Category Archives: Life with Mom

To My Mom On What Might Be Her Last Mother’s Day

When I crawl into bed and snuggle into her soft side, my mom smells of lavender. Each night either my sister or I spray a mist on her hands and face before we put her to bed, a ritual we have kept up since she was diagnosed with brain cancer early last year. Lying beside her is my favorite part of our nightly routine. When I walk into her room after a long day I am tired, too, but as I wheel her to the bathroom I launch into stories about my day, or the funny things my young children have done. When there is extra time I often give her a hand or foot massage, though when I ask her whether she’d prefer me to rub her hands or cuddle in bed, she always chooses the latter, like I do.

Mom (right) and her sister Wendy in Hawaii in the sixties.
Mom (right) and her sister Wendy in Hawaii in the sixties.

 

I often think of the day, several weeks before she was sent by ambulance to the hospital, when I took her calloused feet in my lap and gave her a foot massage. “Why don’t I do this every time we hang out?” I wondered aloud, and Mom just laughed. I knew why, though. My mom wasn’t fond of being touched. I rarely got a hug when she left my house after our weekly lunches. When I said, “I love you Mom,” her most common response was “Mmmhmmm” as she walked away.

 

She doesn’t say much these days, as the tumor has taken up space where her language is formed, but there was a time – not so long ago – when I couldn’t get her to stop talking. Everything got her riled up or excited to solve the puzzle of the complicated symbols and messages that swirled around her. After she was diagnosed with paranoid schizophrenia when I was sixteen, her behavior made sense but her diagnosis helped little else. She became homeless after she threatened her mother with a knife, and remained that way until eighteen years later, when a fellow resident at a woman’s shelter found her lying on the floor unable to move her right side.

 

Mom, before her diagnosis.
Mom, before her diagnosis.

Rushing to the hospital this time, as a mother myself and as the daughter who had moved to Seattle to help Mom get medication and housing, I found myself at the last stop on a decades-long quest for peace and security: a hospital bed, a diagnosis that afforded little time, and somehow, a place to call her own, not in the way I had imagined, but at a non-profit Lutheran nursing facility that gave her a home when no one else would. When I spend time with her now I walk or drive the half-mile to her home and I know just where to find her, in room 158-W, with a view of the courtyard. She’s on a small dose of an anti-psychotic since her hospital stay, which tames the worst of her delusions. When we walk around the block, or read together, or sit and watch the kids run circles around us, it’s a much less complicated interaction. The paranoia that used to consume her and rule our conversations is at bay, and there is room for the real Judy to emerge. I see who she must have been as a teenager and a young woman: she is sweet, and funny, and she loves to laugh at herself. Her concern that we are safe is no longer all-consuming, and she has room to accept hugs and fist bumps from the young kids to whom she told outlandish stories once upon a time. The other day, when a troubling thought was racing around in her head, when she spoke of “Schwarzenneger’s race cars” and “LA police,” I helped her try to get hold of her struggling mind. “Mom, you can just say, ‘I love my children,’ over and over again if you want to stop thinking about that.” She stopped muttering and looked at me with surprise. After I leaned in to give her a goodbye hug, she motioned with her hand for me to lean in again. In a clear, strong voice – so unlike the tinny one she had used as she tried to expel her dark thoughts – she spoke words from the core of who she is. “You have blessed me with so many blessings.” She squeezed me tight and I teared up as her words filled again the empty space left when her illness took her away from us. I am awed by this woman with a will of steel who endured things that would have crushed me. And I’m so grateful that at the end of her life, she can put aside the fight to survive, and share that part of herself that eluded us all for so long.

Happy Mother’s Day Mom. I’m so glad you are mine.

A Few Dollar Bills and a Diagnosis

In my dresser’s top drawer, tucked away inside a plastic bag that looks like it’s been through the wash, two dollar bills lay folded together. I cannot bear to put the bills in a more appropriate location, or use them for their intended purpose. Sometimes, when I catch sight of the bag, tears spring to my eyes.

I gave these dollars to my mom as she left my house on a Monday in January, as I always have. “Here’s your bus money,” I said, noting how strange it all was, yet how accustomed to it I had become. It was part of our ritual.

