Loving Two Women in Dementialand

Then…one day about four months after Ann passed away…without meaning to…Art met someone.
It was the sister of an old friend. Her name was Juanita. He didn’t intend to start dating her. In fact, he never saw himself in a relationship after Ann’s death. But he liked Juanita.

A few years ago I met a couple who made me think a bit differently life after loss.

Art had been married to his wife, Ann, for almost forty years when she was diagnosed with Alzheimer’s. After her diagnosis, he learned everything he could about her disease. He read articles online. He ordered books from Amazon. He watched YouTube videos. He joined a couple of support groups.

When his wife moved to a nursing home, he was a constant presence there. Not only did he spend time with Ann, he dedicated himself to visiting with residents who didn’t have family and friends. When I asked him how many hours he spent each week at the nursing home, he shrugged. Maybe 30?

“I didn’t have anywhere else to be,” he told me.

At some point, he was approached by the local chapter of the Alzheimer’s Association, and he began volunteering at their fundraising events. He even overcame his lifelong fear of public speaking to tell Ann’s story.

Late one night, he got a call from the nursing home that Ann had passed away. Although she was approaching the end stage of Alzheimer’s, her death came earlier than Art expected. He will never forgive himself for not being with her.

Yet, life continued for Art. And it continued much like it did while Ann was alive. He still spent time at the nursing home to see his friends (maybe “only” 20 hours a week). He still volunteered with the Alzheimer’s Association. He even continued to attend support groups two or three evenings a week.

“I’m retired,” he said to me. “What am I supposed to do? Watch soap operas? I don’t even like golfing.”

Fair enough.

Then…one day about four months after Ann passed away…without meaning to…Art met someone.

It was the sister of an old friend. Her name was Juanita. He didn’t intend to start dating her. In fact, he never saw himself in a relationship after Ann’s death. But he liked Juanita.

He continued to go to the nursing home. He expanded his volunteer role with the Alzheimer’s Association. He even became a leader for one of his support groups. And he was dating Juanita.

Often, Juanita went to the nursing home with him. She had to, Art said, because he wanted to introduce her to his friends. Juanita even started volunteering with the Alzheimer’s Association. Eight months after Ann’s death, Juanita wore a shirt with Ann’s name on it and marched in her honor at the Memory Walk.

It was obvious to me that Art wasn’t “over” (as if that’s even a thing when you lose a spouse….) Ann’s death when he met Juanita. It seemed like has unwilling to give up pieces of his life related to Ann–the nursing home, the support groups, the Alzheimer’s Association. And Juanita jumped right in. They were married less than a year after Ann’s death. Instead of gifts, they suggested donations to the Alzheimer’s Association.

As I’m learning, life isn’t black and white. It’s not like your spouse dies, you grieve, and then you wake up one morning having completed your grief and ready to date.

In talking to Art, it was very apparent that he loved two women–one dead and one living. I’m sure this makes some people uncomfortable. I’m sure there are many women who would not want to marry a man still in love with his deceased wife.

Juanita has a different perspective.

She wants him to keep Ann’s pictures around the house. He took off the wedding ring from his first marriage, and Juanita put it in a shadow box along with a picture of Ann on her wedding day.

At Art’s request, Juanita made Ann’s favorite meal on her birthday. They even set a place for her at the table that night. (I’m going to be honest here–I might have cringed just a bit when they told me about this.)

Art also tells me that Juanita was about the same size as Ann. He took some of Ann’s clothes to Goodwill when Juanita moved in, but Juanita kept most of the fancier blouses and sweaters. (And–yeah–I did cringe here as well.)

“I bet you think it’s odd I wear her clothes,” said Juanita. I know that I was supposed to jump in and say I didn’t think it was odd….but I really wasn’t sure….so I didn’t say anything.

When someone dies, their spouse doesn’t stop loving them. There’s a difference between living in the past and continuing to love someone who’s gone. Juanita doesn’t see Art as living in the past–and she respects that he still loves Ann.

