Wednesday, October 28, 2009

"Help! I'm Drowning!"

Last week, while assisting my mother in the bathroom, I was nearly rendered unconscious by a pernicious odor wafting from her wet diaper. My instant concern was infection. Alzheimer’s Disease and infection do not marry well; infection magnifies it's symptoms. Because the evidence was in the diaper, my first thought was her urinary tract.

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’ve been thinking a lot about my Jo Jo. She and my mother had a complex, semi-dysfunctional relationship. I still don’t quite understand it, how they both wound up being such a huge part of each other’s lives. As for me, I am grateful. Jo was my constant, my steady stream of love. And she has been in my mind lately, planting happy thoughts and memories.

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..."

It happened three weeks ago. I was startled awake by the click of the front door closing. Looking back, I am astonished that a sound so slight and innocuous would awaken me from a sound sleep.

“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

*Photo* Top Row, Left to Right: my grandfather Antonio, my uncle Father Claude, my grandmother Palmira. Bottom Row: Aunt Connie

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

In August and September, I received the Honest Scrap Award from three wonderful bloggers:

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

My mother has been seeking ‘quick fixes’ again. Alzheimer’s is leaving her empty and fragile, like an egg with the guts sucked out of it, and she is trying to fill the void with old, unhealthy friends.

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!

Hello Everyone!

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

Thursday, September 17, 2009

A Break from Blogging

Hello Everyone,

I’ll need to stop writing this blog for a while but hope to ‘see’ you again soon.

Your readership and support has been a blessing to me. Your comments on both the subject and my writing have deeply touched me.

I wish you the very best, always.

Much happiness to you,
Lisa

Monday, September 14, 2009

Lovely and Twisted Recognition

My brother called last night with disturbing news; one of my mother’s oldest friends had passed away. Though my mother hadn’t seen Josie in years, the roots of their friendship grew deep; they had been neighbors in our small Italian community, talking to each other over clotheslines, and in the alleyway where our buildings married. Josie was even closer to my mother’s first cousin, Angie, so there were branches of her that spread throughout my family. “We were always together,” my mother said.

Ma’s immediate reaction to the news was physical. She started sweating, her face became flushed, and she jittered about with anxiety. When she hung up with my brother, she began talking quickly, firing questions at me that I could not answer. What did she die of? Where was she living? How did Jim (my brother) find out?

“I never got to see or talk with her. How can this just happen? I don’t understand,” my mother said. This death had pushed her to a place of perplexity; bewilderment hung all over her, and painful regret stomped on her heart for not having contact with Josie for years. I had absolutely no idea how to help her.

When Dan arrived home, I met him on the porch to warn him of my mother’s state and apprise him of her loss. When I told him who had died, he said, “She just called here about a month ago. Your mother talked with her.”

What? How could this be? I was bowled over.

I rushed in to tell my mother the news; she had indeed been in touch with Josie and just weeks before. She had spoken with her so there was no need to feel badly. She could lay regret to the side.

“That’s not possible. I don’t remember that at all,” my mother said.

“You did, Jill. I answered the phone, and a woman identified herself as an old friend of yours. You were confused until you heard Josie’s voice and then you were thrilled,” Dan said.

My mother was baffled, but within the confusion was a thin line of hope.

“What did I say to her?”

“I can’t remember exactly but the call lasted about five or ten minutes. You were happy though…I know that for sure.”

My mother turned to me and said, “Why can’t I remember? Not just this, but a lot of things.”

There was the briefest of pauses and in some sort of twisted recognition, she said, “I’m sick, aren’t I.”

Oh God, help me. She knows. In this moment, she knows.

“You are, Mum. You have Alzheimer’s.”

Her gaze did not waver. There was no fear, just enlightenment, like she had found something she didn't know was lost.

“Do I have it bad?”

“Not bad, no.” What was the point of saying otherwise?

“It’s ok Jill. There’s nothing to worry about. You’re ok here with us,” Dan said.

She nodded her head and then looked down at the floor.

“But Mum,” I said, “You spoke with Josie. You connected with her before she died. Isn’t that wonderful?”

She was deep in her own contemplation where my words fell unheard. I was alone wrapped in the loveliness of it; the two old souls had met in word, and not long ago. At least Josie would have had the pleasure of that memory, for awhile.

But I was also disturbed. My mother had suffered thinking she had not spoken to her friend in years. The horror of it made her frantic, and it was only by Dan’s revelation that she had a second of peace. She was tormented because she had forgotten. And her disease is all about forgetting.

When we were walking upstairs to bed, I put my arm around my mother’s shoulders and she put hers around my waist.

“Are you ok now?” I asked.

“I remember some of that conversation, I think. I remember Dan sitting on the couch there when he handed me the phone,” she said, pointing.

“That’s right, Jill. We were sitting facing each other,” Dan said, encouragingly.

I hoped it was true, her being granted the gift of remembering. And if she were to lose that memory, I wished for it to be bundled with the knowledge of her disease. If the good memory had to float away, I hoped it would take the bad one with it.

Sunday, September 13, 2009

Linda Burhan's "Good Night and God Bless"

I recently emailed with Linda Burhan who is the author of "Good Night and God Bless." Though I haven't yet read her book, I did connect to her webpage and watched her short video clip (and linked to her other pages). The clip offers some good caregiver advice and explains a bit about the challenges she faced.

The book itself is...

"A humorous and heartfelt story of her mother's last 18 months of life to inspire and assist anyone with the challenge of being the caregiver to a loved one. Her book offers hope for the understanding of human strengths and weaknesses experienced during a very difficult time."

If you'd like to take a closer look, here is a link to her website: http://www.goodnightandgodblessthebook.com/

Friday, September 11, 2009

Being the Mother I Would Have Been

Lisa and I were talking about her son’s first day of kindergarten; the potential perils of a school bus ride, whether or not he would easily make friends, how he would adapt to the new structure and environment.

I was flung back to the first day my mother attended her daycare program. A more anxious "parent" you’d be hard pressed to find. I agonized over her outfit, blanched at her crimson lipstick, thinking the women would find her tawdry. I drove her that first day and hovered for ten minutes, frantic for any indication of her mood. I called the center at lunchtime to see how she was faring.

When she came home, I studied her face like Magellan would the stars; were their signs of happiness or hurt? And then I almost knocked her over with questions.

“Did you make friends? Did anyone talk to you?”

“Of course people talked to me.”

“Were they nice?”

“They’re old.”

“YOU'RE old Ma.”

“Not like that.” Um, ok....

“Did you eat?”

“Oh yes, they serve a nice lunch.”

“What was it?”

“I don’t remember. But I ate it all.”

When she brought her first art project home, I nearly swooned. My mother wasn’t the sort to proudly display her children’s creations on the fridge, or keep them pressed in a yearly binder. The only items I have from my childhood are a pair of tiny brown and beaded moccasins, and one dainty, white shoe with a hole in the toe. Not a thing else. But her masterpieces I tack up on cork boards and showcase front and center on the fireplace mantle.

