Dementia, Love, and Suitcases

The other day my husband and I had a conversation about women who pack their husbands’ suitcases. To each their own, but my husband agreed that he’d never let me (or anyone else, for that matter) pack his suitcase. He thinks I’d forget something. And I probably would.

This conversation reminded me of a story that a man, Don, told me a few years ago. His wife, Heidi, had been a stay-at-home mom, while he worked in sales and travelled for his job quite a bit. Heidi stayed home, took care of the kids, and enjoyed her role supporting her family.

Heidi has since passed away from early-onset Alzheimer’s. When she became unable to stay at home by herself, Don was able to take early retirement. He decided it was his turn to take care of her.

As her disease progressed, she became confused about why Don was around so much. She was used to her space while he was traveling, and she would often panic because she thought Don had mixed up his schedule and should be on the road.

She’d say things like, “What about your trip to Tulsa? Isn’t that tomorrow? Shouldn’t we get you ready to go?”

Don would gently remind her that he had retired and was taking care of her at home now. She’d look disappointed and walk away. Don tried not to take that personally.

One day, Heidi walked into the living room with a suitcase packed. She pushed it toward Don and smiled.

“Have a great trip. Love you,” she said. Don, again, would explain he didn’t travel anymore, so she didn’t need to pack his suitcase.

This happened several times over the next few weeks. Heidi seemed excited and proud as she presented the suitcase to Don. She seemed disappointed when told there was no trip.

Throughout Don’s career, it was Heidi’s job to pack his suitcase. He hadn’t realized it before, but he came to understand that this was a role she enjoyed.

When she packed the suitcase for him, even though there was no trip, she seemed more like herself. It gave her a purpose. She needed to be needed.

Don hated disappointing her by telling her there was no trip. He tried a new strategy.

“Oh, thank you so much!” he’d say. “My trip got changed and I don’t leave until tomorrow, so I’ll just put the suitcase by the back door.”

And he did. Then he hugged her and told her how much he appreciated her.

After she fell asleep, he’d unpack the suitcase. And she’d pack it again the next day.

He noticed, across time, that she often added odd items to the suitcase. Sometimes a Yankee candle. Once in a while cat food. Cleaning supplies. A box of paper clips.

It became a measure of the progress of her disease for Don. For several months, he’d unpack the suitcase and realize that Heidi was no longer able to remember what should go in the suitcase.

But she remembered to pack Don a suitcase. And she continued to do it until she moved to memory care.

A few days before the move, she walked into the living room with a suitcase for Don. She was becoming less able to express herself verbally, so she just put it in front of Don and smiled. Don expressed his appreciation.

That night he unpacked the suitcase. It was empty.

He could’ve been sad, but he wasn’t. He realized that the suitcases were what got him and his wife through the past few months. It gave her a sense of purpose. It gave him an opportunity to appreciate her.

And the empty suitcase made him feel…loved. Heidi was struggling. Don wondered if she remembered her own name. She wasn’t able to recognize her children. She sometimes needed prompting to use the restroom, and she would never eat if he didn’t put food in front of her.

But somehow, despite her failing brain, she was able to bring him a suitcase.

6 Comments

  1. Retaining some bit of normalcy is really important, no matter how it’s acquired. I’m glad Don was able to accept and accommodate Heidi’s need to continue to do for him what she had always done. Blessings to them…

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  2. ABSOLUTELY LOVE THIS!!!! Be on their journety all the time. I could walk out the doir with the suitcase and a kiss … walk right back in and say I’m home ! ๐Ÿ’•๐Ÿ’•Linda MarascoSSM, OntarioSent from my cell

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  3. Such a poignant account of the progression of dementia! My heart aches for all those who are going through this right now. Thank you for your blog, Elaine. It touches more people than you know.

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