Teaching the Language of Caregiving

To not be believed is a heartbreak that cannot be fully patched without the aid of validation. I know this because advocating for Mom has been one of the toughest battles throughout the noticeable span of her Alzheimer’s. And this isn’t even in regard to the medical and government agencies I have to try to work with to get Mom assistance. As with many heavy situations involving grief and morbid outcomes, there are spectators, some who have opinions but do little to step in and help.

Sometimes I am not heard until I’m crying or wailing uncontrollably. Even then, when ears are finally receiving my message, I am still dismissed. Sometimes the dismissal is subtle. Other times it is so obvious that I can feel the tingling burn of it on my face, a fresh hand slap across one cheek. The shock of it reverberating each time it surfaces in memory. A phantom limb of offense. There are only a few people who I have really struggled with regarding this situation, but their influence is heavy.

Many people I connect with have offered a knowing look as they offer condolences or share their own experience with watching someone suffer from dementia. I’ve noticed a few eyes glazing over a bit as they struggle to have the capacity to listen to me vent yet again, but for the most part there seems to be a general basic understanding of what Mom and I are suffering through.

I don’t blame most for these reactions. Not everyone in my life or who I come in contact with is meant to have the same role. Some are listeners and healers and empathetic sounding boards, others are lovely distractors and cheerleaders. A few challenge me and my perspective. A handful catalyze my heels to be rooted deeper in the ground. Everyone has a unique set of traumas and experiences that make up their opinions.

Over time I have received some validation, most notably from a person close to me who I butted heads with repeatedly. For awhile we would fiercely clash every few months. We couldn’t see eye to eye on what caregiving for Mom should look like. They didn’t understand why I wasn’t able to get things done on my task list, specifically things that they thought were more important than what I was focusing my attention on. This took place a couple years ago, pre-COVID.

They were hyper focused on selling her house so that she could continue to have a roof over her head because she is low-income and her expenses were piling up. This of course is extremely important, but as the sole caregiver who is in charge everything (medical, food prep and shopping, managing bills, paying for expenses out of pocket, supervising, driving, advocating, cleaning and fixing up her house, etc.) it is consistently overwhelming to deal with everything. Even when I’m able to complete a task on my to-do list, I know there are several dozen other equally as important things that need to be addressed. This constant pressure to get things done, and then sometimes having to jump through hoops when dealing with various agencies, is onerous.

I tried to explain that selling her house and placing her somewhere else didn’t solve a lot of issues. In fact, it complicated them further. If we got her a cheap, small house to live in somewhere (which likely wouldn’t be near where she lives currently because the housing market here is insanely expensive), who would take care of her? Who would get her groceries and make her meals? Who would check in frequently to take note of any further decline? Physical activity is important to delaying her Alzheimer’s progression. Where and how would she lap swim and do yoga five days a week? What kind of social network would she have without seeing all of her friends and the staff at the gym nearly every day?

After all of my efforts to explain how complicated this decision was my words fell repeatedly on deaf ears, so I gave in.

Eventually I had her house taken off the market. It was a tumultuous time, but I’m glad it happened the way it did. Selling her house would have been a poor choice. The timing wasn’t right and there were too many other factors that weren’t being seriously taken into consideration.  

I can’t tell you how many people have stepped up with words of encouragement and little acts of kindness for Mom and me over the years. I tried to make a list once, although it easily filled an entire page I knew there were many names left off it, lost in the fog of my subconsciousness. Countless hugs and emails, phone calls and small gestures to say, “I can’t understand what your situation is like, but I know enough to offer support.” Just a check in or the intention behind a wordless hug has meant so much. With COVID it’s been especially hard because we are fairly isolated from others, but friends and acquaintances alike have still taken the time to step up with support and love.

It’s funny how the abrasive opposites of these kindnesses sometimes stick with me more clearly. There have been a few specific moments that I can’t seem to forget, even when I have forgiven.

Early on into my mom’s progression at about stage three of the disease, before her official diagnosis, there was a noticeable change to her personality. This was when she started being a little more childlike, often not picking up on social cues or adhering to social rules. I remember clearly having a group discussion about her and one person saying, “I think she’s faking it.” My response? “If she’s faking it then she’s Meryl Streep because she’s been keeping it up day in and day out for months.”

At one point her sobriety was questioned briefly until she was able to spend time with the person who couldn’t fathom another explaination. Within fifteen minutes they could see for themselves, and believe, why I was sure she had Alzheimer’s.

In regard to my approach to caregiving and the decisions I’ve made, I’ve been called “a kid who doesn’t know anything.” I’ve been accused of ignorance and immaturity when I knew it was untrue. If it was true, how could I be shouldering 99% of the responsibility myself? How could I be keeping my mom safe and untangling problem after problem all while trying to navigate my own life? How is it that I could see the big picture and how many, many factors are involved in her care and the decisions that need to be made?

I get it though. The possibility that a person close to you may have a fatal disease is not something that can be easily and readily processed. It takes time. Unfortunately it takes longer for some, and often this can cause immeasurable strain on relationships, sometimes even breaking loved ones apart in ways that feel irreparable.

All but a few of the people who I’ve mentioned or alluded to have checked their doubts and egos at the door and stepped up in truly significant ways. I don’t know what I would do without them and am forever indebted to their willingness to grow and understand. They each have found avenues for which they can offer support and settled into roles that needed filling. Just recently one person in particular said, “Lauren, you know I really am starting to understand what you’ve been going through. Even just spending a few days with your mom is exhausting. I’m wiped out. I can see what you mean when you say that this is hard, especially since you do this every day. It’s not easy.” I will never forget that moment. The relief of that validation filled me up and spilled over. It took years to get there, but it happened nonetheless. I let them know how much it meant to hear how their eyes have been opened, but I don’t think they truly understand the significance of the nonchalant confession. To them it was thinking out loud, a realization born into breath in a moment of casual conversation. To me, it was truth and justice and love. It was finally knowing that I didn’t have to shout “Fire! FIRE!!” over and over again to be heard. They could now see the flames that had always been in front of us all along, licking the sky and feeding on everything in sight.

And when finally the inferno is sated they won’t be standing in the inky, crumbling rubble to ask me, “What happened here?” They’ll know.

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