A do over for my childhood? Perhaps. Or just being the mother I would have been? More likely.

Lisa said, “You know Lee, we are doing the exact same things, for my son and your mother. We are washing, clothing, feeding, pampering and loving them. Finding the best programs for them to attend. Fawning over things they do and create. Even tucking them in at night. But I am doing it to help Joey grow…like a plant; pruning him, putting all my love into him in hopes he will be a good man, and you….”

“….I do it in hopes of a peaceful and easy end for my mother.”

We were silent. In a lot of ways, we are journeying the same road. The tasks we do nearly mirror each other. But in the end, the destinations are a lifetime apart.

Thursday, September 10, 2009

Potentially Inappropriate Medications for the Elderly According to the Revised Beers Criteria

Hello everyone,

I thought this list important to post. My mother was on two of these medications when she went into the hospital (and part of the reason she had to go).

http://www.dcri.duke.edu/ccge/curtis/beers.html

I've also heard one can hire a geriatric pharmacist to review a medication list for your elder. Here is a link to finding one in your area.

http://www.ccgp.org/consumer/locate.htm

Wednesday, September 9, 2009

The Case of the Flying Trousers

Not having children ill prepared me for my mother's care. I can cite numerous examples of this, but there will never be a more perfect illustration (I hope) than during a trip we took this past Sunday.

My mother, Dan and I planned to rendezvous with my mother’s youngest sister, Sylvia, in Connecticut. I warned my aunt that she shouldn’t plan for us to stay long; Ma is at the mercy of her disease and when the dementia drum beats, we march.

Having set my Aunt’s expectations, I packed a bit of food, music that we three like and…one adult diaper. I figured since my mother uses just one at daycare, we’d only need one for our trip.

We had just crossed the Connecticut border when my mother’s voice peeped from the back. “I think I just went to the bathroom.” Slight pause. “Oh God, I did.”

About three seconds later, the odor wafted stealthily to the front seats.

“Yup, you sure did, Jill!” Dan said.

“I still have to go…can we stop somewhere?”

Dan suggested we take the next exit; he knew of a Dunkin Donuts directly off it. However, the one to which he was referring turned out to be ten minutes away and back in Massachusetts. By that time, she had let loose whatever was remaining.

We eventually wound up at a gas station. I gingerly took off my mother’s pants, hoping to keep them as victimless as possible. But, alas, the loose stool had overtaken the diaper, seeped through the top edge, and sullied the upper part of my mother’s trousers.

“It’s all over your pants, Ma.”

“Jesus, Mary and Joseph.”

“I have to wash them in the sink.”

“But I don’t have any other pants.”

Yup, I know...and only one diaper.

Her nylon stockings were also saturated. I tossed those into the trash.

And then began the cleanup.

The cardboard box colored, industrial paper towels, standard to almost every rest stop bathroom, are not conducive to a quick and thorough loose stool cleanup. I tried using them wet, wet with soap, dry (“Lisa, that hurts!”) and back again for another full cycle. We were easily fifteen minutes in before she was un-pooped and presentable.

“OK, Ma…I know these pants are wet, but you have to put them on just ‘til we get to the car. Then you can take them off and we’ll figure out a way to dry them.”

Her skinny legs slipped into the last remaining diaper, and then into the wet and cold pants. Her naked feet went directly into her sneakers. I cleaned up the bathroom and informed the attendant that she may want to change the trash bag. To say the bathroom was evil-smelling was an understatement of the grandest proportion.

“Can we buy something to stop the diarrhea?”

Another item I should have packed.

Dan went back into the rest stop as I disrobed my mother again. We loaded her up on Imodium and draped a fleece jacket over her legs. Then, the idea struck; we’ll tie the bottom of her pants to the handle bar toward the inside roof of the car, fling the wet part out the window, and close it tight, thus trapping the pants half in/half out of the car. This provided a 70 mph, forty-five minute fly dry cycle.

When she saw her trousers flapping in the wind, she started to wail, “My pants! What are you doing with my pants? They are going to fall out!”

“Relax, Gilda Bear,” Dan said. “I tied them tightly. They aren’t going anywhere.”

“But now they’re gonna be all wrinkled. I want my pants in here now!”

“Settle down Ma!” I said. “They have to dry and this is the only way.”

“Jesus, Mary and Joseph.”

When the day was done and we arrived back home, I told the hapless tale to my best friend Lisa. She was flabbergasted.

“You didn’t have a change of clothes? Wipes? And you brought just ONE diaper?”

“How was I supposed to know?”

She gave me a semi-accusatory sigh, “OK, listen, I’ll make you a list…”

She has a six year old son so she knows. I never had children so I didn’t…until now.

Monday, September 7, 2009

Seeking Respite Care

My mother had been living with us for six months when my husband and I decided to use respite services. I was exhausted and depleted, and my anxiety level had hit a new and scary high. It was clearly time to take a break.

We had two options to consider; in-home private care, and outside “rest home” facilities. Luckily, the stay at home choice was easy; my niece works for a company that provides this type of service. Finding a rest home took a bit more exploration.

After a week of research, I settled on a facility that met most of my criteria. I examined the place like a seasoned detective; looking over the room where my mother would be staying, speaking at length with the director, and rubbing shoulders with the staff to get a feel for their compassion level. All I was missing was a little black notebook and a trench coat.

With the two choices in place, it was time to present the news of our vacation to my mother, and to have her weigh in on the options for her care while we were gone.

Alzheimer’s sufferers lose so much of their independence. Offering them a say in decision making, even minimally, restores a feeling of capability and even a sense of self. Unfortunately, my mother loathed both options. She wanted to stay home alone and didn’t understand why that wasn’t possible. In the end, the choice rested with us and we settled on the rest home.

The next round of thought focused on getting my mother to the facility. Would she refuse to get into the car? Hang on to the outside banisters white-knuckled and weeping? And if she did, what do I do? My caregiver support group furnished the answer; prepare her as best you can, but in the end, drop her off even if you have to lie about where she’s going. Leave the rest to the professionals once she passes the respite home’s doors. They are well versed in these situations and it would be counterproductive to step in.

But isn't that just downright mean? Leaving my mother kicking and screaming?

I got a resounding NO. Mean would be not taking care of myself and hence not providing a consistently safe and healthy place for my mother; the old “if the plane is crashing put your oxygen mask on first,” logic.

When the highly anticipated day of dread rounded the calendar, I was incapable of “sending my mother away.” I was heartbroken and overrun with guilt. Dan had to do the unpleasant deed, and anticlimactically, she didn’t give him much of a problem.

How I found my mother upon our return surprised me. She was in the recreation room listening to a two-piece band, smiling and tapping her foot to “old-time” music. She waved me over the second she saw me, grabbed me in a dancer’s embrace, and guided me through a foxtrot and jitterbug. Her eyes were glowing, she moved fluidly, and she seemed at peace…more alert and whole. Topping that, the staff had fallen completely in love with her and considered hiding her from us when we arrived to take her home.

