In December 2008, my mother Gilda, 82-years old, was diagnosed with dementia. She came to live with my husband and me. This blog will chronicle our ups and downs, stops and starts, mistakes and triumphs as we wade through her illness together.
Wednesday, October 28, 2009
"Help! I'm Drowning!"
My mother’s doctor saw her immediately for blood and urine samples. The quick test showed she was UTI free. However, her urine was dark and cloudy. We’d wait for the blood work results for additional information. When those tests came back, we discovered my mother was slightly dehydrated and her kidney functions were off, most likely to due to it.
The remedy? Get fluids into her quick and keep her on a consistent intake of water.
My mother doesn’t like to drink water. In fact, she doesn’t like to drink much of anything.
The first day, though, she was a fairly well-behaved patient. She understood the significance of dehydration and knew something was amiss as she was experiencing the same swelling bouquet I did with every potty break. Surprisingly, six glasses within 24 hours really cleared things out and the next morning, Mom was odor free. With it went her cooperation to drink.
”You’re drowning me! Who drinks this much water? My belly won’t hold anymore!”
It’s been five days now. Five torturous days.
The first two I used bribery. Mom got to watch one of her favorite TV shows for each glass of water she drank. No empty glass? No Jon and Kate and their 8 children to delight her.
When that wore thin, I started with the tough talk.
“There is no option here, Ma.”
“It won’t go down!”
“Drink it now old woman.”
“Jesus, Mary and Joseph!”
“They want you to drink too.”
That got two more days out of her.
Today, we are reduced to song and dance…literally. Dan said we had to make it fun for her, give her a pleasant impetus. So we came up with a little melody. “A sip you take with every break,” which we sing at every commercial with a clap of our hands and a stomp of our feet.
The levels we have stooped to....
But it is working, for now.
Friday, October 23, 2009
Josie of My Heart
I’d like to post an essay I wrote about her, one that was published by Yankee Magazine online. This is one of many tributes I hope to have published about her.
A Cornmeal Heirloom
What I always noticed first when Josie cooked were her hands. Her fingers were slender but gnarled, like a sweet witch’s, and from the base of her knuckles to her wrists they were swollen with arthritis. I often wondered how she could create such amazing dishes with these two distorted tools.
Josie was my surrogate grandmother. Related to my family through marriage, she had been in my life since birth. We lived in Boston’s Italian neighborhood and food was as big a part of our lives as loving and breathing. She taught me everything she knew about cooking and wanted me to develop a fine repertoire of dishes as much as she hoped I’d grow into a good and decent woman.
I had just turned twenty when she announced it was time for me to learn how to make cornmeal pizza. I didn’t know how to react. I had been asking her to teach me for years and she always refused, claiming I wasn’t ready. And now the moment had come. Why? I wondered. What changed? I didn’t ask her though, afraid to jeopardize the moment. Instead, I jumped up to get the cornmeal.
“Heat some water up in a small pan please,” she said, ambling to her plastic-covered kitchen table. While we waited for that to boil, Josie shook a generous amount of cornmeal into a bowl, added a fistful of grated Romano cheese, and a few shakes of black pepper. “How much of each are you using, Jo?” I asked. “You don’t make this with exact measurements, Mumma. Just watch,” she said as she mixed the dry ingredients with her hands. She always called me ‘Mumma’ when speaking with me directly, and ‘the baby’ when speaking about me to others. I would remain the baby well into my thirties when she passed away.
Next, Josie uncorked a glass bottle filled with green-gold olive oil and drizzled it over the dry ingredients. The pungent scent of oil blending with cheese made my mouth water. She scooped up a portion of the semi-wet mixture and pressed it into my palm, our hands joining in a mushy prayer. “Can you feel how this is starting to stick together but it’s crumbly too?” I nodded. She smiled and moved to retrieve the hot water.
Adding the water was tricky. I knew this because I had heard her curse once after using too much. She poured it into the middle of the mixture, forming a gritty well, then handed me a spoon. “You mix first with a spoon because the water will burn your hands,” she instructed. When the water was absorbed into the cornmeal she said “Now, start mixing and pressing with your fingers.”
She watched intently as I rolled the wet cornmeal around, pinching here and there. “This is the most important part…the consistency,” she said. “It’s where everyone I’ve tried to teach has gone wrong. It has to be wet enough to hold together, but it can’t be too watery or it will fall apart when you fry it.”
