Tuesday, December 29, 2009

Some Useful News

Here's something I just found out: If your place of employment carries a benefit called "pre-paid legal" you may be able to sign your parents up for legal benefits. We signed up for it at Steve's work, and I only just discovered the parent add on. You can get a will, power of attorney, advice for free or discounted rates! So check your benefits.

Wednesday, December 16, 2009

Fran's Makes A Move!

It looks like Fran may have found a new (for the moment) home!

She's living with her BFF, Molly. Molly has been Fran's caregiver for the last year or so, and it became apparent that Fran preferred Molly's company to ours. I think that Fran still felt an underlying responsible towards me. She doesn't really relate to me as her daughter, but I think she knows she's supposed to care for me. She is always asking me, "is there anything I can do? Is everything O.K.?" Being with Molly enables her to forget about her responsibilities. And she's having a blast. Last week, Molly took her out to a restaurant that had karaoke. Fran got up on the stage with Molly, and even though she didn't sing, she stood with the microphone and swayed back and forth. Fran also picked the song to sing. She picked "I will survive." I wonder, is this a random coincidence, or a vestige of Fran's sly humor?

Thursday, August 20, 2009

Movie Quotes

Sadly, I have once again learned that life is not like the movies. Always a disapointment, I've found that having children, getting married, are not at all like the movies. Now I'm discovering that the Hollywood cliche of old people with hidden gems (either literal or figurative) is also a lot of hot air. In movies like "Tuesdays with Morrie" or "Harold and Maude" , the old people have great life lessons to share with us. Remember "Fried Green Tomatoes" where the Kathy Bates character meets a quirky, yet charming old woman, the Jessica Tandy character, in a nursing home? The old woman tells a life empowering story that helps the younger woman find a deeper, richer life. Now that I've logged a few hours with the residents of the nursing homes I can tell you with authority that the likelihood of having a resident tell you a life-enriching story are slim. Here is an actual transcript of my conversion with Fran one evening.

Setting: Interior my home, it has been very hot, and I'm trying to get Fran to drink some cold water.

F: I can't very well drink it, it's too big a place. [translation: too big a glass]

J: Hmm.

F: Do you think that would work?

J: Hmm.

F: I'll have to get my pants off. (Fran gets up, wanders towards door, kicks my foot) Oops, did I touch somebody's toe? I didn't mean to. (Hands me the glass) Here's some of this you can drink, if you'd like to.

J: I don't want to drink it.

F: What did you think? About getting this put into your program, it's got too much in it (hears Steven in kitchen) wonder what they're cooking. I'll go see. (gets up, looks at glass) That's an awful lot to drink. (sits down)

J: It's for you.

F: OK, I'll drink it down, but. . . would you like some of it? There's quite a bit of it in it. (puts glass on the floor) I just left it down the stairs. (picks up glass, drinks it) All out. We 'll put in one of your other things, in the kitchen.

J: What do you do in the kitchen?

F: Oh yeah. It's something that you stick up in your room, and everybody finds out. I try not to say things that are too funny, but they do bounce around. [telling me she has trouble finding words]

J: OK.

F: Can I do anything for your city? I'd like to go with you and do something with you. But I realize you have business to attend to and it makes it harder for you.

J: Thanks. What would you do?

F: I do sometimes if there's something new and it makes me makes me stop and think about it. I'm not as cold and hot as I was before. [she's telling me how hard it is to focus on what's happening]

J: Is that good?

F: For what?

J: Is having it cold or hot, good or bad?

F: I don't know what good or bad means. (looking at my laptop) It's probably DELL.

J: Who?

F: I don't know, somebody outside. (hears the neighbor boy skateboarding) They're throwing boards around, I think.

J: Hmm.

F: Did you want to appeal to this thing (holding glass) that this gentleman wants you to buy? [communicating her worry that I not get taken advantage of] And if I have a leaky nose I should have some kind of fluid that goes with it? [hates to have a runny nose, wants the Claritin nasal spray she used to take]

J: Hmm.

F: What are you reading?


So there you have it. Nothing exciting to hear. No deep dark (You are Stalin's love child) secrets revealed. No profound utterances of pure knowledge (The meaning of life is. . .) spill from her lips. Fran didn't have much brilliant life insight when she was young and healthy, why would that magically change in old age? I reckon that if Buddha were spending his golden years at the Sunny Meadows Assisted Living Facility, his old age ramblings might contain some bon mots.

