% of us die first. I’m Zita Christian, writer, Life-Cycle Celebrant, widow. My husband and I were married for 41 years and 8 days. He had Alzheimer’s. He died last summer.  

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A few weeks ago, I received an email from a listener, Angie. Her husband was diagnosed with dementia several years ago. Speaking of their journey, she wrote, “I know where it’s heading and I’m experienced with prior deaths, and I’m proactive, but it still scares me to death, giving up a person I have now spent 50 years with.” No matter how many years you’ve shared with your loved one, I’m sure you can relate. 

In my response to Angie, I wrote, “The dementia caregiving journey is more painful than most people realize. Even other family members and close friends don't always fully understand the depth of the loss we go through. The pain is especially cruel when we are losing the person we've shared more than half of our life with! We grieve our loved one's death while he is still alive. The feeling is so strange. I think that's what makes our sorrow hard for us to comprehend -- and impossible to explain to someone else.” 

When Dick was still alive, I often felt I was moving in a fog. I couldn't plan ahead more than a day, and even that often felt too much. A few days before receiving Angie’s email, I was talking with a friend, Kevin. He and his wife had just come back from a vacation in Chili. 

Kevin told me about climbing a mountain, hiking through a desert, only to come upon a narrow strip of forest on the edge of the mountain. The guide explained that the lush, vibrant green forest thrived on the edge of the desert because of the moisture in the fog that rolled in every day. Without the fog, the trees would die. 

I've been thinking about that a lot. Alzheimer's forced Dick and me to live in a fog of memories and emotions. Maybe the fog helped him to pass into whatever awaits beyond death. Maybe the fog helped me shut out the rest of the world so I could focus on him. I haven't figured it all out yet. I just know that on some level I believe Dick was trying to guide me. He still is. 

My Three Words for 2023

Words guide me, too. They always have. 

Every December, I start thinking about the three words I want to guide me in the coming year. The words aren’t goals I want to achieve. The words are guides… guides to the steps I know I need to take if I want to grow. 

Deciding on the words is a process. Sometimes I carry over a word from the previous year. I kept the word “Patience” for several years. It usually takes me all of December, sometimes all of January to pick the words. It’s early-March now. At long last, I’ve finally decided on my 3 words for 2023:  Emerge. Share. Contentment. Let me explain why I chose each one. 

Word #1:  Emerge 

“Emerge” is my key to 2023. A little background.

Dick and I entered a self-imposed lockdown of sorts in 2019, a year before the pandemic. Back then, just getting out of the house was an ordeal. 

I was keenly aware that his vision was distorted, that he might hallucinate while I was driving and grab the steering wheel, something he had done a few times, that he might not realize he needed to use the bathroom until it was too late.  

I’m not a risk taker. In hindsight, I wish I had made more of an effort.  Dick liked to ride through the cemetery. The grounds are peaceful. And I could drive 5 mph and no one honked a horn. He liked to look at the trees and the clouds. I wish we had gone on more rides, or just sat in the car by a lake. He was a hiker. He liked being outside. 

Sometimes, a particular word will be so potent it takes more than one year for me to absorb its lessons. That was the case for the word “Engage.” I chose Engage as one of my 3 guidewords in 2020, 2021, and 2022. The pandemic played a huge role in my choice. I learned Zoom. 

As it is now, I’ve grown accustomed to being a hermit. It’s comfortable. It’s safe. Long term, I know it's not healthy for me to stay in this cave, no matter how comfortable I’ve made it. So I’m forcing myself to get in the car and venture out. 

I’ve always loved to drive. Dick used to call me his “Gypsy wife” because I liked to find new routes to our destinations. I liked to take the roads less traveled. Decades ago, before GPS devices were common, I drove from South Dakota to CT with nothing but a post-it note of Interstate numbers on the dashboard. I want and need to get back into the in-person world.  

Hence, my first guideword for 2023: Emerge. 

Word #2:  Share

One of my guidewords relates to a specific goal. This year, I want to add interview episodes to the podcast. Just as I have shared my stories with you, I’m certain that other caregivers have stories we all might find helpful, too. 

To share those stories I need to learn some new technology, software, and editing skills more advanced than what I do now. I will learn those new skills. 

Plus, I want to put together a collection of simple, self-care rituals for family dementia caregivers. We need them. As I’m discovering, our need doesn’t end when the role of caregiver ends. I want to share those rituals with you. So, my second guideword is Share. 

Word #3:  Contentment

My third, and most challenging, guideword for 2023 is “Contentment.”  My reasons for choosing Contentment go back to 2017 when one of the words I chose was “Vigilance” and 2018 when one of my words was “Accept.” (I have a feeling you can relate to this experience.)    

The diagnosis of Alzheimer’s came in May of 2016. For the rest of that year I researched the disease. What I learned wasn’t helpful, at least not at the time. When the diagnosis came, I had only a surface understanding of dementia, no mental Velcro to make sense of what I read and what I observed. So when 2017 came, I chose the word “Vigilance.” 

