From Time To Time, Everyone Is An Asshole

Hi friends! I’m back from my unannounced break. I’ve been keeping busy as usual, and writing, but needed to take a step back from posting for a few weeks. The intense schedule I had over the summer took a lot out of me. I think the combination of that plus some caregiving challenges added up and caused my anxiety to peak again. I am grateful to say that I’m on the other side of feeling such a way. In fact, the last several days I have felt better than I have in a while. It’s like a bubble that dramatically, yet unceremoniously bursts. Honestly, it feels like I have a runner’s high. I’m getting up earlier, am more readily motivated, being more present, and doing my best to nurture this full body elation as much as possible. By feeding myself selfcare in the way of hiking, meditation, cooking, reading, and working toward being less reactionary, I can feel the ground shift beneath me. I don’t want it to settle again. I much prefer it to continue moving me forward. I don’t doubt that that life will ebb and flow again, disrupting this wave of good vibes, but I want to consciously put in the work to be better prepared for the next hurdles.

           Before Thanksgiving I shared a long winded update on Instagram regarding the evening when I hit a breaking point for my anxiety. I have decided to share it on the blog as well, so you will find it below. Please take care to note how I began this week’s introduction: I am better. Mom is being less consistently difficult, for now. And I am looking forward to slowing things down for the next few months and making a point to prioritize myself more often.

           Thank you to everyone who took the time to reach out via social media, text, phone, etc. to check in with me. The support I have from near and far is humbling and it provided comfort without me having to ask for it.

           Without further ado, here is the less than poetic short essay from a few weeks back:

Mom and I aren’t great. The pandemic and her disease are slowly chipping away at her, which in turn chips away at me. There’s been a lot of bickering and yelling between us lately. I know it’s ridiculous to try and reason with the illogical notions of her disease. Sometimes I can’t help it. 

I can’t stand her sassiness. The eye rolling, or turning her back to me when I’m conversing with (at) her, or talking shit under her breath. All of it can drive me mad.  Yesterday while in the backyard she was picking up dog poop with her little trowel, which was fine. But at the exact moment I went to check on her I saw her bend down to use her hand and scoot some poop onto the trowel because she was having trouble fitting it all onto the insufficient tool. I asked her to stop what she was doing so she could go wash her hands. As usual, she denied ever touching the poop and then started getting an attitude when I followed her inside. She walked right past the bathroom and went into her room. I was worried she’d be touching all sorts of things along the way so I lost my patience and commanded that she get straight into the bathroom to wash her hands, thoroughly. And then the shit hit the fan. Pun intended.

Over the last week I’ve been noticing my anxiety and irritability climbing. I can feel it in my body, as if every inch of me is perpetually clenched. I hate it.

I called my dad several times, but by the time he picked up he was two towns away running errands and unable to collect Mom. I desperately needed space from her. After work my dad invited me over to dinner. I popped back home first and of course Mom didn’t remember why I was so angry. 

It’s not one of my proudest moments, but I really laid into her. I vented all of my caregiving frustrations and then some. How tired I am of taking care of someone else and all of their problems. How I can’t stand her attitude and lack of gratitude/understanding as I work multiple jobs, take care of her every day, pay her bills, mind her dog, fix her house, etc. all while during a pandemic and fire evacuations and at the expense of living my own life. Part of me feels awful, yet part of me feels justified. Every day is about her in some form or another.

I think it’s bullshit that I have two siblings that don’t pitch in. At all. Or how only half of my mom’s siblings contact her, one of which has dementia herself. I hate how caregiving has turned me off from motherhood, has made me bitter and unpalatable to myself. I hate knowing that Mom may not be around, mentally or physically, to see me come out of this. Or to meet any (potential) grandchildren. Or to watch me fall in love again, whenever that may happen. Or just, to cheer me on for the small stuff.

Have I grown? Learned a lot? Become stronger? Yes, yes, and yes. But it still all feels like b.s. sometimes. And yes, I know that taking care of our elders is a beautiful honor, yada yada (often I truly believe that), but his experience is utterly dynamic on the spectrum of emotions. It’s not all good or all bad. It’s everything, all at once. I want to be a thousand miles from her and hold her forever, all within the same breath. It’s maddening. I hate this disease so fucking much.

Last night when I started laying into her about everything I’ve been feeling she started to walk away and retreat to her bedroom.

“See! This is exactly what I’m talking about!” I yelled after her. “Every time I try to have a conversation with you, you ignore me or get an attitude.”

Surprisingly she turned around and stood uncomfortably across the kitchen from me. For about ten minutes she accepted all of my anger for what it was, a desperation of ugliness. Me begging her to do the impossible: try harder, don’t succumb to the disease and its cruel implications. By the end of my venting I told her, “I’m on YOUR team. No one else is here. Not your other kids, not your own family. No one. It’s me. I know you have a really hard time remembering things. That’s okay. That’s why I’m here. But I will not stand for you being consistently rude and disrespectful. I’m trying my best to keep things together for us and I can’t do that if the person I’m doing it for is being an asshole all of the time.”

Are you cringing yet? I know I am. Again, reasoning with someone who has the capabilities and cognitive understanding of a very young child is the definition of stupidity. Do I feel great about making her feel bad enough that she was crying and saying how embarrassed and ashamed she is of herself? Of course not. That broke my heart. It made me feel despicable, dirty. But in that moment that was my truth. It was disgusting, but valid. Should I have taken it out on her? No. I’m a human. I fuck up. I make poor decisions. I’m emotionally reactive when I should be logical.