Setting: Sunny Meadows Assisted Living Facility this evening.

Buddha, room 209: "Teach this triple truth to all: A generous heart, kind speech, and a life of service and compassion are the things which renew humanity."

Lamira, caregiver, evening shift: "Oh Mr. Buddha, you want to raise your arms? PJs on? Everybody go to bed now! See Mr. Jesus? Already sleeping!"

Buddha: "The whole secret of existence is to have no fear. Never fear what will become of you, depend on no one. Only the moment you reject all help are you freed."

Lamira, fake laughing, "Very funny Mr. Buddha, good night Mr. Buddha!" Turns out light, exits room.

Monday, July 13, 2009


Fanini is off visiting my brother and sister-in-law. Sanini and the boys are off visiting relatives. I've got the house to myself for 5 whole days! Here's my to do list:
  1. Lie in (a clean) bed with an absorbing novel and an un-lidded drink.
  2. Let the dishes stack up.
  3. Look in the fridge at 7:45 p.m. and say, "hmm, what should I have for dinner"?
  4. Tidy my bureau and put out fresh flowers in the irreplacable, fragile vases.
  5. Decide to go to a movie on the spur of the moment.
  6. Plan ambitious landscaping project. Stroll about the neighborhood plant nursery.
  7. Clean the kitchen floor. Once.
  8. Get all my personal ablutions completed before exiting the house.
  9. Call lots of people on the phone.
  10. Make a list of everything that has to get done. Write blog instead.

Yes, I've pretty much got that list completed. Except for the flowers. I couldn't be bothered to pick them. That smacks of yard maintenance, and I'm on vacation.

I'm reminded of my dad's joke about vacation: First prize--One Week's Vacation! Second Prize--Two Weeks' Vacation.

The quiet is nice, but I'd rather not do this long term. I'd rather be with my people.

Full Disclosure

I didn't start out blogging under the name "Janini". In fact I started blogging using my real name. But Karen convinced me that I should use an alias, because of safety and privacy issues. I never fully agreed with this--I think anonymity can equal irresponsibility. I have noticed that other bloggers use their real names. Or at least I assume it is their real names. But what about my family? My sons and my mom would not be capable of expressing whether or not they want their names on the internet. My husband argues that some level of privacy should exist, worried about identity theft or things I might discuss and his coworkers and family might read.
So I'm taking comments. What do you feel about the blogger's mask?

Wednesday, July 1, 2009

How to Order Medication

Here's why eldercare (or anycare) takes so much time.

Fanini is out of her meds, meds she is required to take consistently.

Thursday: Notice that meds need ordering. Forget.

A Week Thursday: Notice that meds really need ordering. Get paperwork with Rx numbers and account numbers.

Friday: Call P___ S____ to order meds. Since W's great Medicare reconstruction, all Medicare patients who get prescription medication must have a Drug Provider. This is a private drug insurance company. That is to say, if you want Medicare to pay for drugs, you have to sign up with an insurance company. Your insurance provider does have specific guidelines about what they will and will not cover, where you can buy it and how much. This is, of course, assuming you are able to get signed up in the first place. It took literally months of communications with the doctor/pharmacy/myself/my sister to get all the paperwork filed, web ordering set up, prescriptions written, payment logged, passwords verified, etc. So. Back to Friday. Get paperwork to order prescription, notice that in order to pay by check you have to call P_____ S_____ to get a price. Call P_____ S_____. Talk to LaShirell, who will not discuss Fanini's prescription anything unless Fanini's HIPAA (http://www.hipaa.org/) form is updated, even though I am listed on the account and have ordered meds before. LaShirell insists on talking to Fanini, even though Fanini can't talk. I threaten to cancel the account. LaShirell gives me a customer service number to call. Call customer service. They aren't open.
Monday: Call customer service. No answer. Leave message.
Later Monday: Get call from Susan, grovelling customer service agent. Says LaShirell was wrong to deny me access to the account, says HIPAA form only needed the address updated. I update address. Susan gives me total amount due. I make a copy of the form for my records, fax a copy to Sister J. with the check number written on it. Decide to program fax machine with Sister J.'s fax number, so I don't have to keep looking it up every time. Can't figure out how to program speed dial. Google Hewlett Packard all-in-one fax copier, search and find manual and speed dial programming instructions. Program speed dial and fax copy. Write check, address envelope. Put in mail. Collapse.

