Balance her between your eyes
It's hard to say how much time is left; it's always been hard. We didn't talk about it directly, but I know my mom didn't think she'd...
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Sara
- Nov 17, 2021
- 1 min
Love Is Patient, Love Is Kind...
My dad isn't exactly someone I'd call religious, but there is one popular Bible passage that he often recounted after my mom got sick. . They are fairly popular verses, so much so that they almost feel hackneyed after being printed on countless signs, coffee mugs, and other assorted knick-knacks. But for my dad, they still resonated, and for a while, if he was invited to a wedding, he'd only purchase cards that included them in the sentiments. I was recently cleaning and foun
Sara
- Oct 18, 2021
- 1 min
So, before you go Was there something I could've said To make your heart beat better?
Last week, I was pretty certain my mom was going to die. This shouldn't be a surprising revelation, especially not 16 years in to this dogshit disease, but there I was, numb and stupefied by the thought. Alzheimer's is especially cruel like that--once you accept the latest loss of your loved one at the hands of this disease, once you get comfy with navigating whatever the new "normal" looks like, another thread in the human fabric begins to unravel and there you are, bracing
Sara
- Sep 13, 2021
- 2 min
And I can read the promise In your mind To yourself again, that you will Play the strong one
Before the diagnosis, but not too far off from it, my senior year of college. Knowing what we know now, there were already signs that something was wrong--depression and mood swings and odd behavior that didn't totally feel like my mom. There are symptoms to this disease that aren't talked about often--becoming withdrawn, paranoia. My mom didn't want to interact with our family in the same way she had before. She became more sullen, more reserved. I thought maybe she was havi
Sara
- Sep 9, 2021
- 1 min
Shadows settle on the place that you left, Our minds are troubled by the emptiness
Who knows why we're attracted to the things we are while grieving...
Sara
- Sep 6, 2021
- 1 min
I sometimes wish I'd stayed inside my mother, Never to come out
Not much to say today; I just really miss you is all. #grievingdaughter #grieving #grief #griefsupport #griefjourney #endalz #earlyonsetalz #earlyonsetalzheimersdisease #earlyonsetalzheimers #alzheimerscaregiver #alzheimersawareness #alzheimers #alzheimersdisease
Sara
- Sep 3, 2021
- 1 min
it's hard to be an outlaw who ain't wanted anymore
Hard to believe it's already been a year of Josey Wales, our little outlaw kitty who came into our lives rather unexpectedly, but exactly when we needed him to. This photo was from around this time last year when I'd bring him along for visits with mom. Everyone was impressed with how well he'd sit with her and snuggle, and how receptive she seemed to the little furball in her lap. I've heard so many people talk about how giving their loved ones the opportunity to interact wi
Sara
- Aug 31, 2021
- 2 min
And it's the same face, Your heart keeps breaking in the same place
"By locating our consciousness in only one biological oscillator, the brain, we have blinded ourselves to perceptions that have been common to human beings since they emerged from this Earth. In gaining a reductionist understanding of the world, we lost touch with the essential nature of the Earth and ourselves… How much of life have I wasted by believing the thing I was taught, that thinking is what makes us better, that the brain is superior to the heart." -- Stephen Harrod
Sara
- Aug 25, 2021
- 1 min
We'll you thought about leaving and I bet you will That morphine kills the pain I feel.
It's time to administer the #morphine and my dad is careful as he checks to make sure the liquid reaches the faint line on the syringe before we administer. When people hear the "M" word, they get scared, and ask as delicately as they can muster if we are afraid if it will kill her. I want to say there are things worse than death, especially as it relates to what my mother has experienced over these past 16 years, but I simply smile and explain that it is dosed to manage her
Sara
- Aug 16, 2021
- 2 min
I'll Never Let Go Of Your Hand
Mom's caretaker is enjoying her well-deserved time off for the month, which means she has her second-string helpers reporting for duty the next couple days. Admittedly, I used to dread helping with bathing, but I've come to appreciate the time much more these days, maybe it's because it's a less-frequent task, maybe because any time I still have with my mom feels precious. I'm not sure this is time my mom enjoys as much, especially as she's jostled and flipped by someone I of
Sara
- Jul 11, 2021
- 1 min
I wasn't looking, but oh I found A gap in the clouds, the sun comes out
Winding down a lovely weekend with a visit to my parents'. Pizza for me and dad, and mashed potatoes, sweet potatoes, soup, and OJ with thickener for mom. It's taken some time, but I've been learning to let go of the wishing for the Things That Could've Been, while starting to embrace The Life That Is. That letting go allows me to feel grateful for the quiet visits where I can spend time with my mom and telepathically tell her all the things going on with me, while playing he
Sara
- Jun 28, 2021
- 1 min
You can send me to hell, But I'll never let go of your hand
It's not just about finding love, it's about holding onto it once you've got it. In good times and bad. In sickness and health. Happy 51st anniversary, mom and dad. Thanks for helping me truly understand the meaning of "devotion." (Definitely a #latergram... Probably circa 2016? When mom was still able to sit at the table with us/eat solid foods. 💛) #earlyonsetalzheimersdisease #earlyonsetalzheimers #dementia #endalz #love #grief #alzheimers #earlyonsetalzheimersawareness #a
Sara
- Oct 26, 2020
- 1 min
Don’t forget me, make it easy only just for a little while.
