My Mother, Her Dementia and Where I Fit

With early onset dementia, our roles are now reversed. She frequently calls me "mom".


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The Grande Finale


Yesterday morning started just like any morning.

I got up, brushed my teeth, took a shower, and then tweaked the eulogy for my mother.

While I was going through the final draft, I paused to watch the final 10 minutes of the Cassini mission. Aaron and I watched as the NASA mission team in JPL (The Jet Propulsion Lab in CA) went through all the final steps for closing a 20 year mission. A junior scientist on the team interviewed her mentor. Everyone had their role and their job, and they knew the things to say as the mission leader did the final roll call.

I had already known that the extended mission for Cassini coincided with my mother’s journey through dementia, so I had built that into my eulogy (which you will be able to read below), but I hadn’t expected the scientists to have all the right words for a eulogy.

I’m not even joking that I had a few minutes of thinking I might just transcribe everything from the scientists and repeat it 2 hours later at my mother’s eulogy. Or better yet, just play the video.

Other than the fact that I spent all day Wednesday working on the thing, the main reason I didn’t completely steal the whole 10 minutes live feed and replay it was that I didn’t want a sad eulogy. I wanted people to laugh and smile.

So, for the most part, I stuck to my own words.

Pastor Mark Arni started the service talking about rainbows and how they must exist with a combination of sunshine and rain, happiness and pain. (Get the Rob Base song out of your head, this is a funeral for chrissakes!).

He read her obituary, a little prayer, and then it was my turn.

I had been nervous for days for this. I didn’t sleep well wanting to make sure I did everything right. I googled how to write a eulogy. Let me tell you, actually googling a eulogy is just as strange as actually saying “google a eulogy”. It’s surreal and ridiculous because they’re supposed to be from the heart.

Well, not only did I research how to write a eulogy, but I also did a bit of research for the content. What better way to pay tribute to a wonderful teacher than to put some educational material in her eulogy?

Without further ado…

~~~~~~~~~~

Pastor Arni told me to take all the time I needed in giving this eulogy. Never say that to a Darling.

As you know, Darlings are a quiet, humble bunch that don’t really stand out in a crowd, so we need to be prompted to even give a speech.

I’m kidding. Because I’m related, I typed up my eulogy to keep on track.

It’s very fitting for our theme to be rainbows when eulogizing Kaye Michele Darling.

There’s the obvious connection with the color wheel and colors visible to the human eye. And you have the use of rainbows to symbolize unity and diversity which is very significant in the art community.

Not only in Genesis is there a rainbow story, but also in Norse mythology, a rainbow bridge called Bifrost (pronounced Beef-Roast) connects the world of men (Midgard) to the realm of the gods (Asgard). One translation of Bifrost is “shimmering path” referencing the fleeting nature of rainbows. Bifrost is a rainbow path to the heavens.

The Leprechaun’s gold is at the end of the rainbow because it is impossible to reach; It cannot be obtained.

There are many types of rainbows; twinned rainbows, full circle bows, as well as fog bows, and even moon bows.

Regardless of the type of rainbow, though, there is one aspect that is consistent: you cannot contain a rainbow.

It has also been discussed in the science community that rainbows might exist on Saturn’s moon, Titan. This is significant for me, a space nerd, because the extended spaceflight of Cassini, the spacecraft studying Saturn, started in 2010, the same year mom was diagnosed with dementia.

That mission ended this morning, with Cassini, out of gas, plunging into Saturn’s atmosphere and sending back amazing data it could not have otherwise been captured.

A brilliant journey with a Grande Finale.

For mom’s Grande Finale, though, I don’t want to just talk about rainbows and spacecraft.

Let’s talk about Kaye Michele Darling herself.

When I was younger, my grandparents called her Mitch. Some older friends called her Kate or Katie.

My grade school friends knew her as Michele.

Her nurses called her Kaye Kaye.

Depending on when and how you knew her, you might have called her something different.

Kaye or Michele or Darling or Ms. Darling.

Regardless of what you called her or when you knew her, you were just glad to have had her in your life.

When I think of my mom, I think of her laugh. Her snort. And then her snot. She always carried a snot rag.

And her smile, that went up on the left side.

She was somehow oblivious and observant, all at the same time.

She ran into things; glass doors, regular doors, glass walls, regular walls, chairs. She broke her nose, bruised her shins, tripped, stubbed her toes. And right afterwards, she would laugh hysterically and that’s when the snot would come and she’d probably wet herself a little.

She knew how to laugh at herself.

Not only did she laugh at herself, but she taught me to laugh at myself.

And she taught me to see all the colors in a shadow. She didn’t paint with black. As you can see in your flyer.

Black has all the colors, so she painted with reds and blues and purples and greens, all the colors of the rainbow, to make shadows.

Because she was observant, she was also the best at buying gifts because she put thought into it. Not like hours of thought, but she thought about the person and what kinds of things they liked.

Several years ago mom and I were at World Market shopping for Christmas. I’m stressing out with a list and She just walks up to a quesadilla maker and says, “Frank would like this”.

I’m like, What?

She’s like, yeah, he said he liked quesadillas.

And that’s just the way she was. She paid attention to the person and what they said. She didn’t pay too much attention to the rest of life.

One year for Easter, mom bought Aaron a box of Girlfriend Mints. It was this little box shaped like a woman’s high heeled shoe, filled with mints. She thought it would be nice for his breath to be minty when kissing his girlfriend. Thus, she gave him Girlfriend mints.

When I think about my mom, I also think about her energy and passion. She was always doing something. Painting, drawing, teaching, grading papers.

Vacuuming at 6am.

How did she have the energy for all of this?!

I’ll tell you.

Gobs and gobs of coffee. Her coffee was terrible.

When I think of my mom, I think of coffee stains. Rings on her papers, on the table, stains on her clothes, all over the car, including the ceiling of the car and the roof of the car.

When I was younger, two things had yet to be invented: cup holders in cars and travel coffee mugs.

She would get into the car with a regular mug, or worse, a mason jar, full of hot coffee. Many times, she would drive off with the mug either still on the car or pouring down the windshield. Needing to use windshield wipers to clear off coffee is only necessary if you’re Kaye Michele Darling.

If she remembered to bring in her coffee, she would try to drive her manual car while holding a cup in her hands or between her legs or balancing on the center console…or on the dashboard. And so this is how coffee would end up in the vents, on the ceiling, in the back seat.

I have a lot of stories I could tell about my mom, as I’m sure you do as well. She certainly wasn’t boring.

What was she, though?

Funny. Smart. Beautiful. Talented. Challenging. Unique.

For days I had been thinking about one word that could sum her up. I thought maybe there was a Chinese character representing a phrase that might work, but I couldn’t find one.

And then it occurred to me.

My mother was endearing. She inspired love and affection. You couldn’t help but adore the woman, even when you were mad at her! And wasn’t that infuriating? There were so many times when I’d be mad at her and then she’d do something to make me laugh.

She was hard to stay mad at.

My mom just had wonderful energy. When she was near, you knew it. She made things better.

She decorated the world with her art and her smile and her laugh.

And frequently she laughed when it was inappropriate. Like at funerals.

CLICK HERE

I couldn’t find a video where I caught her snorting, unfortunately.

Mom was a klutz.

There was a story of her in New York on 5th avenue, I think. She tripped forward, her bulky sweater went over her head and only didn’t come off because it got stuck on her earrings.

She got hysterical just telling that story.

She laughed when she fell and she laughed when others fell as well.

Years ago, my poor grandmother rolled down her driveway and broke her collarbone. My mom, standing over grandma, was immobile with laughter.

But she wasn’t always irreverent. A lot of the time, yes, but not all the time.

Whatever my mom did, she did out of love.

She loved animals. She cared so much about animals that she once released caged chickens on OSU’s campus, and rescued a cat she thought was being abused but turned out to naturally have a snubbed tail because it was a Manx.

She loved her time at North High School and was ridiculously proud to be a Polar Bear. Many Polar Bears are here this morning, and many have reached out over the past few years. I’ve heard many stories about cheerleading and road trips and all kinds of adventures. Stories that keep my mother alive.

She loved Arizona, the time she spent there, and the man she spent her time with. He was her soulmate. I fully believe that her soul went straight to Arizona once it broke free. Arizona is where she really felt the most alive.

She loved me, her only biological kid, but she also loved her students, her other kids. She went above and beyond for them, as many of you here experienced. Many of her students have told me the impact my mother has had on their lives, and it just warms my heart. My mom spent hours creating projects and grading papers, but probably she spent more time with the kids in person at school but even outside of school, making sure they had what they needed to succeed. Helping get them scholarships, and portfolios, and even helping with their babies.

A rainbow is a meteorological phenomenon that is caused by reflection, refraction and dispersion of light in water droplets resulting in a spectrum of light appearing in the sky.

Kaye Michele Darling is reflected in us, in our memories of her, and refracts and disperses as we carry on her legacy.

My mom truly was like a rainbow. She loved the sun and the rain, and you couldn’t contain her. She was beautiful. She was a force of nature.

The Cassini project manager describes the Grande Finale in a way that makes me think of my mom.

After Cassini plunges into Saturn “the spacecraft’s final signal will be like an echo. It will radiate across the solar system for nearly an hour and a half after Cassini itself has gone. Even though we’ll know that, at Saturn, Cassini has already met its fate, its mission isn’t truly over for us on Earth as long as we’re still receiving its signal.”

Her signal, her legacy echoes through all of us.