All this made me think; am I doing the right thing by keeping my mother with me? I asked her about it when we got into the car.

“Mum, would you prefer to stay in a place like that? To live there instead of with us?”

“Don’t be ridiculous. There is nothing like your own home.”

Is that true I wondered? It was almost hard to believe when the differences in her demeanor were so glaring.

As for me, I spent the first two days of vacation wholly consumed with thoughts of my mother; was she swinging from the chandeliers, holed up in her room like a frightened turtle, or, heaven forbid given her most recent symptoms, chasing the young seventy year olds up and down the hallways? By night three I had finally given worry a rest. Unfortunately, it was only a four day vacation.

Saturday, September 5, 2009

Duping Dementia

Yesterday, my name mingled with the likes of Benedict Arnold and Judas Iscariot. I delivered my unsuspecting mother into the enemy hands of the bus driver.

The day started off like any other; begging and pleading (me), digging heels in and clutching the sheets like grim death (my mother).

“You know today is Friday, Ma, and Dan has people coming from work.”

“So?”

“So we have to leave, both of us.”

“Where my goin’?”

“To the Dream Center.”

“I’m not going to the Dream Center.”

Though my mother loves the Adult Day Health Program in the heart of Worcester, there are mornings when she just wants to stay in bed. In her case, however, a day without structure and stimulation means another creep forward for our friend dementia.

Five minutes into the battle, I knew I had to change tactics.

“Alright, fine. Then come to work with me.”

“To do what?”

“I have a kitty sit and a dog walk,”

“Jesus, Mary, and Joseph!” she said, whipping off the sheets and pulling on the pants I set out for her.

“The only thing is, I’m not telling the bus driver you're not going. She’s coming all the way from God knows where just to pick you up. You’re gonna have to do it yourself.”

“Fine, I will. It doesn’t bother me.”

I heard the bus about fifteen minutes later as it turned into our tiny dead end street, and the squeak of the breaks as it stopped in front of our house.

“She’s here, Ma.”

“Will you go tell her please?”

“I will NOT.”

“Jesus, Mary and Joseph!”

“Stop swearing!”

Out went my innocent and unwary mother. I grabbed her pocketbook and jacket and followed two paces behind. Half way down our small driveway, she called out, “Robbie, I’m not going in today, I’m gonna stay here with my daughter.”

Shaking my head wildly and mouthing the word "no" as if tutored by Marcel Marceau himself, I got my intent across to Robbie.

“What's that, Jill?” she said, craning her head and cupping her ear as if she couldn’t hear, hence getting my mother closer to the steps of the bus. Beautiful!

“I’m gonna stay here today with Lisa.”

“Oh, come on! We’ll have fun today. Get in, and let’s blow this joint,” Nice touch, using one of my mother’s favorite expressions!

I patted my mother’s bum and said “Up you go, Ma. You’ll have a great time.” And before the poor old woman could get what was left of her bearings, I draped her pocketbook over her shoulder, slung her jacket over her arm, and nudged her up the third and final step.

Robbie gave me a big smile as the doors closed. We did a mental goal-line dance.

I’ve JUST started to feel comfortable using any means, honest or misleading, to get my mother to daycare. The benefit to her far outweighs the guilt I might feel. And if I have to go into the annals of family history as a traitor because of it, so be it.

Thursday, September 3, 2009

Confirmation: Hello Stages 5 and 6

Mom had an appointment today with her geriatric nurse practitioner. We meet with her every 4 to 6 weeks to tweak her medications and discuss her overall health and mental decline.

The visit went much as it always does; mom shocked and confused when we talked about her meds. Horrified and suspicious when we talked about her Alzheimer’s.

“I’m petrified of that disease,” she said, and it's true. For years, she would badger our general practitioner in Boston about her fear of getting Alzheimer’s. He would answer, “Don’t worry, you won’t know it if you do.” She laughed and recited that line for decades.

It was evident my mother had gotten worse in the six weeks since her last visit; her hands were wringing and twisting, she was less animated, and she was seeking out the no-no drugs like Ativan and Xanax.

Then, the standard questions' test:

“What day is it?”

Mom looked over at me, hoping for the answer. She wasn’t getting anything here.

“Monday?”

“It’s Thursday. What year is it?”

“1999?”

“It’s 2009. What season are we in?”

“fall?”

“Yes! Very good. How old are you?”

“That’s easy, 82.”

“Ma,” I asked, “how old am I?”

“50?”

“What? Thanks a lot!”

I described in detail the changes I’ve noticed and how she’s been functioning at home. My mother’s eyes turned into tiny cracks as she regarded me with suspicion. Since she has no recollection of anything, everything I say is a lie.

I asked the NP if she thought my mother was between Stages 5 and 6 and she said yes. Seems I was right on the money.

As we waited for the elevator after the appointment, I asked my mother if she was ok.

“Yeah, just tired.”

I took her arm and weaved it through mine. I could tell she was confused and embarrassed again. She kept looking down at the rug, as if in deep concentration. What she was thinking only she knew, but I wasn't worried - if they were plaguing thoughts, they'd be lost to her within moments.

Wednesday, September 2, 2009

Walking into the Next Stage Together

My mother and I crossed paths in the hallway last night, just before bed. Though we were mere inches from each other, she didn’t notice I was there. Or, more accurately, it seemed as if she herself was someplace else.

“That bastard Mario. I’ll bet he’s f******every girl in East Boston tonight,” she muttered.

Two things immediately struck me as odd and sent an alert tramping up my spine.

1) Whenever she speaks of my father, it is always as her husband. She has never regressed to their relationship pre-marriage when he lived in East Boston.

2) Though my mother can curse better than a foot soldier in the Army, I’ve never ever heard her use the “f” word in this way. As an adjective? Absolutely. But as a verb? Only in the deep heat of an argument and even then, sparingly. Sure, she’ll say it often in Italian. But all curse words lose weight to those of us who aren’t native to the language.

Though I know it is better not to draw attention to the memory loss (or memory shift in this case), I was unable to keep silent. I was frightened for her; the absent look, the change in speech. If these were signs of her entering the next stage of dementia, I was going in with her.

“Daddy is dead, Ma.” I said.

She turned and gazed at me through muddy eyes; half seeing, half mired in the muck.

“What?”

“He’s been dead for thirty-three years.”

“Oh,” she looked down at the floor. “Who’s my boyfriend then?”

“Do you mean Norman?”

“No…forget about it.” She was not only confused but also seemed embarrassed.

I waited a few beats and then went into her room. She was already under the covers, only her naked head peeking out. I eased myself down beside her and spooned her close.

“Are you ok now?”

“I didn’t understand. I was confused. I really thought…”

“I know Mummy. It’s ok.”

I stayed only a minute longer. She can sometimes get annoyed with physical affection, and I didn’t want to add another stressor to the night.

The progression of these symptoms leads me to believe my mother is now somewhere between Stages 5 and 6 of Alzheimer’s.* We are seeing her doctor on Thursday and I’ll ask for a professional verdict then.