In a way, I feel sorry that Juanita–who has never been married before–has to share her husband with a woman who is deceased. She visits the nursing home and listens to everyone reminisce about Ann. She goes to Alzheimer’s Association events and listens to Art speak about how Alzheimer’s stole his wife. And once a week she watches Art walk out to the door to go to a support group, where he will focus on Ann’s journey with dementia.

Truth be told, there’s a part of me that is uncomfortable that so much of his focus is still on Ann.

But it’s not about me.

I watch Art and Juanita together, and they seem happy.  If Juanita is jealous or resentful that Art’s life still seems to centers on Ann and Alzheimer’s, she doesn’t show it.

“I’m lucky or maybe tricky–I’ve tricked two wonderful women into marrying me,” Art said, and Juanita laughs.

“And I’m lucky Ann trained him to be such a great husband,” Juanita tells me.

As they walk away holding hands, I notice they are both wearing their Memory Walk t-shirts with “Ann’s Army” and a giant photo of Ann on the back. I can’t help but think Juanita looks more than a little like Ann.

There really are three people in this marriage, I think to myself.

I can’t decide if the whole thing is totally weird or absolutely wonderful.

Maybe it’s both.

I allow my mind to wander, just for a second, and think about whether or not I could be in a relationship with a guy like Art. Could I set a place for my husband’s dead wife at dinner? Could I wear my husband’s dead wife’s cardigans? Or look at photos of her all over the house?

Then I shut down that internal conversation.

Because I’m not Juanita.

And it doesn’t matter if I could do it.

Juanita is doing it.

Last I heard, she and Art had started teaching a monthly cooking class at the nursing home where Ann lived. They continue to raise money for the Alzheimer’s Association in Ann’s name, and recently Juanita hired an artist to paint a large portrait of Ann to put over the mantle.

 

Love and Renovations in Dementialand (aka This One is For the Dementia Spouses)

A guy once told me he never knew how much his wife accomplished in a day until she was diagnosed with Alzheimer’s and was unable to do what she had done for the previous thirty years. He told me that picking up the slack was a big challenge for him. 

“Dementia doubled my chores,” one woman told me.

Stop. Take a second right now. Pat yourself on the back for the added responsibilities that you’ve mastered.

Romance isn’t really my genre, but I’m gonna tell you love stories today. In fact, I’m going to talk about marriage.

In the US, about 40% to 50% of marriages end in divorce, and the percentage increases in subsequent marriages. Furthermore, the divorce rate among the over 50 crowd have doubled in the past few decades. It’s tripled among those over 65. (Sources: Pew Research Center & National Council on Family Relations)

You’d guess, by looking at those numbers, that Americans—particularly older Americans—don’t have great marriages. In particular, data suggest that our Baby Boomers aren’t that good at marriage.

However, I have a front row seat to some marriages that remind me that love isn’t just what you see in romantic comedies. Love isn’t about having a perfect life or a perfect marriage—which is a good thing because (despite what you might assume from a Facebook or Insta scroll) none of us have either.

A few weeks ago, I was talking to a gentleman whose wife has dementia. In the middle of the conversation, he drops this crazy statement matter-of-factly: “Moving wasn’t such a big deal for her because I got the same countertops and all.”

He continued for a few seconds until I interrupted.

“Wait. Stop. What about the countertops?” I asked. “You did what?”

He explained to me that he worried his wife would be stressed by transitioning to a new environment, so he completely re-did the kitchen in their new home to resemble the kitchen in their old home. Countertops. Cabinets. Backsplash.

To me, this was much more impressive than any renovation by Chip and Joanna Gaines. I had a moment where I fantasized about starting a new HGTV show called Dementia Reno, where people with dementia would move and I’d redo their new homes to look like their old homes. (Then I remembered that I once tried to use spray paint to paint my oven hood. Yeah, I know. You can’t do that.)

This man didn’t seem to think this was a big deal. He told me about it as if every guy who has a wife with dementia does a kitchen reno so his wife has less anxiety and confusion about their new home.

I do understand that not everyone has the resources to do this. Finances matter when it comes to dementia. More money means more options. This man had the money, he had the option, and he made it happen.

He didn’t see himself as a hero. He was just trying to make life a little bit easier for his wife. It worked.