Sunday, June 28, 2009

Some Practical Information: Plan? What Plan?

End of life planning is a complicated subject. Before I started living it, through my parents, it all seemed very scary and abstract--what does "incontinence" mean in real time? Watching them move into dementia-land, I've learned a lot about end of life planning, and how good planning can make for a good end of life for everyone involved. This is the first in a series of blogs exploring and dissecting a real person's end of life experience. Hopefully the knowledge I've learned will be more than just an interesting read.

Picture your ideal old age, and keep your options open. Back in the old days, both Manini and Fanini said that they didn't want to live in a retirement home. I think this was because their idea about nursing homes was based on the old Dickensian concept of nursing homes. They feared the nursing home, and closed their minds to this option. As I've learned, there are lots of variations of "nursing homes". There are co-housing type nursing homes, there are miniature city types of nursing homes. There's even a cruise ship nursing home. As the boomers age, I expect to see all kinds of wacky nursing homes: extreme sport nursing homes, anyone? Who knows what eldercare will look like in the future.

Death is unpredictable. Both my parents said that they would rather commit suicide than die crazy and infirm. Dementia made it so they were unable to take any steps to make that happen. They were at the mercy of their illness. Plus, since they both had dementia, the murder-suicide pact was no longer an option. What's your plan? Die at home surrounded by your loved ones? Keel over from a heart attack while climbing the Pyramid at Cheops? Maybe it will happen the way you want it too, but its probably a good idea to have a backup plan.

I don't want to be a burden on my children. So my parents always said, but they didn't make it happen. As a result, I've got a full-time job caring for my mom, which has had a huge impact on my life, my family, my marriage, etc. It breaks my heart to go see my dad, because he so desperately wants to go home, to be with his people. It hurts because I'm stretched to my limit and I can't solve this for him. My parents decided to go it alone, to not make a plan, and they set in motion the course they most wanted to avoid: to be the biggest burden and heartbreak of all.

Make it happen, start your plan now, write it down. I'd say death is even more inevitable than taxes. In fact, there's no guarantee you'll even make it to next April 15th! Procrastination and denial make it harder on you and your loved ones. Years ago, when my siblings and I were trying to convince my dad to make a will, I asked my dad about his end of life plans. He said, "I'm not going to make any plans, I'm just going to die and leave it all behind." Shocked, I shot back, "you mean, after you die you'd dump all that other stuff in my lap, at a time when I'll be so emotionally distraught I won't be able to think straight!?!" I've learned that end of life planning is a team sport, so enlist as many teammates as you can; children, friends, accountants, lawyers, doctors, etc. The more input, the more options you'll discover.

Next time, Part II: Who's Gonna Change My Diapers?

Saturday, June 13, 2009

Down from Mt. Prozac

My sister came to visit, and I remarked to her that spring felt especially lush and regenerative this year. She said, "maybe that's because it is for you." It was an amazingly sage thing for her to say, and really hit the nail on the head.
Recently, I've started going to a naturopath. I'm taking steps to improve my health, and restore my vim and vigor. And I'm stopping the Zoloft. If you are unfamiliar with Zoloft (http://www.medicinenet.com/sertraline/article.htm), it is one the many SSRI forms of medication (http://en.wikipedia.org/wiki/SSRI) used to treat depression. Many people in the United States take SSRIs, in fact, they are the number 1 prescribed drug in the U.S. http://www.cnn.com/2007/HEALTH/07/09/antidepressants/index.html. I can see why. When Fran came to die with me, I had to deal with the physical challenge of absorbing her into my family, and did not have enough energy to tackle the clot of feelings I have about my mother. I'm glad I took the Zoloft, I don't know how I would have made it otherwise. It enabled me to put my feelings into cold storage for a year, and accomplish the task at hand. I know a lot of moms take SSRIs, just so they can cope with the kids. It's how you get through the day without smacking the little angels. Zoloft gently swaddles you in bubble wrap.
Now my feelings are coming back, and I am greeting them with curiosity. I get livid now. I feel exuberant now. I am forced to learn how to handle my bad feelings, and I'm really enjoying the bursts of good feelings. Is there a pill that will magically teach me how to be Zen? Do I have to become a Buddhist? I believe that humans are like electricity: they seek the path of least resistance. I am intrinsically lazy and seek the smoothest road I can coast down, preferably in a limo, driven by a chauffeur. Experiencing and processing emotions is hard work--physically hard. I'm tired, I crave sweets, I've gained 20 pounds, I want a new drug. Do I really have to do this? Steven loves quote Nietzsche at me: "that which does not destroy me, makes me stronger". Smartass. I tell him to get me a beer.