~~~~~~

For those of you that attended, you know that I did not stick to the exact words. First of all, I did need to remove the words “many of you” at the last minute because there really weren’t many of you there. That’s what happens when you have a funeral on a Friday morning. Many of you were actually there for the wake the day before.

I also did a bit of ad lib. Some went well, some not so much. There’s only so much you can do with the genes you’ve been given.

My cousin’s wife, Heather, sang 3 verses of Amazing Grace. She kicked ass and almost broke the sound system. At the next funeral, just stand in the middle, away from the mic.

After we ended, folks filed out, we loaded mom’s casket into the car, and we made our way to Union Cemetery.

We had all wondered about the path the cop might take us on and were pleasantly surprised when we pretty much just went all the way from Worthington, through Clintonville, to East North Broadway, to the cemetery on Olentangy River Road. It was like a trip down memory lane. We went past many of the places she lived, ending with 3442 N. High, where she and I lived above my grandfather’s law office and grandma’s antique shop.

All of us pall bearers were very pleased that we got her out of the hearse and onto the spot without dropping her. That is, in fact, our one job. And we did it. Self high five.

At the grave site, since her headstone is next to those of my grandparents, I got to place my hand on my grandfather’s stone while the pastor read the final prayers. I recognized that not only did I get to sit next to the grave stone, but that also meant we were sitting on top of the grave site.

Nice. Sorry, Baba.

I tried not to laugh when, during Pslam 23, he got to the part “yea, though I walk through the valley of the shadow of death” because it makes me think of the part in Sister Act when Whoopie Goldberg’s character says grace in the convent. “Yea though we walk through the valley of no food”.

It was short and sweet, though. I placed a yellow rose on my mom’s headstone and a red rose on that of my grandmother’s.

I sobbed for the first time that day while kneeling at mom’s casket and then in front of my grandparents. I released her back to them.

And then we went to lunch because being nervous for a eulogy and sad for my mother’s funeral took more energy than I realized.

In all seriousness, I want to thank everyone who sent flowers and attended the wake and funeral. Polar bears, mom’s students, my friends, my students. Thank you, all.

Thank you, Victor, my brother from another mother, who stood in as pall bearer. Also, I can tell you that my mother LOVED the fact that you brought your new little baby.

I do hope to have a celebration of her life sometime in the next month or so. Unlike these last minute services, I’d like to have something people might be able to attend. I want to hear your stories of her. She was wonderful and amazing, but did really ridiculous shit. I want us all to remember all of that.

She didn’t live long enough, but what years she did have were filled with adventures and stories, love and laughter that will carry us on until someone has to eulogize us.

P.S. Do amazing and wonderful things with your life. It makes it so much easier for the person that has to write your eulogy.

 


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The Final Days


In some ways, I like to receive bad news in writing. It is a different burden to the messenger, but also allows the recipient to ingest the information in their own time, privately. And so it was with my aunt’s recent email.

As my mother’s medical power of attorney, my aunt gets the calls with updates on my mother, and then she passes it on to me. This last email came in with the familiar heading of “KMD Update”, but with much more content than usual.

Mom’s doctor and hospice have made the decisions that, to anyone past the point of denial, will see as a sign of final days. They are no longer giving her solid foods, but pureed, soft food. It’s easier to administer, easier for mom to deal with in her mouth, and easier for her body to tackle. Her body is tired. Her body is done with this shit.

Her body’s tolerance for the bullshit of dementia has finally caught up with her brain. Her body, like my brain, still held out for a little bit thinking, “Maybe she’ll rally. Maybe she can beat this!” But the brain finally stepped in, put a hand on it’s own shoulder and said, “Come now. Let’s stop this silliness.”

Not only is she on soft foods, but she’s been taken off the meds that no longer serve a purpose. She doesn’t need meds that ease depression and anxiety, or that stave off Alzheimer’s. We’re past that.

Mom’s doctor has written the orders that allow for her comfort.

A hospital bed with side-rails and slight movement to avoid bed sores.

Morphine to ease any pain.

Oxygen.

Hydration drops.

When I spoke with hospice a couple of months ago, when they told me we were counting in weeks and not months, I asked them to tell me when she was actively dying. I want to be by her side, holding her hand, like I did with grandma.

I have yet to get that call. But, I expect it soon. Although, I hope to just get a call one morning telling me she just didn’t wake up.

Since we’re now counting in days and no longer weeks, my brain has started preparing. Not for the emotional aspect. That’s not something I can really control. I’ve been “preparing” for these days for the past 7 years and I’m still sort of shocked that they’re actually happening.

No, I’m preparing for clearing out my schedule. That’s my grandfather in me. Practical. We’ve got something to do, so let’s do it. So, I’m thinking in my head how to cancel classes when needed, how to tell my students that I’ve had a “family emergency”, when most of them know the situation with my mother. How to tell my clients that I’m unavailable for a week or so.

And so it comes back to a feeling I desired years ago when I quit my job. I truly love the fact that I am not the center of the universe that my mom and grandma thought I was. I am replaceable, and that’s ok. I’m not a special snowflake. And I get great comfort in that because it means I can mourn my mother peacefully. No one truly needs my presence.

In the next few days, I will re-read the obituary I wrote back in June, just to make sure I captured the best things. As a writer and as the daughter of the subject matter, I want to make sure I have all of the elements that do my mother justice. Her life, her loves, and her humor.

For those of you that know Kaye Michele Darling, you know she was a talented artist, but that wasn’t all there was about her. She was smart. She was damaged. She was beautiful, inside and out.

And, my god, she was funny. She could make me laugh when I was SO mad at her, and that made me even madder! She would snort and snot and make a right fool of herself, but she didn’t care! And that’s probably the best thing I learned from her. Fuck the world. Be yourself. No one else can be you for you. If they don’t accept you for who you are, they aren’t worth it! As my grandfather would say, “Fuck ’em and feed ’em beans.” Whatever the hell that means.

I can’t put most of that in an obit in the Columbus Dispatch. But, I can say it to you guys. If you don’t know me or my mother, then this gives you a taste. I am a chip of the old block, and proud of it. The cable guy called me a hippie the other day as he was trying to sell me his service. I said, “Well, my mom’s a hippie, so that’s how I ended up this way.” For some reason, he was surprised. Not sure about that, but I still switched services. (They’re faster and cheaper. That’s only a good thing when it comes to internet. Rarely does that apply to anything else.)

In mom’s obit, I’ll have all the stuff about how amazing and loved she is/was.

In these final days, I need to be careful about verb tense. Her body is still here, her spirit is still trapped in it. But, my mother has been gone from me for a while now. So, truthfully, verb tenses have been a struggle for almost 10 years.

Mom’s obit will have all the stuff about her students, her family, those that went before and those of us left behind.

To her students: The things I won’t put in an obit, simply because I have to think of all the other folks that want some space on the page, are all the memories I know you have of her and that she had of you. She was like a mother to many of you. She encouraged many of you to go farther, reach higher, and never look back. Be an artist. Love your art. If you haven’t picked up the pencil or paint brush in a while because life happened, please pick it up again, for Darling.

To the Polar Bears: You meant more to her than many of the rest of us. You personally but also you as a time in life. If I could make a prediction, my mom’s version of heaven is being back at North. It was the beacon of light in her darkest days. The reminder that she used to know how to be truly happy, before manic-depression, before divorce, before life really kicked in. Thank you for being that for her.

To her one true love, her soul mate: I’m not sure what else to say, but she loved you above all. You were always on her mind.

To her family, my family: In truth, “family” doesn’t need to be a blood relationship. Her nurses are her family, my family. Her students, the Polar Bears, her teacher friends, all of us. This sucks. We’ll miss her like crazy. But, holy shit, think of all the memories! That woman was nothing if not a memory maker! (Interesting irony considering…).

She didn’t intend life to happen like this. But, soon, she’ll be released to do those things she intended to do.

Think of her fondly. If you love her like I love her, you know…she could piss you off like no one else could. But, damn, it was hard to stay mad.

I love you, mom.

 


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3 Years of blogging about dementia


I received an email today from Tumblr congratulating me on 3 years of this blog.

That kind of celebration is right up there with the memories Facebook shows me of times I spent with my mother 3+ years ago and pictures of our cat, Katie, who died in November. Believe me, Tumblr and Facebook, I don’t need your reminders of these things. I think of my mother and Katie every. single. day.

But, the reminder that it’s been 3 years since I started this blog gives me pause, and is rather timely.

Sunday, at the yoga retreat I hosted, we did a listening game. Everyone paired up. One person told a story about themselves while the other had to listen and make no kind of response whatsoever. No smiles, eyebrow lifts, nods, nothing. You learn interesting things about yourself, I think. I still find it hard to retain constant eye contact when talking. I think so much about the eye contact I forget what I’m talking about.

This time, when doing the exercise, I hadn’t planned on participating, so I didn’t have an idea in mind of what to tell. As I’m one to do, I just started talking; about my mother, about how I was conceived while my parents were married to other people, about her telling me she’s not sure who my father is, about her dementia. You know; a good uplifting, funny story.

After we were done with the exercise, the woman I was paired with said I should write a book. When I told her I was, in fact, writing a book, she lifted her eyebrows (because she was finally allowed to do so) and asked about it. In describing my book I had to start with explaining the 90 day blog challenge.

3 years ago I started this blog.

3 years ago my mother could look at me and say my name. 3 years ago, we were still able to take her on walks and out to lunch. 3 years ago, I held on to the feeling that my mom was still in there, somewhere.