My throat dried. I furrowed my brow and bit the inside of my cheek. The mixture was warm and heavy when I closed my hand around it. When I released my grip, it seemed to settle and relax at the bottom of the bowl, but not fall apart. “It feels good to me Jo. Moist but…strong.” I struggled for an accurate description as her hazel eyes bore into me. “It feels wet enough to hold together, but pasty and firm too.” She lowered her own frail fingers into the bowl. I waited, holding my breath. “Brava, Mumma,” she said with a solemn nod of her head. I exhaled. The hard part was done.
We fried the cornmeal in olive oil, bringing it to a golden tan on either side, and then cooled it on a glass plate lined with paper towels. In Italy, the pizza would be served under greens; spinach or Savoy cabbage sautéed in garlic and oil. But I always loved to eat it plain, and still do, so the subtle cornmeal flavor amid the sharpness of the cheese is not lost.
Less than a week later, I made the pizza without telling Josie. I wanted to surprise her, and if I failed, she never had to know. I agonized over each part of it; was there enough cheese? What will happen when it comes time for the hot water? Finally, becoming exasperated, I just relaxed and let touch guide me. When the pizza was done, I wrapped it carefully in plastic wrap and then in tin foil like Josie did. I gently placed it in a brown paper bag.
I tried to calm the rush of my heart as I walked the three blocks to her house. When she answered my knock, I had to hold back from shouting. Instead, I said softly, “Jo, I made cornmeal pizza.” Her eyes glimmered with surprise. “You did? Let me taste!” She broke off a piece and bit into it. I couldn’t hear a sound as she chewed; the world seemed to stand still. “Mumma, this is delicious…buonissima!” My heart leaps whenever I remember the look of pleasure and admiration she measured my way.
Josie’s picture is pasted to the side of my refrigerator where I see it every time I cook. Whenever I make cornmeal pizza, I reach over to kiss her and thank her. I can’t say my pizza always comes out perfectly, but when it does, I billow with pride, and I know she is somewhere watching, proud of me too.
Wednesday, October 21, 2009
"Cause I'm a Wanderer..."
“Did you hear that?” I asked Dan.
What we both heard next were very light footsteps on the front porch.
“It’s just the cats,” Dan said.
“Are you sure?” I asked?
“Mm, hm.”
I lay restless for ten minutes, straining my ears, lifting my head at every sound. I was uneasy, itchy, anxious.
Finally, I got out of bed and headed directly to my mother’s room with no real, conscious intention of doing so. Her bed was empty.
“Dan, my mother isn’t up here!” I said, as I flew down the stairs and called for her in increasing decibels. Nothing.
Our house sits on a small dead-end road that intersects with a much larger street. I threw on my slippers and raced to the end of it. At 5:00a, the sky was as dark as night. The streetlights illuminated the intersecting road in florescent shadows. My head snapped right and left. No mother.
Back at the house I did a much more thorough search while Dan was getting dressed. I saw that my mother’s pocketbook was gone. One of her pouty-lipped Styrofoam busts was devoid of its wig.
“Did you check the basement bathroom?” Dan said.
“No, but I don’t think she’d go down there.”
“Let’s check anyway.”
Nothing. No mother. And no feelings. I was empty of emotion. My heart was banging, but for all intents and purposes I was lifeless. My mind was racing but my blood ran still.
I found her at 5:25a as she was just stepping onto someone’s porch, her hand reaching for the doorbell.
“Ma!” I called.
She turned as if in slow motion.
“Oh Lisa!” she said. “There you are.”
I jogged up to her and put my arm around her shoulders. She was clothed in her navy blue Capri’s with embroidered strawberries, a pale green top and a black jacket. She had put sneakers on, her wig, rouge and a deep red lipstick. She was carrying her purse and she was drenched in sweat.
“Where are you going, Ma?”
“To see Ann Becky in the hospital.”
My mother cared for Ann everyday after school for years while Ann’s mother, a single parent, worked. Ma would often take her for weekends as well. Ann was part of our family for a long time and something in my mother’s ailing mind was seeking her out.
“Isn’t it too early to visit her?” I asked, playing along so as not to frighten her.