Then came 2018. It’s one thing to accept the fact that Alzheimer’s is fatal and there is no cure. In 2018, to “accept” that reality had the ring of resignation. Maybe that’s why one of the other words I chose that year was “Energize.” Together, those two words – Accept and Energize – felt like poison ivy and jewelweed, two plants that often grow near each other, one a poison, the other its natural antidote. 

Now it’s 2023 and my focus is on Contentment. For me, it means being okay with the decisions I made over all those years caring for my husband. Looking back with the perfect vision only hindsight can give, I feel good about most of the decisions I made. Most, not all. 

If I had it to do over again, I would have taken the steps to bring in hospice sooner. Amanda, the social worker at the neurologist’s office, said it would be prudent to have one of the neurologists evaluate Dick for hospice care, if only to establish a baseline for when hospice would be needed.  But I kept pushing back, “I will, just not now. He’s not ready for that yet.” I was so wrong. 

Every guideword I choose is powerful. Contentment is such a gentle word. Yet, this year, contentment is a challenge. Maybe that’s because this is the year of all those holiday “firsts.” 

Holiday Firsts 

When I officiate a wedding, I always encourage my couples to give real thought to how they will celebrate the holiday season.  I encourage them to add their own traditions for Halloween, Thanksgiving, Christmas, Hanukkah, New Years, and Valentine’s Day. I remind them that the next time they shop for a card to give their spouse, they’ll shop in the section “For My Husband” or “For My Wife.”  

Christmas

I remember the first Christmas after Dick and I got married. I bought a Hallmark keepsake ornament. I still have it. It’s red, marked with the year, 1981, and the words “First Christmas.” It shows a young couple dressed in clothes from the 1800s. They’re ice-skating, holding on to each other, gliding in tandem. I bought annual “Love” ornaments for the next few years. Then I stopped. I don’t know why. 

Thinking back to this past December, I remember that I wasn’t stressed out over anything. If the weather was good, I'd drive to Laurie’s house and spend a few days with her, my son-in-love, and my grandson. If the weather was lousy, I’d stay home. I knew I had something edible in the freezer. What it was didn’t matter. I didn’t much care about eating.  I didn’t put up decorations, not even a wreath on the door, and I didn’t feel bad about it. I slept a lot. It wasn’t unusual to take a 2-hour nap almost every afternoon. I was as Pink Floyd sang, comfortably numb.  Except when I burst into tears in the middle of an in-person meeting, again during an online class, and again while on the phone with a friend. 

At the same time, I felt that growing internal push to “Emerge.”

I did spend Christmas with Laurie and her family. In fact, I spent several days with them. I looked around and remembered the year we toasted the memory of Tim’s mom, and again years later when we toasted the memory of Tim’s dad. At Christmas dinner this year, we raised a glass to the memory of Laurie’s dad, to Logan’s Pepe. They had bought a special ornament for their tree. It was a little brown hiking boot. I wasn’t the only one having a hard time that Christmas. 

New Year’s Day

Forty-some years ago, Dick and I would go out for dinner on New Year’s Eve. That tradition didn’t last long. We’d rather get a good night’s sleep and greet the dawn of the new year with a clear head. So we’d fix something nice for dinner, watch a movie, or just go to bed early. 

We had a ritual for New Year’s Day. We’d go out for breakfast, always to a small, locally owned restaurant. We’d spend a little time reflecting  on the ups and downs of the year just passed. Our main focus was a financial plan for the new year. One year we decided to put in hardwood floors. Another year, we knew we had to replace our old deck, so that took priority. Dick loved to travel, so we’d make a wish-list of places we wanted to go on vacation. We didn’t get to all of them. We didn’t go on vacation every year. Still, over time, we did get to his top pick, England, and to mine, Alaska. 

On New Year’s Day this year, I renewed my efforts to organize the explosion of stuff in the basement. In 2021, everyone in our condo building had to relocate for five months while the foundation of our building was replaced – not repaired – replaced. The Herculean effort meant our building would be jacked 10 feet or more into the air, the entire basement and garage bulldozed, new cement poured, and, eventually, the building lowered back to the ground. While the building was in the air, almost 40 years of “stuff” in the basement took residence in the living room, dining room, every hallway and bedroom. When the building was restored, I had a lot of help getting the big things moved down the stairs and into the new basement. The smaller boxes and bags still sat in hallways and assorted corners. I’d gotten so used to them, I stopped seeing them. On New Year’s Day, I picked up one box, then two, then ten…and on it went. 

That day, I also decided to join a bereavement support group. One of the best decisions I ever made. I’ll tell you about that in another episode. My guideword SHARE is key to that story. 

Valentine’s Day

As a wedding officiant, I’ve always been mindful that engagement season traditionally runs from Thanksgiving to Valentine’s Day. The holidays during those months focus on family, friends, fresh starts, on old traditions and new dreams. 

People who don’t feel their own words will adequately express what’s in their hearts turn to Hallmark. 