Holiday in Grief

Now that things within my family have settled a bit, I feel like I have more time and gumption to devote to my inner life. I've got a lot of Prozac Swap Certificates to cash in. So I'm taking a Holiday in Grief.

Most travelers who have been to Grief will tell you that it's always a bummer. When your friends tell you they are going to Grief for a vacation, you never say: "Wow, that's great, I'd love to go there!" You know they are in for months of misery. In fact, this year's official advertising slogan of the Visit Grief Council sums it up: "Grief: For the Hurt of Your Life."

Just getting to Grief is painful. The shocking route gets you there the fastest: Loved one dead in an automobile accident; huge layoffs at work; significant other leaving you for a rock star; etc. But there's also the scenic route: Lengthy terminal illness; realization your youth is behind you; never making pro; etc. The slow route is the 30-year mortgage of pain. The term payoff is the same, but the pain dribbles out day by day instead of exploding all at once. But it doesn't matter what route you take, they'll all bring you to Grief, sooner or later.

It's easy to get lost in Grief. Some travellers to Grief take the bypass, but I don't recommend this. The problem with the bypass is that it spits you out in Denial. The only way back home is through Grief, anyway, so just save your time and go through Grief.

Still, what can you say about a country who's national dishes are chocolate ice cream, pasta and wine? The Grief National Academy of Cuisine produces more comfort food chefs than any other country in the world. Try the all-you-can-eat buffets that every Grief restaurant offers. On the flip side, people also go there for the weight-loss program. Pounds and inches can be lost quite rapidly with out any hunger pangs. I think the weight loss program in Grief is even faster than the weight loss program in Love. Aside from the food, though, there's lots of cool stuff to be bought in Grief. Cars, clothing, and weekends at spas are all hot items in Grief. Credit cards make it easy to postpone the consequences of overspending.

The thing is, though, you never forget your time in Grief. A reminder pops up; maybe a picture of your lost loved one or wrinkle in your face. Your heart will constrict and you'll feel like you're right back in Grief. The Grief Advertising Council had it right with last year's advertising motto: "Once you've been to Grief, you'll always go back."

Tuesday, June 2, 2009

Please read the humor piece by Amy Ozols in the May 8, 2009 New Yorker:


And now this:

Will you be my friend?

Hello, pretty woman sitting next to me.
This is my first time on an airplane, and boy am I excited!
My name is JJ, and I’m a child. Maybe you don’t have a lot of experience with children, or maybe you didn’t have a very memorable childhood, but let me explain what “child” means. I’m smaller and not as knowledgeable as you, but my mind is expanding at an amazing rate—I can learn a foreign language just by walking through the room! I haven’t yet learned how to suppress my emotions, and I think the world is amazing!
The woman sitting next to me is my mommy. She’s the center of my universe. Mommy, Mommy, Mommy, I can sing her song all day. Although she’s not very happy today. She was telling me that Grandpa Ted has gone to sleep forever and we have to go say goodbye. Daddy can’t go, ‘cause he has to work. Daddy works all the time and Mommy used to work, and I used to have to go to preschool. But preschool closed and now she stays home with me! I love that. I’d rather be with Mommy all the time.
I saw Mommy gazing wistfully at your stairmastered thighs in those dry clean only pants. Mommy never wears pants like that. Or shoes or jewelry like that, either. But Mommy is so soft and warm in her fuzzy sweater. I love to bury my face in Mommy’s shoulder, and she always lets me, even when I have just vomited.
I see you are trying to sleep, and I don’t see how you can! This airplane is so amazing! All the juice you want to drink! Mommy got me some special treats for the plane too. She got me this doll that talks! That’s amazing! But not as amazing as this airplane. And all the people on the airplane are amazing. I want to get up and run all up and down this airplane, it’s so amazing! I want to meet everyone and see what they are doing, and do it too! Mommy says I need to stay in my seat, but I want to GO!
You keep closing your eyes, but I can see you are not asleep! Mommy does that sometimes too. I can always tell. Even if she is in the other room. Right now Mommy’s eyes are leaking water again and her mouth has gone all funny and crimpy. She’s picked up the in-flight magazine but I’m not going to let her read that! She has to pay attention only to me!
Uh oh, I got so excited I forgot that I had to go poo-poo. Now Mommy has to wrestle me and the diaper bag into that tiny bathroom to change my pants. This plane sure is bumpy. Seems like everyone is frowning at Mommy ‘cause we don’t fit through the aisle. What is Mommy saying? Oh, she’s saying, “it’s easy for people to criticize—harder for people to help.”