In the meantime, I must find a way to accept new manifestations of this illness when and how they present themselves. This is not a disease that gets better. There is currently no cure, and drugs only work to slow the process or treat the symptoms (minimally on both counts).** The disease never goes into remission, and there are no Alzheimer survivors.

*http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp
**http://www.alz.org/alzheimers_disease_treatments.asp

Tuesday, September 1, 2009

The Alzheimer’s Genome Project: From Genes to Therapies

The 'Cure Alzheimer's Fund' is hosting a presentation at Boston’s Massachusetts General Hospital on September 16, 2009 at 6pm. The invite was extended to me with permission to forward it to anyone who would be interested.

The RSVP details are below as well as a link to the Genome Project info and the Cure Alzheimer's Fund website. There is lots of good information on the website so please visit it if you know someone affected by the disease.

The Alzheimer’s Genome Project: From Genes to Therapies
By Dr. Rudolph Tanzi
Kennedy Chair of Neurology at Harvard Medical School and Director of Genetics and Aging Research at Massachusetts General Hospital

LOCATION:
O’Keefe Auditorium
Massachusetts General Hospital
55 Fruit Street
Boston, MA 02114

Light Refreshments

RSVP to kcutler@curealzfund.org or 781-237-3800

To read more about the Alzheimer's Genome Project, please visit -

http://www.curealzfund.org/index.php?option=com_content&task=view&id=160&Itemid=77

Monday, August 31, 2009

Honest Scrap Award

I would like to thank my fellow bloggers, Laura Eno and Stef, for honoring me with the Honest Scrap Award - a recognition given to bloggers who post from the heart. I appreciate the award very much and hope to continue to be worthy of it.

Stef's blog - http://52weeksofwordage.blogspot.com/. A great site which offers daily writing exercises.

Laura's blog - http://lauraeno.blogspot.com/. You will find and enjoy Laura's beautifully written fiction here.


Thanks again!

Sunday's Soap Opera

My mother is a bathing enigma. For a woman who hates to shower, you would think her choice of soap would be a non-issue. Not so. She needs a hardy bar; no frou-frou body washes in lemon verbena or wistful lavender. Moreover, it has to be fairly new. Anything under a third of a square and I’m in for some colorful language.

I don’t know what happened in her childhood to cause this obsession. My mother came from a poor immigrant family and suffered through the Depression. You’d think she’d wring every last froth out of a soap cake.

Whatever the reason, I refuse to throw away perfectly good slabs of usable soap. If we have to resort to a bit of shower gel with her bar every now and then to shore it up, so be it.

Yesterday morning, I hadn’t checked the dish before she got into the shower. I like to prepare myself in the event of an oncoming soap diatribe.

Madon, but there is never any soap in this house.”

“Ma, there is a perfectly good portion right there in the dish.”

“What…this?” she said, grabbing the offensive beige-colored piece, eyeing it with disgust. “What am I gonna do with this?”

“Are you kidding me? There's almost half a bar there!”

A fangula,” she said disgustedly, and slammed the curtain shut.

Mere moments later, out of the corner of my eye, I saw a tip of the curtain open. A sloppy and slimy wedge flew out and hit the wall with a mushy thud. The projectile lay dead at my feet – the soap bar in a pyre of its own suds.

I pulled open the shower curtain and there was my half washed mother, a sparkle in her eye, proffering an empty facecloth.

If a new bar wasn’t two floors down in our basement closet, I would have gladly gotten it just for the laugh she gave me. It was too risky though; four flights in total provide plenty of time to flee the shower for a woman who hates to bathe and is soapless.

Saturday, August 29, 2009

Not Much Room to Move Forward

It was in my mother’s repose last night, as I watched her breathing from the bedroom doorway, her perfectly bald head the only part of her visible from the sheets, that I glimpsed her as a woman whose brain is being molested by dementia, and not my mother with whom I have a painful and complicated past. It is in these moments that I experience a powerful tenderness toward her, and the choice I made to have her live with us settles easily within me. It is when I am struck by her frailty, that I feel a connection to her that is pure and uncomplicated.

However, it is not always so. Caring for the woman who is at the root of a forest full of hurtful memories is rarely easy and always confusing; She must live here because I could have it no other way - yet there are days I can’t bare being in the house with her. I do everything I can to keep her safe and healthy - yet having her live for years like this and with me is incomprehensible. The emotions are in constant battle with each other and I’ve often just sat and wondered who I was, and what side of the war I was on. Am I the girl who wants to run miles away from her mother, or the woman who would have her mother’s care in no one else’s hands but her own?

The past few months have been particularly rough. I haven’t fully come to terms with her disease or the role I’ve chosen in her life as caretaker. There are weeks of particularly intense confusion where I’ve grasped at any possible strategy for relief, searching for extended moment when I’d see “Lisa,” again and get a grip on who she is.

I’ve pondered, “Can I just pretend there isn’t a past? Is there a way I can look at my mother as if today is the beginning of our relationship?” Even the woman who fights me to get up in the morning, the woman who rarely says ‘thank you’ or gives me a kiss, is preferred over the indifferent other I spent my childhood with. Can we start from her dementia on?

There are days I try this by concentrating just on the moment, being present fully in the here and now without the clouds of the past looming overhead. Those are good days. Then there are days when I wake up knowing the past has been sleeping cuddled beside me and will cling to me like the hairs on my skin. Those are bad days.

Perhaps as the months move on and she and I live in our new world together, I’ll find a more constant place of peace; a world where the battle between the girl and the woman is over and the new and real Lisa emerges. But now, with one foot mostly in my childhood, there is not much room to move forward.

Thursday, August 27, 2009

Sometimes Crash Courses Don’t Work

Dan and I planned a second trip with my mother about a month after Cooperstown. We had the bullet points neatly lined up; no overnights, someplace familiar, and nothing far away so a long drive wouldn’t exhausted her. We settled on Newport, Rhode Island. She had been there before and loved it. The shops are plentiful and quaint, the mansions are spectacular, and the ocean meets the shore in gorgeous white sprays. We figured we’d tour one mansion, eat, and then browse a few shops if she was up to it.

We purchased tickets to Astor’s Beechwood Estate. It stood stout and grand amidst the emerald lawn, the ocean glowing at its back. I got out of the car and took a deep, refreshing breath.

“What is this place?” my mother said suspiciously.

“This was the vacation home of the Astor’s, Ma, do you believe it?” I said. “They only lived here about 8 weeks out of the year.”

“What? Who are the Astor’s? Do I know them?” Her gaze swept the breadth of the house. “I don’t like it here.”

A tickle of apprehension sprouted at the back of my belly, but I mowed it down. I wanted her so much to enjoy this.

“No no, Ma. You’ll love it! Wait til you see the inside.” I said enthusiastically. “Let’s hurry, the tour is starting soon.”

The tour began shortly after our arrival - A day in the life of Mrs. Astor circa 1891. We would be taken around by her “daughter,” in complete period dress, with maids scurrying about, cooks asking questions, everyone speaking in haughty English.