3 years ago seems like a lifetime ago.

As it turns out, the woman I was paired with for the listening exercise is a hospice social worker for a local hospital. As we talked further, I shared more. I dared so say out loud what I barely say to myself. Since my mother started receiving care from hospice, I’ve visited less and less. It makes me feel like a complete asshole to say it, although, the truth is, not visiting my mother is secretly refreshing to me.

There. I’ve now said it to you. I’m fully aware that “you” are her friends, my friends, my family, and strangers in similar situations.

Many people tell me to cherish these days while I have them and my mother while I have her. I hear you. I do. But, with all due respect, you aren’t in my shoes. (If you are in my shoes, I’m sorry they’re soggy from walking in the dewy morning grass.)

How about we agree that I cherish my mother as a being, but the days themselves be damned? The past several months, when I’ve visited, she’s been sitting in her own diarrhea or sleeping. She doesn’t know who I am and she looks at me with no recognition. As much as I can say ‘it’s ok’… it’s not. I thought it was hard when she forgot my birthday. Not just forgot to call, but forgot that the date entirely. But now, her daughter no longer exists to her.

I know the neuro-science on this and the emotional memory and all of that. The sound of my voice, the way I make her feel emotionally, all of that matters and is embedded in there somewhere.

That’s nice for neuro-science.

I know it sounds like I’m bitter, but I’m really not. If you had to put a word on it, I’m tired. And, so, it has been such a relief for the hospice workers to say things to me that make me feel human.

“Yes, Burg, this sucks.”

“No, she’s not going to get better.”

“This has been going on a long time and you are ready for it to be…done.”

Yes. That’s the ugly truth. That is how I feel. Troll me all you like. It’s tiring to live through all these ups and downs of acceptance and self-loathing regarding how I should be with my mother’s dementia. I plan to visit, and then, don’t really want to. I do go visit, and then frequently wish I hadn’t. When I do visit, I find I’m doing it more for the nurses so they don’t think I’m a bad daughter. Or, worse, I visit just to say that I did, like a checklist item. Not because I wanted to.

Although this blog has been running for 3 years, my mother’s dementia has been going on for much longer. I think we’re around the 7 year mark of an official diagnosis. I don’t know how long it’s actually been knocking around in her. I feel like it’s been at least a decade or more.

I love my mother. I’m not saying that to convince you. What I am saying is that I love her and therefore want her suffering to end. When I meditate, I hope for the end of her suffering and it’s causes. That’s the way it’s phrased in Buddhism.

When I meditate, when I think of my mother, I think about her without dementia. I think about her as she was, as she used to be. I think about how she might be right now, almost 70, without dementia, and how we might spend days together. It’s not a form of torture, as much as it might seem like it.

In my mother’s situation, I know she won’t graduate from hospice. She’s not getting better. The cure, if it comes out tomorrow, is too late. In my mother’s case, yes, I visualize her as healthy and free as a way to help guide her soul, her essence, to peace. It’s the idea that if you can see it you can believe it. If I can see myself as doing something, then I’m more likely to achieve it. I’ve believed that since I was a little girl. I’ve ended relationships because I couldn’t visualize us doing certain things like getting married or even going to a coffee shop together.

As a way to end this blog piece, I simply want to thank the hospice folks I’ve talked to. Thank you for not sugar coating this whole thing. Thank you for helping my mom retain some shred of dignity in her final weeks, days, hours.

Thank you for reminding me it’s ok to be human.

Those are the kinds of reminders I really need.

 

Burg and Kaye Mother's Day 2017


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Surcraptical


Leading up to Mother’s Day this year, my heart and mind have been more at peace. That’s a rather calm way to start this post. I know this will likely be the last Mother’s Day I spend with my mom, and that’s really hard to say and admit, but I have finally accepted what life has handed us. That doesn’t mean I have to LIKE it, but I have stopped fighting with it.

Many times, since grade school, I’ve compared the feeling I have in life to that of a salmon spawning upstream. It takes a lot of energy and I’m really going against the current. Life seems easier for others.

I could honestly write a book about how much effort I put into my teen angst, my desire to fit in and yet be different and unique, my desire to have a more magical life while at the same time wanting a “normal” mother. That was all wasted energy.

I can’t change the direction of the river. I can’t change the way the earth spins. And I can’t change the direction my mom’s disease is taking her.

In the I-Ching, the guide for Taoists, Lao Tzu discusses being like water and following the “watercourse-way”.

Under all circumstances one should behave like the water, one should adjust to the requirements of the outer world, keeping safe his/her unchangeable essence in the meantime (here “essence” points to his/her inner self, or true nature).

Read more about this here.

Being a student of yoga, Buddhism, and now Taoism, I reach back with both arms to the sages from thousands of years ago. Teach me your wisdom! Teach me the things that are obvious yet clouded to me because of the chaos of our time. Show me how the challenging shit of my days right now can be understood by metaphor, simile, and analogy. Humble me by breaking down all my seemingly important self-inflicted life-complexity into a story about a man sitting next to a river trying to balance a grain of rice on his nose, or something like that.

I wonder if those ancient Asians knew all the way back then that their simple stories would help an American girl in 2017 with her mother’s dementia? Part of me thinks they knew.

Even if they didn’t know, the truth is that the more simple you can make something the more timeless it becomes. I don’t need those guys to know how to use the apps on my cell phone, I just need them to tell me about how distracting and complicated life can be but that there are ways to put it all into perspective.

On Mother’s Day morning, I  knew I needed to take a long bike ride to gain perspective for the day. So, I planned on doing whatever mileage I could in 2 hours. Being a lovely morning and having started later than I would have for a run , I knew there would be people on the trail. It turns out there were LOTS of people on the trail.

My bike ride became a practice in mindfulness and being like water along the Watercourse-way (or the Olentangy trail, but whatever). Really it was like Frogger. “On your left”, peddle like crazy, brake to wait for the other bicyclist to pass, “On your left”, rinse and repeat. My goal wasn’t to ride fast, it was to ride strong and stay mindful of my pace and my surroundings. Only once did my mind wander and I nearly ran into the back of a dude. I snapped back to the present and he was none the wiser.

While on my ride, I realized I had never seen my mother ride a bike. I can’t even say with any certainty that she knew how to ride a bike, although I’m sure she did. I learned how to ride a bike while at my dad’s house, but then really learned to love it because of my grandfather, my mom’s dad, who rode his bike every day.

Come to think of it, I’m not sure my mom did anything athletic in her adult years. She and my grandmother would take walks regularly, and mom did really try to get grandma moving on those walks, but that’s about it. Mom didn’t swim, run, bike, play frisbee…she was no good at hitting a golf ball, probably couldn’t swing a bat, I never saw her kick a ball…So, of course  my mind thinks about what could have been had she been more physically active. Much of the Alzheimer’s research indicates exercise as an important thing to have in your life in order to keep your brain healthy.

Funny, for all the herbs and supplements she took and books my mom read about brain health, she never obsessed about physical activity. If only.

But, here we are now.

A couple of weeks ago, we had a meeting with the head nurse at my mom’s place to discuss getting hospice assistance. She’d have a nurse visit her, a pastor, a volunteer, and a few other types of folks. We agreed to bring in the Ohio Living hospice folks because they came so highly recommended. The following week, I met with our new hospice nurse to talk about details and sign stuff.

Let me tell you this right now: Talking to the hospice nurse has been the best thing for my heart. After talking about little things she asked, “How are you doing with this?” And she wasn’t just being polite. She didn’t want to hear me say, “Oh, fine, bullshit bullshit bullshit words.” She wanted the real answer. So, I told her.

“This sucks. I feel like a terrible daughter. I don’t visit enough but I, emotionally, can’t handle more than I do. I don’t know what to do when I visit since we can’t really have a conversation and I can’t take her anywhere. I’m not used to all this, really, because I’ve never had kids and we didn’t really spend a lot of time together in the past decade.”

She responded the best way.

“Yes. This does suck. You are a good daughter. This is not easy. And that’s why we’re here. We’re here for her quality of life as well as yours.”

She did not say, “It’s going to be ok.” And that was the best thing to omit. It’s not what I needed.

In the Hospice Handbook she gave me (yes, there’s a friggin’ handbook for this), she wrote down the names of the people who are on our “team”, one being a non-denominational pastor.

Now, my mom has been married 5 times. It was only the compassion of my grandparents’ priest that allowed my mom to attend mass and take communion and not be struck down by lightning. My mom was about as Catholic as my right foot, but she enjoyed the rites and rituals. They meant something. So, it took all of my everything to tell the nurse through the lump in my throat and my tears that I’d like her to get the rite of the Anointing of the Sick. It’s the new version of last rites, apparently.

We then talked about more realistic stuff. She could see I didn’t want sugar and sweetness. I needed the reality.

“Are her funeral arrangements taken care of?” I think so? Turns, out, they are. And, her gravestone is already on her grave site next to my grandparents. It’s just waiting for the final date.

And that’s the real question, isn’t it? When.

Last year, in August, my mom’s doctor said we’re looking at “months to year”.

Now, my mother has lost 10 pounds due to eating less. She has less energy because of it. Her body is winding down. This is why we have hospice for her.

So, in this meeting with hospice, without even being prompted, the nurse told me we’re now counting in weeks.

Weeks.

And although hospice is something patients can “graduate” from or be “kicked out of” for doing better, the nurse said my mom won’t.

