Weddings in Dementialand

Your cousin is getting married. Grandma loves weddings. In fact, she used to do all her friends’ hair when they would get married. She’s always adored family gatherings—the bigger, the better.

You plan to go to the nursing home, help her get dressed, assist her with makeup and hair, drive her three hours to the church, hang out with her at the reception, and stay with her at a hotel the evening after the event. You’ll drive home the next day after a gift-opening brunch.

That’s been the plan for months.

But Grandma’s Alzheimer’s seems to have progressed. And this just seems like…a lot.

You think about the time a few weeks ago that you took her out for pizza at her favorite Italian place. She was anxious the entire time. She asked where he husband was—although he’s been dead for a decade. She got up to use the restroom. Ten minutes later you realized she had gotten confused and left the building. When the food finally came, you decided to just have them box it up so you could take it back to the nursing home. Epic fail.

You remember Christmas. You picked her up at the nursing home at 8 am. She was looking perky in her Christmas sweater, but the information about the plans for the day didn’t seem to stick. She kept asking, “Don’t you need to get back to the office, honey? You’re gonna get yourself fired.”

The weather was by no means a blizzard—but a light dusting of snow threw Grandma for a loop. “I sure hope we don’t have to sleep in this car,” she kept saying worriedly on the way to the family Christmas party. “Do we have sleeping bags in the bag? Do you have Triple A, honey?”

Once there, the commotion of Christmas movies, kids playing, and presents being ripped open was just…too much. The look on her face was one of panic, but when you suggested taking her back to the nursing home, your family said she was “fine.” You felt they were more concerned about the guilt they would feel if Grandma wasn’t there for Christmas dinner than the well-being of Grandma, but you kept your mouth shut and Grandma stuck it out for dinner. She didn’t eat anything because she said her stomach was “too excited.” As someone who doesn’t eat when they feel anxious, you sympathized with Grandma as she stared warily at her turkey.

The more you think about it, the more you realize that taking Grandma to this wedding might be…too much. You mention this to a few other family members. They are appalled. They cannot believe that you would be so selfish. How could you consider leaving Grandma at the nursing home during such a special family event? Don’t you know how much she enjoys celebrating the milestones of her grandchildren? How could you do this to her? And your sister actually made a comment about how you were putting your own enjoyment of the wedding over the opportunity to allow Grandma to be a part of a family event. (Of course, your sister had not volunteered to help Grandma attend the wedding…she was a bridesmaid so that wasn’t a possibility.)

You mention that you brought her to the bridal shower—and she seemed to enjoy that for a while. Then she got a bit overwhelmed and said to her sister-in-law, “I apologize for crashing this party. I’m just sick that I don’t seem to know anyone here.” When her sister-in-law explained she knew everyone at the party, she said, “I think you must have be mixed up with another woman. I need to find a bus to take me home.” As the shower wraps up, you find her crying in the bathroom because she doesn’t know how to call a taxi.

Nonetheless, your family says that’s she Grandma, after all, and Grandma needs to be at this wedding. You stop arguing and agree that she will be at the wedding.

When you pick her up at the nursing home, the staff already has her in her best dress. You take a few minutes to add some makeup and curl her hair. You smile because she looks beautiful. She looks in the mirror at herself and said, “That woman is looking sharp.” You aren’t sure if she is referring to herself in the third person or doesn’t recognize herself. You’re not sure you want to know.

When she gets a bit disoriented, you keep reminding her where you are headed. You finally decide to stop telling her you’re going to a wedding because you realize this sends her into a state of panic—since she doesn’t have a gift to give the bride and groom. (You should’ve known this would bother her and kick yourself for not wrapping up something for her to give the couple.) Arriving at the wedding just before it starts, you sit with her in the front of the church. She keeps saying she has a great seat for not even having a ticket. It becomes apparent that most of the people in the church, although they are close friends and family, are not familiar to Grandma on this particular day.

When your cousin walks down the aisle in her exquisite wedding dress, Grandma turns to you and says in a loud voice, “She’s sooo beautiful. I wonder who she is.” A distant relative sitting a few rows behind you chuckles uncomfortably.

The wedding goes okay…Grandma seems to think she is at a theatrical performance rather than a wedding, but she enjoys commenting on the dresses in what could be described as a loud whisper. When the officiant asks if anyone knows of a reason why the couple should not be united in marriage, Grandma shouts, “No! They should get married!” Some people laugh; others looks horrified.

Later your mother will make a comment about how you could have done a better job “babysitting” Grandma during the ceremony. You find the term “babysitting” insulting to both you and Grandma—and to people with dementia, in general. You just nod and say you’ll do better next time. It’s an easy promise to make because you don’t anticipate that there will be a next time.

When everyone is mingling at the church after the ceremony, Grandma is confused but pleasant. She keeps telling relatives, “I don’t think we’ve met, but you just seem so nice.” You get her back in the car and are ready to drive to the hotel where the reception will be held.