After I was done spewing my frustration Mom looked pitiful. She apologized over and over. Said she agrees with me. Lamented how ashamed she is. Said she’ll try harder. I told her I don’t care about all of that. I just need her to be on my team. I can handle the rest, although not always gracefully, but I can handle it. I just cannot stand her spitting on everything I’ve done and sacrificed for her. I don’t want to be telling her what to do all day every day, just as much as she doesn’t want to hear me directing her. But for her safety and well being I have to do it.

“I understand, Lauren.”

I melted just enough to walk over, hold her face between two palms, and say, “I love you too, okay? I love you very much. You just need to trust me. I’m here to help you. I’m your best option, even though things are really tough right now.”

Then I walked her over to the living room, had her sit on the couch, and gave her the personal pizza I had bought for her earlier while on the way home from work. No matter how much I lean into bad moments, I’m still her daughter. I still protect her. Even when I’m being an asshole myself.

I Miss You, Anyway

Seven months ago I was on a road trip to Central Oregon with my best friend, her mom, and my goddaughter. I drove them to beloved spots and found new ones to cherish. I wanted to show them why I had to decided to move to the area.

Thrift shopping and eating are typically at the top of our to-do list. We weren’t disappointed with the opportunities to indulge in both. By the end of our trip there was a small collection of antique treasures tucked into the trunk of the car.

We didn’t have a chance to go hiking or do anything too adventurous. A dusting of rain and snow, and a baby in tow, made for mellow tourism. It was enjoyable just the same. Being out of town with some of the people dearest to me in the world, making decisions at the whim of our “girls’ trip” ideations, and paying visit to another one of my closest friends and her family, filled my figurative tank. As much as I love travelling by myself, there is something uniquely special about sharing meaningful places and experiences with those you love.

Two days after our return from Oregon the effects of the pandemic really set in and quarantine commenced. I’ve been working seven days a week ever since.

Between writing, photography, videography, editing (all for the blog), teaching swim lessons, housesitting, and caregiving, I’ve kept a busy schedule. In my “down time” I’m either trying to sneak away to my room for some mediocre quiet time, often with fingers crossed that Mom doesn’t need assistance with something, or I’m tending to various house renovation projects. My workload has ebbed and flowed from month to month, but the non-stop pushing forward from one task to another has caught up with me again. I can feel it physically manifest. My lower back quietly throbs, the muscles on the bottom of my feet threaten to seize with any wrong move. I can’t stop shoving salty foods into my mouth, leaving hands and face and ankles perpetually swollen.

It’s been seven months of serving most everyone but myself.

This week I knew I was falling apart, or rather, feeling the pressure of “keeping it together” again ripping the seams of this tired body. I rolled my eyes so far and so often that they almost tumbled right out of their sockets. I cursed enough to fill up a swear jar from bottom to top. A syrupy fog slipped into the crevices of my brain, impeding it of function and intent.

Last Friday night I opted to watch a movie with Mom. She’s been yearning for quality time with me, as opposed to me working from home while she occupies herself with a puzzle or a yoga video. I didn’t make it more than twenty minutes before falling asleep on the end of the couch. It was eight o’clock, at least three hours before my usual bedtime.

Snack bowl still in hand, I awoke to the sound of Mom clicking the tv off. I kept my eyelids loosely shut just as I did in childhood when pretending to be asleep while my parents checked in on me after bedtime.

Mom slipped the bowl from my fingers. The muffled shuffling of her feet on carpet trailed into the kitchen. Dishes clattered as they dropped into the sink.

Silence.

And then I felt the softness of a familiar hand ever so gently grazing the crest of my head.

“Lauren,” she whispered, “it’s time to go to bed sweetie.”

There she was. My mother. My real mother. Mama. Moo Moo.

An ache like this should have been expected, but the surprise was genuine. The moment came and went in seconds, but like a phantom limb it lingers days later.

To be coddled by her is a thing I mourned and let go of long ago. I’m the mother now, have been for years.

But how tender it is to know the wealth of what was once taken for granted.

She’s still in there somewhere. Mom may mistaken t-shirts for shorts, leave toilets unflushed, unintentionally text herself, and leave remnants of her last meal on the dishes she “cleaned”, but in small ways her truest self still sputters and sparks.

I miss her, anyway.  

Celebration in Spite of Morbidity

“Only a few more days until your birthday, Mom.”

Her face drops and her whiny voice emerges.

“No it’s not. I’m not having a birthday.”

It’s been like this for awhile now. Mom hates the idea of getting older. I get it. Aging isn’t always something that happens gracefully, no matter the effort put into the transitions.

Too bad for my mom, I enjoy birthdays. The pomp and circumstance of them still delight me, although in recent years I haven’t had the wherewithal to keep up with them quite as much. The power of nostalgia is compelling so she’s definitely not getting away with skipping this one.

On another recent occasion I casually mentioned her upcoming birthday, stating that the big 7-0 was coming up soon. Isn’t it exciting?

She was devastated to (re)learn her age, insisting “I’m not going to be seventy.”

I tried to frame the milestone in a positive light. Not everyone has the chance to turn seventy. Despite the devastation of Alzheimer’s, she’s quite healthy. She gets to be “retired” enjoy a lifestyle where most everything is taken care of for her.

Mom isn’t having it. She doesn’t like any of it.

I tried.

I have teenage memories of Mom’s sometimes morbid sense of humor making appearances in conversation. As per the standard reaction of a daughter, I was often embarrassed by her pessimistic or macabre jokes, not finding them all that funny. As an adult I’m still uncomfortable with her odd remarks, but they hit a bit differently now.

Several times since her diagnosis Mom has said in response to discussion of a future event, “Oh, well I won’t be around by then.” And she’ll laugh, clearly enjoying the joke that could very well be anything but.