Thank you. From the bottom of my heart. Thank you. I need the truth. I need this honesty. I need to push away those fantasies of some miraculous recovery or new-fangled cure. It’s too late for either of those things, anyway. Her body and brain are done. They’re wrapping this up and just waiting for the final cue.

So, this is why I’m at peace. And it’s a twisted kind of peace, to me. To think about someone’s funeral arrangements and DNR (do no resuscitate) and obituary while they’re still alive is….I don’t have a good word for it. If you could merge surreal and crappy and practical that might come close. Surcraptical. That might be it. Could also be a Knight, Sir Craptical.

I haven’t started writing her obit because I’m just not in the right mind-set. I have told hospice that I want to be notified when she is actively dying. Again, surcraptical. We’re all dying every day. To be born is to set your death in motion. And we don’t know when our last moment will be. But, for my mom, there is a schedule, and she seems to be following it. As odd as that is since she was late to nearly everything in her life. But, when she’s going through the final moments, I’m going to be there with her. Holding her hand, like I did with my grandmother.

When I get the call from hospice, all of my projects will have to go on without me and the yoga studio will be without classes. That’s the surcrapticality of it.

In the meantime, every day is Mother’s Day whether I’m with her or thinking of her. She made me the person I am today. I’m smart and strong and resilient and strange and unique and I owe much of that to this woman.

I had typed “lady” at first and then retracted that. Neither of us are ladies. In the picture below, my dress is askew and rather undignified (although I did make it myself so that counts for something) and my mother’s face is covered in mustard from lunch. I was relieved to find out it was mustard when I sniffed her face (which is not the first time in my life I’ve done that) because these days you just can’t be sure.

Burg and Kaye Mother's Day 2017

Happy Surcraptical Mustard Day, mom. I love you.


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On my birthday


Something about my mom enters my mind daily. How she used to keep the house so clean but how I can’t seem to find the kind of daily rhythm she had to take care of things in my own house. How she used to constantly be doing something productive and I feel like a lazy bum compared to her. How her doodles on the place-mat at a restaurant were things I’d consider framing if they came from my broken pencil at the bottom of my purse.

And how she used to make my birthday the best day of the year.

Everyone close to me knows (or should know!!!) that my birthday is my favorite day. If it weren’t for President’s Day being so damned close, that Nobel Peace prize I plan to win would have surely gotten us a bank holiday every February 24th. I’ll never stop trying.

Last year, for my 40th, I visited my mom on my birthday. And I’m glad I did. It was bitter sweet, of course, but she was still able to say the right things to seem surprised about my being so old. This year, I visited her on the 20th, Monday (President’s Day, ironically). That was a tough day all around, and I probably should have saved my visit for another day, but when I get something in my mind…

Earlier that morning, while sending out my Monday email to the students of my yoga studio, our newest little cat, Sera, had a seizure on my lap. Let me first tell you how little she is. She’s 9 months old, which is technically an adult because she has her adult teeth, but due to malnutrition and a tough earlier life, she’s stunted both physically and mentally. At 5 pounds, she’s half the size she should be at this age. She’s so little we say it “leeeeetle”. She’s a leetle gurl. And this leetle tiny cat had a grand maul seizure while balled up on my left leg. It. Was. Horrific. For both of us. I’m told she’s unaware when it’s happening which is why she looked so confused about things when it had subsided.

So, that started my day.

There were other relatively uneventful things to fill the middle of my day, and then I went to see my mom after her lunch time. I had intended to visit after breakfast, but Little Seizure happened so I needed to pace myself.

Mom was sitting at a dining table on her floor when I walked through the locked doors. She noticed the nurse that walked through the doors before me and looked at me as well. The recognition isn’t there. But, neither is there any fear or repulsion. She’s perfectly content to have me sit next to her at the table, but she doesn’t go out of her way to look at me or talk to me. I try to talk to her and get her to at least look my way, but she’s doing that social thing of pointedly looking away as a polite way of keeping me out of her conversation. She was saying things to the gal next to her who has been steeped in dementia for just as long as my mom. To say it was a conversation is being nice, but I don’t want to be an asshole and say she was just babbling to this lady. But, mom was specifically NOT babbling to me. When I’d say something she’d turn her head towards me a little but with her eyelids lowered. Rather like my grandmother used to do when she was pissed but wouldn’t say it.

Maybe my mom was mad because I hadn’t been to see her in a few weeks. Maybe it took a while for her to warm up to me. I don’t know. But, when I rubbed her arm to get her attention, it didn’t work. She didn’t move her arm, but she didn’t look my way, either. She just kept saying stuff towards Esther. (I have no idea if that’s really her name).

I kept trying, though. Like always, I hope for something. Anything. I told her about things going on and the weather. In her defense, all really boring shit that you’d have to be really polite to know how to respond to. But, then I told her Friday was my birthday. Not only did she not respond but she just looked at me with the most not giving a shit eyes.

I kept telling her about our plans. We’re going to Yellow Springs. I’m visiting a psychic who’s doing my birth chart and will tell me about my past lives. Aaron will do his own thing while I’m in the session and then we’ll walk around a little bit.

Nothin’.

“Do you want to walk a little bit, mom?”

“Sure.” She says.

“OK, let me get you up.” I push out her chair as best as I could considering another lady had just come up and bumpercar’d her walker right against my mom’s chair, for some reason. She looked at me with big eyes and said, “Oop!” as if we were all going really fast and she just couldn’t control that crazy thing.

I pulled my mom out of her chair and noticed her wet pants. All the way up her back. And the smell. Oh. Dear. God.

We walked to the closest nurse so I could let her know she was wet. Every time this happens, I feel like a shitty parent who passes the baby off to the parent who does the diaper better. In my defense, I’m literally not trained for this and I have no clue where my mom’s clothes are, these days. So, I have no choice but to pitifully walk up to a nurse and say, “She’s soaked” while pointing at my mom’s crotch.

The nurse looked at me with wide eyes. She’s relatively new or doesn’t really know me well, so she looked ashamed or horrified or something. She said, “Oh my god, she was dry an hour and 20 minutes ago when I checked her!”

“Look”, I wanted to say, “I know there are some awful assisted living homes out there, but this isn’t one of them. I’m an asshole daughter and you’re a good nurse. Believe me, I’m not criticizing your care of my mom. She’s clothed and fed and her hair has obviously been brushed and pulled into a cute pony-tail. I’m a piece of shit that doesn’t know how to change my mother and is, honestly, afraid of the whole process because it would likely end badly for all involved.”

That’s what I wanted to say.

What I did say was, “No, no! I’m sure. It’s no big deal. I see you’re with another resident. So, she and I will walk around a bit until you’re ready for her?” I did NOT want to actually say the words, “Will you change my mother’s diaper and clothes for me?” It’s wrong on so many levels for me. I don’t like talking about her while she attached to my arm. She’s a woman who deserves respect and dignity and yet is standing there, holding a ball of yarn and an old Valentine’s card, with shit all the way up her back. I’m doing what I can, here.

We made the agreement that the nurse would find us when she was done with her current project, so we walked the halls. My mom was completely oblivious to the current state of her crotchal area. And that’s a good thing. I, on the other hand, was searching the space around us for pockets of fresh air. Thankfully, the nurse didn’t take too long.

Mom and I walked towards the nurse. The nurse said to my mom, “We’ll just go into the big bathroom, ok?” I wasn’t sure if she was expecting me to go with her so I did the silent pass off and then just left my self available near the room in the event she felt I needed to be present. I mean, I’m really just a tourist, here, and I don’t actually want to take part but I feel like I should want to help just to not be an asshole.

I sat this one out.

After a few minutes, they came out of the big bathroom. I’m assuming a wash down was involved because it would have been a waste of wipes otherwise. Mom had on a different shirt and pants, and looked adorable. Her face was brighter, too. I’m sure there was some kind of fight to get her cleaned up, but the joy of Alzheimer’s is that you have no short term memory! Yay! We’re all friends 5 minutes later!

She still had her ball of yarn and Valentine’s card. I thanked the nurse the best I could since I didn’t bring the millions of dollars with me that they really deserve for taking care of her and all these people. Mom took my arm, and we kept walking.

We went to one end of the hall and said “Hi” to George as he came out of his room. He was wearing a Star Wars shirt, so I said, “Hi, George! Nice shirt. I love Star Wars, too.” He said, thank you. Nice guy. My mom’s age or less. Dementia. Schizophrenia. You know, the fun combo.

George asked what we were doing, so I told him just walking around. Before we passed him to get to the other end of the hall, he asked that we keep an eye out for some music he could use for a funeral. I told him I’d let him know if I found any. And we kept moving on.

We got to the other end and spent some time looking out the window. That side has the dog park, so we watched people walking to and from the park with their dogs. Mom loves dogs, so it was like a parade or going to the zoo. There was one adorable LabraDoodle (I’m guessing) puppy who was gangly and not in full control of his own legs. I pointed him out, mom looked and said, with her face right next to my right ear, “Oh, shit!” Yeah. That’s how cute the dog was.

As we stood there watching the dogs and the beautiful day, I thought about another resident who had been taken off the floor a while ago because he was too sick to be there. I don’t know if he’s passed, but I am going to find out. Mom has been here so long that I’m getting attached to the other residents, who were all much older than her when we started. The newer residents just coming on board are closer to my mom’s age, now.