Monday, June 1, 2009

Snap out of it!

You are having dessert at the annual Family Thanksgiving Dinner. Sitting next to you is your elderly uncle, Ted. Suddenly Ted falls out of his chair, grasping his left arm and gasping for air. "Looks like a heart attack," you think. So based on what you have learned about heart attacks, you lean over Ted's face and yell, "snap out of it!"

In reality, we would call 911. Paramedics would come. Doctors would hook up the EKG, give the medications, CPR, hospitalization, all that stuff. Even if Ted didn't have any insurance, the hospital is bound by law to treat his immediate condition.

But what if Ted has dementia? Or what if Ted is bi-polar? What if Ted started to pull down his pants and urinate on the table? What would be your response? I know what my reaction would be. In our culture we see mental handicap as either idiocy, or a personal failing. We tell the shaggy, rambling homeless person to get a job. Hospitals cut the ribbon on state-of-the-art cancer centers while antiquated state mental hospitals are shut down. Alzheimer's patients are segregated from their homes in locked memory care facilities. NAMI (http://www.nami.org/) gets only TV actor endorsements.

I believe our culture has difficulty separating brain function and mind function. The body from the soul. Fanini may occasionally mistake the table for the toilet, it's just that her brain has lost the pathways that tell her what to do when she gets the urge. Likewise, living with the boys has taught me that babies are not just screaming lumps of flesh. Ganini cries because he hasn't yet formed the pathways that enable him to speak the words to tell me he's tired. Fanini is proof that just because you are crazy doesn't mean you are stupid. Both Fanini and Ganini don't have the voice to make others understand.

AIDS transitioned from the scarlet letter of sexual depravity to a star-studded cause-celebre because of powerful marketing. AIDS sufferers were still able to advocate for themselves via the media and the legal system. At the risk of sounding saintly, I think part of my life mission is to change how I treat those who cannot treat for themselves. I'm changing how I perceive and respond to Fanini and Ganini. I'm seeing them as humans, humans who have lost or not yet learned my level of brain-powered skills. And I'm spreading the news. I'm hoping what I do will ripple out into the wider world. I'm thinking I can change the world, one blog at a time.

Thursday, May 14, 2009

Housecoat, Part II, The Love Affair

What is it called? Creative visualization? Self-fulfilling prophecy? A few weeks ago I wrote that I wanted a housecoat; then, like magic, one appeared. It happened when I was down on N. Mississippi Avenue, visiting a very cool vintage shop called Bella Norte. It was there that I heard the housecoat call my name. In an old oak armoire, nestled amongst the silk peignoirs and skinny sheath dresses, was a full-on frumpy chenille housecoat. "Take me home. . ." the housecoat called, "I wuv you!" Seduced by its ribs of terrycloth, fussy flowers and zipper front, I held it in my arms, petted it and called it my precious. "We will always be together," I murmured in its armhole, "I will wear you as you have never been worn before." We went home together, vowing never to part.
Now I'm living in a cozy tent of pale blue love. My boys think it's very swell. They want to be zipped up with me inside the housecoat. They tell me I'm soft and warm. Momma. My husband has tactfully refrained from commenting. Or maybe he's just jealous.

Tuesday, April 28, 2009

Five Warning Signs Quiz

There are many books out there that will tell you what to do IF your parents become demented. But really, do you need to fork out the $29.99 for a self-help book if you don't even know if you will need it? Do I buy the book, or not?

Here's a quick quiz to determine your odds of becoming a Panini.