My responses usually fall along the line of “Mom, don’t talk like that.” or “That’s not funny.” or sarcastically, “Uh, that’s nice.”

Sometimes, if I have the willpower, I’ll ignore the comment altogether. I’m faced with her mortality every day to varying degrees of seriousness, so hearing a joke doesn’t usually tickle me.

It’s not that I don’t want to talk about death. In fact I think Americans should talk about death more. I just don’t need to focus on it every day.

I know that Mom wants to be cremated, but I haven’t given thought to where her ashes will be spread. I suppose that’s a question for her.

And I know both of us, her and I, have had moments where we wished for her death to come sooner rather than later. That’s one of the many fucked up things about this disease that not everyone talks about. When she is having a tough time and is cognizant of her severe decline she doesn’t want to be here. Many, many times she has shared how she feels like a burden. And in those moments she also knows that she likely will never experience a lot of the things that she longs for. She probably won’t make it for a trip to New Zealand, especially now with COVID. She may never ride a horse again. She probably won’t have the chance to be a grandmother, a role she has pined after for years. Neither of my siblings or I am nowhere near having a kid anytime soon. Even if one of us became a parent sometime in the next couple years, would she have the cognitive ability to understand who the baby is in relation to her?

And in my ugliest, most human moments I also wish she was gone. The exhaustive experience of sludging through this disease with her on my back could never truly be described, no matter how many words I labor to produce. But more than that, I don’t want her to suffer any more. I don’t want her to have to know, on any level, what it’s like to waste away until tongue and throat become weapons, unable to swallow food. I can’t bear to envision an end like that for anyone. Life is brutal.

The duplicity of these thoughts is that we equally can’t stand the idea of being without one another. These aren’t circumstances of our choosing, not in the slightest, but to know a world without a mother, or a daughter, or a friend, or any loved one for that matter, is not a crossroad I look forward to arriving to. That’s the thing about death. There’s no going back, no do-over or kiss and make up. The word itself is finality.

Outside of these dark moments of anguish, Mom and I live out the other forms of our humanity. We giggle and dance with fervor. We annoy one another. We cuddle on the couch and snore in our sleep. We fight and make up. We savor our meals and the morsels in between. And we continue to love, in spite of it all. To celebrate is to live even when you know your time to go is just out of frame.  

Happy (almost) birthday Momma.

Don’t Get Comfortable, Dear

Hold off on letting your muscles relax, your joints unfold. Tuck away that breath of crisp air you have been gulping so deliciously. Remember the quiet speech of the room. Tick. Tick. Tick. Tick. Hummmm. Whoooosh. Whooooosh. Time keepers and appliances don’t pay you any mind. Today you are only guaranteed just that, another day, with or without you. Snowflakes of ash fall. Skylight tints a color of warning. People are ill with worry, with sickness of the mind and of the body. Most cannot direct their fear into anything of much use. This is adversity in bloom.

.

.

.

If I have learned anything this year it is that comfort is a luxury whose boundaries can contract and expand. It is more dynamic than I realized, often proving so when it alchemizes into the wreckage of the unexpected.

Recent weeks have been especially challenging. I have experienced a familiar rise of anxiety in my body and within my thoughts. My workload has increased, which I’m incredibly thankful for because I have no idea what this winter will be like in that regard. But of course, this also means more to manage in terms of scheduling, and care for Mom.

About three weeks ago my dad had a COVID scare which ended up being heat stroke and an infection in his legs. For two weeks while he rested his legs and took his prescription for antibiotics I had Mom stay at home with me. Only a few days ago did he feel well enough to resume helping watch her. It’s been really hard having her with me 24/7 again, especially while I work, but I am so glad that Dad is okay and that he didn’t contract COVID.

Yesterday I had a garage sale to purge more belongings before our move next year. My best friend and her sister helped out and brought some of their own things to sell. Dad dropped off two truckloads of his unneeded goods. Leading up to the event I spent a few days organizing everything, putting up signs and creating ads online. My best friend took over posting and managing inquiries online the day of the sale. We joked about how much commission she was going to make selling all of my stuff. Thank goodness she was there because I know I would have been manic trying to handle everything on my own.

We still have a lot to get rid of but thankfully a handful of bigger items were sold, mostly furniture, that were taking up too much space. Once the garage floor is cleared then Mom and I will be able to use the treadmill that Dad passed along to us. The cooler months should provide a comfortable environment in the garage so that we can finally take advantage of this addition to our limited self-care.

This season happens to be loaded with lots of birthdays. I’ve been prepping for some of them. My sister’s, brother’s, goddaughter’s, two close friends’, and Mom’s are all within a few weeks of one another. I know plenty of other birthdays take place in and around September, but I’m feeling especially unequipped to keep up with it all this year. I apologize if I’ve forgotten anyone’s special day.

A couple dozen people have sent Mom surprise snail mail for her upcoming seventieth birthday. I’ve been keeping it all in a box in my room, waiting patiently to unveil the spoils. One friend is even sending an order of specialty cookies that she promises will knock our socks off. The outpouring of love and generosity has been really touching. I can’t thank everyone enough for taking the time to help make Mom feel special and unforgotten.

The countdown to her birthday has very recently been peppered with more unexpected maladies. Within the last seventy-two hours Dad’s dog had a stroke in his spine, which caused his back legs to give out for several hours. Dad called me early on Saturday morning to have me come over and help. The eternally sweet Labrador seems to have mostly recovered after having been examined by a vet.