I can’t even imaging how these nurses do it every day. They help these people, our family members, every day while I’m able to do the things I do and bitch because I don’t know if I should run in the morning or in the afternoon. There’s nothing keeping me from running. Nothing like a mother with dementia. No. She’s being taken care of by these wonderful nurses.

So, I got a little wistful thinking about the folks I had really liked to talk to on her floor that were no longer here. Time passes, and so do we.

And then George came up and asked, “Did you find the people you were looking for?” He looked at me. “Yep!” I told him. “We found what we were looking for.” He nodded. “Ok, so you’re good? You’re all set?” I smiled at him. “Yep. Thanks, George. We’re all set.”

mom-feb-20-2017

Mom and I watched the dogs for a little longer, and then I decided to end on a high note. I told mom I was going to take off, so I turned and we walked back to her room. She knows her room and feels comfortable there, although there’s nothing for her to do in it.

I told her again that I was going to head out, but got no response.

I said, “Mom, I’m leaving.”

She turned to me. Looked at me with her dark brown Hershey Kiss eyes and said, “You’re leaving?” Her eyebrows. Her lower lip. She’s little and cute. “Well,” I said pathetically with my arms hanging at my sides, “I was going to.” Palms up to the sky. I suck. Jesus. Of all the moments for her to actually respond. So, I stayed for a little bit longer while she walked around and played with the chair and the t.v. She wiped things down with her hand to dust it off.

I noted that even back in her good days she would just brush dust off things with a bare hand, something I’ve never done. Why must I have things just so before I can do them? I must have the dust cloth and all the things necessary before I can do any cleaning. I can’t just take any old thing, even an old t-shirt! My mom would clean with anything. Why am I so damned uptight about these things?

I don’t know. That is a mystery. But, it’s also an excuse. Just clean stuff, Burg. You’ll never be wealthy enough to have the house staff you really want.

I finally did leave. I needed to. So, I forced a hug out of her because it’s the right thing to do and completely against either of our natures.

It was all I could do to make it to the car without crying. The cat’s seizure, my mom, the lack of recognition for me and my birthday, the loss of the old man I really liked, George and his Star Wars shirt, it was too much emotion for me. I tried to keep my shit together on the drive home, but did make it safely.

Needless to say, I had some wine with dinner that night.

Today, however, it is my birthday. To save myself some heartache, I’m not going to visit my mother. The heartache if not seeing her is much easier to handle than the alternative.

As I mentioned earlier, Aaron and I are going to a little town called Yellow Springs that I’ve never been to before. Had I known it was the mecca of artsy hippie folks earlier I would have already been. I had no idea. I’m ashamed.

A psychic has put together my birth chart and will go over it as well as my past lives today. I’m excited for this. Aaron did order the Star Wars themed birthday cake I had asked for, and we’re picking it up tonight on our way to family dinner. We can only stay until 8:30 or so because we have to be back to give our leetle gurl, Sera, her anti-convulsant meds.

And so it goes! Life; with all it’s crazy, crazy shit, with it’s ups and downs, bumps and straight-aways, it was given to me by my leetle mothur.

Thanks for my birthday, mom. I love you.


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Amazing, but not surprising


My mom continues to amaze me, but these days my amazement is rather bitter sweet.

About a year ago, my mom’s floor gained a new resident; a woman around my mother’s age and suffering from the same aphasia. Her decline, based on what I witnessed, was quick. She came to mom’s floor being able to have fairly reasonable conversations, however she mostly just giggled and laughed a lot. She and mom were on-again, off-again friends. I would imagine it’s hard to be friends with someone who keeps coming into your room and taking your stuff. My mom still takes other people’s stuff based on all the weird and random things I see around her room and on her person.

Eventually, Penelope, we’ll call her, started to change physically. She gained weight, probably from lack of exercise, but mostly in her face. I suppose we all hold our extra weight in different ways. I remember she was given a rather awful hair cut by a lady in the beauty shop, and was quite depressed while she waited for her hair to grow back. Over the months, she grew quieter, although still maintaining a pleasant smile. Unlike my mother, Penelope became so frustrated by her loss of words that she just didn’t really talk anymore. She withdrew into herself more. She still sat with the others and was the kind of social I am. If I’m around people, that’s social. I don’t need to actually talk to them to be social. That’s what I tell myself, anyway.

There is an alarming rate of resident change on my mother’s floor, which I suppose is to be expected. You can come to this floor a number of ways; from home, from another institution, or from another floor of the same place, moving from independent living to not-so-much-anymore. The reasons you leave this floor are a shorter list. You move to the hospice care section because you are too sick to stay there, or you die there. Penelope, on December 3rd of 2016, died there. I haven’t yet gotten the courage to ask the details, but I will ask the nurses. I’m not looking to invade Penelope’s private life or disrespect her. No, I have far more selfish reasons. I want to know if there are things about her passing that can help me prepare for my own mother’s passing.

Penelope’s death was more of a shock to me than I realized. She was relatively young, she seemed physically healthy, and she seemed good spirited when I would visit my mom. I always tried to say hi to her, and the others, when I visited. She was polite and said something back, but she didn’t know me.

But, in her, I saw a part of my mother. So, for her to go from seemingly lively to gone was not as gradual as I had expected. And it puts me in a different frame for my mother’s situation.

My assumption has been that mom would decline in obvious ways and with some warning. In my grandma’s case, we got a call from her nurses saying she was on her last few hours or days. Less than 3 days later, she was gone. She was not conscious but was on a ventilator. I suppose that is what kept her “alive” so long. I held her hand the whole time and talked to her. That’s the way you do it. You let your grandma know that she’s raised us well, we’ll take care of eachother, and she can leave to be with grandpa. The hospice nurse told me what to expect, and it happened the way she said it would. Grandma’s breathing slowed to almost imperceptible. Her skin grew mottled and her hand grew cold. Her last breath exited her body 1 minute before my mother came into the room. And then grandma was gone.

Not to be glib, but that’s what should happen. Although my mother’s eventual death won’t be a surprise, will be far from sudden, and will, truthfully, be a kind of blessing, it likely won’t be like grandma’s. I probably won’t get the call saying “anytime now”. No. I’m bracing myself for the call saying “it’s over”.

But, here’s the thing. This is why my mother continues to amaze me. Let the record show that there is a difference between surprise and amaze. My mother doesn’t surprise me. The fact that she is a stubborn and tough woman who keeps tromping through her aphasia/dementia longer than the doctors have projected and longer than the other residents on her floor doesn’t surprise me. It does amaze me. One day she’s a little down in spirits and I brace myself for “the call”. The next time I visit, she’s smiling and petting the cat, Pumpkin, and actively watching the show on t.v. about artists that create images of outer space. She was talking, and sometimes understandable. She had just woken up from a nap, but still aware and bright.

We had a good visit, we walked her to the dining room for lunch, and spent 5 minutes trying to get her to sit down. The nurses saw us putting her at a spot with a napkin and utensils and said, “We don’t let her have a napkin”, so I put it on another table. Napkins are “tasty” and have “too much fiber”. My mom eats them.

I’m not sure that my mom recognizes me anymore, and she sort of looks at me with eyes that are really trying hard to figure it out. There must be just something about me, my voice, my look, my energy, my smell, that is familiar. She doesn’t push me away, but she doesn’t always reciprocate hugs or words of affection. To be fair, we never did that shit before now, so I’m not really offended. Before my mom came to this place, I could probably count how many times we hugged in my entire life. We didn’t really say I love you out loud. Only in birthday cards.

When I went to hug her to say goodbye, it was one sided. And I’m ok with that. Grandma would be happy that I’m at least trying to hug. Oh boy did she get on all of us for not hugging.

So, maybe I’ll get around to asking the nurses about Penelope’s passing, or maybe I’ll just let it all happen as it will. I mean, it’s not like I can really prepare for it, anyway.


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Everything Happens for a Reason


When I say, “Everything happens for a reason”, what is your first response?

I first ran into this saying during or after college when I read ‘The Celestine Prophecy”. That book, for me, was inspiring and life changing, and, to be honest, I should probably re-read it because I don’t remember many of the details. What I do remember is having my mind blown at the implications of how deeply we are all connected even though we may not realize it. For me, at that time, “Everything happens for a reason” was deep, mysterious, and helped make connections in things that I hadn’t considered before then.

Over the years when I have said that phrase, I’ve been met with responses indicating the other person felt I was saying we have no control of our own destiny as if everything was already written. People have responded in ways that implied they had felt a more religious twist to it, as if to say that the “reason” was more of  a capital R “Reason”. Everything happens because God did it. Which, I suppose, goes along with folks who feel the saying implies that we have no free will and that our lives are already pre-determined by some outside force.

I will admit, this phrase has meant different things to me over the years. At a certain stage of my life, it reminded me of a particular boyfriend who said it a lot as a way to be mysterious and almost aloof. Almost saying, “I’m not the one driving all of this. I can’t help if our relationship isn’t what you want it to be.” It was out of his hands. It was in the hands of the universe.

The Universe. I think that’s the part of the implication of this phrase that needs to be really thought about, because I think it depends on your feelings of The Universe. “The Universe aligned and pointed me in this direction”. “The Universe brought us together.” “The Universe is vast is awesome. I am a part of it. It is a part of me.”

These days, when I think of this phrase, I think of The Universe as the prime mover. And The Universe, to me, is a mixture of spiritual and scientific. It is a thing that is hard to wrap your head around while being full of wonderful science all at the same time. Some days, when I think that everything happens for a reason, I think about the physics of that statement. What goes up must come down. For every action, there is an equal and opposite reaction. Karma. Cause and effect.

