This is a story about caregiving. And it’s a story about my grandmother, Betty Catherine Terry Vickers Mohesky. She was a caregiver, and she rocked it. Let me acknowledge that loss is undeniably linked to caregiving. My grandpa had multiple chronic illnesses. He had cancer. He had diabetes. He eventually had his leg amputated. For […]
Mental energy. Why are we not talking more about mental energy in relation to dementia? A few days ago I listened to an insightful and unexpectedly funny panel of individuals living with dementia talk about their experiences. The entire conference was great, but no other speakers could really compete with the panelists. As they sat […]
Hi friends! Just a bit of a blog update. You can now find me online at WhenDementiaKnocks.com. Tell your friends. In addition, I started a Facebook page with the title When Dementia Knocks. This is a place to post my blog as well as provide some other dementia resources. If you’re a Facebook person and […]
You see, Drew lives with cystic fibrosis, a disease that now has a median survival rate of about 40. My chats with her have made me realize she has a similar challenge to some of my friends living with dementia. How do you enjoy today when you know tomorrow, or the day after, or the day after that, could mean a progression of your disease? How do you live, really live, when you know your “good days” might be limited?
You see, I’m not concerned about them. I’m concerned about you. They may never understand your diagnosis. And I don’t want their ignorance to negatively impact your quality of life. You’ve got enough challenges to navigate. It is not your job to explain your symptoms to them. You have nothing to prove to them. You and your care partner must make choices in your own best interest. If they don’t get it, then they don’t get it. If they call you a diva behind your back (or even to your face), let them. You have limited time and energy. Do not spend it explaining yourself to them.
So why does your mom hum? Your mom hums because she may not be able to find the words to express herself. She may feel a frustrating inability to control the world around her. Yet her brain can still identify and express rhythm.
What we want to avoid is inflicting pain unnecessarily. If a person will not be able to process and remember that a loved one has died, giving them this information causes them unnecessary pain. If you must tell them repeatedly because they are not able to store the information, you are causing pain with no purpose. It’s like poking someone with a needle but not giving a shot.
This Dear Abby thing isn’t new to me. I wrote an advice column in my high school newspaper. In four years of high school, only one person wrote me for advice. (And I remember the letter vividly. It was from an anonymous kid who thought he might be gay. My friend Lory who is a counselor helped me write a response. I still think about that guy and hope he’s doing okay. If you’re out there, please tell me you’re okay.)
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.
When someone with dementia shows changes in behavior, we need to stop saying that they are giving us a hard time. We need to understand that they are having a hard time.
And sometimes when they are having a hard time, it’s because they are experiencing pain.