I. My parents are:
a. Really great. They're 80 years old, and have done all their estate planning and are cheerfully ensconced in their retirement community.
b. Really pretty ok. They're 65 years old, and have done some wills and medical forms, but they are still living in that funky house.
c. Really not too bad. They are 75 years old and are only now becoming aware of their impending demise.
d. Really a mess. They are 80 years old and I haven't spoken to my dad ever since he was convicted.

II. My siblings and I:
a. Get along great! I'd have no hesitation about taking a walking trip across Nepal with all of them, and their spouses, too!
b. Sometimes have our differences, but we always work them out.
c. Do o.k. as long as we don't have to spend too much time together.
d. Left home at 18 and only occasionally exchange Christmas cards.

III. My parents (family) possessions:
a. Mean nothing to me, just stuff.
b. There are a few things I'd like to have, but mostly I don't care.
c. I think it should all be divided up evenly.
d. Are all exquistely imbued with deep emotional meaning, and my siblings would steal them all if they could!

IV. My children and my husband:
a. Are united together as a loving group, through thick and thin.
b. Have our ups and downs, but we all love each other and work hard together to work it out.
c. Are mostly a burden, but this is the path we're on for the present.
d. If that asshole doesn't get up off that sofa and take these little brats out of here I swear I will start screaming!

V. I find it stressful:
a. I never find it stressful, I am serene and relaxed all the time.
b. When things get super busy, but I am good about handling my self-care.
c. When things get too busy for me, and I get stressed if I don't get it all done.
d. See quiz IV, answer (d).

If you answered mostly (a) you will probably never be a Panini, or if you are you will sail through it with Martha Stewart like aplomb. Don't bother spending the 29.99.

If you answered mostly (b) you have a greater chance of becoming a Panini, but it probably won't bother you greatly. If you see a good eldercare book on sale, you might buy it for informational purposes.

If you answered mostly (c) you will definitely be a Panini, so go to amazon.com, order 3 books and devote a weekend to reading them and taking notes.

If you answered mostly (d) you already are a Panini, skip the books and go directly to the Alheimer's Hotline for help.

Thanks for taking this quiz. One final word of caution: Very few people die instantly of a heart attack while doing kickboxing class on the Lido deck of a Caribbean cruiseship. It's probably not prudent to plan your end of life around that scenario.

Wednesday, April 1, 2009

That's A Housecoat!

This evening as I splayed my exhausted body on the sofa, blearily eyeing my two boys' creative re-working the Playmobil Firestation, my mind wandered over the change in my career status. I am now a "householder." A friend alerted me to this newest term in family member definition, formerly known as "housewife." It's an omni-sexual term for the member of the partnership that steps away from their job/career/passion to raise the family and maintain the home fires. I like this term. It makes me think of a Medieval chatelaine, capably bringing in the castle's wheat harvest, not a hair out of golden fillet, while the lord of the manor is off quelling the Scots. Terribly romantic.

As I splay there, the belt on my fashionably low-cut jeans digging uncomfortably into my lumbar area, my second thought is: What should I wear in my new position? It needs to be something that is comfortable and flexible to move in. It must be easy-care, with a patterned cloth to hide the stains. It needs to camouflage the lumps and bumps of the 20 extra pounds I'm carrying. Then it hit me! I am pretty much describing the muumuu-style housecoat my mother wore in my youth!

My mother was quite an attractive woman. Fanini was tall and curvy, with dark hair and a strong face. She dressed to suit her shape, in tailored skirts and dresses; fashionable, with an eye to subtle details. At least she did in all the photos I've seen of her. When I first knew her, she mostly wore a short sleeved, vaguely Hawaiian, dark blue and green housedress. In fact, in all my Kindergarten portraits of her, she is wearing that dress.

So looking back and doing the math, my mother would have been 44 years old. She would have been out of her career for 5 years. She would have had 4 children and a non-participating husband to care for. She would have canned, cooked, shopped, nursed, drove, and cleaned for all of us in our huge, unreconstructed victorian house. No more career to pursue--out went the Pendleton wool suits. No more evenings at the swank nightspots--out went the low-cut petal pink silk cocktail dress with black edging. It was during this muumuu time that I recall her butt getting pretty wide. I don't recall her ever complaining about it.