It was because of this phrase that I found Buddhism after college. It was different. It wasn’t Catholicism, it wasn’t Judaism, and it lined up with some of the hippy dippy stuff my mom was into. Kundalini yoga. Transcendental meditation. Health food stores. Birkenstocks.

This phrase, and all the meaning I put behind it, truly gives me peace of mind. Peace of heart. Particularly when it comes to the “situation” with my mother.

The past few weeks have been more emotional for me than usual, and it’s primarily because my mother now has a new doctor. Due to eating the lamp shades (that I wrote about in my last post), everyone felt we needed to re-evaluate her situation. Not only was she eating things she shouldn’t, she was doing things that could potentially kill her. I was concerned that maybe she wasn’t in the right facility. I didn’t want her drugged out of her mind, but I also didn’t want her to be strapped to her bed. My uncle and aunt reached out to the nursing staff to see what their thoughts were.

The short version is this, even though it’s not as short as it really could be…you may know by now that I don’t really understand what it means to give the “short version” of the story.

My mom now no longer goes to her PCP and neurologist that are outside of her living facility. The travel was upsetting and unnecessary. She is now the patient of Dr. Kantor, who visits patients where they are. AND his specialty is primary progressive aphasia. Huzzah!

He went to see her two and some weeks ago and then we set up a family meeting with him a few days after that. I’ll tell you right now that he’s a breath of fresh air because he’s direct, he doesn’t beat around the bush, and yet, he’s not brutal when he gives the facts.

When he first walked into the room to start our meeting, he asked me who I was. I said I was the daughter and he was just flabbergasted at how much I look like my mother! He commented the smile and so forth. And even at the end of our meeting he still was just amazed at how alike we looked. We told him he should see a picture of the 3 generations of us. I mention this point not to flatter myself or to even prove that he clearly is a genius, but more to emphasize his attention to detail.

When we sat down, he immediately started asking me questions about my mother’s life in order to get a better picture of who she was and how that translates into who she is. We talked about her marriages, her level of education, and her other diagnoses. He asked when we started noticing signs of dementia.

“That’s a very good question”, I said, and proceeded to explain about her quirky artistic personality traits. Here’s the equation that answers the question:

(A)rtist=eccentric, sees the world differently

(B)i-polar= thinks differently and reacts differently

(D)enial about being and artist and bi-polar= not properly medicated and trying to act “normal”

A+B+D= I have no idea when she started showing signs of dementia. Could have been 5 years ago, could have been 20 years ago.

I did tell him about her electroshock therapy 40 years ago, her champagne bottle on the head on New Year’s 1984/5, and other forms of head trauma.

I painted the picture of an amazing, highly educated, talented, and mentally damaged woman.

After talking about medication changes to keep her from being agitated, adjusting meds for bowel issues, and comforting us that she was in the right place, he asked if we had any questions.

At that moment, I couldn’t think of any because he had just filled me with joy at being able to tell him all the wonderful things about my mother and making it known that this aphasia was more than likely due to the trauma.

My aunt, however, being the most pragmatic of the group at that moment, asked if we had a timeline.

He was very candid. He said what we could expect would be for her to eventually forget how to eat, or not want to eat. Specifically she may forget how to swallow. That would be a sign of nearing the end. Right now, she’s not able to do anything for herself to take care of herself. She can walk around. She can feed herself if you give her the utensils. But bathing and bathroom and all those things are not in her wheelhouse anymore.

And so, he stated, “We’re looking at months to year.”

Fuck.

I tried to stay focused on what he was saying next, but I really missed some of what he said. Aaron snuck his hand over to mine and just reached a finger towards my hand. That’s all the comforting I could stand. If he had touched me, I would have fallen apart. For my lack of response to his attempt at comfort, I apologized later telling him, “I just couldn’t.” He understood.

After some other words from Dr. Kantor, he asked again if we had questions. My only thing was that I wanted to make sure my mother wasn’t a huge burden for the wonderful nursing staff and others. Is she more complicated that other residents?

He said, “She is different. Yes. She requires more assistance.” To his first statement, my uncle and I smiled. I said for the two of us, “She’s always been different. She’s the black sheep. Why change her style now?!” Somehow, knowing that she was still being wild and different on her way out gave strength and power to the whole miserable affair.

Dr. Kantor followed up by saying he appreciated that we were concerned about the affect on the nurses, but that was their job.

Yeah, I know, but still. She’s a handful.

He said to me, “But everyone cares about your mother. She’s our mom, too. She’s family.”

As I said, the man is a genius.

I left feeling like mashed potatoes. I wasn’t sure what emotions I was feeling. All of them and none of them, all at the same time. Glad to know that she wouldn’t suffer like this for 20 more years, sad because we’re talking about my mom not being around in a year or so. Glad she has such a great facility to be in, but pissed that she even had to be here.

I spent two days pretty much just crying. The sky and beautiful clouds rolling by made me think of my mom and made me cry. Knowing the apartment across the street used to be hers, and she would just walk over to talk made me sob uncontrollably. Aaron just sat next to me on the porch with his arm around me. No words could make any difference anymore.

Or so I thought.

Last Sunday, we went to visit my mom. As usual, she was asleep in a recliner watching a movie. It was “Mrs. Skeffington”. I’m not a Bette Davis fan, but I could feign it in order to hang with my mom for a few minutes.

She woke up when we came up to her. After about 10 minutes of “talking” to her and asking about her day, she nodded back to sleep. We walked over to talk to the nurses. I think we talked to them for about 20mintues. We wrapped up the conversation and indicated we were going to head to our movie.

Before leaving, I wanted to say goodbye to my mom. Even though things are different, I still think of this place as her home and so I would never think of leaving her home without saying goodbye.

I walked up to her chair. She looked up and smiled as if we hadn’t just seen each other just 20 minutes ago.

“I’m heading out, mom.” I said to her.

“I love you.” She said to me.

“I love you, too, mom” stooping down to hug her.

“Take care of yourself” she said.

“I will. You too, mom”.

She smiled big and I walked off.

…..pause for effect…….

I don’t think I need to tell you how amazing it is to hear all of those words in that order, so appropriately, from my mother who can’t form proper thoughts and words anymore.

I will remember that moment with my mother for the rest of my life, not only because it is always nice to hear all of that from your mother, but because just days earlier I had been told there may only be months left. They mean so much more to me now.

You see. Everything does happen for a reason.

 

 


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If you’re going to eat one, you might as well eat two.


I don’t know if there’s anything that could possibly prepare one for the new and interesting things that occur when a parent has dementia. And maybe my experiences are different because this is primary progressive aphasia, I honestly don’t know.

When I first started this blog, my mom could still communicate to a certain extent. And, to be fair, she still can, but to a much lesser extent. Prior to my mom’s first steep decline into dementia, when she was still relatively independent, I described communication with her like being in Alice in Wonderland. Pass out the cake and then cut it into pieces. Talking with my mom made me feel crazy. I could only spend a short time with her and then I would need to leave and decompress. It was very challenging talking to her, even when she was legally of sound mind.

These days, communication with my mother isn’t even something to talk about. It takes a lot more than inference and context to even grasp what she might be saying. I don’t know if she feels any frustration, but I’m really, actually, past even bothering with frustration. She’s safe, she gets what she needs, and so we just kind of have conversations like my cats and I do. They tell me things they think I should understand and I respond based on what I’m (probably incorrectly) interpreting. Really it’s just exchanging vocal noises and facial expressions. She’s seems happy, I’m reasonably happy. We move on. Thankfully we haven’t gotten to the point of my mom peeing on my clothes because I won’t clean the litter box. However, who knows what would happen if we actually lived together.

Communication challenges aside, though, life with my mom is still like Alice in Wonderland, but for entirely different reasons, now.

This past weekend I told Aaron that I wanted to go see my mom on Sunday. It had been a few weeks what with holidays and major public events happening in her neighborhood that made visiting obnoxious, so I thought I should at least pop in and say “Hi”.

On Sunday, around 10:30 in the morning, well after breakfast, we stopped in. We opened the door to her floor, we waived hello to everyone, and nurse Maria told us my mom was sleeping in a recliner. We made our way over there. She was out cold sitting up in the Lazy Boy holding a naked baby doll in her lap. Her bare feet stuck out past the foot rest, so I was able to quickly see that her sprained ankle from a few weeks ago seemed to have healed. It was no longer swollen and bruised, and the foot looked good. And, she no longer had a mysterious black eye (probably caused by falling and spraining her ankle).

I softly rubbed one of her ankles to see if I could get her to wake up a bit. As we were walking into her building, I had the idea to maybe take her for a walk. It was a nice warm day, so she wouldn’t be able to say she was going to freeze to death like she did earlier in the year when I took her out in 50 degree weather.

She barely opened her eyes when I nudged her and said, ‘Mom’. She babbled something and then right back to sleep. Ok. I’m not going to bother her.

So it turned out that I, quite literally, just went to ‘see’ my mom.

Yup. There she is.

And that’s why there’s no picture for this post. Showing you a picture of my sleeping mother is kinda weird.

We walked over to the nurses, let them know we had hoped to take her for a walk but she wasn’t having it, and then asked how things were going.

Maria said, “Oh boy. Janie, are you going to tell her?”

You know that’s a sign of good things to come.

Janie, who is a lovely woman, but overly apologetic for things, got a stricken look on her face.