“No, it’s the perfect time. No one will be there.” She was breathing heavily and her eyes were foggy. But every motion she made was sharp and jagged, defined like a short-circuiting robot.
“Can we go back to the house and have coffee first?” I asked. “Then we can get going to the hospital.”
Once we were back inside, my mother started to “come to.” The cloudiness lifted, replaced by a sharp confusion. In her land of patient visiting, she knew exactly where she was going. Now, back at my house, reality was nudging its way in and the scenarios didn’t match up.
I got her settled in bed and walked dazedly back to my own bedroom. Dan was waiting for me.
“I feel nothing.” I said.
“There is nothing to feel,” he said. “She is safe and that’s all that matters.”
But I felt it seven hours later.
I had finished my last job and was sitting in my car. Here it comes, I thought, as the wave of fear and grief washed away the shock, and exposed the naked feelings my mind was hiding from my heart.
I didn’t expect this. I thought ‘wandering’ would ignore my mother. I don’t know why. Perhaps because once that happens, there is no denying the disease. It is too grave and blatant a symptom.
Since that morning three weeks ago, my mother has attempted to leave the house one other time. She has a reindeer bell on her door to alert us if she leaves her room and we now turn on our alarm system as an added precaution. I’ll order an ID bracelet and have even considered making up a one sheet handout with my mother’s picture on it and stats to distribute throughout our neighborhood. Her doctor has increased her Seroquel at night to make the possibility of an early morning stroll less likely.
As for me, that day put me in a whole other realm of anxiety and depression and I still haven’t found my way out.
Saturday, October 17, 2009
Reverse Psychology / Divine Inspiration
Ma and I are down to one semi-peaceful morning of getting her out of bed during the week. The other four, anything goes; lying, pleading, pulling off sheets, tugging on legs, threats in two different languages.
Yesterday, I had one nerve left and my mother danced all over it. I went from zero to sixty by the time I said good morning and she grunted. My voice rose to an unpleasant pitch and my mother’s came chasing right after it.
I tell you I don’t know what put the thought in my mind. Perhaps God glanced my way, looked long enough to see I had very little left by way of sanity, took pity on me and threw me the inspiration.
“Ma, this is all your fault you know.” I said calmly.
The one eye I could see from under the covers popped open and narrowed.
“What’s my fault?”
“The way I am. What I’m doing right now.”
“What are you talking about?”
“You took care of Grandpa when he was sick. You and Aunt Syl cared for him at home, giving him the best you both had, making sure he was as healthy as he could be.”
“Yeah, and?”
“And Aunt Connie did the same for Grandma.”
Her bald head popped out from under the covers, and she stared at me trying to find the angle, but she couldn’t argue with the facts as I presented them.
Keep going…I thought…don’t lose momentum.
“Well, I grew up seeing that. And now I am the way I am because of it. Because of YOU.”
Oh beautiful. More...
“Let’s say you knew Grandpa's health would decline faster by NOT getting him out of bed. Would you leave him there?”
“No.”
“Then what do you expect me to do?”
I waited a beat for dramatic affect and added a dash of self-pity to my timbre. “It’s like I have no choice.”
She emerged from the covers, exposing her zebra nightgown and those gorgeous legs.
“Yeah, yeah, alright. I get it,” she said, traces of false anger in her voice. “Help me out of this bed will you please?”
As we walked to the bathroom I thought, Can I squeeze a shower out of this? Or would that be pressing my luck?
I decided to not even try it. But I sure would use this tact again, happily and shamelessly.
Keep them coming God!
Thursday, October 15, 2009
Ready (finally!) to Give the Honest Scrap Award
Stef from 52 Weeks of Wordage - http://52weeksofwordage.blogspot.com/
Helen from Straight from Hel - http://straightfromhel.blogspot.com/
Laura from A Shift in Dimensions - http://lauraeno.blogspot.com/
Thank you again for the recognition! I love your blogs and am grateful for your support. I hope those who are reading this will pay a visit to their sites.
The award is meant to be passed on to bloggers who post from the heart, and the rules are simple: pass the award on to seven worthy blogs and list ten honest things about yourself.