“Why are they talking like that? I don’t understand what they are saying.”

I glanced at my mother. We had only been touring for five minutes and her skin at the rim of her wig was drenched in sweat.

“I don’t know where I am,” she said. “I feel sick and dizzy.”

The panic came quickly for me. “Dan, I have to get her out of here.” I said, holding my mother firmly under the arm. We exited to crisp, salty air.

“Mummy, it’s ok now. Do you want to sit here a bit and look at the ocean or do you want to leave?”

“I wanna leave. This place is strange. I hate it.”

“Just stay right here then and I’ll get Dan. Can you sit here for a minute alone?”

“Yeah…hurry though.”

Thus began the slow and steady barrage of self-recrimination. How could I have been so stupid? 1891? Might as well have put the woman on the moon.

I ran back to the entrance and asked the ticket attendant to please ask my husband to come outside.

“How is she?” he said.

“Not good. We have to get her someplace familiar and I think she needs to eat.”

As soon as Dan saw my mother he lifted her to her feet. “What’s going on Gilda Bear? How do you feel?”

“I’m sorry Dan. I just feel sick.”

“No problem. Lisa and I have been here many times before so we aren't missing anything.”

“Are you sure?”

“Of course I’m sure!” he said, rubbing her back. “How about some food?”

“I don’t care,” she answered, gripping his hand.

We decided on an Italian restaurant. At least the food and atmosphere would be familiar, she being the daughter of Italian immigrants. We even had a table of visitors from Italy to eavesdrop on. The restaurant was serving gnocchi, one of my mother’s favorites. God was shoring up the defensive plan nicely.

Within twenty minutes my mother was better. Dan and she were joking, as I was beating myself up with a caveman’s club, shrinking lower and lower in my seat.

I finally got it. I thought I had before but this was the clincher.

What I hope might be wonderful for my mother means nothing to the demon that is dementia. Familiar is not a place she visited once or twice. Familiar is a place with decades’ worth of memories so when a handful is taken away by her illness she still feels safe.

Tuesday, August 25, 2009

Through the Eyes of Friends

I often feel as if my mother, Dan and I are in a bubble; a trilogy of seclusion in a world of strangeness. But lately, I’ve had the chance to see my mother through the eyes of those who knew her before dementia started robbing her of herself.

My best and oldest friend of twenty-eight years, also named Lisa, has loved my mother with an honesty and freeness one can have with someone who is like a mother, but isn’t. There was a time when they spent entire weeks together. Lisa knew my mother’s affect prior to dementia as much as any daughter would.

Lisa gave me her impressions through an aching heart when we visited her:

“When she saw me in the past, she'd say ‘LEE!’ with authentic excitement and happiness. Now it’s simply ‘hi lee,’- not unhappy but subdued. When she asked me questions she clearly should have known the answers to, that was the very first hit for me of, ‘Wow she has this terrible disease,’ and my heart dropped into my stomach.

She continued…

I heard an unexplainable emptiness in her words and saw the same in her eyes. She was there physically but she was a shell of what she used to be. I just keep saying in my mind over and over, ‘Give me back my Jilly Girl,’and I felt sick knowing this is just the beginning.”

My dear friend Tami came to visit this weekend with her nine year old son. The picture is one I snapped while they were together. Tami said:

“The whole time we were together Gilda and I chatted just like we always have. Well that isn't true - almost like we did. It was like talking to someone through a screen door - not like glass where you can't hear someone or physically touch them. Our hearing was fine and we touched through the screen but not completely. We still had warmth and a connection, but something was lost among the tiny places where the screen was between us. I suppose the screen will be replaced with glass one day but I will be there, looking in, even if Gilda doesn't remember tomorrow.”

Hearing outside impressions of who my mother has become broke my heart in yet another place, but also offered a bizarre salve of understanding - “Now they know. Now they truly understand.” Daily phone calls of explanation just don’t cut to the brutal reality of the disease. Hearing the confusion and pain in my voice does not come close to a personal whisper of dementia fresh on your skin.

Monday, August 24, 2009

Looks Like We Hit the Love Jackpot

My mother has been talking about sexual intimacy…a lot. I spoke with her geriatric nurse practitioner about it and apparently this is another symptom of Alzheimer’s Disease; either sexual desire will decrease due to depression, or the changes in the brain increase the need for intimacy and physicality.* In my mother’s case, it looks like we hit the love jackpot.

We knew something wasn’t quite right when she started talking about her physical relationship with my father (what every daughter longs to hear), who passed away thirty-three years ago. I usually shield my ears from her saucy conversation and run from the room, a sour expression plastered on my face.

But then the discussion will manifest into current desire - feeling lonely and needing and wanting a man to share her life with now. She’ll often speak of old loves, most frequently a man she dated before she married my father. She has never forgotten him, pre- or post- dementia.

“He was so handsome,” her voice lowered to an awed hush. “His name was Norman Miller and he was the foreman in the sewing factory where I worked.

“He’d leave me a piece of candy in my drawer every day, and my sister Connie would be mad because she liked him too.

“I would see him on Friday nights and your father on Saturday nights.”

“What?” I responded. “What did Daddy think of that?”

“He didn’t know,” hint of a tiny smile on her face.

“One Friday night Norman took me back to the factory…

Oh no…here it comes…

“and in the office was a large couch…

la la la…I can’t hear you…

“I tell you, only by the grace of God did we have the strength to stop…

Can we have a little of that grace now to stop this conversation?…

“Otherwise…otherwise…

“What Jill?” I didn’t know Dan had been listening. “Would it have been Miller Time?”

What I find truly tragic, probably among the most tragic of the disease for her to date, is that now, when the need has finally re-awakened, it is from that part of her brain that is afflicted. And I don’t know how to help her when I find her in the kitchen at night searching through the phone book for Norman or for other childhood loves, and sometimes, even for my father.

*Alzheimer Care - Intimacy and Sexuality - http://www.alzheimer.ca/english/care/ethics-intimacy.htm

Saturday, August 22, 2009

A Crash Course In Travel

Regret was chief among the myriad of emotions that flowed through me when my mother was diagnosed. There were places she had longed to see her entire life and I was determined to take her to them before her disease progressed. One of those places marched to the forefront of my mind - The Baseball Hall of Fame in Cooperstown, NY. It seemed like the perfect first trip - close enough to home if there were any issues / far enough to feel like a special vacation.

So about three months after she was released from the hospital, we arrived at the Inn where we planned to stay three nights…just as Ma was sundowning.* She walked into her room across the hall from us and instantly had a panicked reaction.

“This place is strange. I feel funny here. I don’t like this room.”

Being the novice that I was (and still am to some degree), I became terribly alarmed. I practically ran to the front desk, explained my mother’s condition, and asked if we could view other rooms to see where she might feel more comfortable. Instead of having her relax for a bit which would have been the most beneficial, I, in my own panicked state, traipsed her from room to room. I couldn’t even stop long enough to listen to Dan who was trying to get me to calm down. Mom couldn’t decide on a new room of course so I picked another that seemed “prettier.” She laid down to rest.