That same day a fire broke out in a neighboring county, which has now turned into multiple fires that have spread into our county. The brief relief of tainted air from the last fires has been interrupted with new ash and smoke, bringing us right back up on our haunches, bracing ourselves for the impacts of disaster. Already I have gotten word of several friends and coworkers who have had to evacuate their homes, again. Some of these same people have already experienced their houses having burned down in previous wildfires and only moved back into their rebuilt homes within the last several months. Everyone in this area is experiencing some degree of PTSD.

This morning Dad let me know his leg infection has flared up a bit, so he’s waiting to see if he needs medical care beyond the antibiotics. I’m not sure if they will simply prescribe him something different or stronger, or if they will need him to be admitted to the hospital. I’m waiting for him to call me back with an update.

Now that I’ve filled all of you in on most everything that’s been going on I hope you can understand why I didn’t end up posting anything last week. I needed a breather. Though, being the person I am, I since burdened myself daily with the pressure of completing a blog post. When I fall short of a commitment it can really weigh on me, often intensifying when my stress levels are already high. Obviously for the sake of priority and health it was absolutely necessary for me to take a weekend off from writing. It is tiresome regulating the mental flagellation that can stem from that static, wicked part of the subconscious that loves to feed doubt and fear and anxiety. Not today brain. Not today.

A House Makeover

As to be expected, Mom’s grasp about us moving has proven to be spotty. She knows we’re heading out of state next year, but multiple times she has shared quixotic views about the situation. Last night, as I tucked her and Princess into bed, she asked about moving to Washington state where one of her brothers lives. To keep her spirits up I reminded her that we will be moving several hours north, much closer to him but not in the same state.

Yesterday morning I caught her mildly forlorn. After asking what was wrong she responded with, “We have nowhere to go.” I scanned my brain quickly to translate what she was alluding to. A few questions later I realized she was referring to us moving, but I had no clue as to what she meant by us not having a place to go to. A few follow up questions did nothing to clear up the context of her worry. Ah, the world of Alzheimer’s. I reminded her that there is still a lot to do before moving so it won’t be happening until sometime next year.

Her concept of time has faded considerably, so the “big moving day” is fluid, taking place both tomorrow and months from now. Sometimes I wonder what exactly her thoughts are like and how she sees the world, both philosophically and physically.

I started fixing up Mom’s house ages ago, first starting with sanding and repainting her kitchen cabinets. (Thank you Cathy and Ling for helping out that first day!) Determined to prove that I am capable of adult tasks, I aimed to take care of a majority of the work myself. Thankfully Dad stepped in after a few months and offered to help. Honestly, I would not have gotten as much done as I have without his assistance and guidance. I’m a hands-on learner so YouTube and advice don’t always suffice.

Our latest project is to repair and paint the exterior of the house. There are a couple areas of siding that need to be replaced and the paint colors, buttermilk with a rust trim, are outdated and not exactly complementary. We were supposed to begin the exterior work on Labor Day weekend, but Dad’s legs have been acting up so he’s unable to do any physical labor right now. Itching to update a major portion of the house, I opted to start painting the sections that didn’t need repairs on my own. Here’s a sneak peak of what I’ve done so far:

Being creative, I am enamored with color palettes at paint stores. The names, like “Pool Party” and “Moon Dust”, tickle me. I can’t help but imagine what I could do with them, accent walls and ceilings slathered with intentional vibes. Molding and doors alluding to Cuban sunrises or the iron-rich soil of the Southwest. I easily am swept away by the possibilities of it all.

Picking a color, or two, can be agonizing for me. For months I have gawked at houses online and in neighborhoods around my town. On many occasions I have proclaimed to have found “the one”, only to change my mind again. Finally I narrowed it down to gray with a white trim, but of course that’s not a straightforward decision. What shades should I choose? How dark or light should I lean? Cool or warm tones?

I exhausted myself and committed to a choice only once I had arrived at the paint counter at my local hardware store.

“London Fog” and “Chalk”.

These colors may be bland to some, but you have to remember that we’ll be selling this house. It needs to be modern and universally appealing. Neutral colors tend to avoid controversy by satiating contemporary tastes, or they can be like a “blank” canvas for homeowners with more eclectic style choices.  As much as I’d like to play around with colors and personalized aesthetics, I think the outer limits of my creativity should be saved for when I purchase my own home.

So far I’ve finished painting about 80% of the front portion of the house. I can’t stop staring at it. A few times I pop outside just so I can revere the transformation. There’s still much to be done before we move, but I am already really anxious for when I’ll have proper before and after photos to share.  

Postponing the Truth

I like to think I know Mom better than most anyone because of the amount of time I have spent with her over the years. Despite this she still manages to surprise me on occasion. Most recently she found out about a very impactful secret and her reaction caught me off guard.

Often I don’t share certain pieces of information with her until the eleventh hour. For one, she will either forget whatever it is I told her. Or she will obsess about the details of it, asking me the same questions over and over and over and over again.

“What time is that going to be at?”

“Is Princess going with us? I don’t want her to be all alone.”

“What are we doing?”

“And so what time are we leaving?”

Instead of setting myself up for an inevitably frustrating scenario I try to choose a more opportune moment to fill her in on plans. Preferably this will be the week of, or day before, an activity or errand or change to our routine.

For awhile now I’ve had my heart set on moving to Oregon. I have lived in California for the entirety of my life. I love it here. The diversity of people, food, music, and landscapes will always tether my heart to this state.

The reasons for moving to Oregon are fairly straight forward. I cannot afford to buy my first home in the Bay Area. It is abhorrently expensive and completely out of my price range. In order to purchase a home in California I would need to move to a more rural area, several hours away from friends and family. So I would have my very own home, but many aspect of my life would be negatively impacted.