Clearly my mom was safe and ok because I had just seen her, so I had no idea what it could possibly be about. I mean, how do you top telling me that my mother is eating her own poo out of her adult diaper?

Janie walks over to two shredded lamp shades and picks them up. In my head I was thinking, “She’s destroyed everything in her room, we can’t possibly be concerned about the destroyed lamp at this point.”

“So, your mom tore these apart… And then started eating the lining. We assume she thinks its potato chips. She didn’t ingest much, if any.” She shows us how the lining is this hard and brittle material that does, in fact, crumble into ‘chips’.

“Do you want to keep the lamp shades?”

I’m looking at these two women who just told me that my mother was destroying lamp shades in order to eat the lining, and I realize I’m not sure if they’re upset that she was eating them or that she had destroyed her own, possibly expensive, lamps.

I had to chuckle and shake my head. “Just throw them out, if you could. I don’t see any reason to try to keep them.”

Since my mom showed no signs of waking up, we thanked the nurses and just headed out to go get lunch. Sandwiches, not lampshades….

On the way to the car, I did comment on the fact that it was crazy my mom was eating lamp shades. But, I think what’s crazier is that I really wasn’t surprised. You know what I mean? You know when you hear news that you just cannot absorb or comprehend, there’s a specific feeling in your heart and your mind, like you’re trying to make space for something that just won’t fit. It kinds of hurts and you just don’t know how to make sense of it. Yeah, I don’t have that feeling when it comes to my mom, anymore. It has been a while since I’ve really been shocked by something the nurses have told me. I’m sure that’s probably ok, but I wonder if I’m just desensitized to the whole thing.

I think once I learned for myself that my mother was truly regressing and that experiencing my mom was more like experiencing a toddler or infant, that’s when my brain was able to make the appropriate space for the things to come. I was able to fit this strange square peg into a similar square hole. And, although I’ve never had kids and have spent very little time with toddlers, anecdotal stories and whatnot throughout my lifetime have prepared me enough.

It’s kind of like the feeling of finally getting her diagnosed. Putting a name to it made it ‘knowable’. And something that is ‘knowable’ can be learned and defined and absorbed. Something ‘unknowable’ is confusing and strange and out of reach.

Suffice to say that on the day to day things, put into context and this crazy regression timeline, recent events with my mom are just par for the course. But, in the grand scheme of things and the big picture of it all….there is a part of me that’s like, “What the f*&l?! My mom tried to eat a LAMP SHADE!”

And not just one…they were a set.


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I tried to not bring Star Wars into this….Happy Mother’s Day


My last Mother’s Day post was only 5 posts ago. So, I’m averaging 6 posts a year, it seems. Not really what I had hoped to do, but I’ve got to be honest, there’s not really much to write about. Or, maybe all of this is just becoming the norm. I’m sure that’s probably what it really is. And, in my mind, why would anyone be interested in the regular stuff that goes on day to day?

I re-read a little bit of my last Mother’s Day post. This one will be quite different when it comes to her last neuro exam and the time we spent together.

A week or so ago, I took her to her 6 month exam. Renee, the nurse practitioner, saw us along with a new NP, Stacy? Michelle? Rachel? Damnit, I forget her name. Anyway. There was another gal who was getting to know the patients. She did my mom’s exam while I talked with Renee about the day to day stuff.

Once again, I had gotten my mom right after breakfast. She was in a good mood and rather attentive, but she quickly grew bored while we were waiting. Due to lack of comprehension, boredom is an easy state for her to slip into. Just like if you or I were to sit through a lecture on the mating patterns of bees for 8 hours, we’d fall asleep even while trying to be polite. If you don’t understand, or comprehend, you just don’t bother to pay attention. And if you aren’t intellectually stimulated, or entertained at all, and you’re trapped in this thing for hours (or all day), then you’re just going to get bored and fall asleep, if for no other reason than to have something to do. Can you imagine not understanding anything that goes on around you?! I’d be bored, frustrated, and I don’t even know what.

So, she was un-interested waiting for the nurse to take us back. She was bored out of her skull while we chatted in front of her. And I practically had to drag her out when it was time to leave. If she wasn’t a grown woman, I would have carried her like she carried me so many times as a kid.

Before we had gone in, I let her carry my plush Yoda doll that normally sits in my backseat.

mom and yoda

That seemed to be a good thing for her. I’m not sure why, but her “babies” are nowhere to be found back at her place. Everyone I talk to just says, “Oh? Really? I’m not sure where they are!” So, I give up. But, holding Yoda was comforting and gave her something to do. She took him with her to her exam. When she came back, she was holding a piece of paper that said, “Close your eyes”. It was part of the test. She was able to read the words out loud, but wasn’t able to do the action. She had a pen in her hand, and instead of drawing on the piece of paper, she drew on Yoda. I don’t care at all that he’s all marked up. She was writing words at first. I asked her what she was writing. She said, “Mocky” and was, in fact, writing that. I have no idea what that meant. She then just scribbled all over. ~eh~ Whatever.

There was more discussion about things we could make for her so she could to stay occupied. So, Aaron and I are going to make her an activity blanket with buttons, zippers, latches, and all sorts of things. I have to make sure that if she does pull stuff off, she can’t eat it. Much like considering toys for infants. Everything goes in her mouth. And…I mean everything. That was one of the things I had to report to Renee from the nurses. Of course, Renee wasn’t surprised. She said that the main sensory spots on the body are hands, feet, genitals and butt. So, eating your own B.M. is just a natural. At this point, nothing surprises me.

So, nothing really changed much because of her appointment. A while back, her meds had been altered again to help with her anxiety or anxiousness. She seems to be calmer, a bit less destructive, but not much. And, she doesn’t seem to be sleeping during the day nearly as much. That’s a good thing.

During our last visit a week or so ago, she was given her meds in some chocolate pudding, along with a little blue plastic cup of water. The nurse was new to the floor, I think, and apologized for the fact that mom was barefoot. I wanted to be more blunt with her and let her know that 1) that’s been a lost cause for ages, get with the game, 2) even if you did get them on her, she’d take them right off, so don’t bother, 3) mom’s been a barefoot hippie for so long, there’s no point in trying to change her now, and 4) I really don’t care if my mom’s wearing socks and shoes. She’s not going outside. It doesn’t matter.

The funny thing, though, was the blue plastic cup. There was a little water left in her cup, so I took it from her and put it on the table. As we got up to leave, she walked over to the door in the wall for the fire extinguisher. She opened it, and took out another blue plastic cup. I’m guessing that’s her stash. And I wonder if the nurses are aware of it. We didn’t tell them.

Our Mother’s Day visit was today, which is NOT the holiday itself. First of all, I hate the crowds of folks that visit just because it’s the holiday. I hope they actually visit more often than that. I’m not trying to judge. Maybe many of them live out of town, I don’t know. Secondly, my mom doesn’t know it’s Mother’s Day and barely realizes she’s a mother anyway, so what does it matter if I visit on the day? Thirdly, let other people have my parking spot since there’s really no need for me to be there on the day.

While I was teaching some classes at my yoga studio this morning, I asked Aaron to walk to the local thrift store and pick up some bracelets for my mom. He’s a much better shopper than I am. When I got home from the studio, I saw the two bangles he picked out. A bright red wooden one and a gold striped one. He figured the gold one, which was likely plastic wrapped in pleather, would be good for my mom to tear apart.

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When we entered her room, shortly after 3pm, she was sitting on her bed, in her PJs, reading her highschool year book. It was from her junior year. It was a bit trashed which could have been by her hand, or could have been from age. She is in this place with a classmate’s parent, which is sad, if you think about it. So, that gal could have given it to her. Or one of the other folks that come around; family, friends, etc. Someone had circled her face on the pages where she appeared. She was really enjoying looking at the big pictures of the students. Somewhere in there, that is familiar to her.

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(This is actually her with an Erma Bombeck book.)

We gave her the bracelets. Aaron said, “Happy Mother’s Day” to her, but it didn’t register. She tried to fit one bracelet into the other or to make them into something more interesting. I put them on her wrists so she could see that’s one option for what to do with them. She took off the gold one and was playing with it. Aaron asked her if she saw it as blue and white, or brown and gold (referring to the internet sensation of that damned dress from a few years ago). I pointed to the bracelet and said, “What color is this?” No response. I tried again. “Color?”, I said, pointing to it.

“Gold.”

~My eyebrows went to the ceiling.

I pointed to the other bracelet. “What color is that?” Nothing. “Mom, what color is that?” Nothing.

“Color?” Pointing.

“Red.”

Had I not been sitting securely on the bed, I would have fallen off it.

I’ve mentioned before that the one thing she can completely communicate is colors. “Green” of the grass during a walk last year was the first I realized it. It makes me want to wear a burgundy colored shirt every time I see her just to make her connect the color with my person.

Not much else was a conversation. We had a good, but short, visit. I would have stayed a little longer, but I hadn’t eaten all day (not proper food), and I was getting a little desperate. I told her I was hungry and asked if it was ok that I go get something to eat. She said, “OK”. I doubt she understood any of that, but it made me feel better. I hugged her and told her I loved her. She said, “Thank you”. Telling her I love her makes me think of the Han and Leia scene every time.

Leia: I love you.

Han: I know.

There’s no kissing. No one ends up in carbonite in my scenario. Vader and Boba Fett normally aren’t in the background. Neither are Chewie and a broken up C3PO for that matter. So, I guess it’s nothing like that scene.