I meet people like this all the time. Sometimes we use the words caregiver, care partner, or carer—but many folks don’t identify with those terms. In fact, I’ve done seminars for caregivers and struggled to attract a crowd. People tell me they care for their spouses because…well…they love them, but they don’t label themselves as anything other than a husband or wife. And they’re just doing what husbands and wives do.

I know a man who struggled to find a way to engage his wife as her dementia progressed…until he made a work desk and placed it in their basement. Every morning she goes to “work” and he gives her a task. Maybe it’s putting stickers on envelopes. Or filing. Or signing letters. A former secretary, she has a sense of purpose again. He was very excited about the Black Friday sale at Office Depot. He presented her with a new office chair as a reward for her hard work. He’s not sure if she knows he is her husband, but she says he is the best boss she’s ever had.

“Tell me when it’s boss’s day,” she once said. “I’ll make you cookies.”

I know a woman who drives her husband around in the Iowa countryside for four hours every Sunday. He loves to visit his old farm, which is a couple hours from where they live now. The people who now live at the farm let him walk around the property. Sometimes he thinks he still farms there. His wife says it’s the only time he seems genuinely happy lately. She’ll do it every week until it no longer brings him pleasure.

There’s also a woman in our community who has been known to “stalk” her husband, who has dementia, when he goes on walks. He enjoys solitary walks, but she worries he’ll get confused and not be able to make it home. She follows about an eighth of a mile behind. If he should turn around, she ducks behind a tree or bush. She told me she occasionally worries some observer will call the police.

I asked this woman how long she and her husband had been married. She surprised me when she told me they were married only five years ago—after he had starting showing dementia symptoms. She said she worried he’d forget her earlier in his disease process since they’d been married a shorter time.

“I’ve been wondering,” she said to me, “Can a person still love you when they don’t know who are you?”

I’ve been asked this question before, and I always answer with a definitive yes.

I once heard a man with dementia tell his wife, “I don’t think I’ve met you before, but you are always so nice to me.”

Maybe there are times when the head doesn’t remember but the heart does.

So this is for all of my dementia spouses…

I want you to know that I appreciate what you are doing day in and day out.

I know you get tired. And I know you get frustrated. But you get out of bed every single day and roll with the crazy life that dementia creates. Sometimes you laugh and sometimes you cry—maybe you’ve done both at the same time. You work really hard to create moments of joy that your spouse may or may not remember, but you think it’s worth it all the same. And you’re right.

Some of you have spouses who are able to thank you. Some of you have spouses who cannot show their gratitude. If your spouse can’t thank you, I want to thank you on their behalf.

Maybe you’ve had to learn new skills. Perhaps your spouse always managed the finances, and now it’s in your lap. Maybe your spouse was the cook, and now you are learning how to throw together crockpot meals and use the George Foreman. Or perhaps you had to take over mowing the grass, managing car repairs, or changing the cat litter. It’s not only that there’s an emotional toll…there’s really just a lot to do. Your load is heavier.

A guy once told me he never knew how much his wife accomplished in a day until she was diagnosed with Alzheimer’s and was unable to do what she had done for the previous thirty years. He told me that picking up the slack was a big challenge for him.

“Dementia doubled my chores,” one woman told me.

Stop. Take a second right now. Pat yourself on the back for the added responsibilities that you’ve mastered.

And—if your spouse isn’t able to buy you a gift this holiday season, do me a favor and buy yourself a little something. If you don’t have the time to go shopping, no worries. I mean, it’s Cyber Monday. They are practically giving stuff away online. And you’re reading this blog, so I know you know how to use the internet. Do it now. (Well, after you’re done reading this.)

If your spouse is in a nursing home or memory care community, stop feeling guilty you aren’t there more. If you raised your voice at your spouse recently because they asked the same question for the millionth time, stop beating yourself up and move on. If you’ve made what you consider to be a poor decision in regard to your spouse’s care, let it go. And if you let your frustration get the best of you (which we all have), take a deep breath. It’s okay.

You didn’t have a perfect marriage before, and you don’t have one now, but you get yourself out of bed each and every morning and continue to do the best you can in circumstances that you would have not chosen.

And that’s enough.

