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

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.

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/

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.

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

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.

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.

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.

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.

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

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