So here we go again. Things are both better and different forty years later. My husband is extremely considerate, and really wants to be a good father and supportive husband. I have a small easy-care house. I have lots of conveniences and entertainments to ease my daily drudgery. So what does it mean, this contemplation of the housecoat ? Is it merely because I am middle aged and have finally accepted that now I am, no longer, hot? That I cannot identify 75% of the stars in People magazine? And I don't care? Do I finally realize that this is not going to be just another in a string of personal adventures? That I'm probably going to be doing this until I die? Never again will I attend a New Year's Eve party in my famous black to silver strapless mini-dress. I guess it is time to send it on to the thrift store. Maybe some other fabulous babe will get some mileage out of it. I hope she can appreciate it.

Sunday, March 22, 2009

Short Order Kitchen

If you have small children, you know that feeding them can be a challenge. One child doesn't like cheese. The other child wants her sandwiches cut diagonally, and without crusts. Neither child will eat seafood. Some days I feel like a short order cook in my own kitchen. Now Fanini is beginning a strange new stage of AZ, the not eating phase. On a scientific level, watching Fanini's brain disassemble is fascinating. I can watch sections of memory and function stop working in real time. Not eating is part of the whole sensory input section of the brain. Physical stimulation becomes harder and harder to process for Fanini. Like a tiny infant, she cannot understand what to do with that physical sensation. Suddenly food flavors and textures "do not compute." Anything spicy, sour, crunchy, or otherwise distinctive to the taste buds is left on the plate. But, like a child, she always will eat sweets. Sanini tells me that this is an evolutionary remnant--sweet foods are not likely to be poisonous.

So now I am left with a diminishing repertoire of recipes. A cursory search of the AZ websites recommends feeding the foods of their youth, those deepest in memory. I talked with Fanini's doctor about this, and she basically said, "if she'll eat ice cream, give her ice cream with nutritional additives." We're not talkin' healthy building blocks here. So what I need need is the 'End of Life' cookbook. Just imagine the recipes! 50 Ways To Sneak In Protein Powder! Steak Shakes! Lasagne A La Mode!

So I'm at yet another bizarre intersection in great chart of human life progression. My children need foods that are tasty and supportive for growing bodies, since I'm shaping their future food preferences and physical health. Fanini's food needs are more akin to hospice care. The Trader Joe's last sacrament chocolate truffle. I suppose there are worse ways to end your days.

Wednesday, March 4, 2009


Today we had a Twofer. 1. My boy got pottytrained. 2. Fanini got her own bathroom.
My 2 1/2 year old, Ganini has been flirting with the potty for months, and finally today used it on his own initiative for the whole day. I never really minded the diapers, and baby-poo is less disgusting than adult-poo, but it does get tiresome.
When Fanini first moved in with us, I bought a pottychair to put in Fanini's room, because she often felt uncomfortable walking through the house to the bathroom. So I've been emptying chamberpots for the last 6 months. I don't know if you've ever had to empty chamberpots, but it is not nice. Consequently adding on to our (tiny) 3 bedroom, 1 bathroom house was pretty much a requirement. Now, $80,000 later, we have a swell bedroom/bathroom addition for Fran.
I checked a book out of the library, "how to alzheimer's proof your home" or something. If you want the title, ask me and I'll look it up. I got a lot of good ideas from looking at other assisted living buildings, in addition to research on the web. I took all that information and incorporated into the plan the bits that I thought would be most helpful to Fran and her caregivers. Speakers in the ceiling pipe Fanini-friendly muzak into her room. The bathroom floor is a very groovy cork mosaic tile that is warm to the touch and soft on the foot. The bedroom has radiant floor heat so there are no heaters to worry about. A french door exits to the backyard so we could later add a wheelchair accessible entrance. The toilet has a warmed bidet toilet seat. A towel warmer pre-heats towels and PJs, very important for the AZ patient's comfort. It is all very posh.
All day Fanini has been very happily sitting in her room, looking through her possessions and listening to the muzak. This evening when I heard the new toilet flush, I smiled and considered a future with less poop and more elbowroom. It looks better.

