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?

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."

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

http://www.newyorker.com/humor/2009/05/11/090511sh_shouts_ozols

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.”

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.