Dementia, Legacies, & the Hope that Remains…

I found this picture in my Facebook memories today, & it resonated with me once again.

You see, in the midst of everything that’s gone on in the past 6-8 months (job changes, job losses, losses of family members, etc.), my husband & I have also been walking through dementia with his mother.

I think the trauma responses have finally quieted enough that the reality of my mother-in-law’s condition is finally hitting me.

I married The Golden Child—I married The Baby of the family, & those who attended my wedding may remember that when my stepdad got to the whole, “if there’s anyone who has anything to say about why these two should not be married,” etc (which I begged him NOT to say, but he said he had to), I physically turned my body & stared down my Mother-In-Law, because if anyone was going to say anything, it was her. 😊Everyone laughed…except us…😊

 I knew what I was doing and where I was marrying into, & I knew I had my work cut out for me…but she also knew I loved her son, & that he loved me. It has to be a hard thing, to marry your son off…Lord knows, someday, the shoe will be on the other foot, & I will have a young bride staring down at me, LOL! Oh, honey, I AM NOT THE ONE!!! 

That being said, my MIL & I had some transitions to walk through. We learned, though—after all, at the bottom of everything, was the fact that we both love David ferociously. I began to learn about being a wife and eventually, a mother; she began to learn that no, I’m not a great cook, but I can bake, I can stain a deck, & I can wheel her through a mall like nobody’s business. 😊

My MIL could try someone, but she could also teach a thing or two. When doctors told her she’d never hold her knitting needles again, she’d crochet blankets for days. She’d make the most creative jewelry, & she’d proudly show me all of her pieces every time we came over. She’d make beautiful beaded ornaments, & she’d share her handicrafts with everyone that visited. She constantly made things & shared them, and talked about how much people liked her colorful designs. I love creative people, & I loved to see what she’d made…I have so many things she’s made, & I’m grateful. I shared things I made with her as well, & I have so many fun memories of family get-togethers with everyone at her house…

As time has gone on, though, dementia pulled my father-in-law away from us & made family events a bit more challenging. My MIL became basically confined to bed, and is now in a nursing home facility where her dementia has taken over…The loss of who I knew Vinita to be, with the behaviors & outbursts she’s been prone to having, have made me advocate for her even more strongly with the hospice and nursing home teams, & she is now, thanks to hospice, getting her medications more consistently. This means she has more stable days, and has less bouts of tears and anxious behavior.

This doesn’t mean her dementia is resolved, though; yesterday, the social worker said she thought she was a child. What is that like, to think you’re a child, but to be in the body of someone in their late 70’s? How confusing that must be…to sit & think about it from her perspective, really hit me emotionally this week.

At some point, my mother-in-law will not know who my husband is.

This realization breaks my heart. I find my faith challenged in this situation—I mean, why? Why does she have to walk this walk? Why wouldn’t Jesus just take her home and give her rest?!? I don’t understand, & I’m trying to take the deepest of breaths to ask Him even though I know He’s under no obligation to divulge his plans.

The social worker said when she came in yesterday, that my MIL thought she was a child, & that she went on-&-on about the goodness of God. “Ms. Vinita had a good day.”

On the bad days, she cries & asks Jesus to heal her body….

On the lucid days, she asks Jesus to take her Home…

The picture that came up in my Facebook memories speaks to how I find encouragement with “Ms. Vinita” even now…on the good days, we remember His goodness. On the bad days, we cry out to Him. Every day, we thank Him and we focus on Him, regardless of how we feel or what our minds tell us…

I know we’re saying goodbye to someone who is still here…I still don’t have that reconciled in my brain. What I have burned into my spirit, though, is that Ms. Vinita’s legacy will always be that no matter what we’re enduring, we take it to the Lord in ways that defy understanding & expectation. I find myself encouraged in my faith even as I’m struggling to make things make sense, by her example. We call on Jesus…in the good, in the bad, and in the in-between.

I hope when my time comes, that even a small part of that is in my legacy to leave.

We love you, Mom Cooley…we’re thankful to Jesus for how He holds you in His hands…

“You Are Loved.”

I woke up this morning to this note on the bathroom sink:

“Hey, Mom, Jericho here. Just wanted you to know, take care of yourself and that you are loved. Love, Jericho.”

This note has now been permanently scanned into my online drive and tacked to the corkboard in my office where it shall remain in perpetuity.

This note may wind up eventually tattooed somewhere that remains to be seen.

This note both undoes me & revives me simultaneously, in the best & worst ways…

My son was 2 years old when I was diagnosed with thyroid cancer. Thyroid cancer is the “good kind” of cancer, they say–it’s the kind where they remove the issue, supplement you with Thyroid Replacement Hormones, and send you on your merry way. Those that know me well, know this has not been my journey; I’ve had clinically-detectable thyroid cancer for almost 10 years now. “Clinically detectable” means that it’s still there (“residual activity in thyroid bed”), but not in so many levels that they can go in and physically remove it. I liken it to having a time-bomb in your neck, just waiting for it to either die or explode. It can be a mental process, for lack of a better word, to ignore it. On the plus side, thyroid cancer is notoriously slowwwwww, so although my tumor markers have gone up-&-down over the years, I’ve never gone so high that I’ve had to have a second surgery (there are plenty of times where I’ve begged them to just take out the remaining lymph nodes in my neck so that there wouldn’t be anywhere else for those booger cells to hide!!!).

