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?
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)
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. Continue reading Shrinking and Cluttered Closets in Dementialand