Til Death Do Us Part in Dementialand

She had taken off her wedding ring long ago because it was too painful to look down at her hand, see the ring, and remember that she had a husband who didn’t know who she was. But when she said she loved him as much as ever, I believed her.

This is not the post you expect it to be. If you’re looking for a heartwarming tale, you might want to check out “Chicken Soup for the Soul: Living with Alzheimer’s and Other Forms of Dementia.” (Yes, it really does exist, and it’s not a bad book if you’re into that type of thing.) But I’m not sure you’re gonna get warm fuzzies from my post today. In fact, I have no idea how you’re going to feel after you read this post.

In my visits to a nursing home, I met a bubbly nursing home visitor in her 50’s who I will call Jean. Although I tell this story with her permission, I have changed her name. Jean’s husband, who I’ll call Gary, was also in his 50’s, but his appearance would have lead me to guess he was in his 80’s. Gary, who had younger-onset Alzheimer’s, had lived at the nursing home several years. He was in end-stage Alzheimer’s and seemed somewhat stalled there.

He spent most of his time in bed. He had to be turned every few hours to avoid pressure sores. When the staff got him up in a wheelchair, he slumped over to one side–usually unable to keep his eyes open. He fought a constant battle against pneumonia (common among people in end-stage Alzheimer’s due to compromised immunity) and was on a thickened liquid diet to avoid aspiration. He had not spoken for over a year. Jean told me he stopped recognizing her long before that.

Jean worked full-time and stopped by every evening. Sometimes she sat with him and watched Wheel of Fortune while holding his hand. Once in a while, I saw her doing crossword puzzles. She enjoyed talking to other residents and their families. She was bright, caring, and always laughing.

If you’ve spent any time in nursing homes, you know that they can be gossip mills. I found out through the nursing home gossip mill that Jean had boyfriend. Not that she was hiding it. It had just never come up when I made small talk with her.

As I got to know her a little better, she’d mention her weekend plans or what she did the previous evening, casually dropping the name of her boyfriend. I didn’t ask too many questions. I’m sure she had enough judgement in her life, and I didn’t want her to misinterpret my curiosity as disdain. Frankly, it was none of my business.

But I learned more as time went on. Gary was diagnosed with Alzheimer’s in his mid-40’s. His mom had younger-onset Alzheimer’s as well, so they weren’t shocked, and they had an idea of the path ahead. They went on a few trips right after the diagnosis. Jean knew these trips would be bittersweet, but they ended up being more bitter than sweet.

Unlike many people who tell their loved ones to never put them in a nursing home, Gary told Jean that he didn’t want her to care for him at home as the disease progressed. He made the choice to put his mother in a nursing home although she repeatedly requested that he never do so. He lived with that guilt, and he didn’t want to Jean to have to do so.

When the time came, she placed him in a nursing home. She visited every evening. A few years later she met someone. She continued to visit Gary every evening. She told me she loved Gary as much as ever, but she no longer viewed him as her husband.

She had taken off her wedding ring long ago because it was too painful to look down at her hand, see the ring, and remember that she had a husband who didn’t know who she was. But when she said she loved him as much as ever, I believed her.

I can’t say Jean’s situation is the norm when a spouse has dementia, but I also can’t say it is rare. In fact, on the very same nursing home hallway where Gary lived, there were two other wives in similar situations. I am not speaking of wives who had abandoned their husbands at a nursing home. I’m talking about wives who visited at least once a day, were active participants in their husbands’ care, and had boyfriends.

It’s common enough that the Wall Street Journal wrote a story about it several years ago:

http://www.wsj.com/articles/SB10001424052748704317704574503631569278424

Even religious authorities are split on whether this is okay or not. I’ve kicked it around quite a bit, and all I can say for sure is this:

If I had dementia, needed 24/7 care, and no longer recognized my spouse, would I be okay with my husband dating someone else? The answer (for me) is absolutely yes. And I would not want him to feel guilty about it for one second. Of course, I haven’t been diagnosed with dementia. Could my thoughts on this change if I were diagnosed tomorrow and saw dementia a real rather than hypothetical part of my future? Of course.

I know that Jean was with Gary when he passed away. Til death do us part. Or something like that.