I don’t often get the opportunity to chat with people in the very early stages of dementia. The nature of what I do more typically puts me in the presence of caregivers and–when I am with people who have dementia–those who are in need of extensive care. However, sometimes I get the opportunity to chat with an individual who I certainly would not have identified as having dementia had they not told me of their diagnosis.
Jackie (not her real name) was such a person. A petite woman who looked to be in her early 50’s with a blonde bob haircut and funky glasses, she struck up a conversation with me at a senior fair where I had earlier presented on family dynamics and caregiving. I expected her to tell me that she was a caregiver for a parent, but she told me that she had recently been diagnosed with younger-onset Alzheimer’s. I asked how she had been adjusting to her diagnosis, not knowing if this was the appropriate way to phrase the question.
She shrugged and told me she wasn’t okay but that her life wasn’t over either. She said she was working on adjusting to this disease rather than fighting it. She believed working with it rather than against it would work best. I liked her perspective, so I asked her to tell me more.
“I had to give up some stuff, so I gave up taking care of things others can take care of themselves,” she said.
She gave me an example.
She used to pack a suitcase for her husband when he traveled for work. Before her diagnosis, she was feeling increasingly tired and frazzled. Her husband was headed out of town, and she decided she wasn’t up to packing for him.
“You know what he said?” she asked me. “He said, ‘No problem.'”
And I guess it wasn’t a problem.
“So he’s perfectly capable of packing his own suitcase?” I inquired. She laughed.
She explained that he often forgot his toothbrush…his deodorant…his razor…(which he could easily buy at his destination). And that he didn’t know how to fold his clothes so they didn’t wrinkle.
“But,” she told me, “The world didn’t end. Wrinkled clothes don’t kill a man.”
(The next time my husband walks out of the bedroom headed to work in wrinkled clothes and I debate whether to say something, I’ll remember that phrase. Wrinkled clothes don’t kill a man.)
She also explained that she no longer gets up early when her kids and grandkids visit to make them breakfast. She knew she would have a limited amount of mental and physical energy, and she felt like getting up a little later made for a more pleasant day for everyone.
“You know what?” she asked. “They just eat cereal. They’re fine with it.”
Jackie told me that it took an Alzheimer’s diagnosis to put her in a position to stop feeling obligated to do things that her family members could do for themselves.
“I thought that my family would fall apart if I didn’t do all these little things for them. Turns out, they can take care of themselves,” she said.
All of us have limited time and energy. All of us have to decide how we want to spend that limited time and energy.
Jackie decided she didn’t want to spend it packing a suitcase for her husband and getting up early to make a huge breakfast for her family. More power to her.
Whether or not we have an Alzheimer’s diagnosis, we can consider whether or not we are spending our time and energy in ways that work for us. I should add that energy doesn’t only represent physical energy. We are talking emotional, mental, spiritual energy as well.
My husband was talking recently about conceptualizing how we spend our efforts as a closet. Once the closet is full, we can’t fit anything else in. Some of us can do more than others, but we can all only do so much.
If you know me at all, you know I do well with literal rather than figurative. However, this closet deal really spoke to me. When I am asked to join a committee or take on a new project, I think of my closet. If I say yes, do I need to throw something else in the proverbial goodwill pile to make room for the new endeavor? Do I have to make a decision to be less invested in something I’m already doing? Will I end up jamming everything into the closet and being less proficient at everything I do?
Here are some of the things in my conceptual “closet” in no particular order:
- Writing this blog
- Teaching my college classes
- Overseeing interns
- Speaking engagements
- Taking care of our dogs and cats
- Watching “The Bachelor” (most weeks this is a two hours commitment!)
- Keeping the house clean-ish
- Doing Next Level Extreme Fitness
- Going to athletic events at our university
- Being on boards/committees on campus and in the community
- Making overnight oats every night for my husband and me
- Administrative responsibilities at work
- Working on research articles
- Running–when it’s nice outside
- Visiting memory care community, adult day centers, and nursing homes
- Serving as NCAA Faculty Athletics Rep at our university
- Advising Family Service and Gerontology majors and mnors
Some weeks my closet seems pretty dang full. (To be fair, other weeks are a bit more sparse.) A few months ago, I felt like I was having trouble keeping my closet manageable. Everything was overflowing. I felt like the door wouldn’t even shut, so something had to change.
I could have quit teaching my college classes. I could have just gone MIA on campus. I could have stopped coordinating the Gerontology major. No more responding to emails from other areas of the university or turning in reports about the major. I could have not shown up at speaking engagements. Because these are responsibilities related to my paycheck and my professional reputation, tossing them out of the closet didn’t seem like a good option.
I had to look elsewhere to make a change. For years I had taught fitness classes at our community rec center. I quit.
Could I have given up “The Bachelor” instead? Yep, but I didn’t. Could I have decided to keep the house less clean? Definitely, and I’m not a clean freak anyway. I could have even chosen to forget about this whole blogging endeavor except that I recently invested in a whole year of an upgraded membership to WordPress so you all wouldn’t have to see ads. I guess I have to blog another year to make that worthwhile.
I have a limited amount of time and energy to spend as I wish, and teaching fitness classes is what I pitched out of my closet for the time being. It’s the decision I made. Someone else might have made a different decision. Someone else is not me.
If I were diagnosed with Alzheimer’s or another disease, my time and energy would be more limited, and I would likely have to make more decisions about what I throw out of my closet. (If you are following me with this whole closet analogy, picture that closet getting smaller.) This is what I see people in the early stages of dementia doing whether or not they realize it.
You can also picture that shrinking closet for someone who has depression, cancer, or fibromyalgia. The more limits life puts on us, the smaller that closet gets. As health declines, the closet may be 10% of the size it used to be. It’s increasingly important to evaluate what the heck you are trying to manage in that shrinking closet.
It’s adaptive to acknowledge that your closet is no longer the size of the one Mr. Big built for Carrie on Sex & the City. It’s a closet you’d find in a studio apartment in downtown Chicago. Accept it, and evaluate its contents. You can focus more positively on what is left in your closet when you throw out things that are no longer working for you.
I should also add that an empty closet is…empty. Even a tiny closet needs some contents. We must have something we perceive as meaningful in which to invest ourselves. When we lose that, we lose our purpose.
Sometimes you find, like Jackie did, that giving up some of the things in your closet isn’t as traumatic as you might predict. Many of us, Jackie and myself included, think we are irreplaceable. I didn’t know what my fitness class participants would do without me. You know what? They still exercise–just with a different instructor. I miss them, but they are fine.
Similarly, Jackie’s husband is able to manage to pack for work trips on his own. Even a crisis like forgetting a toothbrush isn’t really a crisis. And although Jackie’s family enjoyed the breakfast she made, they are fine without it as well.
I once spoke with a woman who had cancer about the minimal energy she had while doing chemo. I remember her telling me that she couldn’t do everything so she had to choose what was most important.
“But really,” she told me, “that’s what I should’ve been doing all along.”
So here goes my attempt at something poetic and meaningful, keeping in mind I’m notably bad at poetic and meaningful.
Whatever life throws at you, may you keep your closet full but not cluttered. We can’t control everything about our lives, but we can control where we invest our time and effort. We can’t invest time and effort in everything. We may have less to invest than we’ve had in the past. Invest it in the right things for you. Don’t let how other people organize their closet make you feel like you’re organizing yours wrong. They aren’t you. They may have a bigger or smaller closet, and they may have different priorities.
For now, I’m keeping The Bachelor in my closet. Don’t judge.