“Dan, what are we going to do?” I asked, crying. “We can’t stay here for three nights. This was a HUGE mistake! I have to tell the front desk we need to leave in the morning.”

“Honey, let’s think this through a minute. We know she is sundowning and she is exhausted. Let’s wait until after supper and see how she is then.”

I stopped to ruminate over that…my mind viewing the next three days through a cloudy crystal ball.

“No, we have to get out of here as soon as possible…” I shot from his arms and headed back to the front desk.

“Wait a second, hon…”

“No I can’t! This is all wrong. This isn’t going to work!” I had to fix this, to get things in order immediately. I needed to squelch the rising need to vomit by taking prompt action.

When we headed out for supper an hour later, my mother was calm and in good spirits. We ate a lovely meal and she and Dan were laughing and exclaiming over the food while I watched her every move like a starved hawk searching for prey. There was nothing to see. She was better, no doubt about it.

The Inn-keeper had been so gracious that I didn’t feel right changing our plans again. We enjoyed that one wonderful day at the Baseball Hall of Fame where my mother read old letters and contracts, viewed memorabilia, and marveled over details about her favorite players.

As we headed home after that one night, my mother said, “This was nice...”

Dan looked over at me, smiled and squeezed my hand.

“...but I’m tired now and want to go home.”

That trip was a crash course in travel with my mother who has dementia. Within two days, she had no memory of having been to the Baseball Hall of Fame. I realized, then, that there was no rush or even any reason to take her to the places she had wanted to visit in her lifetime.

*‘Sundowning is a phenomenon unique to Alzheimer's disease where the person becomes more confused and agitated in the late afternoon and early evening.’ http://alzheimers.about.com/od/caregiving/qt/sundowning.htm

Thursday, August 20, 2009

I Get a Kick Out of You

I entered my mother’s bedroom this morning confidently singing “Nathan Detroit,” from Guys and Dolls. When her body didn’t wiggle under the cotton blanket, I knew there was potential for trouble. The look she shot me over the edge of the pink-flowered sheet confirmed it; this would not be a happy sing-along morning.

“Time to get up!” I said in my best June Cleaver voice.

“Whe’re my goin’?”

“You know where Ma, to the Dream Center.”

“I’m not goin’ today.”

“Ma, today is Thursday,” deep breathe, ”and you know Dan works from home on Tuesdays and Thursdays,” quick prayer, “He needs the house for the other developers.” Huge lie, and one that is apparently losing its power.

“I’ll stay in the room…”

“You know they have to come in here.”

“I’ll go in the basement.”

“They have to work there too.”

“I am not going…”

“If he loses his job we’ll both be out on the streets.”

“Good. What do I care.”

I called in reinforcements (Dan) but even his charm lacked its potency.

What transpired then was the worst morning I have spent thus far with my mother. There was name calling, “You’re a jerk!” Attempts to instill guilt, “I have a sore throat…how can you push me out of bed?” And then…the kick.

My mother was called Betty Grable by the neighborhood boys for the glory of her perfectly shaped legs and they haven’t lost an ounce of their beauty. But when one of them is coming at you with the power of a freight train, it’s not so pretty. And she’s strong! Her mind is a crinkled pickle but her body has maintained most of its muscle.

She brought her knee up as far as it would go over her pot-bellied middle and extended her leg with the force of an aging Ninja. She caught me right on the upper thigh.

“You just kicked me…” I said incredulously.

“Yeah, that’s right.” Not a speck of remorse.

“How could you do that?”

“Want me to do it again?”

But I had to get her up. One day out of daycare and my mother begins to lose what I call her peripheries; time, location (which is already sketchy), general purpose. We have an issue on the weekends when her schedule is interrupted. She is most confused on Sundays after a day of unstructured activity.

Twenty minutes later (of unadulterated torture) and she was dressed (without a shower). My heart and head were swirling with emotion, and my body couldn’t hold either in check. I had to ask Dan to “take it from here.”

He walked her out to the bus, trying to engage her in cheerful conversation. All I heard in return were nasty mutterings. We never said goodbye.

I wonder sometimes if it is the woman with dementia who is fighting me, or an 82-year old who is just plain tired and wants to spend the morning in bed. And that’s when the guilt sets in. How do I know?

I called daycare to “warn” them of the geriatric beast that was about to descend upon them. The director of the facility threw me the lifeline I needed. “She is never tired when she gets here, Lisa. Ever. It is the dementia. You did the right thing for her.”

Now dry your eyes girl and get on with your day…

Wednesday, August 19, 2009

In the Beginning - Part One

My mother always hated living alone. She grew up experiencing certain trauma which led to a life of chronic depression. Having family surround her made her feel safe -she could remain outside of her plagued thoughts if she were constantly engaged. So when reports of strange behavior came from the retirement community in which she lived, I thought it was her way of manipulating me to have her live with us. My mother and I have a “past,” and this was certainly plausible.

At first, there were signs of general depression; not getting out of bed, no interest in food, etc. But then stranger symptoms arose, ones I had never seen before; confusing her medications, forgetting to pay bills, not remembering we had spoken earlier in the day.

My instinct was to get her to a psychiatrist, and quick. She had been on the same medications for depression for 8 years - perhaps her body had become immune. The doctor, who was not a geriatric psychiatrist (big mistake), added Abilify to boost her Cymbalta, increased her Xanax to help with anxiety, and advised it was ok to increase her Tylenol PM in the evening to help her sleep. Based on her symptoms, he said she also had dementia (in addition to depression) and added Aricept.

After two months on these meds, and tweaking them bi-weekly, my mother was falling every fifth or sixth step, hallucinating, losing all sense of time, and completely panic-stricken to be alone, claiming every night she was at her friend’s house and could not be there when her husband returned.

Something was seriously wrong.

Around this time, I learned about a program run by McLean Hospital in Belmont, Mass, devoted exclusively to geriatric neuropsychiatry, specifically dementia and Alzheimer’s.* I called my mother’s doctor asking he do whatever it took to get her into the program. Within two days and lots of badgering (of which I am not ashamed), she had a bed at McLean. I left her there, both of us crying and saying goodbye, as she begged me not to leave her.

The program and the highly specialized doctors at McLean saved my mother’s life. Abilify and Xanax increase the symptoms of dementia, and any of the over the counter PM drugs contain benadryl which is toxic to the geriatric brain (anyone over 65).** Her brain was literally being cooked and destroyed. They immediately detoxified her from Xanax, stopped the Abilify and started her on a regimen of drugs that has brought her back as far as she could come.

And then we had a final verdict; she absolutely could not live alone and had to be in a daycare program at least three times a week or her condition would worsen.

I heard that gavel fall and my worst dream came true…my mother would be moving in with us.