Dick always gave me a card for Valentine’s Day. Always a romantic card. Sometimes, he gave me a homemade card, with a homemade poem. The poems showcased his humor. I have all the cards he gave me. When he died and I went through his chest-of-drawers, I found he had saved all the cards I had given him, too. 

Over the 41 years we were married, I often reminded him how lucky we were to have found each other. Valentine’s Day only amplified the loss. My instinct was to stay at home, order a pizza, and watch a movie. But I had made a commitment to the word EMERGE. 

So I reached out to my neighbor Helen. Her husband had died years ago. She said she had a feeling this first Valentine’s Day might be difficult for me. She was right. So, we decided to go out to dinner. We went to a family-owned Italian restaurant in the neighborhood. I asked Helen to bring a framed photo of her husband, Don. I brought one of Dick. We placed our photos on the table and, over dinner, we talked about our husbands. 

Somewhere in the conversation, I pulled out my phone and shared with Helen a text exchange I’d had with my grandson earlier that day. Logan had sent me a simple message: “Happy Valentine’s Day, Nana. Love you.” 

I had texted back to let him know about my dinner plans with Helen. I said that Helen’s husband had died six years ago. I confessed to having second thoughts about going out to dinner but that I was committed to venturing out.

Logan wrote back saying it was a really thoughtful way to have company for the evening and he hoped I’d have a nice time. 

After I read the text exchange to Helen, she softly said, “Don died 18 years ago.”  

“Eighteen?” No, that couldn’t be. “Where did I get six?,” I asked her. 

“I don’t know,” she said. 

Just then, her eyes filled with tears and I felt the sting of reality.

“Yes,” she answered without my having to ask the question, “I’m still grieving.” 

After dinner, Helen dropped me off at my home. I wasn’t inside more than ten minutes when the phone rang. It was another neighbor, Gail. She lives in the next building. She had just seen Helen drop me off so she knew I was home. She told me to open the front door, that I would find a surprise and that I had to eat it that night. 

I did as instructed. Hanging on the doorknob was a small gift bag. Inside were two hand-dipped strawberries and a Valentine’s Day card. Gail is the general manager for Munson’s Chocolates. She said the strawberries had been dipped just that afternoon. She also said she thought I might have a hard time with this particular holiday. 

I ate those strawberries, each one red all the way through, and I savored the thoughtfulness of my friends. If you’ve listened to other episodes of this podcast, you know what exceptional neighbors I have. 

Winding the Clock

A few days later, I was sitting on the couch, sorting through newspapers I had let pile up. Suddenly, I realized it was Sunday. I looked at the grandfather clock. 

The weights were limbo-low. Dick always wound the clock. I took the key from the hutch, opened the glass door, grabbed the crank, and repeated the weekly ritual. I was in tears.  

The implications of my husband’s death are everywhere. Some mornings I make coffee and automatically reach for two mugs. I pull into the garage, turn off the car, and make sure to unlock the passenger door for him. I open the freezer and see a box of his favorite sausage. 

I suspect these reminders will arrive endlessly, as though on light waves, some arriving on a sunlight beam in the breakfast nook. Others, well, I don’t know how long it will take for those light waves to reach me. Eighteen years? More?  I hope so. Tears are a small price to pay for enduring memories. 

Right now, early March, the word contentment suggests the advice made popular a few decades ago: Bloom where you’re planted. That makes contentment an easy word to embrace because, well, Alzheimer’s Disease was guaranteed to win. My husband didn’t have a chance. 

At the same time, as I said before, contentment is a challenge. There’s so much I want to do with whatever life I have left.

My three guide words – Emerge, Share, Contentment – are this year’s  stepping stones into my new identity: Widow. 

I think back to my neighbor Helen. I always learn something from her.  That Valentine’s Day dinner was no exception. There is no end-point to grief. We learn to carry it. We balance it between sad songs and sweet memories. We treasure the grief. It’s proof that we had our own moment of Camelot. 

The Year of “Lasts” 

Having a year of holiday “firsts” implies that there was also a year of “lasts.”  Just in case this turns out to be a year of “lasts” for you and your loved one, make the kind of memories you’ll treasure. 

Your 3 Words

As for guide words, if you’ve never chosen 3 guide words for a year, it’s not too late. No pressure. These words aren’t goals to be achieved. These words are guides to your growth, no matter how much time it takes. 

I’d love to hear what words you’ve chosen.  You can email me: Zita@MySpouseHasDementia.com 

Or – this is something new… If you go to the website – MySpouseHasDementia.com – you’ll see a vertical, purple “bar” on the right side at the top of the website. On that purple bar are the words, “Leave a voicemail. It’s easy.”  

It really is easy. All you have to do is click the purple bar. A mic opens. It’s like leaving a message on the telephone. I just added the voicemail option to the website. No one has used it yet. You could be the first :) 

In the meantime, one of the most important things we caregivers can do for each other is share our stories. 

Thanks for listening to mine.