The next afternoon I received a surprising, but not unexpected call from Mom’s social worker. Early that morning someone had found her on the floor having difficulty using the right side of her body. She’s had a stroke, I thought. I was sure of it. A few weeks earlier, as she sat on the couch in our back room, she tried and had difficulty touching her right fingers together. I tried to get her to see a doctor, but she wouldn’t hear of it. Her social worker and I had been keeping an eye on her ever since.

By the time my husband had made it home to be with the kids, Mom had been in the hospital for over eight hours. Her face lit up in a smile when she saw me as I rushed into the room, but she was tired and having trouble speaking from what turned out to have been a seizure. Her tongue was swollen and purple from biting it during the ordeal.

Over the next few days a picture unfolded of what was happening inside her brain. “She has a large mass over her left frontal lobe that is pushing into her corpus colossum,” a young, but kind resident doctor told me in the bright hallway outside her room. “We’ll know more tomorrow after the neurosurgeons examine her scans.” As I spoke with family members about what a “large mass” could possibly be, all kinds of hopeful thoughts were offered: perhaps it was benign, perhaps it was a massive blood clot from her concussion twenty years before, perhaps, perhaps, perhaps… The neurosurgeon who came to deliver the news and to show me the pictures of her brain did not have such good news.

“This is a very nasty tumor,” he said, gently. “The life expectancy with tumors like these is between 18-36 months.”

I didn’t hear most of what he said after that. My brain was filled with one thought: if only it had been a stroke.

*   *   *

After wrestling with the doctors not to send her back to the street – which they intended to do the day after we learned her diagnosis, but that’s another LONG story – my mom consented to brain surgery to biopsy the tumor, to a small dose of an anti-psychotic called resperidone, and rested in the hospital for several weeks while we tried to find her a place to stay. “It’s incredible what we’ve been able to accomplish,” my sister rightly said, when I relayed my challenges with getting her housing, the final linchpin in taking care of her. ” If she wasn’t dying, we’d be jumping for joy.”

As we sought out a place for my mother to live, we met wall after wall. Everyone within the Seattle area rejected her because Medicaid is her only insurance and Medicaid pays very little. We were looking at sending her hundreds of miles away, which I couldn’t bear, or taking her into my home, which sounded almost as impossible. And then, a woman at Columbia Lutheran Home, just blocks from my house, said, “You’ve touched my heart. Let me see what I can do.”

Today, almost three months after her diagnosis, my mom is living in a very nice facility – all day long – and just was admitted to hospice care. These days, I would give my right arm for eighteen months, but my mother is unlikely to see her sixtieth birthday this August. Her Stage IV Glioblastoma, the most aggressive form of brain cancer, is beginning to get the upper hand. However, my mother, who has endured heartbreak and hardship for most of her adult life, remains sweet and kind. She is grateful for the chance to see us on a daily basis, and so are we. Her gentle, sweet spirit has shown up during this time of great challenge, and we couldn’t be more grateful for the chance to tell her the things that we’ve always wanted to say, but that didn’t always get communicated in just this way.

We love you. 

We are grateful for you. 

We are so, so glad you are my mother. 

And, always, underneath:

God, how we will miss you. 

I Can’t Tell You

I can’t tell you what it’s like to hear voices. But I can tell you what Mom’s face looks like. How she stops and stares, and listens as if someone were whispering in her ear.

I can’t tell you what causes schizophrenia (and neither, definitively, can the researchers), but if the whole world is made up of spiritual beings, as I somehow come to believe not long ago, then I do not find it hard to imagine that the sinister, frightening, self-destructive things that my mother hears do indeed come from an enemy of her body and soul. I know, because I live in the twenty-first century, that this destruction is a disorder in the physical matter of her mind.

I can’t tell you what goes on in my mom’s body when she hears voices, but I can tell you about the time that I heard the voice of God. I can tell you how I wondered…could this be it? Could this be the beginning of the end? But a greater part of me knew, in that way you somehow just know, that it was indeed the voice of something other than myself.