I can’t stand the idea of being incredibly far from the ocean. The salted air and whooosh whooosh of waves is the cathedral for my soul. I very much would like to be able to take drives to the coast without having to make it a complicated or timely ordeal.

Where I live now is just five minutes from a river, twenty from a couple of lakes, and under an hour from the coast. It’s a water mecca. Anywhere I move not only needs to be relatively close to the Pacific Ocean, but I’d prefer for there to be other bodies of water nearby. I also need plenty of opportunities for hiking. If the ocean is my church, then hiking is my form of prayer. Moving my body along miles of trails, seeking self-reflection and gratitude, and appreciating the blink of my life in the universe, is the kind of mediation that betters me. Being in nature keeps me grounded and growing.

I have intentions to move to a particular city in Oregon. A few close friends live there and I’ve really loved the vibe every time I visited. There seem to be a lot of people in my age demographic, and most are very interested in outdoor activities. Actually, it reminds me of a combination of some of the towns in my current county, but in a mountain-esque setting.

I’ve spent many, many months saving money and keeping an eye on the real estate market. I love looking at photo galleries online, perusing through photograph after photograph of quaint backyards and outdated kitchens. With eyes closed I imagine planting a garden and painting cabinets. I can smell the arid pine air and taste the buzzing of young dreams.  

The other reason for moving north involves plans for Mom. I cannot take care of her indefinitely. The more she declines, the more my life is impacted. My work hours continue to be reduced with each stage of Alzheimer’s she descends into. My ability to self-care, start a family of my own, socialize with friends, go on vacation, etc. becomes more and more challenging. I cannot foresee how it’s possible to be her end-of-life caregiver and maintain my own life in a healthy way, especially when there’s no guaranteed timeline as to how many more years she’ll be around. So there will eventually come a time when Mom will need to live somewhere comfortable and receive an amount of care that I cannot give her on my own. As far as I can tell, assisted living facilities in California are pricier than most other places, so her bleak financial situation alone makes it necessary for a move out-of-state.

You can see why I have been avoiding tell her my plan.

Earlier this week I saw a house listed online that was priced much lower than comparable properties. It seemed too good to be true, but just to be sure I opted to ask the real estate agent. Ten minutes later a man called to chat about the house. I was right. The listing price was off by a decimal. The house wasn’t $174,000. It was $1,740,000. Definitely out of my price range. He chatted me up for a few minutes, asking what I type of place I was looking for. I gave him my preferences and told him he could email me weekly listings. I didn’t think much of the phone call and continued on with my day.

An hour later I went to find Mom and ask her if she was ready for lunch. I found her sitting in the front room on the couch. Her puzzle was laid out before her but she was sitting very still and looking at her hands. I knew she was stressed because the click click of a fingernail picking at another nail was jarring, a familiar symptom of anxiety.  

“Mom, what’s wrong?”

“Nothing.” She wouldn’t look at me.

“Well, obviously something is wrong because you seem really upset. Why don’t you tell me what’s going on?

She choked out the words, “You’re leaving.”

I didn’t want to assume what she was referring to, so I prodded, “What do you mean I’m leaving?”

“You said that you’re moving away.”

“Oh, did you hear me on the phone a bit ago?”

She nodded.

I laughed to lighten the mood, “Mom, don’t be silly. I’m not leaving you behind. You’re coming with me.”

Her tear-laden eyes looked up finally. “I am?”

“Yes, of course! I can’t just leave you here by yourself.”

Pitifully, she replied, “Yes you can. I want you to have your own life.”

“Oh Mama, don’t you worry about that. It’s just that I can’t afford to buy my first house here. As much as I would love to stay, I need to be able to afford my own place. Besides, I think I need a change of scenery for a bit. What do you think about that?”

Her deflated body perked up, straightening itself out as it processed the news.

We talked a while longer about the logistics of moving, why the city I chose is special to me, and the time frame for the move. A lot of things need to be put in place before we leave, so our migration north won’t happen until sometime next year.

At that point her demeanor had transformed.

More surprisingly, the following day she remembered. In fact, the first thing she said when I saw her in the morning was, “When are we moving?” She was like a little kid looking forward to a holiday, giddy at the thought of something new and adventurous. At one point she mentioned looking forward to living near “the candy shop”. I had no idea what she was talking about. Apparently, she believes that she’s been to this city before and it has a huge candy store. I could be wrong, but as far as I know neither is true.

I explained to her that we would likely have our own places. She would have her “apartment” with people there to assist her with whatever she needs, and I would have my first house. I assured her that we would live near one another so that I can visit her all of the time. She seemed completely on board with the idea, though I doubt she fully understands. I assume at some point later on she will get upset when I have to reiterate that I won’t be living with her. I know when the day actually comes around and I have to drop her off it is going to be one of the hardest choices I’ll ever have to face. I dread it with every fiber of my being and feel guilt for opting to re-claim some of my freedoms again.

But for now I am clutching on to this surprising gesture of excitement from her. For over a year I have been imagining Mom fighting me tooth and nail about the decision, assumed that uprooting her from everything and everyone she knows will be devastating. That could very well be the case when it comes down to it, but all I can do is follow her lead and make this an opportunity for betterment instead of what it feels like: a parting of two. One starting a chapter, the other writing her last.

Teaching the Language of Caregiving

To not be believed is a heartbreak that cannot be fully patched without the aid of validation. I know this because advocating for Mom has been one of the toughest battles throughout the noticeable span of her Alzheimer’s. And this isn’t even in regard to the medical and government agencies I have to try to work with to get Mom assistance. As with many heavy situations involving grief and morbid outcomes, there are spectators, some who have opinions but do little to step in and help.

