Taking Steps

I search for those little smiles. The twinkle in her eye. The spark of mischief. The smirk that mimics my own. I see them so rarely, that I latch onto them whenever they appear.

My daughter has Crohn’s (or ulcerative colitis, depending upon which doctor we’re seeing). When I first heard the diagnosis, I didn’t know what it was. At that instant, I felt glad for something with a name. I thought they would give my daughter some medicine and make her better. That was three years ago, after months of stomach pains and running to the bathroom. Now, three years later, we’re not to the point of normal, but there is progress in the right direction. I feel hopeful.

As a mom, the guilt and unknowns and lack of being able to fix things are unbearable at times. I no longer sleep restfully. I feel angry with my daughter for not trying hard enough, and then I feel angry at myself for having that thought. I know this isn’t anyone’s fault. It’s not something she did or allowed to happen.

Or is it my fault? Is it the fault of genes? My DNA? The water, the environment, something I should have done better? When I look at photos of her as a little girl or as a hopeful teenager, full of expectations and dreams, my heart grieves for her and yearns for a do-over. If I could turn back the clock and change whatever it was that went wrong, I would. I would.

Right now, my daughter is considered to be in remission. She is going to the gym and swimming laps. She rides her bike. My daughter, an IronWoman, is setting small, reasonable goals for herself. I admire her perseverance. I try to bolster her mood and to keep my own fears and negativity to myself, but it’s hard sometimes.

When my daughter asked me to participate in the Take Stepsfor Crohn’s and Colitis fundraiser, I hesitated. I don’t want to see my daughter as a person with a disease, let alone with a disease with no cure. Maybe by sharing my own story along with hers, we can help to find her a cure.

The Mandarin

Blossoms. They greeted me like a welcome home gift.

Working in the front yard today, I discovered them almost by chance. I'd all but given up on ever seeing that little tree blossom again, but there they were. Small, fragrant blossoms.

My mom never really mastered the idea of nurturing her garden. It was especially challenging, living in the Mojave Desert. She saw her best successes with things that were allowed to grow wild and untamed like her Desert Willow and Palo Verde. She was especially proud of her occasional cactus blooms.

After my dad passed away, Mom moved into an apartment in the Central Valley where she shifted her gardening focus to tending a wild privet that had sprouted on her little patio. I tried to supplement her garden with things I thought could be contained and managed. A small tomato plant, a miniature rose, and, because she lived in the middle of miles and miles of citrus groves, I gifted her one year with a potted mandarin. By potted, I mean that I had bought her a nursery tree and a larger pot that I'd intended to plant it in, but she would never let me. She preferred it in the little confining pot that came from the nursery.

Over the next several years, whenever I would drive the 200 miles to visit my mother, I would first examine the mandarin on her front porch before I knocked on her door. I was at first amused and later alarmed at the struggles of this poor little tree. One year it spent most of it's time over-watered and sitting in a soggy puddle in it's pot. Another year, it was covered in little bugs that my mother insisted were citrus psyllid because she'd looked up citrus pests on the internet. I think they were aphids. I showed her that a blast of the hose would wash them away, and the tree made another recovery.

Then came the year of dryness. As I walked up to the door on one of my visits, I saw that the leaves were falling off, and the branches were dry and brittle. "You need to water your mandarin," I said as I walked in the door.

"I watered it yesterday," Mom said.

I argued with her and showed her the dryness of the soil and told her there was no way she could have watered it a day ago, but she insisted. It didn't make sense. Why would she lie? As this scene repeated itself a while later, I realized that it wasn't a lie.  It was dementia. In her mind, in her reality, she did water the mandarin yesterday.

Through her early stages of dementia, she would also sometimes drag the mandarin into her house if she thought it was going to be too cold outside. My attempts at reasoning with her ... at trying to explain to her that the porch next to her house was protected from frost ... were beyond her ability to comprehend. I established a new routine during my visits. I would check the mandarin before I got to the door, but I never questioned or accused. I would quietly water that mandarin when I visited, and I knew that my sister was doing the same. And we worried.

Mom's dementia deteriorated her mind to the point that we had no choice but to "kidnap" my mother and move her in with us. The mandarin came with us. I wanted her to have enough of her familiar belongings here to help her settle in and feel at home. I finally potted that little tree into a larger pot and placed it outside the large window for her to be able to see it from her place at the dining table. Like my mother, the mandarin rebelled at the move. It dropped it's leaves and refused to bloom, despite my own more experienced gardening efforts. My backyard has six citrus trees that give us amble fruit, but the mandarin sat sulking and forlorn.

Mom lived with us for only a few months, and then she spent the next two years in memory care. She died on 17 Adar (or March 4 according to the Gregorian calendar). I told people she'd died of Parkinson's Disease. The hospice nurse argued that conclusion because the saying goes that people don't die "of" Parkinson's Disease. They die "with" Parkinson's disease. The nurse and I came to a compromise. We agreed that my mother died because she stopped living.

After the memorial service, I ran away from home. It had been hard seeing my mom decline. It was emotionally exhausting to see her go from stubborn and independent to only vaguely present ... and then to not even there. The end was mercifully brief. The decisions. Family. Friends. Rabbis. And then it was over, and I ran away from home for almost two weeks.

I returned and decided to spend some time working in the yard. Something I've had little time to do lately. And there was the mandarin, adorned in blossoms, offering a promise for the future.

Lita Reid
3 Sivan 5690 - 17 Adar 5778
aleha ha-shalom

Holding Up the Spoon

As I bring the spoon up to her mouth, my own mouth instinctively opens, mentally coaxing her to open up. It's the same thing I did with my babies, only now I am feeding my mother. I've never felt so emotionally exhausted. I don't even care who sees me cry anymore. I don't.

