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.

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.

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?

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.