It’s not uncommon for me to say the removal of my thyroid ruined my life. Getting my medicine titrated correctly has been a process, especially with the weight loss; the initial determination to figure out what medicine would work for me, darn near killed me. The thought is to keep my TSH levels so suppressed, that it makes an unfriendly environment for the tumor markers, & they’ll eventually, hopefully, just DIE (can we get on with it already?!?) Issues with diabetes, sleep apnea, & my legs/feet have been ongoing since my thyroid was removed…but the worst thing that’s happened since my thyroidectomy has been, hands down, the FATIGUE.

This is not like, “ohmygosh, I’m TIRED.” This is not like, “I’ve been up all night with a crying baby & now I have to go to work,” tired. This is not even like, “it’s finals’ week & I have 4 papers, 3 tests, and a volcano to make,” tired. This is literally like some evil being sneaks up behind you, cuts off your ankles & throws a lead cloak over you as you fall to the ground, dead in the water, can’t move/think/function, TIRED, & it hits out of nowhere. I usually say, “oh, look, someone’s unplugged me,” & down I go…

I’m truckin’ along yesterday, got home from church, started working on the laundry (I normally do this on Saturday, but we went to an art show on Saturday, so please don’t judge me for doing chores on a Sunday), hung up a few things in the sunroom, & stopped to admire my work….BOOM. I’m on the couch. “Just give me a few minutes.”

My son brought me a blanket & a pillow. David made some dinner. I laid there & took my few minutes. They both know how this goes–they know once it hits, I’m dead weight. I think they hate it as much as I do, because it’s not a good look to see your mom/wife deflate like a sad balloon.

It affects them as well, & I truly hate that.

I hate that I’ve had to cancel plans, or that I have to be so strict about weeknight activities (I can’t really do them, or there’s hell to pay the next day). I don’t like going to bed at 8:00pm. I have to stay disciplined about what I commit to, because there’s just no gas in the tank & I need to stay employed. Now that I’m back in an office full-time, I have to prioritize how much I do in my non-working hours, because otherwise, things get skewed. I have to be selfish with my time & protect it in ways I’ve never really committed to, before.

I now know that when I don’t establish & protect boundaries related to how I spend my time & energy, that fatigue leads to major issues—brain fog, sickness, impulse-control problems. My mental health swiftly declines, & I wind up in crisis mode, along with my family. It’s not just about my health–it’s about theirs, too–which is fuel for the need to protect myself and them. After what I went through last year, I realized that I had my priorities out-of-whack & I am grateful for the learning experience, even though it was painful. I will fiercely protect what I’ve learned, & I am trying to do what I need to so that I don’t have to repeat the process.

My son hasn’t had the experience of knowing me pre-thyroidectomy, & there’s a certain sadness that comes with that. He’s seen the fallout–the mental & physical struggle–& he’s learned compassion. Understanding is hard for him–he’s an only child, & he gets all of the attention & assistance he needs, so he doesn’t have a true understanding of what it’s like to have to figure things out on his own–but he’s learning sympathy (& that note just UNDID me–what a sweet kid he is!!!!!!!!!). My husband has been along for one heck of a ride; half of our marriage has been taken over in many ways by the collateral damage my thyroid cancer has caused. I’m not on this journey alone, & he’s been by my side. Our little household has rallied around me. It’s messier than I’d like for it to be, but it’s so full of love–that note from my son this morning was a huge, gigantic hug that reminded me that even when Monday morning slaps me in the face, I’m coming back home to people that love me, & it makes it all worth it.

I feel like a burden to my household, but I know that’s the enemy talking. God reminds me that I am loved, that I’m His, & that the sun is continuing to rise. He reminds me there is tremendous peace & hope with Him, & that He is using this journey to teach me new ways of relying on Him. He reminds me to hold onto my gratitude, & not to let the enemy twist my focus onto the things that frustrate me–that’s a waste of my energy, & that’s too precious to lose on something like that. Gratitude revives our spirits–it ‘s like in Monsters, Inc., where they find out that laughter is a better fuel than screaming.

We really get much farther in thinking about what we’re grateful for, than in what’s weighing us down.

In my last blog, I mentioned a few things that I’ve struggled with in the last 6 months or so, mostly related to some bitterness associated with a former friend. My therapist this week encouraged me to begin to focus on gratitude, & while I at first felt like I was being shamed for grieving all of the losses & relationship issues, I then realized she was correct: It is time to begin a season of gratitude. I am thankful for a great many things that had to do with that former friend. She led me to a time of employment that made a huge impact on my career & my self-esteem. Without that season, I wouldn’t have developed my personal mission statement. Without that season, I wouldn’t have befriended Jen, Jacque, & Stephen, three people who have changed my life. Without that season, I wouldn’t have been exposed to such a beautiful, diverse culture that I was privileged to be around in that place of employment.

Without that season & without those relationships, I wouldn’t have realized that I am worthy of so much–I am worthy of boundaries. I am worthy of standing up for myself. I am worthy, through Christ, of being fought for. That former friend led me to those three friends, who gave me the gift of solidarity. They teach me every day, along with my other friends, along with my husband and my son, that I Am Not Alone, & that life is GOOD, even when it’s hard.

When I am out of gas, when I can’t lift my head, I have a team of family & friends who point me to gratitude & that takes me to Jesus…and we can make it one more trip around the sun.

We got this.

He’s got me.

And I. Am. Loved.