Sometimes I am not heard until I’m crying or wailing uncontrollably. Even then, when ears are finally receiving my message, I am still dismissed. Sometimes the dismissal is subtle. Other times it is so obvious that I can feel the tingling burn of it on my face, a fresh hand slap across one cheek. The shock of it reverberating each time it surfaces in memory. A phantom limb of offense. There are only a few people who I have really struggled with regarding this situation, but their influence is heavy.

Many people I connect with have offered a knowing look as they offer condolences or share their own experience with watching someone suffer from dementia. I’ve noticed a few eyes glazing over a bit as they struggle to have the capacity to listen to me vent yet again, but for the most part there seems to be a general basic understanding of what Mom and I are suffering through.

I don’t blame most for these reactions. Not everyone in my life or who I come in contact with is meant to have the same role. Some are listeners and healers and empathetic sounding boards, others are lovely distractors and cheerleaders. A few challenge me and my perspective. A handful catalyze my heels to be rooted deeper in the ground. Everyone has a unique set of traumas and experiences that make up their opinions.

Over time I have received some validation, most notably from a person close to me who I butted heads with repeatedly. For awhile we would fiercely clash every few months. We couldn’t see eye to eye on what caregiving for Mom should look like. They didn’t understand why I wasn’t able to get things done on my task list, specifically things that they thought were more important than what I was focusing my attention on. This took place a couple years ago, pre-COVID.

They were hyper focused on selling her house so that she could continue to have a roof over her head because she is low-income and her expenses were piling up. This of course is extremely important, but as the sole caregiver who is in charge everything (medical, food prep and shopping, managing bills, paying for expenses out of pocket, supervising, driving, advocating, cleaning and fixing up her house, etc.) it is consistently overwhelming to deal with everything. Even when I’m able to complete a task on my to-do list, I know there are several dozen other equally as important things that need to be addressed. This constant pressure to get things done, and then sometimes having to jump through hoops when dealing with various agencies, is onerous.

I tried to explain that selling her house and placing her somewhere else didn’t solve a lot of issues. In fact, it complicated them further. If we got her a cheap, small house to live in somewhere (which likely wouldn’t be near where she lives currently because the housing market here is insanely expensive), who would take care of her? Who would get her groceries and make her meals? Who would check in frequently to take note of any further decline? Physical activity is important to delaying her Alzheimer’s progression. Where and how would she lap swim and do yoga five days a week? What kind of social network would she have without seeing all of her friends and the staff at the gym nearly every day?

After all of my efforts to explain how complicated this decision was my words fell repeatedly on deaf ears, so I gave in.

Eventually I had her house taken off the market. It was a tumultuous time, but I’m glad it happened the way it did. Selling her house would have been a poor choice. The timing wasn’t right and there were too many other factors that weren’t being seriously taken into consideration.  

I can’t tell you how many people have stepped up with words of encouragement and little acts of kindness for Mom and me over the years. I tried to make a list once, although it easily filled an entire page I knew there were many names left off it, lost in the fog of my subconsciousness. Countless hugs and emails, phone calls and small gestures to say, “I can’t understand what your situation is like, but I know enough to offer support.” Just a check in or the intention behind a wordless hug has meant so much. With COVID it’s been especially hard because we are fairly isolated from others, but friends and acquaintances alike have still taken the time to step up with support and love.

It’s funny how the abrasive opposites of these kindnesses sometimes stick with me more clearly. There have been a few specific moments that I can’t seem to forget, even when I have forgiven.

Early on into my mom’s progression at about stage three of the disease, before her official diagnosis, there was a noticeable change to her personality. This was when she started being a little more childlike, often not picking up on social cues or adhering to social rules. I remember clearly having a group discussion about her and one person saying, “I think she’s faking it.” My response? “If she’s faking it then she’s Meryl Streep because she’s been keeping it up day in and day out for months.”

At one point her sobriety was questioned briefly until she was able to spend time with the person who couldn’t fathom another explaination. Within fifteen minutes they could see for themselves, and believe, why I was sure she had Alzheimer’s.

In regard to my approach to caregiving and the decisions I’ve made, I’ve been called “a kid who doesn’t know anything.” I’ve been accused of ignorance and immaturity when I knew it was untrue. If it was true, how could I be shouldering 99% of the responsibility myself? How could I be keeping my mom safe and untangling problem after problem all while trying to navigate my own life? How is it that I could see the big picture and how many, many factors are involved in her care and the decisions that need to be made?

I get it though. The possibility that a person close to you may have a fatal disease is not something that can be easily and readily processed. It takes time. Unfortunately it takes longer for some, and often this can cause immeasurable strain on relationships, sometimes even breaking loved ones apart in ways that feel irreparable.

All but a few of the people who I’ve mentioned or alluded to have checked their doubts and egos at the door and stepped up in truly significant ways. I don’t know what I would do without them and am forever indebted to their willingness to grow and understand. They each have found avenues for which they can offer support and settled into roles that needed filling. Just recently one person in particular said, “Lauren, you know I really am starting to understand what you’ve been going through. Even just spending a few days with your mom is exhausting. I’m wiped out. I can see what you mean when you say that this is hard, especially since you do this every day. It’s not easy.” I will never forget that moment. The relief of that validation filled me up and spilled over. It took years to get there, but it happened nonetheless. I let them know how much it meant to hear how their eyes have been opened, but I don’t think they truly understand the significance of the nonchalant confession. To them it was thinking out loud, a realization born into breath in a moment of casual conversation. To me, it was truth and justice and love. It was finally knowing that I didn’t have to shout “Fire! FIRE!!” over and over again to be heard. They could now see the flames that had always been in front of us all along, licking the sky and feeding on everything in sight.