Since I am new to the blogging world, I haven't had much exposure to many blogs. But there have been a few that have touched me in a short time. I'd like to pass the award on to 4 as follows:
Dr. Joseph Sivak from Caregiver Survival: I Hate Alzheimer's - http://alzheimmers.blogspot.com/ - I've been following Joe's blog for two months. His mother was diagnosed with Alzheimer's when he was 17 years old and he became her primary caregiver. As a doctor, he has treated many patients with AD. His blog is unique in that he has experienced the disease from both sides, professionally and personally. I've learned so much about the disease from his blog. His honesty shines right through every line.
Leslie from Something Brilliant is Brewing - http://willswimagain.blogspot.com/ - It has only been a few days that I've been reading Leslie's blog, but I was instantly moved by her honesty and lovely writing. She is on a weight loss journey and an inspiration to anyone who has travelled the same road.
Amanda Cooper from A Noodle In A Haystack - http://noodleinahaystack.blogspot.com/ - Amanda's blog had me and my mother up and jitterbugging yesterday morning. What a breath of fresh air! And a joy to anyone who has a passion for wonderful old movies, especially musicals and comedies. Where does the honesty come in? Let's just say 'Elizabeth Taylor.' :-)
Nancy Kopp from Writer Granny's World - http://writergrannysworld.blogspot.com/ - Nancy's blog is "A lot about my writer's world and a little about my personal world." Her writing, no matter which subject, is straight from her heart. It is something you feel as soon as you read her writing.
Thank you Joe, Leslie, Amanda, and Nancy for your honesty!
As for 10 honest things about me:
1) I love fresh fruit but absolutely will not eat fruit that is cooked.
2) I have never and will never taste any kind of fish. I just can't bring it to my lips and I have no idea why.
3) I am a vegetarian - I don't eat anything that had parents.
4) I have one sibling, Jim, who is ten years older than I, and I am happy about that seeing how my mother and her sisters fight!
5) My biggest passion or what I will fight wildly for, are animals and their rights.
6) Mornings are my best time. By 1p I have almost completely fizzled out.
7) I am beginning to lose my hair and have prepared myself to be as bald as my mother.
8) When I get tired, I twirl my hair.
9) Dan calls me a song slut. I will finish any song he starts and he often starts them just for that reason.
10) I am miserable when I'm hungry.
Tuesday, October 13, 2009
To smoke or not to smoke, that is the question
For years she took Xanax and has been pleading for those like a seasoned junkie. And almost every night she’ll ask for a drink.
“I want you to pick me up a bottle of scotch,” she said, head buried in her pocketbook as she rummaged for money.
“You can’t drink, Ma.”
“Since when do you tell me what I can do?” she said.
“I’m not telling you, your doctors are telling you. You can’t drink with your medicine.”
“What medicine? I don’t take medicine.”
“Ma, enough. You can’t drink.”
“Jesus, Mary, and Joseph.”
I counted ten seconds of silence.
“Just get me vodka. I don’t like vodka. I won’t even drink it.”
The other day she added a new vice to her portfolio of requests; cigarettes, her companions of 30 years ago. We were in the car waiting at a red light when she slapped two dollars on the dashboard.
“I want to start smoking again. Can you stop somewhere and get me a pack of cigarettes?”
“First of all, I’m not buying you cigarettes,” I said. “And second, if I did, I’m pretty sure they cost a lot more than $2.00.”
What ensued was a full-blown, voices raised, Italian style fight. And what I learned through the screaming is something I knew but hoped my mother didn’t; that Alzheimer’s has robbed her of more than just her memory, it has robbed her of independence. She said she felt ‘worthless,’ and it cut right to my heart.
It was a raw and drizzly day out on the porch when my mother lit up her first cigarette in decades.
“There she is!" Dan said, coming out onto the porch. “Smokestacks Calhoun!”
My mother ignored him and took a long drag. Her face contorted. She took another, then held the cigarette at eye level, scrutinizing it.
“This is disgusting,” she said. “Get this away from me.”
She thrust the cigarette toward me as she walked passed and into the house.
The good news is she hated it and has not requested another since. The better news is, in this case, the decision was hers.
My Life As a Daughter is back!
Thank you kindly for your emails and notes since I've been away from blogging. It has warmed my heart knowing that our story has touched and helped so many. Much has transpired over the past weeks and I look forward to sharing the details with you.
Alzheimer's continues to make itself very comfortable in my mother's mind. Stay tuned for the continuation of her/our story....
Lisa