I can’t tell you if my mom ever wondered if she was losing her mind. If, in her early twenties, the voices that speak to all of us suddenly got louder and more persistent. But I know that as I began to pray, to tune into the spirit within, I wondered which voice, among all the noise that clamored around in my head when I was quiet enough to listen, was the true and lovely voice of God.

I can’t tell you if my mom will ever get well, but I can tell you what it’s like to be her daughter again, and to believe there is reason to hope that my presence in her life makes a difference. To believe that it gives her entry back into the world that was taken from her so long ago, the world where the true and lovely voice of God whispers to me: love her, no matter what – even when it’s uncomfortable, even when it’s scary, even when it’s frustrating. Love her, and be with her, and she will be yours again, and you, hers.

We All Want to Belong

Mom has been coming over to my house on Fridays for awhile now. She usually she just sits on the couch and sips her tea and writes inscrutable things in magazines and catalogs while the kids play. Every now and then she’ll pipe up. “I bought Spencer a potty. He’s old enough to use one now.” Or, “The gluten free pasta is really what he needs. I’ll send some.” Sometimes she’ll take a bath or a nap.  And she always empties the bathroom trash.

A few weeks ago the sun was shining, and when that happens in the Pacific Northwest, you get outside, stat. Quinn and Spencer and I were weeding while Mom sat on the couch. Quinn was filling up her watering can and watering the flowers and the weeds both. Spencer had a child-sized rake that he pulled along behind him as he followed me from one garden bed to another. Mom came out the door while we were working on the strawberry patch. First she sat in one of the Adirondack chairs with her eyes closed. Then she got up and walked around the perimeter of the yard. After watching for a few minutes I went back to work, building my pile of those blasted shot-weeds that are trying to conquer everything. Next thing I knew Mom had made her way to the shed, found the aerator, and started working on the lower section of the lawn. After a few rows she took off her sweater, and it was just the family, doing yard work together.

For some reason, I couldn’t keep my eyes off her. Besides the  professional looking white blouse, she looked like anyone doing yard work in her jeans and the rain boots. Wisps of hair fell out of her ponytail and into her face, and she kept tucking them behind her ear in between the step and pull of the aerator. She was totally devoted to her task and she wasn’t going to stop no matter how many times I told her she didn’t have to do it. She wouldn’t stop because she wanted to help, just like she wants to take out the trash and “buy” us food. She wants to be part of our lives, to make a contribution. To feel valued and part of something bigger than herself. Just like everyone.

As I watched Mom working alongside us, smiling in the sun, I was struck by what a crucial difference these Fridays make in her life.  I though about my decision not to go back to India but to come here and start to rebuild our relationship. For so many years after making the choice to move to Seattle I berated myself for being cowardly, for choosing the “easy” life over the sacrificial life in the slums of Kolkata. Even though I felt guilty about it for years, times like these cement the thought that maybe it wasn’t a mistake. Maybe it wasn’t my fear or selfishness. Maybe it was just the right thing to do, out of many good options. Maybe it’s what I needed. And what Mom needed too.

I Choose You, Mom

This morning as I drove home from dropping my daughter off at pre-school I was listening to a program on my local public station.  The topic was “Without Them There’s No This: A Valentine’s Special.”  I heard several callers talk about the most important people in their lives – spouses, children, parents.  A man from Bellingham, a “ne’er do-well artist” who says he pushed his adolescence “as far as it could go” spoke of the neighbor he fell in love with at 41.  He adopted her three children and then they had one of their own. You could tell he was wouldn’t go back to his former life for anything.  There was a mother who daily cares for her non-verbal daughter who lives with a demanding condition.  She spoke with love and gratitude in her voice as she shared how she has learned to be present and to live into every moment.

As I listened to these callers speak of the people they have chosen to love I thought first of Mom.  I have two amazing children, but loving them is the easiest thing I’ve ever done.  It’s a little more work with my husband sometimes, but I am still very much in love with him as we go into our seventh year of marriage.

