Melissa would later tell me that she had an anxiety disorder, and she knew how awful her anxiety made her feel. If Edie felt an ounce of that, she told me, then the family needed to stop the weekly salon visits immediately. I have no doubt that Melissa was acting out of genuine concern. Continue reading Being Right, Being Wrong, and Doing Your Best in Dementialand
Your cousin is getting married. Grandma loves weddings. In fact, she used to do all her friends’ hair when they would get married. She’s always adored family gatherings—the bigger, the better. You plan to go to the nursing home, help her get dressed, assist her with makeup and hair, drive her three hours to the church, hang out with her at the reception, and stay … Continue reading Dementia and the Wedding
There’s something refreshing about visiting a group of people at an assisted living, nursing home, memory care community, or adult day center—where divisions of social class tend to disappear, no one cares who much money you make, and a retired janitor is just as respected as a retired cardiologist. And all that stuff I watch on the news that makes me fear for the future of our country? I leave it at the door when I visit my friends with dementia. (It’s better than hot yoga—where my mind wanders to a Facebook argument about politics that I am tempted to enter as I contort awkwardly into pigeon pose.) Continue reading Positive Things in Dementialand
And then there are people who promise their loved ones that they will never place them in a nursing home. I once had a woman say to me, “My husband and I promised we’d never do that to each other.”
I can promise my spouse a lot of things. I can promise I’ll never cheat on him. I can promise I’ll never blow all our money at the casino. I can promise to always take the kitchen trash out when it’s overflowing. (Bill, I promise you the first two–I make no commitment to the third. The third was just an example.) You see, those are things I can control. Continue reading Nursing Homes and Guilt Traps in Dementialand
When I do presentations and explain how dementia can impact impulse control, I ask groups, “How many of you have ever felt like hitting someone, kicking someone, or verbally berating someone…but didn’t?” It’s funny. I’ve asked this question to quite a few groups: nursing home administrators, nurses, nursing assistants, social workers, family caregivers, nuns, cops, city bus drivers, college students, and legislators—to name a few. … Continue reading Impulse Control (Or Lack Thereof) in Dementialand
There’s a risk in associating humor and dementia that I cannot deny. I don’t want people to think dementia itself is funny. As a society, we do have a challenge in getting people to understand that dementia isn’t just about forgetting in old age. It’s so much more than that. The memory loss, as I often say, isn’t the worst part for many individuals and families. Alzheimer’s and related dementia diagnoses are serious and life-altering, but funny things do happen along the way. It’s okay to laugh when those funny things happen. Continue reading The Hilarious World of…Dementialand?
People with dementia are often perceived as not trying when in fact they are working extremely hard. The dementia brain must work constantly to make sense of the world. It is struggling to interpret one’s environment in the way that the non-dementia brain might struggle to understand a calculus problem when one never took a calculus class. Continue reading Fatigue in Dementialand (aka Why the Dementia Brain is So Tired)
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?
When Dementia Knocks 
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