Blog #22

This is one of the hardest blogs I have written thus far. It is not because I don’t have thoughts, but it may be because I have not lived enough life quite yet to be the authority on the topic. I may be writing to my older self as I type to you. 

Regardless, I am proceeding with it because it is important, or at least worth a conversation. However, it is tricky because it hits very close to home and the conversation may grow with more insight and wisdom as time carries on, in a “hindsight is 20/20” kind of way. 

In addition, it may be helpful to know that I was married in 2020, so my married life may be fairly short compared to those who are reading this. I would love to engage with those married or in relationships for 40 to 70 years to see what their take is on this subject as they shoulder the responsibility as a caregiver for their spouse! Alas, I will press on, despite my real life shortcomings. 

It is a tale as old as time, isn’t it? It is in our nature to try to control how others perceive us. Second to that, we would like to control how others perceive those we love, especially when they have a sickness or are affected by a brain disease.  And yet, there is a reason we love the serenity prayer so much. “God grant me the serenity to accept the things I cannot change; courage to change the things I can; and the wisdom to know the difference.” Cut to the chase, we can’t control how anyone perceives us or them. 

I frequently see caregivers attempt to hide the needs and realities of their loved ones with a dementia diagnosis. I see pride standing firm with phrases like “I’m fine,” “Thanks but no thanks,” “We will manage,” and “I shouldn’t complain. My situation is nothing like – (fill in the blank of some much more horrible situation) – so I should just be quiet and thankful.” Also, there is the spiritual version, “God is helping us through. New mercies every morning.” Does, “I don’t want to be a bother to anyone,” sound familiar? Or “My kids are just too busy.”

In addition to verbal protection, I also see physical protection – doing things for their loved one, speaking on their behalf so they are not found out by others, providing for them, at the risk of sometimes enabling them to unlearn or become lazy in things they can still do for themselves. Caregivers often exert more energy than needed, with the intent of hiding and protecting but at what cost? 

Twelve years ago, social worker and researcher Brene’ Brown did a Ted Talk on the beauty of vulnerability, which now has 4.7 million views. We are a strange bunch of creatures, hiding our struggles, pains, hurts, griefs, and challenges behind a facade of catch phrases, but apparently secretly loving the idea of what vulnerability brings to our society – trust, companionship, humility, and opportunity for healing and connection. Is that why so many people have loved Brene’s Ted Talk? She hit a nerve in our society. Our reality (pride) met the ideal (vulnerability and connection) and we are still figuring out how to balance the two. 

It’s not a matter of which stance will prevail. In all reality, the older we get, the more we realize that we are actually incapable of controlling people’s perceptions of us, how we are doing, and how we are navigating hard things. Often times, we claim to stop caring at all about what others think (an alternative coping mechanism), but is that even possible? Unbeknownst to us, the truth of our realities often comes out sideways and our outsides don’t match our insides. Our little deceptions are seen clearly by those around us. This is not a failure to “hold it all together.” I find it to be a gift and an invitation to go toe-to-toe with our alleged love of vulnerability.

Brene’ Brown also once reminded us (paraphrased) that we tend to respect those that share vulnerably with us. It is courageous, after all, when we see others share their stories, isn’t it?

Leanard Cohen once said, “There is a crack in everything. That is how the light gets in.” Why do we try so hard to resist the light coming into our situation?

Let’s cut to the chase. Are you protecting, masking, or hiding the needs of your loved one with a dementia diagnosis or your needs as a caregiver? And if so, at what cost? Is the protection of pride worth the cost of loneliness? Is the risk of feeling like a burden worth the cost of doing or being something we regret out of exhaustion, grief, fear, and anger? 

Do you compensate for your loved one? Do you present to be strong to your community? If so, I want to encourage you to lay your swords down, share with trustworthy friends or family (or support groups) what keeps you up at night, what makes you fill beach towels full of tears. Relent. Shoulders down. Deep breaths. One of the bravest things you can do is put your hand up and ask for help. 

The dementia care journey is not intended to be walked alone. It requires a village, and the village needs to know when it is needed to rise up. Trust that people want to help. Reach out to professionals and your community (friends, neighbors, support groups, etc.). Let them into your story so that the light comes in and the burden of dementia care can be shouldered by many, not you alone.