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 - A great site which offers daily writing exercises.

Laura's blog - 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?…


“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 -

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.’

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 -

**One of many articles on benadryl and dementia

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 -

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.”


“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


“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.


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.

Wednesday, August 12, 2009

The Coal Bin

My mother has dementia. Each morning, in preparation for her trip to daycare, we will invariably fight over whether or not she'll shower.

I don't know exactly why it is people with Alzheimers and dementia don't like to keep clean. I know they lose their ability to do even the most basic tasks. Perhaps she has forgotten how to regulate the water and is embarrassed to admit it. Or maybe she fears falling. Either way, she’s getting in. I'm not letting her go to daycare dirty.

If I hear the diaper box open, I know we’re in for a fight – she’s in a “change and go” mood. But if I hear the water running from the sink, I know she is brushing her teeth and we are good to go. This morning, it was the diaper box.

I rushed in before she could get her first leg in.

“Ma, you have to shower.” Firm.

“I’m not showering.” Even Firmer.

“It’s been three days Ma,” I lie.

“How do you know how long it’s been?” (She doesn’t know she lives with us so therefore doesn’t know that I know what she does every morning.)

“Come on, let’s get your nightgown off.” I say as I approach.

“I said I’m not showering!” (Oh boy…)

“It will be quick and you know you’ll feel better after.” I say.

“Jesus! These people!” (What people? I’m the only one there.)

“Don’t swear.” I say.

“Oh, stop it, will you please?" she says with a wave of her hand. "I need a facecloth.”

YES! Facecloth means she’s going in. Easy one today.

We adjusted the water and she began to soap up. I got a big blob of body scrub in my hands and rubbed it onto her head (she’s bald) and her back.

Once I got to her legs, she said, “What do I work in a coal bin?”

That stopped me. “Did you say a coal bin?”

“Yeah, a coal bin,” she says.

I burst out laughing.
As I looked around her body to her face, I saw she was smiling too.