Grandma says, “That was a fun show, but I’ll be glad to get home.” You tell her that you aren’t headed home yet. Rather, you are going to a reception to celebrate the marriage. She gets quiet for a few moments, and then she begins to cry. You ask her why she’s crying, but she’s not able to tell you.

“Grandma,” you ask, “Do you just want to be done for the day?” She nods. You start the three hour drive back to the nursing home.

You call a few family members. They are upset with you. They think she would have been fine when she arrived at the reception. They say that Grandma would never want to miss any part of the wedding of any of her grandkids, no matter the circumstances. They point out that there’s still time to turn the car around and take her to the reception. You don’t turn the car around.

In the passenger seat, Grandma sits quietly. Occasional tears roll down her cheeks. You want to know why, but asking her to explain her sadness only seems to compound her frustration. You turn on a country radio station because you know it’s her favorite. You count the miles until you are back at the nursing home. You keep thinking about how you’re not going to get your money back on that hotel room. (And despite a few phone calls, you don’t. Apparently hotel staff isn’t sympathetic to changes in plans due to dementia.)

When you drop Grandma off at the nursing home, she says, “This was quite a day. I hope the tickets to that show weren’t too expensive. Why don’t you take some money off my dresser, honey?” You pretend to take a few coins. You feel terrible about how you can’t wait to leave the nursing home and drive home in silence. No country music (which you hate). No random sobs from Grandma (which make you feel like crap). You feel an obligation to go to the gift-opening brunch in the morning, but you won’t. You’re tired, and you’re pretty annoyed with your family.

As you leave the nursing home, you see your family texted photos of the reception. Most of them have a caption that reads “Miss you and Grandma!” or something similar. Your least favorite is a photo of the entire family (excluding you and Grandma) with a comment from your sister that says “Wish you had decided to bring Grandma so EVERYONE could be here!” You swear you are going to give your sister the silent treatment over this, but you don’t. You hate yourself for not being more assertive.

At the end of the day, you feel guilt. Guilt for not coming through for your family. They wanted Grandma to be a part of all the wedding activities, but you couldn’t make it happen. A bigger sense of guilt comes from knowing that you put Grandma in a position that was anxiety-inducing for her.

Seeing her tears roll down her cheeks on the way home made you wonder if you should’ve listened to your gut and realized taking on the wedding was just…too much. You don’t know if you made the right call. She had some moments of joy, even if she didn’t recognize the bride as her own granddaughter. Maybe taking her to the wedding was the right thing to do. Then you think of the tears rolling down her cheeks on the ride home…It’s going to take a while to get that image out of your head.

You don’t know if you did the right thing. You think your family is still mad at you. And, really, you are mad at you. You are mad at you for not listening to you. You knew this plan was unrealistic. You didn’t have the nerve to tell your family that you spend the most time with Grandma and know her the best. You didn’t have the nerve to tell them that you should get to make the call on whether she was up for the wedding.

But you go to visit Grandma tomorrow, and she’s not mad at you. She’s back to her “normal.” You have the same conversation about the weather and your cat that you have most days.

When you mention going to the wedding yesterday, she seems to have no recollection of it. You ask about the show where they women wore the pretty dresses. She says, with a smile, that she hasn’t been to a show in decades.

When you leave, she tells you she loves you. You aren’t quite sure she knows who you are, but you never doubt that she knows exactly what she means when she says she loves you.

(Thank you to the woman who shared this story with me and allowed me to take my own liberties in creating this piece. She didn’t want her name used because she worries her family members would be upset if they came across the story.)

 

 

6 thoughts on “Weddings in Dementialand

  1. I read this story and understood from my heart exactly how the woman felt for I have been there, done that, but not a wedding – a funeral. It is easy for outsiders (not the person actually taking/caring for Grandma) to cast opinions and it upsets me when they throw guilt on the pile. Please let the woman in the story know that she is not alone. There are many of us who struggle with similar scenarios. What’s the right answer? Taking Grandma or leaving her be? Even though the guilt consumes us, sometimes I think it’s better to leave her at her home rather than try to bring her out, but then there’s always that ‘what if she enjoys it and remembers it?’ part that I haven’t yet been able to find peace with yet. Great post Elaine. ♥ Hugs to that woman and to you.

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  2. Such a heartfelt story… I so… get this… the unrealistic goals especially that I set for myself in order to appease, and please others.. bottom line.. let your gut and your heart rule.. what’s best for the person affected by dementia.. not the opinions of others… I’m learning this… slower than I’d like however🙃

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  3. Thanks for this truly helpful post. I can see it from both sides – as the caregiver who lives with the person with dementia, and as the more distant relative who is motivated to protect their image of their mother, grandmother, or aunt. We so much want to see our relative as the clear-minded person we remember, and it’s so tempting to overlook, minimize or deny evidence of growing confusion, fatigue, forgetfulness.
    I guess everyone comes to these painful realizations on their own timetable. Please thank the person who offered you this story. I think he or she is courageous and on the right path.

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  4. Thanks to both of you for sharing this information! It’s all about the listening, even when Grandma cannot relay her wishes.

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