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Love Me Now: Being Present With Dementia

older couple kissing“The mission of my life became to honor him and allow our love to grow deeper,” Sarah Rowan recalls of her husband, post his dementia diagnosis. “Things others would consider embarrassing or silly didn’t really matter to me if he was enjoying his life and not feeling less than.”

When she was 51, Sarah’s sweetheart Joe, 61 himself, received a diagnosis of dementia, likely Alzheimer’s. They ‘walked with forgetfulness’ for ten sweet and meaningful years. Fifteen years later, Sarah’s twin sister, who passed away a few months ago, was also diagnosed with dementia. Sarah, now 80, wonders if she will “have the opportunity to go on a dementia journey” of her own.

5 Strategies for Loving Someone with Dementia

Over the past three decades, Sarah has honed and shared her joyous way of loving someone with dementia. Here are five steps to get you started down the path she has prepared.

1. Honor your loved one.

“I always tried to make sure my words were words of honor for everyone, especially him,” Sarah explains of how she loved her husband Joe through his journey with dementia. “It is just what you do for someone you love.”

Throughout Sarah’s anecdotes, in which there is a treasure trove of wisdom, a theme emerged over and over again: honor. She stressed the importance of honoring the personhood of everyone in our lives, especially those living with dementia. “My husband and I had a very rich and full life, and neither one of us thought that it would change the way that it did,” Sarah explained, her experience mirroring so many others, “When the diagnosis came, the changes we were experiencing had a name…not a name that I loved but a name that I grew to understand. It actually made me love him more, not less. I wondered how I could meet his needs in a way that he would feel loved.” This wonder of how to meet needs lovingly is at the core of Sarah’s ethos of honor.

Coming from this place of love colored her entire journey with Joe and her twin. Before asking how to get a task done or how to get them to do what she wanted, she asked how could she honor them and meet their needs in a way they felt loved. Ask yourself as Sarah does: “What if everything we did to one another was honoring?” How would this change the way you act and how you go about your day?

wrinkled hand with wedding rings on top of each other

2. Go with it.

Sarah says that Joe “never realized he had something called dementia.” For some people, a diagnosis is comforting because it gives a name to the changes they are experiencing. For others, reminding them constantly of their diagnosis, which in our society has so many negative connotations, can bring about discomfort and suffering. “It was my honor to make sure he lived a life of not knowing it every day,” Sarah shares.

Mirroring the tenants of improv, Sarah went with and honored Joe’s reality. Sometimes she did this by not dwelling on his diagnosis. Other times, she went along with his stated desires of the day, even if they contradicted previous desires. She shared a story of taking him to a football game, a past favorite of his. Halfway through the game, he asked to leave. On the way home, he wondered if next time they could see baseball instead. Sarah said sure and was joyful they had the experience they did and was flexible to Joe’s changing desires.

3. Start now.

“We need to prepare our heart and soul to love more deeply with everything that comes to us.” Sarah sees everything life throws at us as an opportunity to love and live more profoundly. “We must try in some way to empower ourselves with love of life, love of our loved ones, and love of humanity. Even if it is bad news, not to live in a fearful way.”

Sarah has practiced all of her 80 years living this way. Taking what life has to offer, even the hard stuff, and looking for the opportunity to deepen her love. Talking with her, one gets the sense of being in the presence of one who is wise with time, deep of heart and joyful in life.

She shares that her life has taught her that loving and living mindfully makes the tough stuff easier. “If we had the secret to helping someone feel that they are a valued and loved human being deep in their soul from childbirth through aging, think how much kinder and gentler our world would be.”

Sarah suggests starting this practice with yourself every morning. Remind yourself daily that you are loved and valued. Then enter the world feeling that way about yourself and looking for ways to make others feel the same. We can only hope to develop this skill as masterfully as Sarah has.

4. Never stop making memories.

Often when we hear stories of people living with dementia, it starts with ‘who they were’ and ends with ‘then they got dementia.’ Sarah teaches that the story doesn’t stop at diagnosis. “It was surprising to me to see his freedom. Perhaps it was because he never actually said ‘what’s wrong with me?’” Sarah mused, “what mattered was that he was there. I think sharing experiences as long as we possibly can is so important. Share things they once loved and invite them to new experiences that are not fearful for them.”

older couple holding hands on the beach

5. Guide others with your actions (This advice is two-fold).

First, Sarah learned that if she stayed calm and kind, Joe and others living with dementia would match this temperament. She shares a story of when they got a flat tire on the freeway and had to wait for roadside assistance. Sarah stayed calm, having observed that he picked up on how she felt. When she realized they would be waiting a while, she told Joe they were going to have a water picnic. Picnics were one of his favorite things. He asked what a water picnic was. She explained that they would climb to the rise of a nearby hill. He would play her songs on his little harmonica from WWII that he carried everywhere and they would share the bottle of water she had in the car.

Forty-five minutes later, the tow truck arrived. They had to ride in the truck with a tow driver and Joe played his harmonica the whole way. When they finally got home, she asked if he was as tired as she was. “Oh no,” he replied, “I wanna go on another water picnic.” What could have been a trying and disastrous day turned into a sweet memory.

Read: Practical Methods for Calming Agitation in Older Adults with Dementia

The second way we can guide others with our actions is for those not living with dementia. People will follow how we react. Sarah recalls being out in public when Joe pulled out his harmonica and began playing. People looked at Joe and then at Sarah for a cue as to how to react. They saw Sarah smiling and listening and followed suit. Smiles abounded that day rather than scowls.

The Sweet Rewards of Loving Through Dementia

By following these five tenants, Sarah was rewarded with many sweet and tender memories with Joe during the last decade of their marriage. Sarah knew this was true for Joe, too, when one morning at breakfast Joe said:

“Oh, my sweetheart! You know there is something I have wanted to ask you for the longest time.”

“Oh well, it seems like a good time for me if it is a good time for you,” Sarah said.

“Well, this is important,” Joe said. He was acting uncharacteristically shy.

“Oh well, I am ready for it.”

“Will you marry me?” Joe asked. “I have wanted to ask you that for the longest time.”

“You better be sure because I am going to say yes,” Sarah responded, smiling.

“Oh, that makes me so glad,” Joe said.

A diagnosis of dementia is not the end of love or life. I have made many deep relationships that only started post-diagnosis. Sarah is living proof, twice over, that relationships can deepen and evolve past a diagnosis if we, those not living with dementia, can use honor to inform our behavior, go with the reality presented, start practicing living from this generous space now, never stop making memories and guide others with our actions.

Looking for more advice on how to communicate with a loved one who has dementia? Our editor recommends you read one of the following, based on which stage he or she is in:

Read: Communication in Early Stage Dementia

Read: Communication in Mid Stage Dementia

Read: Communication in Late Stage Dementia

Resources

Sarah Rowan – Walking with Forgetfulness

About The Author

Kyrié Carpenter is a crone-in-training. She is a radically pro-aging and dementia positive coach and thinker. Kyrié’s passion for story led her to a career in film, studies in Depth Psychology, and ultimately her work with aging. She is a book author and blog contributor for multiple platforms.

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