Recently I was at a social gathering and was asked to talk to a friend of a friend who has been worried about his memory. I was immediately concerned when the friend of a friend didn’t recognize me and thought we were meeting for the first time (which we were not). We don’t see each other a lot, and maybe I am not that notable, … Continue reading Do What You Love Until You Can’t
Caregiving is hard. You are not stressed because you need a nightly bubble bath and a yoga class. You are stressed because caregiving is hard. Continue reading Caregiving is Hard Because It’s Hard
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 ten or so years, we watched his functionality and independence … Continue reading Why It’s Okay to be a Proud Caregiver: A Story About My Grandma
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 on a stage in front of a decent-sized audience, they … Continue reading Dementia and Mental Energy: How Do You Choose to Spend Your Limited and Precious Mental Energy?
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 feel compelled to “like” the page, you can find … Continue reading When Dementia Knocks: Update
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? Continue reading When Dementialand meets CFland (A Guest Blog from a Friend)
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. Continue reading When You Are Accused of Being a Diva in Dementialand
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. Continue reading Why Does My Mom Hum in Dementialand?
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. Continue reading Delivering Bad News in Dementialand (Or Do I Tell Mom Her Sister Died?)
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.) Continue reading Playing Dear Abby in Dementialand (And My Overdue Apology to My Muscatine High School Peers)