*McLean Hospital Geriatric Neuropsychiatry - http://www.mclean.harvard.edu/patient/geriatrics/gnu.php

**One of many articles on benadryl and dementia
http://www.healthcentral.com/alzheimers/news-290406-98.html

Tuesday, August 18, 2009

In The Genes?

Aunt Connie, my mother’s oldest sister, was diagnosed with Alzheimer’s about a month after my mother was. Is this a coincidence? My cousins and I sure hope so.

Though no specific gene has been found which proves Alzheimer’s is hereditary (unless it is Familial Alzheimer’s Disease – FAD – which is rare), Alzheimer’s has been known to show up in families as “clusters.” Having my aunt and mother in the same cluster has been a blessing for the support we girls give each other, but also a curse as it doubles our pain. We share the same nightmare and hope one of us is strong enough at any given time to see the other out of tomorrow's dream.

When the fear and frustration become overwhelming, we’ll often resort to humor tinged with guilt for laughing until we can’t breathe. Our favorite scenario includes the inflicted siblings sharing a room in an elder facility. But would they share it as sisters or strangers?

“What if they meet each other and MY mother says to YOUR mother, “Wow, you look just like one of my sisters….oh, what's her name….” I’ll say.

“No, no!” Joan interrupts, “What if I show up at the home and YOUR mother introduces me to MY mother as her niece, and my mother says – nice to meet you?”

But there's always a flip side. My cousin Deb (Connie’s other daughter) and I will often discuss where we will be if our fates turn out to be the same as our mothers’. Neither of us has children. Who will be our “Lisa” and “Deb” and “Joan?”

“Well, then…we’ll have to go into a home together,” Joan will say, “and just turn the place upside down!”

In the meantime, we do our best to keep active, eat right, and exercise our brains. And when things get tough…we laugh through mingled tears.

The 4 Pillars of Alzheimer's Prevention - http://www.alzheimersprevention.org/intro_4_pillars.htm

Monday, August 17, 2009

A Trip to the Dentist

My mother hasn’t been to a dentist since before they had Novocain. That isn’t exactly true, but pretty close. She has avoided going for the past 10 years due to intense and irrational fear, interesting for a woman who labored 36 hours with my brother. Add in her dementia and I knew we were in for an interesting afternoon.

I realized something was wrong with her teeth when she started refusing a scoop of ice cream with her pie, and began asking for water straight from the tap instead of nicely chilled from the fridge.

“Ma, do your teeth hurt?”

“They’re killing me.”

“Shall I make an appointment with the dentist?”

“Yeah, I think I have to go.”

That was easy. Or so I thought…

It began in the car.

“Why am I going?”

“Because you said your teeth hurt.”

“Oh.” Pause. “Well, they don’t hurt anymore.”

“Ma.”

“Jesus, Mary and Joseph!”

“Don’t SWEAR.”

We arrive at the dentist and she continues.

“This looks like a third rate place. Why is it so hot in here? Dentists make me sick!” The last said just a bit louder than I would have liked.

“STOP it.” I said through clenched teeth. “Settle down right now.” She huffed at that. She rarely takes me seriously. But then again, I am a daughter reprimanding her mother…what is there to take seriously?

I filled out the paperwork, recording her extensive list of medications and filling in the circle marked Alzheimer’s, something I will never get used to. When it came time for her to sign, I saw her honing in on that little spot.

Oh no…here it comes.

“I don’t have Alzheimer’s. Why did you check that??”

“You have dementia, Ma.”

“Who said?”

“Your doctor.”

“I haven’t been to a doctor in years!” she sneered and gave me the, 'what are you scheming,' look. She let out a hard breath. “My God, why is it so HOT in here.”

“Take your wig off Ma. You’ll feel cooler and no one will care.”

“Are you high?” She heard that in a movie years ago and it has been one of her favorite lines ever since. Amazing sometimes what she DOES remember.

We were ushered into the office and the hygienist, who couldn't have been more patient with her, began to look over her chart. “So you have high blood pressure?”

“High blood pressure? I have NEVER had high blood pressure in my life.”

“Ma, you do now…that is why you take Atenolol every morning.”

“What? I don’t take Atenolol. I don’t take any pills.” In her world, she takes no meds. In reality, she takes them 4x a day.

I turned to the hygienist and explained that my mother does in fact take all the pills listed and has high blood pressure.

My mother shot me that crinkly-eyed look again.

The hygienist stepped out for a moment.

“I’m gonna die of this heat!”

“Take off your wig!”

She wrenched it from her head and threw it to me.

“Now don’t you feel better?”

“Actually, I do.” Score one for Lisa!

The exam went as well as it could for teeth that have been neglected for a decade. The doctor viewed the X-Rays and gave the final diagnosis (cavities, gum recession, possible extractions). Then the doctor hit us with a big one.

“You must brush your teeth every night Mrs. Pasto, and lather then with a paste I’m going to give you, especially near the gum line.”

I’m sorry, what was that? Did you say my mother had to brush her teeth every night? And then add a paste? While you're at it, perhaps you can tell me how I can get her in the shower.

She didn’t get a lollipop or gold star when she left. She did, however, begin to put on her wig.

“Ma, what’s the point? Just keep it off.”

She threw the wig on the receptionist’s desk. There it sat, looking like a frizzy, startled cat.

Both people behind the desk froze.

“How about putting it in your pocketbook?” She stuffed it in and off we went.

Oh, won't the extractions be fun!

Sunday, August 16, 2009

No Daughter = Better Day?

Yesterday was a good day for my mother. She spent almost all of it without me. I can’t help but wonder, is there a connection?

Dan attended a family party and brought her as his date. As soon as she woke up there was clarity to her thoughts that I haven’t seen in a long while. It was as if the sheer grey curtains that hang over her were pushed away, offering her mind a clearer view outside. I noticed it in her speech, the quick connections she made, even in how she looked at things and at me.

Instead of complaining, she was eager to get washed and dressed. She looked beautiful in white pants and a navy top, “rouge” on her cheeks and a nice shade of red lipstick. She left the house on Dan’s arm with a quick smile back at me.

About 2 hours into the day, I texted Dan.

“How’s it going?” - Me

“Excellent. Your Ma is interacting well.” – Dan

“She is a joy today.” – Dan

A JOY??

“Did she eat?” – Lisa

“She loved everything.” – Dan

It is true that Dan interacts with my mother in a gentler, more accepting way. He has an ease with her that I don’t have, and probably never did. Dan and I have discussed this and agree that he knows and loves her without the hindrance of a long and mostly painful history. I, on the other hand, have 41 years of not the best of times stacked up against and sticking to me. Hence, he comes to her fresh and I come to her stale and moldy.

In addition, her care is always at the forefront of my mind. I don’t view her as "my mother"...she is "my mother that I’m taking care of." There has to be a shiny patina of that all over me…anxiety, resentment, concern, fear, sadness. Though I try to keep those feelings in check, she’d have to have more than dementia not to sense these looming emotions.

