The Parent Swap

As you may recall, Fran has gone to live with the new love of her life, Molly.
In February, Mike was asked to leave Assisted Living. I think the last straw was when Mike came down into the lobby area sans pants. Once again, it was time to move a parent.
When we added on the Frannex, my intention was to only have Fran live in our household. I had concerns about Mike living in the house with the boys.
My father's ideas about raising children are much different than mine. I tend to think of my children as distinct little satellites launched from my planet, acquiring resources, knowledge and skills in close orbit before they slingshot out of my gravity to go explore the universe. I believe Mike felt that his children were a reflection and extension of himself therefore he tried to control his children to ensure a positive reflection of him. We kids needed to be under Mike's control and command at all times, lest we veer from the party line, and knock holes in Mike's stage set of family life. Mike enforced his control in a variety of ways that would be considered "unhealthy" now, and I was worried that he would cause harm to the boys. When Mike was evicted from assisted living, I warily moved him into the Frannex, while we sorted out what to do. My brother and sister-in-law offered to take him on a permanent basis, but I felt that would be an extreme hardship for them since they both work outside the home. Having done the Fran care for a year, I know the amount of time and energy it takes to care for the demented parent. It's not like having a cute toddler that a friend or neighbor will watch while you go to your chiropractor. Mike is a high maintenance person, he needs one on-one-care, all his waking hours. He won't sit by himself and watch t.v., and if he finds himself alone, he will get up and look for his people. So I kept the boys apart from Mike and went out on the Memory Care tour.

Memory Care (heart)

Memory Care is a sweet euphemism for "Locked Ward". Although every effort has been made to make the facility light and cheery, there's no getting around the truth that nobody in your family can take full-time care of you anymore and this is your last stop. There's a certain amount of stage dressing and salesmanship that is necessary to make it palatable to family members. My latest tour include a visit to a large corporate facility with Assisted Living and Memory Care units. I met the perky, sexily dressed salesperson, er, community relations coordinator, and she took me for a tour of the Memory Care wing. As soon Mike and I stepped off the elevator she did a strange sort of shielding maneuver to shepherd us around the corner. Not fast enough apparently, to avoid the catcalls of an elderly gentleman seated directly across from the doors. As our guide tried to attract the attention of the nursing staff, the old guy caught sight of our party. "Shake it!" he leered and me, and I obliged. Just doing my part to improve the daily lives of the residents! Our guide apologized, "I was trying to hurry you past Fred, because sometimes he makes inappropriate remarks." Mike and I joined in on the exercise group, where 70% of the residents are unable to sit up in their wheelchairs, much less rotate their ankles. Mostly they just curl up and doze. Mike was definitely the most alert and agile patient in the room, over and above some of the caregivers, even. He quickly attached himself to a genial old fellow named Nigel, who had a jolly demeanor which made his gibberish quite pleasant to listen to. After the class, we wheeled Nigel down to group singing class. We passed Nigel's room which listed Nigel's achievements in life, including his accolades in the fields of academics and physics. I Googled Nigel later and discovered he had made ground breaking discoveries in aeronautics. Poignant, no?
It was rapidly becoming clear to me, that Mike was not ready for Memory Care, and I was not ready to send him there. It was time to revisit a decision I had made when Mike first became incapacitated. Maybe it could work: Should I move Mike permanently into the Frannex?

Momma

What a day this has been.

This morning I woke up, inspired by how much I was going to get done today! I was going to finish my paper work that is due in 2 days, shovel some compost onto the garden beds, drop off the sewing machine at the repair shop, go to the gym, go visit Fran, pick up the grocery order, and complete several other tasks on my to do list. JJ was dressed and getting ready to go to school with Steven. Grant was having a good sleep in. It all looked promising.

Then Grant comes out from his bedroom and says "I'm a baby kitty." I know this is a bad sign. This is Grant's code for "I'm a helpless baby, and I need your total undivided attentiton."

We will spend the rest of the day negotiating. I'll get the groceries picked up and the sewing machine dropped off. Grant will wet his pants three times (once at the library) and pee in the lid of JJ's Cariboo Island game. Grant will continue his project to unscrew every door lock in the house and lose the parts. Out of the blue, Grant will run up and bite me on the breast, hard enough to bruise. I will be strained to my limits several times. I will not beat him. I will try to stay present.

Steven gets home at 6:45. He's had a lot going on at work. He's stressed. I slink off to the bedroom, justifying my craven retreat with the fact that I cooked him dinner. Within 3 minutes both boys have discovered I am missing and seek me out. Grant has crawled under the bed to avoid being evicted from our bedroom.

Steven says to Grant, "I love you Grant" and he yells "no you don't". He's three and a half.

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?

Vacancy

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?

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.

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."

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.

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.

Twofer

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.

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.

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.

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".