Reunions. A funeral. Trepidation. Humor. Dementia.
It's a gray day here in the Pacific Northwest, the first foray into summer's hesitant departure. The weather is indecisive, "Should I rain? Should I sunshine? Screw it, I'll just let it mist a bit while I go back to bed." With Mom thoroughly bundled up in the warmth and tenderness of MotherMinder for the day, I'm thinking the same thoughts, but decided to forgo recumbency to reflect upon this summer as it slowly slips away.
It's been a season filled with kinsman. On Mom's side of the family, a reunion in July immersed us in aunts, uncles, cousins, and various other human beings we are related to but have no idea how. It was a weekend affair with the majority of us camping on the property while dogs and kids ran unchecked through the fields (I think those dogs and kids belonged to us...?). But as Mom is no longer comfortable spending a night away from home MotherMinder brought her for the afternoon of the big BBQ then, like an aged Cinderella, whisked her away before the
pumpkin carriage of dementia turned into a
souped up sundowner of fury road proportions.
We also spent time with Dad's side of the family this summer whom we don't often see. Sadly, it was because my wonderful, kind, funny Uncle Charles died. I wished it weren't under such circumstances, but I was glad to be in the company of my aunt and cousins. I was grateful for the big smile Mom had when a favorite niece gave her a ginormous hug, and when her nephew, who is as wonderful and funny as his dad, made Mom's day with some flirty teasing.
The Boyfriend in the Basement's family reunion welcomed Mom with open arms even though once she had finished her meatballs she spent the remainder of her time looking for an exit door (it was in a forested park which made her quest even more arduous).
I'm with Mom every day, so it's not until family get-togethers that I come face-to-face with how painful it is for those further from her daily sphere to take in all of her dementia; it is understandably difficult to see the changes dementia's progression has made to their vibrant sister, aunt, cousin, friend. Especially for those who see her only once or twice a year.
One of my beautiful aunts was so overcome with sorrow after Mom had left the reunion that she sobbed on my shoulder, saying over and over, "It should have be me." I gave her a big hug and a smile as I offered these words of comfort, "Now, don't cry. There's still time. In a couple of years maybe you'll get dementia, then we'll move in and make your life hell - as soon as we're done destroying Mom's!"
I can sense the trepidation in others when Mom's around because they don't know dementia (and hopefully never will). It doesn't bother me, this is basic human nature - the unknown tends to create a little bit of panic. It manifests in others being hyper aware of Mom's every move; super solicitous to guessed at needs.
Suddenly everyone's standing to offer Mom a chair (she doesn't sit), or constantly asking if she's hungry or thirsty (she's not the Queen of England for heaven's sake!), and concerned when she ambles out of a family circle on her own that she will be immediately lost (uh... she moves at about .01 miles per hour - trust me, we can catch her, you know, eventually).
It is ever so sweet, but I know from my own experience that it's exhausting to be continuously on alert around the unknown, so The Other Girl and I use humor to put folks who need it at ease, to smash even the tiniest of egg shells they may be tip-toeing through, so that they can spend their time enjoying Mom instead of worrying about her, or their reactions to her.
Case in point, several of our relations were concerned with Mom's inability to get through a closed door, the other side of which lay a massive table loaded with desserts.
But The Other Girl and I knew better...
As caregivers, we kinda loathe having one more task added to our plate, but the act of allowing those who love Mom to react to her progression in the manner they need to, and then through our own warped humor, help them move to an acceptance, and even embrace of her, dementia and all, has been a strategy that has paid off over and over again in keeping engaged those she's held most dear throughout her life.
All we've ever asked in return is that they stick with her, with us, and we realize how very, very lucky we are, trepidation and all, that they have.
Before I started the blog, I used to email everyone once every month or two. Kinda like a Christmas letter update on Mom's dementia! I think it helped some people stave off the shock when they did get to see Mom in person. Do you think your extended family would benefit from something like that, Kerri? I know it sucks to add one more thing to your to-do list.
Isn't it nice not to be doubted? The second-guessing takes a little longer to fall by the wayside! But I always tried to treat the few instances of both that me and The Other Girl got when we first started 24/7 Mom care as people trying to show they cared. Doesn't…
My extended family is now just starting to see the changes in my mom, which is a blessing as previously they were of the opinion that however well intentioned my husband and I seem, they thought we were wrong and jumping to conclusions regarding my mom. (We must have faked her appts with the Psychiatrist, Neurologist and scans that were done.) We didn't let it bother us as we knew they would have to face it sooner or later in their own time and they did during this summer's visit. The apology phone call was appreciated. As the extended family only sees her once or twice a year, I imagine this blog is what all our future visits will entail…