Thursday, February 19, 2009

Complaining is easy

Its easy to write a blog and winge about life. Over the past days, I've been thinking and stewing how I can put my own life experience with children and parents to better the lives of others. This is inspired by three events: The arrival of a new presidental administration of hope; Seeing materialism and greed cause a Great Depression; Watching my parents lose all recognition of any physical acheivements in their lives. I'm feeling a calling to change the world for the better before I croak. And I don't mean to become Saint Janini. But what else is life about? A friend sent me around a copy of the "bucket list" things to do/see before you die. So I'm making my own bucket list of one item: Leave the world a better place for others.
Sounds a bit like a combination Mid-life crisis/Religious calling. I'm looking for information on other people who have found alternative ways to care for their family and extend this care to their community.

Sunday, February 15, 2009

Would You Call Childrens' Services?

The Child's Story
My mom and dad had to go out of town for a week and they couldn't take me with them. So they sent me to Playhouse. They just left me there! I was very confused and frightened. I didn't like the food and there was something wrong with the people that were staying there. The teachers tried to make me take off my clothes and they acted so phoney! I knew they were up to no good. I wouldn't eat their strange food, and I got really mad so I threw my dinner on the floor. Then I went to my room and locked myself in my room. but the door wouldn't lock, so I had to push and shove and move my dresser in front of the door. I stood there watching the door, I couldn't sleep because I had to stay on my guard. Finally my mom came and took me back home. I was so glad, but I was exhausted and slept all the next day.

The Parent's Story
My daughter had to go out of town for a week and she couldn't take me with her. So she sent me to Respite Care. She just left me there! I was very confused and frightened. I didn't like the food and there was something wrong with the people that were staying there. The Caregivers tried to make me take off my clothes and they acted so phoney! I knew they were up to no good. I wouldn't eat their strange food, and I got really mad so I threw my dinner on the floor. Then I went to my room and locked myself in my room. but the door wouldn't lock, so I had to push and shove and move my dresser in front of the door. I stood there watching the door, I couldn't sleep because I had to stay on my guard. Finally my daughter came and took me back home. I was so glad, but I was exhausted and slept all the next day.

Thursday, February 5, 2009

Flossing for the whole family

I never thought I'd floss another person's teeth. Now I floss four sets of teeth, only one of which is mine. Flossing the boys' teeth is rather sweet. They've got these tiny little teeth, all white and new. Their mouths are soft and pink and fresh.
Flossing Fanini's teeth on the other hand is a tad unnerving. For one thing, Fanini's teeth have seen a lifetime of chewing. They are somewhat crooked, full of fillings and caps, and a color I can only describe as ochre. When I run the floss between the teeth, large chunks of the day's meal flick out from between the teeth, often landing on my face or clothes.
Right now you probably are making a kinda "gggarrg" sound, and I understand. I always try to focus on a quote from a book I read a long time ago. It said essentially that love negates disgust. At the time I read the book, I was thinking of it in more of the "sicko erotic requests" category. But now I understand it in more of a "wiping up the bodily excretions of your loved ones without gagging" kinda thing.
So I floss. And I wipe bottoms. And I fall asleep with puke in my hair. Does this make me a good person? Probably not, but I'm learning to be a more tolerant person. Certainly I can talk disgusting with the best of 'em at the Mom's Group.

Monday, February 2, 2009

What's the Panini Generation?

I generally refer to my parents by their given names, Manini and Fanini, rather than calling them Mom and Dad. Both my parents suffer from Alzheimer's dementia. On their backward journey down through their brains, the distinguishing landmarks that made them into Mom and Dad have mostly disappeared. Using this name distinction helps me to separate the Mom and Dad of my memory with the Fanini and Manini of the present. As you can imagine, I wonder about my own brain a good deal these days. I am suddenly aware of the beginning and ending of life, as I experience it through my own family.

When I was doing my Tour of (assisted living) Homes, again and again I kept bumping up against the label "Sandwich Generation". This term was chirped up by perky Community Connection Directors, those folks whose job it is to shepard dazed and anxious family members into the squeeze chute of old people management. The "Sandwich Generation" are those 40 somethings with young children on one hand, and aging parents on the other. They are the filling pressed between the bread slices of kids and parents. But what if your bread slices are more substantial than Wonder White? What if your bread slices are artisan ciabatta loaves cut in two and jammed between the red-hot grills of an Italian panini press? What if you have two rambunctious growing boys and two petulant declining parents? Do you think you might be a member of the Panini Generation, now or in the future? Then please join me and build upon the funny, practical, surreal and sad experiences that happen to this member of the "Panini Generation".