You know I think about you, let me know you think about me, too I remember your good nature and wicked sense of humor. It was a special accomplishment to make you to laugh at dirty jokes, despite your best efforts. You had the ability to make any situation a little more fun/bearable, with a little effort and imagination. There was never a circumstance when dessert wasn’t a good idea. Before the #alzheimers really took hold you said you wanted things to be as normal as possibl
Sara
- Apr 26, 2020
- 1 min
And I guess that’s that, almost shorter than a dream and definitely of less noise
Losing someone to #alzheimers disease is so hard because it happens in so many stages, you have to mourn so many individual losses. It’s becoming clear we’re hitting another stage with all this, although to be honest, I don’t exactly what that means. Sometimes I think we’re just adjusting to what the next few years will look like, sometimes I wonder if we’re closer along than that. It’s such a fucked up thing to have to wonder about, and it makes it hard to answer people when
Sara
- Apr 15, 2020
- 1 min
Oh, I won't be afraid just as long as you stand, stand by me
I know the last several weeks have been crazy for everyone as we all are not only navigating this new normal, but also being confronted with our own mortality. This especially has been true for us in the last few weeks, as we found ourselves dealing with an unexpected hospitalization for my mom after she experienced a series of seizures on March 26th. The word that I continuously used until she was able to return home was Gutted. Not being able to ride with her to the hospita
Sara
- Sep 8, 2019
- 1 min
I've learned to lose you, can't afford to
Today was the first time in so long my mom looked at me and seemed to connect with my being there. She even nodded a few times at questions I asked her, responding to my voice and touch. Interactions that may seem so insignificant, but after the past few years where the disconnect between her and her disease seems to deepen, little moments like these feel all the more special. It’s hard to explain to someone who doesn’t know #alzheimers firsthand just what this disease does t
Sara
- Apr 12, 2019
- 2 min
People living on twenty four hour clocks, but we’re on a ride, yes we’re on a ride, we’re on a ride
#realtalk: It’s been a rough week coming back after the #alzforum for a whole lot of reasons, but a very big one I’m just finally able to mentally articulate is the unexpected feelings and emotions the whole thing managed to dredge up for me. It has been 14 years of my mom having #alzheimers. 14 years of unraveling and caretaking and forgetting–not just her, but also me. Forgetting the parts of her that were so bright and lovely, that without will always leave some part of my
Sara
- Mar 30, 2019
- 1 min
The District Sleeps Along Tonight
I spent the day enjoying the nation’s capital before the #alzheimers advocacy forum officially begins tomorrow. As I laid on the stone slab near the WWII memorial, soaking up the unexpected summer-like day we were blessed with, I realized the spot I chose was nearly the same as where the 2nd photo was taken, almost three decades prior. I will never be able to get my mom back. That’s a fact that I can’t say I fully accept, but one I know I must understand. But I will forever b
Sara
- Sep 20, 2014
- 5 min
Challenge Accepted.
So, my lovely writer/Internet friend, Kate, recently tagged me in a writer/blogger challenge to answer questions regarding my writing process. And true to my writing process, I’ve been writing this in bits and have been dragging out actually posting it. But it’s Saturday morning, I’ve got nothing to do for the next few hours, and it’s time to finally get to writing! It’s hard to believe how many years have passed since Kate and I first had the pleasure of working together on
Sara
- Jun 1, 2014
- 1 min
Call Me By My True Names.
So, I was helping my mom get ready for bed when she reached for my phone. Being that she has a habit of picking up things and wandering with them, I say, “No–don’t touch that. That’s mine.” “Oh, it’s yours?” she says. “Yes.” I reply. “…Nerd.” #alzheimers #family
Sara
- Mar 30, 2014
- 3 min
Silver Linings.
I’ve been posting a lot recently about my recent frustrations and navigations through life lessons learned, but I feel it fair to report that the past couple of weeks have also had their strange silver linings. I recently reverted back to using my maiden name at my job, which is amusing, because this is the one place where the shift back to my old name seems strange. Everyone there knew me from my married name, whereas most other people in my life still referred to me by my “
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