It’s been a shocking 993 days since my last post. (Thank you all for staying with me, and a special thanks to those who’ve subscribed recently.) So much has happened in that L-O-N-G length of time. My beloved stepdad, Colonel Curtis D. Fish, died from complications brought on by dementia. Then my dear friend, Bonnie, who suffered from early onset dementia, died. Then my friend, Roberta, who also suffered from dementia, died. That’s 3 people since my mom died of dementia in 2014. But given that there are approximately 46.8 MILLION people worldwide living with Alzheimer’s or other forms of dementia, I guess this isn’t surprising. But it sure is unacceptable. In fact, dementia in all its forms is beyond unacceptable. So how do we learn to accept it?
From the blog
My mom’s favorite movie had to be “Sound of Music.” It always seemed to be on Sunday nights, so we’d race home from church to watch it. Those songs are like my childhood soundtrack. So, when I thought about telling the story of Mom’s dementia from the beginning, who popped in my head but Julie Andrews. Go ahead, you know you know every song from that movie. So…let’s start at the very beginning (a very good place to start).
Anyone dealing with dementia finds themselves asking: when did this start? There are always small signs, but we usually ignore those, or count them off as isolated incidents: forgotten names; momentary memory lapses; one odd statement. Or maybe there’s bizarre behavior, but it’s not until later that we identify it as dementia’s beginning.
But there’s almost always one defining incident, one that can’t be ignored. That incident is the one that kicks us out of denial, the one that makes us say: this is dementia. [Read more…]
Idioms are a funny thing. You hear them all your life, never really thinking about them much. Then an expression’s used in a context that stops you, well, dead in your tracks.
In the last week of her life, my mom came up with a doozy. We were blessed that she was fairly coherent and awake a good part of that week. Like many people do on their deathbed (literal deathbed, that is, not the idiom kind), she talked about needing to rest.
Then she said: I’m just dead tired. [Read more…]
Part of the One Brave Cowgirl Creed is: “It Is What It Is.” Frankly, believing that when it comes to dementia (or any part of life, for that matter) is sometimes like pushing a mule up the Grand Canyon. In a long dress with long sleeves. In August.
On the way home from running errands last week, I thought about how I don’t want to talk about dementia. Not particularly a good thing for someone with a dementia blog. Then I thought: what if I talk about not wanting to talk about it?
Because, you know, it is what it is. [Read more…]
This is going to sound crazy, but I didn’t think it’d be this hard. I mean…hadn’t I gone through all sorts of anticipatory grief during Mom’s years with dementia? Somehow, I thought that entitled me to less grief when she died. Or at least that it would diminish the blow for that final end. Wrong.
“Nothing and everything has changed.” After Mom died, a friend sent this sentence to me in a long email about death, loss, and how to keep moving. She’s an expert at it, I’d say, after losing both her partner of 25 years and her mom.
Losing is a funny euphemism for death, isn’t it? It’s not like they’re stuck under the bed, or hidden under a stack of papers. But they are gone, and even if we firmly believe in some form of afterlife, the truth is we don’t know where they are. Not really. [Read more…]
We had a terrific storm last week. When I came downstairs the next morning and saw the sun trying to peek out from behind the clouds, guess what song popped into my head? That’s right: “The Morning After,” the theme song from The Poseidon Adventure.
Then I thought of Shelley Winters swimming underwater. Happens every time. You say “Poseidon Adventure” or play that song (usually the grocery store is the culprit), and I think “Shelley Winters underwater.”
It’s a perfect image for what the past week has felt like: days on end underwater. Not literally – I’m talking about that feeling you get when you can’t shake the blues. When depression feels like a wearable garment you’d like to take off, but can’t.
Dementia sucks. Sometimes the sadness just overwhelms you. I could stop right there and you’d know what I mean. But it might be more useful to talk about how to survive the caregiving blues, otherwise known as how not to drown.
I’m writing this with a very sore finger. I smashed it during my last caregiver meltdown. I’ll spare you the details, but let’s just say I should never be left alone with a set of instructions and a screwdriver.
Assembling things is better left to professionals. It’s for my own safety, especially when I’m in the middle of emotional trauma and don’t even know it.
If you find yourself doing any of these five things, you could be headed for trouble. Hide the tools and warn your family: it’s about to get ugly.
Woohoo! JoAnn has given us our inaugural reader story! Thanks a million, JoAnn.
My mother-in-law, Rose, suffered with Alzheimer’s disease several years ago. When Rose was ill, I found humor in so many places with her. We moved Rose into a memory care facility shortly after her husband’s passing. She did okay there, but having a private aide help out was a huge help and gave us peace of mind that Rose was getting an extra bit of TLC when we were not around.
When we did visit, we’d send Angela (Rose’s aide) out for a little breather. Alzheimer’s disease caused my sweet as sugar mother-in-law to occasionally become physical and angry. Angela took the brunt of this, but she always had a smile and would share funny stories of their time together. I’m so sad Angela was out of the room when Rose cracked us all up this time.
My husband and I, his brother and his wife, and at least a couple of the grandkids had been visiting Rose one afternoon when I guess she decided she’d had enough. She didn’t ask us to leave, but instead laid down on her bed, closed her eyes, and pretended to be asleep. Deep breathing and all.
But every once in a while she’d peek one eye open to see what was going on. She’d see all of us still there, roll her eyes, sigh audibly, and quickly squeeze her eyes shut again. You could almost hear her thinking: Geez, are they STILL here? What’s up with these people? Can’t they see I’m sleeping?
We all started laughing and finally she sat up and laughed with us. These are the moments I choose to remember with Rose.
I had the most phenomenal experience this past week. I met an alien species: an 83-year old with a memory and the capacity to travel the world alone. As if that isn’t shocking enough, she even used an iPad and could work the TV remote!
I know, I know…I’m stunned and amazed, too. Who are these people? I’m so immersed in the dementia world, I forget such humans exist. Or are they human at all? (Cue creepy Sci-Fi sound effects).