Navigating the end-of-life journey is something that so many of my friends have been doing. We're the "sandwich" generation. It's what we do. My mother's decline has not been linear. It's a series of jagged degradations of physical and mental abilities. She's not merely slipping away. It's not neat. It's not tidy. And right now, it's not even peaceful.

My mother has Parkinson's Disease and related dementia, what is now referred to as Lewy Body Dementia. For years we'd been worried about her continued elevated level of crazy behavior. She's always lived by her own set of rules and within her own special reality, so it's hard to really determine when her normal crazy became dementia crazy.

We were powerless to step in and "help" because she was so resistant to the idea that she needed help. And she was tricky. So tricky that she kept her doctors and the DMV fooled into thinking she was okay, or at least not too bad.

It took until the point that we were literally able to kidnap her to get her into our care. And, only a few months later, we tricked her again and locked her up in memory care. That was the worst day of my life, by the way, tricking my mother and locking her up.

The goal and the mantra over the next two years was assuring that Mom was comfortable and content. And she was until only a few days ago.

That's when the screaming began. The screaming that makes me feel powerless. Is it pain? Is it fear? I'm the person who is supposed to be in control. If something needs to be done, I want to do it. To fix it. To make it right. I need my mother to tell me what's wrong so I can fix it.

After a day at the ER, looking for something to fix, it was obvious that we've reached the next stage. At the memory care facility, the staff often uses the term "part of the process." I don't know what else to call it. Dying, I guess.

Hospice has now set up shop in my mother's room. Everyone has been fantastically supportive. The staff of Sunrise of Sacramento, everyone at Kaiser, Blossom Ridge Home Health and Hospice, Rabbi Nancy. I have so many new phone numbers and names in my phone now of people who have met with me to provide guidance and comfort. After observing a flicker of awareness when I held up the phone for my brother to talk to her, I got the idea to seek out a rabbi. I am not religious myself, so it's not something that occurs to me. I don't know why, but I knew that I needed a rabbi for my mom, and I sought out a visit from Rabbi Nancy from Congregation Beth Shalom. I'd seen her once at Purim celebration. I knew that she would be wonderful. And she was. I asked her if she knew a prayer. This is a very stupid question to ask a rabbi. What I meant was, "Do you know the right prayer to comfort my mother?" This is also a stupid question to ask a rabbi. I plead emotional exhaustion.

Rabbi Nancy Wechsler went into my mother's room and sat by her bedside. She has a beautiful singing voice and got up close to my mother and comforted her with her beautifully offered prayers. Prayers that were familiar even to me. Prayers that comforted my mother and brought to her a look of serenity and peace. Prayers that made me feel close to my Jewishness. Prayers that I saw, by the look on my mother's face, made her feel close to her beloved parents and grandparents. I hope I can find a Rabbi Nancy when the time comes to have a memorial celebration in Los Angeles. Does she travel?

I'm taking it one day at a time. That's what everyone says to do. I continue to make plans for work and travel but always with the caveat that I don't know what tomorrow will bring. It may be the same. It may be different. I can't control that, but I can hold up that spoon and hope she opens her mouth.

Roxy Roo

I'm feeling heartbroken. We lost Roxy today.

When we left the house this morning, we debated leaving Roxy inside since we were expecting the yard guys to show up while we were gone. We went ahead and put her outside, knowing that she's been left with them previously and has seen them at our house every Tuesday for the 10 months she's been with us. Well, this time she bolted. Despite much effort to get her back by the yard guys, she was long gone.

Kelsey put out notices on Facebook and Nextdoor, Some very kind neighbors answered the call to action and started searching for her. Another neighbor saw Kelsey out looking and joined in the search. Sadly, Roxy found her way to one of the busiest intersections in town (over 1/2 mile away) and was hit by a car. Kelsey received a phone call right away, but there was nothing that could be done.

I was at work watching all of this unfold via my security cameras and text messages.

Roxy came to us emotionally scarred. She was afraid of cars, people, dogs, leashes, sudden noises. Kelsey spent hours and hours patiently working with this dog. Despite my resistance at the idea of having a dog, I had grown to love her happy greetings, and I was glad that she was becoming protective.

This weekend was the best weekend we'd spent with her ever. She had a great time up at Tahoe and played until she was exhausted.

This is the first time we've lost a dog who had not lived out a full life. I am absolutely heartbroken and full of "if onlys." If only any one thing had been different this morning. Just one.

Please hug your fur babies tonight and give them lots of love.

And thank you to all of the neighbors (both friends and strangers) who helped out.

That Numb Feeling

I'll just come right out and say it. Yesterday was a really sh*tty day. I spent the entire evening sitting around the house, barely able to think and feeling numb.

So often when I think about my dad, I feel anger and sadness and regret that he died so young and that my kids never got to know him or that he never got to see them grow up. But today, leaving the memory care home after visiting my mom, I was thinking about how awful it would have been for my dad to see her now. My brother and I showed Mom photos of her and Dad from when they were teenagers and so fresh and in love and looking ahead toward their futures. I'm sure this is not the type of future that anyone sees for themselves. I wish life were more like the movies where aging is so often simple and sweet and sometimes comical. Reality is hard. It's messy. Sometimes it's funny, but sometimes you have to try really really hard to see the funny.

We're all okay. Nothing drastic or dreadful happened. It's all part of the process. It's where we are at this time.

Things I'm grateful for today: my daughter, who has my back and can be very very calm and knows the right words to say, my brother with whom I am always honest and who never hesitates to say what's on his mind (okay, maybe he does that a little too much), and always my husband, even though he is far far away.