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Musings from the land of Enchantment


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www.stephanieyoungrosen.com

Family Fun & Heartbreak

4/9/2021

2 Comments

 
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Fun with the Fites 
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The Godfather's in Town

Having a parent with dementia is like riding a bike with an irreversible leak in one of the tires.  Only it’s a tire you can’t change.  And you can’t patch the leak.  Slowly, daily, the life you have always known is slipping away from you. You must keep pedaling, keep living, but there’s nothing you can do to fix it.  
 
I am never quite sure what I will find when I call my mom’s room in the nursing home. Some days, my mom is her normal sweet self. And other days, although she always still recognizes my voice, she is disoriented. And her aphasia has her saying things that just don’t make sense. The hardest part is that this could go on for years. 
 
Compound this with COVID. There was a case on her floor, so she is in quarantine for two weeks as per Massachusetts, despite having been twice vaccinated. Some of the staff (I discovered in a lucid call yesterday) have been sarcastic and disrespectful to her.  I have called her nursing home (literally) fifteen times in the last 22 hours to address this, mostly talking to answering machines of administrators who don't call back.  I will prevail until solutions are found.  Hell hath no fury like the daughter of a scorned mother. Two weeks to the day after my second vaccination I will fly out to see her, and will be there for Mother’s Day. 
 
For the first time, I missed my blog deadline last week, and a zoom meeting I had set up with friends.  I’m abnormally distracted.  Having parents whose health is failing is a low level constant stress, like pedaling a bike with flat tires.  I don’t like to talk about it, or even think about it, but it’s exhausting. My friend Molly, whose mother has full-blown dementia, found out in neurosurgeon Sanjay Gupta’s latest book Keep Sharp that when you are the primary 24/7 caretaker of a dementia patient (usually a parent) your likelihood of getting dementia skyrockets unless you take daily action ASAP. I'm not even the primary caretaker, but the disease casts a malaise on all the involved and concerned.
 
On the bright side, having kids later in life means that my waking hours (when not calling the nursing home) are filled with hustle & bustle and LIFE!  Our first week back at brick and mortar school has meant that we bike daily (we share shifts with a very hip neighbor mom). There’s been play dates, new swim lessons, playing catch (Ty has his first little league game tomorrow, with Jory as his coach. And he was put on the Red Sox. Hallelujah!), theater group, girl drama (realllllly??), vocal coaching, book group fun, delight with teachers, dinner celebrations, and the weekly spelling test to conquer.

Add to this the joy of dear friends Mary Clark and Lauri Lee, who are daily cheering me on to seven hours a week spent writing my book. It is ON. Full ON.
 
Combine that with biggest highlight of things opening up: friends from Los Angeles coming to visit. Uncle John Maraffi flew out for an amazing outdoor Easter dinner and kept us all entertained for days. Our dear friends Lauren and Austin Fite stopped by en route to Tennessee. We shared brunch, stories and many many laughs. Lauren asked if I missed LA. I honestly hadn’t focused on that, so my first answer was, “Well, the ocean…”. But as they drove off, I realized with great sadness that what I most miss from LA are friends like the Fites.  They are family to us now, as we’ve grown together and have gone through so much over the years.
 
A place is ultimately always the people who inhabit it, isn’t it?  
 
Thankfully, we’ve started to make remarkable friends here (one of whom, Marcia Gordon, is my Monday yoga buddy and joined us for Easter dinner.  We met through a mutual friend – in LA.).  
 
Canadian author Anthony Douglas Williams’ words are so true: “Mingle often with Good People to Keep Your Soul Nourished.” How starved our COVID-weary souls are!! 
 
Our old friends who become family keep us young, and it is our new friends who keep us current.  Here's to both!
2 Comments
Lauri
4/9/2021 02:19:27 pm

"A place is ultimately always the people who inhabit it, isn’t it?" So true and wise. And our experience is of a place is completely wrapped up in the people we met/spent time with while there!

Although your metaphorical bike may have a tire that is slowly losing air, you still have control of the handlebars and the brakes! So steer gently, slow or stop when you need to, and one day, you will feel the wind in your hair again.

Let me know when you're going to be in New England in May, I'll try to come see you. Hang in there, my dear friend.
<3

Reply
Steph
4/11/2021 08:57:56 am

Wow - such incredible insight Lauri!! THANK YOU. So easy to forget that I have some power on this metaphorical bike...the handlebars and brakes. Such a paradigm shift. Amazing. Your reminder actually brought tears to my eyes!!

Would love to see you if possible - know how much you have going on so we'll do our best. xoxo

Reply



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