And when finally the inferno is sated they won’t be standing in the inky, crumbling rubble to ask me, “What happened here?” They’ll know.

This Is Not A Drill

Photo of wildfire smoke over my hometown
by Prem Moktan

I’d invite you to peek into my mind right now, pull back the curtains just enough to get a slivered view, but there isn’t much to witness. If anything, all you’d come upon is a blizzard of static. Shades of gray and white manic snow buzzing about without purpose, crowding anything of substance from fully forming. Simply, I am tired. Body and mind are running on reserves of energy whose origin I don’t question. But I am not unique in this fatigue.

I evacuated two days ago, along with my mom and her dog. An unusual summer lightning storm sparked hundreds of fires up and down the state of California. There are large wildfires threatening my hometown and thousands of residents in the surrounding area. The one closest to us covers 50,000 acres. Another nearby, the Hennessy Fire, is more than three times the size. The city proper has been issued an “evacuation warning”, but by the time you read this there may be another round of lightning and residents could be directed to follow a mandatory evacuation.

People I know, people who I have worked with or gone to school with or nod to at the grocery store, have lost their homes. Some are still in wildfire purgatory, waiting to hear news about whether their generational family properties have burned to their soil foundations. Most of us are experiencing some level of PTSD. Three major instances of wildfires in four years is traumatic, and cruelly routine.

The last time Mom and I left our house under such circumstances, the Kincade Fire specifically, was only about ten months ago in the fall of 2019. During that chaos we evacuated twice within twenty-four hours, the second time in the moments just before dawn when it feels most unnatural to be awake.

And of course the COVID virus is still finding ample human hosts around the globe, most especially in the United States where I live.

This is why I am on day 159 of caregiving without a full day off. During these one hundred and fifty-nine days I have experienced depression, anxiety, a panic attack, grief, resentment, jealousy, fear, loneliness, and dread. It has also been peppered with moments of quiet, laughter, connection, support, resilience, strength, perseverance, creativity, motivation, and gratitude. Too many emotions to process at once and often. Every other week there is a new challenge, a forced pivot to avoid taking on the brunt of the next matter-of-fact disaster.

This broad stroke doesn’t even mention the other issues specific to this country, many of which are systematic and despicable, bubbling to the surface as nerves become more frayed under pressure.

But I am safe. I am with family. I have a place to stay for the time being. My other work is on pause again, but I am able to continue my writing remotely. I am COVID free. I have been able to protect my mom through all of this.

Others are not as “lucky”.

And yet, it does not detract from the validation of my exhaustion.

Mom has nearly no short term memory left, so she does not understand that there are wildfires or that we are natural disaster refugees again. She did nothing to help get things in order before we left, not that I exactly expected her to. She watched me pack her things into boxes and a suitcase, sweating in the summer heat that had crept into the house. Many times she asked where I was going. Once, when I reminded her that there was a wildfire encroaching, she giggled.

Giggled.

My disgust was quick and furious, most difficult to suppress. I didn’t have time to choke down the venom of my hatred for dementia, nor feel the shame of my reaction. I at least had the wherewithal to leave the room before catching jagged words between gritted teeth.

When it was time to finally leave under the threat of an apocalyptic smoke blanket of sky, she took her time putting on her shoes. Before we reached the front door she casually asked if it was too late to go to the bathroom. She had no awareness of the car being packed to the brim with our most beloved and necessary possessions.

This is why I decided to leave town before a mandatory evacuation was issued. The idea of staying in the house a moment longer with a person whose cognition made emergencies more dangerous, nearly broke me. Her trivial nature and ignorance of reality can be wholly offensive at times, most especially during heightened events such as this. Beyond flinging her over my shoulder and walking out the door, there is no foreseeable way to swiftly direct a person with dementia through a dizzying and urgent, middle-of-the-night evacuation. I can’t even bring myself to imagine what it would be like if the flames were lapping at our porch. How in the world does anyone deal with these things? I suppose this is rhetorical, because in any moment of grit we just do. Understanding the how is to be studied in the aftermath, but really, what’s the point?

Marking Time with a Birthday Request

It’s not uncommon for adults to dread getting older. Over the last year or so I have noticed that both of my parents have made sporadic, off-hand remarks regarding their age. Mom will be seventy in just a few weeks, and Dad will celebrate the same milestone a few months following her. I think the idea of being in their seventies, understandably, makes them anxious and worried. No one is guaranteed any length of lifetime, but in general we like to think we’ll live until our eighties or nineties. This leads me to reasonably believe that my parents are perturbed about the reality that they are getting closer to the end of their lifespan, whenever that may actually be.

Mom has no idea what year it is, let alone what month or day of the week. For her, time is a foggy construct that bears little use. Well, at least in any way that the rest of us are familiar with. The only instance she really looks at a clock is when I ask her if she’s hungry. Her instinct is to see if the glowing numbers indicate a meal time, instead of listening to her body. If it weren’t for me prompting about her hunger I’m certain she wouldn’t notice if I covered or removed all of the clocks indefinitely.

Whenever I have enthusiastically mentioned that her seventieth is approaching Mom will moan, “Noooooo.” Her face will slump into a pouty face and she’ll look at me with an accusing brow. I’ve tried to remind her that it should be something special to celebrate, but she hates the idea of being old. I’m pretty sure she doesn’t have any idea how hold she is, or I am, until I bring up her birthday.