Perhaps she is freer with Dan because he doesn’t view her as a sick woman he is burdened with (though he is her caretaker too), and hence she feels happier and healthier around him? Perhaps with me she is less radiant because my heavy emotions, no matter how I work to conceal them, steal her lightness?

I’m beginning to think this is the case.

Saturday, August 15, 2009

No Nurse, No Dogs

Getting Ma up in the morning presents one of the more difficult challenges. Sometimes it goes so well I can forget how bad it can be. Other times it’s all out war with name calling and such intense anger it creates a third person in the room.

“You’d make a great prison warden,” she’ll say on a good day when she heads into the bathroom. Bad days have her clutching the sheets tight under her chin, and what she calls me isn’t so funny.

The uncertainly of what I'd find in my mother's bedroom every morning caused great anxiety for me at first. (It is much better now due to strategies I’ve learned, but that’s a blog for another day.)

And there was an additional issue - I had to care for dog clients in the morning. Doing that and getting home in time to get her ready for daycare was exhausting, and sometimes just plain impossible.

Enter “the Nurse.”

A caring and gentle woman provided by Elder Services began helping from 8a to 9:30a every morning. She would get Ma up, make sure she got into the bathroom (I would help her bathe the night before), prepare her breakfast and then see her onto the bus.

BUT, my mother hated it and was confused.

“Why is she here?”

“Because I have to work in the morning and someone has to help you get up and ready.”

“I don’t need any help getting up…what am I a baby? Just set the alarm and I’ll get ready myself.”

Dan burst out laughing at this, having gone through song and dance himself to get “Gilda Bear” out of bed (sometimes literally singing and dancing).

"What are you laughing at Dan?"

"Jill, don't you know what you put Lisa through every morning??" Dan responded.

"Oh stop it, will you please." with the wave of the hand.

After 8 days, Dan and I realized the nurse just wasn’t working out. My mother resented and disliked a stranger caring for her, couldn’t grasp why she was there, and honestly believed she could do all she used to do prior to her illness. In addition, whenever my mother got a bit more vocal (and once physical) in her demand to stay in bed, the nurse would crumble and call me or Dan to be the heavy.

So the big decision finally had to be made; do I give up my dog clients to be more available for my mother? I could still keep my cats and one of my dogs - the canine love of my life, Sandy. But I’d have to find sitters for the others, my furry family that made up such a big part of my world.

Approached by every avenue, ruminated and picked over until there were less than bones, the answer always came up the same - I had to be there for my mother.

I remember driving one day and speaking to my friend Robin on the phone. I was telling her how much my heart hurt because of what I’d given up. She said, “But you gained balance. You still have animals to love and you are home more for not only your mother but your husband and your own kitties. It was a smart thing to do and you are strong for doing it.”

She was right. This was a positive thing. I gave up something, but not everything. And I gained peace of mind - my mother’s care would be in my hands, ultimately more loving than any other set out there. I’d have more time to care for my house and family; prepare better meals, keep up with laundry, etc. And I realized too that this was only the beginning of my own life’s changes in this journey with my mother. This wouldn’t be the last tough decision.

Friday, August 14, 2009

Sewing in the Morning

This morning was a particularly interesting one - a demonstration of how sadness can be tied up in comedy. We have a lot of those moments. Stops and starts, learning as we go, flying by the seat of our pants, running behind the runaway train. We can laugh at our mistakes and how we flounder (as long as my mother isn't hurt by our ignorance) while still feeling the sadness of her disease.

When Ma woke up this morning, she was clearly in a state. She leapt out of bed in her red polka-dot nightgown and bright white ankle socks, stuffed her bra in her pocketbook and said "where's the sewing machine."

Oh boy.

Now, I know the first thing I must do is try to re-direct her attention onto a different thought or task. It is the easiest way to get her back on track causing the least amount of stress for her.

"I'm not sure," I said. "How about getting in the shower?" Shower, what an idiot. She hates the shower.

She gives me a tight-lipped look, eyes glowing. ""The sewing machine was just here. Where is it?"

"Let's worry about the sewing machine when we get home this afternoon, ok?"

Big frustrated sigh and the hand wave she does so well, a complete dismissal in that one simple gesture. I have to get it on tape. It's classic.

She starts to search the three rooms upstairs. "Where IS it." she demands. "I have to finish."

Knowing redirection isn't working at this point, I start in with the lies.

"Dan had to fix it."

Her tiny feet in her little white socks start down the stairs. Her bald head descending from my view.

"Dan, where's the machine??" Shoot! He isn't prepared.

"What machine, Jill?" Oh boy.

I whisper to him, "redirect or play along!"

"I hear you Lisa!" I swear she has the hearing of a 20 year old when it comes to whispers but can't hear the TV five feet in front of her.

So I say louder, "the sewing machine that broke the needle, Dan. The one you have in the garage to fix." Why am I getting into broken needles and locations? Keep the lies simple!

"OH...the SEWING machine." he says. "I have it in the garage to fix. Wanna see?" Has he lost it?? Does she want to SEE?

"Yeah," she says challengingly.

He takes her out to the garage and points to our old white machine.

"That's not the one," she says in a huff and turns around. "Forget about it, alright? You people..." There she goes with the you people again.

She pads into the kitchen and heads right for the cookies.

"How about a nice cup of coffee Jill?"

"Yeah, alright." She says, not meeting his eyes.

Stalemate.

Thursday, August 13, 2009

Where's Mario?

My mother has been asking for my father almost four times a week now.

“Mario is dead?” she’ll ask.

“Yes,” I say.

“When did he die?”

“Thirty-three years ago.”

“Wow.” Thoughtful silence. “Are you sure?”

“I’m sure.”

“Cause he would look for us, right? If he were alive?”

“Of course he would. But he’s dead Ma.”

“Oh” She looks away, then back again. “You’re sure?”

“I’m sure.”

I’ve been told that a person with dementia can no longer live in our world, so we must crawl into theirs. Our/their reality is unfathomable to them. Parts of their brain are being taken over, and what is real is being replaced by what is not, or with what was before.

For example, my mother, though she lives with me and my husband, has no idea that she does. She believes that she maintains a separate residence “somewhere else.” Most nights, she’ll ask “when are you taking me home?” or “Am I sleeping here tonight?”

I used to try to convince her by saying, “Ma, go look upstairs! All your clothes are here. Why would they be here if you don’t live here?” Sometimes I’d be so adamant as to march her to the closet to view her things. This accomplished nothing but making her more confused and frightened. The current reality, in her diseased mind, does not include her living with me.

So now, I crawl into her world and say “Why don’t you stay here tonight Ma? We’d love you to stay.” And she’ll say ok and the moment passes easier for her.

But how do I do that in this case with my father? What can I possibly say to assuage her angst? That daddy is alive but away on a trip? That he’s still in the Navy fighting on the USS Half Moon? I don’t think so. Not now anyway. Not until things get much worse and not having him alive is worse than understanding he is gone. There will come a time when there will be no understanding, and I’ll have to find the right words or fantasy to set her at peace. I have no idea what those words will be.