I did got a little misty (read as ‘blubbering mess’) writing in my journal about my day, earlier. I know I shouldn’t, but I think about either another universe where my mother doesn’t have dementia or I think about what would have happened if she hadn’t gotten it in this universe. She would have loved my yoga studio. She would have come to classes and just gotten hysterical, to the point of snotting everywhere, trying to do the poses. She was never one for being serious for too long. And maybe that’s why I teach my classes so we aren’t dead serious the whole time.

Mom would have loved the DIY Mala Bead class I had today, too. She would have had a good time talking to my ex-mother-in-law, the gals from Watterson that came, and another student who is about my mom’s age. My mom would have loved to attend Juan’s meditation classes. She was big into transcendental meditation, back in the day.

And she would have been able to attend my Mother’s Day class tomorrow. She’d get to be in the class with other women around her age and their daughters. And I’d get to introduce her as my mom. People would be like, “Aw, how cute that your mom comes to your classes!” and, “Oh my god you look like sisters!”

As it is, just like I’ve indicated in the class description, this is a class either with your mom or for your mom. Bring her physically or in spirit. And that’s what I’ll be doing. I’ll just have to keep my shit together as I teach.

I hate this damned disease. She’s with me, but she’s not. She’s here, but she’s not.

But, she is here. And little bits of my mom show through every once in a while. I appreciate all the moments I have with her, no matter how much the norm changes, no matter all the crazy shit that shouldn’t happen does.

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Protecting the memory of her


 

Memories are such amazing things. Such important things. Having a memory. Creating a memory. Recalling a memory. And all the feelings associated with those memories.

We keep mementos in the hopes of sparking a memory when this thing is seen or held or smelled. But, it’s not always the thing itself that is so prized, but that little movie that plays in your head of the moment, the event, the people. When you look at a picture from vacation, you don’t say, “My. This is such a beautiful piece of photographic paper with some images on it.” You don’t hold it in your hand and just bask in the glow of the photo itself. No. When you look at a photo, your mind takes you back to when you were there. You take a little vacation, which is sometimes, just as good as the real thing.

When you look in the closet at your wedding dress, you may think, “What a beautiful dress.” But your thought doesn’t stop there. You kept that dress to remember the day. The moment. The dance with your new husband. The dance with your father. The kiss. The fun. The food. You mind is able to transport you back to that day and you can almost smell the cake, lasagna, and roses. You can hear the voices of family and friends as they enjoyed the reception. You lose your perception of the present. Your vision is taken over by what your mind and memory are presenting to you.

We keep things in order to remember things. And, likewise, we discard things in the attempt to forget or move on. Of course, it takes trauma of some sort, either voluntary or involuntary, to actually erase a memory. Just because you threw out those old journals doesn’t mean the things you said and did never happened. Just because you no longer have the sweatshirt from high school doesn’t mean you didn’t play on the basketball team. You can certainly go back to those times in your head, but sometimes having the memento helps jog your memory.

I will admit, there are pictures I’ve found from high school of events I attended that I cannot, for the life of me, remember. Or, maybe I can remember little short moments, but not how we got there, who else was there, what we ate, and so forth. So, sometimes, even the evidence just can’t help you recall.

I come from a sentimental family. Some of us keep some mementos longer than others. And that’s ok. I’m not judging. In my opinion, there are many things I’m happy to recycle or give up because they could be put to better use, and my memory of the thing is so strong, I don’t rely on the memento to jog it. But, I do have my grandma’s hope chest. And it is filled with family albums. Her old knitting magazines. And some other things. To me, some of these things are historical. Some of these things are photos of things I never actually experienced, like things my grandparents did before even my mom was born. That is precious to me because I would love to have met my grandparents at that age. So I gaze at the photos and imagine what it might have been like. I imagine what the colors actually would have been (because life certainly wasn’t really black and white!).

One of the most important mementos in  my life right now is my mother herself. It’s odd to say and rather odd to have actually realized.

Over the past few months, the effects of my mother’s dementia have increased a little more. Due to the things going on with her, I’ve found myself in the same conundrum as when I started this blog, only on a deeper level.

In some of my first posts, I wrote about the bear my mother would carry around. She had that bear in her arms all the time. So much so that she had it taken away from her because she was getting upset when it wouldn’t eat dinner. She, in her mind, had given birth to the bear. It was her baby. And like a good mother, she wanted to take care of it. So, she was distressed when she wasn’t able to take care of it. So, the bear went away.

Over the past year, she has gone through many stuffed animals and a baby doll. There are times when I’ll see her with a doll of some sort, but it’s not the same ones she had in the past. She has become so destructive and anxious that she’s been destroying things, along with her dolls. We’ve had her meds changed to help with this, and she seems to be doing a little better.

The other day, the nurse asked me to bring in 5 shirts and 5 pairs of pants for my mom. When I asked details on the kinds of clothes, the answer was “pull ups”. So, I’m essentially buying clothes for my mother like I would a toddler. Something with an elastic waist band because she fights the nurses so much when they help her use the restroom. Pull over shirts because anything more is likely to be too complicated. No buttons. No zippers. Easy peasy.

And now here’s where I’ve been struggling the most with what information to share. In the beginning, I was concerned about protecting my mother because it was upsetting to me that she had a “baby”. I wanted to respect her privacy since she wasn’t able to say yea or nay for herself. My mom became my memento of my own mother. I wanted to keep her in a bottle as she was before she slipped into this dementia. And I thought that if I didn’t admit she was as bad as she was, then it wouldn’t really be true.

Exactly like the fact that my mother lied to her doctors so she wouldn’t be diagnosed as bi-polar. If you aren’t diagnosed, you don’t have it. Simple as that. ~wipes hands clean of the situation~

For some reason, the fact that my mother’s verbal skills became worse didn’t affect me as negatively. For years, her way of communicating has always been difficult for me because she never started a sentence. She never used context. She never stopped talking. If you know my mother, you know what I mean. So, this lack of proper verbiage was just par for the course. Plus, if you know someone well enough, you don’t really need proper words to understand what they’re trying to say.

It’s the fact that my mother truly has incontinence and requires adult diapers that has kept me from writing. This one thing has overcome my whole vision and memory of my mother. And I hate it.

When I think of babies, I think of little defenseless beings who need someone to dress them, bathe them, and change their diapers. When a baby has a bowel movement, everyone knows it. Usually you just pass the baby back to the parents and they will change the baby. Get a new diaper, get new clothes if necessary, and now you can hold a fresh smelling baby again.

Here’s part of my issue. For the past year or so, the doctors have asked me if my mother was able to go to the bathroom on her own. And for over a year, I have been able to say that this is the one thing she’s still able to do for herself.

This no longer the case. There were times when I used the excuse that she just didn’t know where the bathroom was. But, that’s not really true anymore. Even if she did know where it was and how to use it, she has lost the ability to control when the whole thing happens. Just like an infant.

And this is where I feel the indignity of this whole fucking disease. This one aspect makes it really hard for me to remember the woman she used to be. It’s such a sensory thing to know that my mother needs the nurse to change her. And it makes me feel even worse that I can’t help. She is so strong and puts up such a fight, that this is where I’m completely dependent upon the nurses to help in the situation.

Almost all parents I know, including my own, have some sort of poop story about their kid(s). And when you tell it about a baby, its funny. I, apparently, took stuff out of my diaper and ate it when I was a baby. My boyfriend has a story about his son filling the onsey so much that it squished out the neck. They left the creepy, poopy onsey on the side of the road for someone to find and wonder about.

But, when you tell the story about mom at Thanksgiving getting it all over her hands and, consequently, all over the walls, while two nurses and the daughter tried to get her cleaned up and changed, it’s not nearly as funny. And maybe that’s where I’ve gone wrong. Is this really the thing, of ALL things, that stops me from being able to see the humor? Poop? Really?!

Anyone that knows me knows that poop jokes are the norm. I’m a vegetarian, yogi and runner. If you’re not talking about poop and farts, you’re doing it wrong.

So, why do I draw the line here? Why is it that my mother’s incontinence and poopy diapers are the thing that make me so upset and keep me from writing a blog post after Thanksgiving? Well, I think its the fact that this is the thing that means to me that she’s really losing important functions. It’s not the poop and the diaper itself. It’s not the heartache from watching a nurse fight with her to change her pants and clean her up.

It’s the fear of what’s next. It’s the fear of what I know is to come. It’s the fear that when she’s not able to feed herself, that means she needs hospice. And then it’s the fear that her body forgets how to breathe. That means the end. And with the decline I’ve seen in the past year, I don’t know how quickly these other things will happen. It could be months, it could be years. She tough as hell, I know. So, I’m hoping she’s got more time.

At the same time, maybe some of  you are thinking the same thing, who would want to live like that? I’m not getting into the argument about that. You have your beliefs and I have mine. This isn’t the place for it. At least, not right now.

So, there it is. I’ve told you why I haven’t written in so long. I am ashamed of it, but at least I’m able to express why. And, as usual, writing has helped me work out some of the thoughts and feelings. I don’t want to ruin the memory you have of my mother. I want to respect her humanity and dignity. But, there is a truth about this disease and the decline that I want to share.

No matter what, even when my mother is no longer physically around, I will still have more than 40 years of memories of the woman. That’s a lot of stuff. And I won’t need all the photos and papers and things. That woman is such a personality that’s she has burned herself into my heart and into my brain.

Until that time, though, I have my little mom still around. My little mom-mento.