As the pandemic has been categorically the worst event to affect her health and speed up her cognitive decline thus far, I would like to do something to let her know she’s loved. Snail mail is something I think everyone treasures, especially since personalized mail is a rarity today. A couple friends of mine generously sent her mail toward the start of quarantine and she loved it. She teared up when realizing that people were thinking of her and had taken the time to send her mail. She’s a very social creature so being stuck at home all of the time is very, very hard on her.

I don’t doubt that she’ll be completely over the moon to receive more mail for her birthday. So, if you would like to be involved with this little birthday surprise and send my mom an email, a postcard, or a note in the mail please contact me at: littlesparkofmadnessblog@gmail.com. Her birthday is in early October so the deadline will be September 21st. That will give me time to gather all of the notes together to present them to her and also allow for an ample time frame for the messages to arrive.

With gratitude,

Lauren

Like Settling Dust

I could feel it rolling in, a series of swift and whispering waves in the center of my chest that grew stronger with each pulse. Soon there was no pause between the tightening intervals. The grip on my heart stole my breath away. My body felt weightless, similar to the blink of a moment just before you fully drop from the first steep slope of a roller coaster. The body unnaturally suspended, yours and also, not yours. Yet unlike with the roller coaster there is no giddiness tied to this particular weightlessness. It is a warning, a signal flare. Your body has been through trauma. This is violence of an aftershock.

No more than two hours before I had been standing in the kitchen of a modest home tucked in the wooded mountains of Northern California. As I diced plump garden tomatoes and sweet yellow onions he asked, “Lauren, have you heard of CBD?” We discussed briefly of how it can be useful. He was looking for pain relief without a high. I was already using it sparingly to help manage my anxiety. He was intrigued that I had already been using it, though I’m sure I had mentioned it before.

“Yeah, I use it here and there when I’m having a particularly awful spike in anxiety, so that I can try to avoid taking my prescription meds. Surprisingly I haven’t had a panic attack since before the pandemic hit us in mid-March, which is weird because my stress levels have been through the roof.”

Sweeping the contents of the salsa from the cutting board to a bowl, I brightly announced I would be heading outside to read in the hammock.

In my sacred space, the utmost of comfort between towering pine trees, I lay engrossed in a book until the sunlight crept away. Without enough visibility to read I switched to playing a game on my phone. I wasn’t ready yet to leave the cocoon.

It was then, after twenty minutes of mindless gaming I felt the first wave roll in, a squeezing around my heart. Taking casual note of the unpleasant sensation, I inhaled a few deep, purposeful breaths in the hopes it was the mild beginnings of heartburn. Within moments I knew all too well that the pain was something equally as familiar, but sinister in origin. The hope of heartburn was a foolish wish to lean on.

When the pressure became too strong to ignore I lowered myself from the nylon cradle and walked swiftly to the house. Right away Dad could tell something was not right.

“Are you okay Lauren? What’s wrong?”

All I could muster was a quick, “I’m having a panic attack.”

“Can I get you something? Do you want to sit down? Do you need me to do anything?” he questioned with slight urgency.

I reached into the bowels of my purse with one hand as I shook my head. With fingers locked around the bottle I was looking for, I could hear the promising shake of its contents as I lifted it to meet my other hand. I freed a single diminutive pill, washed it down with a swig of chocolate milk, and plopped into the reclining chair next to Dad.

I don’t remember the specifics of what he said, but I do know that he did his best to distract me from my own body, improving jokes and commentary regarding whatever was playing on the television.

I reciprocated with a truthful gesture of comfort of my own. “I don’t think this one’s going to last very long. It feels like it will be over soon.”

My mind didn’t feel panicked. I wasn’t worried or frightened by what was taking place. This was the fourth panic attack to date and they had all played out the same. The only difference between them was their unpredictability in timing and the length of the episodes.

I wondered silently if I had jinxed myself, taunted the pain from it’s hiding place by claiming that it had left me unscathed during these last several months of peculiar hardship.

No. I quickly knew that to be untrue.

It was much more likely that everything, body and soul and emotions, had finally eased up from working in overdrive. This short vacation in the woods had acted as a slamming of the brakes after the weeks upon weeks of survival mode I had been enduring. And with the momentum abruptly stopped I had slammed face first into the windshield. The woods, the hammock, the air scented with pine and iron-rich dirt, had acted as my safety belt. But even with this I still felt the impact of the halting crash.

If you’ve been a reader for awhile you may remember that my parents and I snuck away to this very same property a few months prior. At first I wondered why I didn’t experience a panic attack during that trip, but thinking back it makes sense. You see, I spent most days of that trip helping Dad with projects. I emptied out an entire shed, cleaned it, and re-organized all of its contents. I made meals and helped my Mom sporadically throughout each day. Yes, I did read in the hammock periodically, but I know that I was subtly tense. It was the first time we had travelled together, just the three of us. As with all new experiences that include Mom I was anxious for it not to go well. Thus, I never fully and truly relaxed, nor let go of the tension I had been gripping during the previous weeks of instability regarding the state of the world and of my own.

The day after the panic attack in the hammock I was bogged down with drowsiness and lethargy. I napped several times but never felt rested. My body was still in the process of letting go, releasing the anger and fear, uncertainty and loss of control that comes with a global health emergency.

I didn’t hike or take pictures on this trip. I didn’t do the traditional float down the river in an inner tube or even play card games with Dad under the glow of a waning moon. Instead I, we, all melted in place. The outdoor table and chairs are still untouched, covered by the protective tarp I had placed on them months ago. My hiking shoes haven’t left the reusable shopping bag I brought them in. The 103 degree heatwave only added to our sluggishness.

Time has not been wasted though. In fact, I’d say the opposite. We have coddled our time here most appreciatively, settling into the earth and our bodies like dust after a windstorm.