Mom is a different story.  Loving my mom has changed me.  It’s hard not to love her cute shuffle and absent-minded head scratching. I enjoy hersmile when she looks at one of the kids and her relaxed pose as she sits with a cup of tea.  She’s challenging though, when she is agitated and can’t let an idea go.  Some days she will talk full-tilt, almost manically, from the moment I pick her up until I drop her off.  And then there’s the days where she talks of killing people and blowing up banks, when she says my husband is trying to steal all my money and leave me.  Then I just want to drop her off at the library and drive off.

All the same, like the callers today,  I am grateful that my mom is in my life.  I take the good days with the bad because that’s just life.  I try to be grateful for the fact that we have each other at all – so many people don’t even have their parents anymore – and I am so fortunate that she is not as ill as some schizophrenics I have seen, or gone, either by alcoholism or death, like the parents of some of my friends.

So, Mom, you are my Valentine.  I choose you because I can’t imagine my life without you.  Who do you choose on this silly, but somehow meaningful holiday?  Who has changed you?

Mom Putters Before the Snow

Mom putters about the house, finding projects.  Out on the deck, the charcoal needs putting away before the big snow.  From the upstairs window I see her searching around, wondering, what will keep it dry?  A plastic bag?  A slab of wood? Aha…the shed, a few steps beyond the deck, already overflowing.

The trash is taken out and the sink emptied when I come downstairs.  Now she can sit, steaming mug of tea in hand, ankles crossed, shoring up her strength for her next task.  It is the lists that occupy her subsequent hours: the lists of food we will need to have on hand – she’ll have

enough delivered to our door for the next week (because you never know how long the snow could last).  She writes deliberately, with brow furrowed and back hunched, stopping here and there to ask, “Corn chex?  Can Spencer eat corn chex?  What about mac and cheese?”  This task, no less important – no, perhaps more in her eyes – to our well-being.  Like any mother, she will have us fed.  That is her job, even if she doesn’t have a house in which to cook for us.  I tire of these delusions, but I am grateful she  feels that she is helping.  And in some ways, she is, just by being here.

In the kitchen, I flit from task to task: from dishwasher to Quinn’s coloring to prepping dinner.  Would that I could pay more attention to her questions, her theories, as she sits and drinks, sits and writes.  I have time – if I could just stop – to sit and talk and snuggle into her plump side.  For today, I do not take it.  Next time, I hope I will.

It’s the Budget Cuts, Mom.

Call social worker.  I should get it tattooed on my hand.  Or my daughter’s forehead; I spend a lot of time looking there.  Call social worker.  I should get it tattooed somewhere because I always need to do it, and I almost never do.

My mom needs help, and I can’t always give it.   “My payee is stealing my money,” Mom says.  “I need underwear and pants and a coat and an umbrella.  My knees are so tired from walking up the hill to see you.”

I wish I could ease my mom’s situation a bit more; I wish I could get her a bus pass and be sure she wouldn’t toss it in the garbage.  Would the social worker be able to help me with that?  If I buy Mom the things she needs will she just throw them away or give them away like she did with the coat I bought a month ago?   Quinn needs a raincoat, too, and Spencer is growing so fast he already needs another wardrobe.

This is what I want to tell my mother:  “You’ve had two social workers in as many years, and now another one because of budget cuts.  I don’t even remember the new one’s name.  That’s probably why you aren’t getting any money either.  Budget cuts.  You know those people camped out downtown?  They’re trying to do something about it.”

My sister Posey and Mom yucking it up.

This is what she will probably tell me:  “They stole my money, those whores at Hammond House.  I have equity at 3931 42nd Ave.  I’ll just move into my new house, and you can visit me there.  I won’t have to leave, and I won’t need a rain coat.”

I wish she could understand.  It’s the budget cuts, Mom.  But would it make it any better?  It would still be impossible.  It’s impossible either way.

Somehow, she’s still got a beautiful smile, and she can still laugh.  She can still laugh even when she’s soaking wet and sore and tired of walking around downtown.  She’s a survivor; somehow she has endured all of this for fifteen years.  Now.  Maybe, maybe, maybe, if I call the social worker she’ll be able help.  All I have to do is pick up the phone.