photo by Sheri Dixon

Wednesday, May 16, 2012

Book Review- "The Good Caregiver" by Robert L. Kane, MD

Back in September we were at a family crossroads.

Our family already consisted of Ward, Alec and myself and 3 1/2 years ago we 'adopted' Joe who's a retired snowbird from Montana.

Back in July, Joe was supposed to go visit his mom in Oklahoma City when he announced he'd have to wait. Mom had fallen and was hospitalized and had told him to not come see her till she was out. Mom is in her early 90's.

Joe calmly filled his plate and sat down to eat- unaware of the changing tides. I knew at that moment that Edna was coming here.

I sent Joe to Oklahoma City the next day and told him I'd be there by suppertime to help him figure out the maze that is the medical system, which I did and then left him there to help his mom for a few weeks upon her discharge.

She had medicare-approved home health care for a few more weeks after that but then she decided she'd be better off not living on her own anymore. She said she'd just have to move into the nursing home.

Her apartment was part of a big "Wheel of Decline" complex- a ginormous Baptist church in the center, with spokes radiating around it-

-an ant farm warren of independent living apartments where she was residing- all senior citizens but no help whatsoever with medicines or shopping or cleaning or laundry. Once the residents reach the point Edna was at there is

-the nursing home. No private rooms, no cooking allowed, very few personal items accepted. As you become more disabled you move to

-the critical care wing. Dementia patients are there, including Edna's sister Wanda. We visited Wanda and it was horrifyingly depressing. Finally, the last slice of this end of life pie is

-the cemetery.

Seriously- it's actually set up that way.

Once Edna came home from the hospital I started calling her every evening to be sure she was OK, and managed to talk her into a visit to Texas. Just a visit. I told her if she liked it here we'd love to have her move here- there were many options that were exactly the same as in Oklahoma City- senior apartments, assisted living, nursing homes...with the benefit that her son would be right here and could visit her EVERY DAY instead of every other month.


She could set up a little house here on our land- we already had our house and Joe's house here- what's one more?

So she came to visit. Just to visit. For a week. She evicted Joe to his camper and moved into his cabin. For a week.

After 2 weeks she said, "I think I like it here".

Joe said, "That's great, mom".

She said, "This little cabin will be just fine- you can live in your camper, right?"

Joe said, "................" and fainted dead away.

Over the next week or so I took Edna to see little "Park Model" homes- not mobile homes, they're built just like a site-built home with real wood trim, super-insulated and drywall- just stout and really attractive little houses. Once we sat down and figured out that she could pay cash for one with the money a nursing home would require for 6 MONTHS, she was sold.

Fast forward to September.

Ward, Alec and I were in Denton for Alec's weekly Future Problem Solvers' meeting at the library and Ward and I were perusing the books on the shelf.

I came across "The Good Caregiver", leafed through it during the hour we were there, went home and ordered it on Amazon.

Oh, it goes into the very real issues that need to be considered and realized in caring for an elderly person- personal issues, safety issues, time issues, caregiver burnout issues. And it does an excellent job of that, asking hard questions of the care givers and would-be caregivers and giving a lot of good advice and directives for everything from finances to home safety.

But here's the thing.

I thought I knew the medical field and how to deal with insurance and hospitals and whatnot because of everything we'd been through with Ward.

I do.

For cancer and heart stuff.

For age-related issues? Not so much.

I had no idea how genuinely fucked up the options for the elderly are in this country.

How expensive care is, how little Medicare covers (spoiler alert- NONE), and how the majority of our older people- already feeling weak and powerless- have to spend every single dime they have and then HOPE they get accepted to Medicaid and then PRAY that the nursing home they are in takes it.

The author is a doctor, so the book comes from a medical perspective BUT he also was in charge of his own mother's elder care and so it comes from a caregiver's perspective. As a doctor and a son he's also very aware and very vocal regarding how totally broken the current medical system is- how many holes are in the social safety net for older people, how little actual clout there is to protect them- groups like AARP are geared towards marketing advocating to HEALTHY active older people- people who look and act like they're 40...but with silver hair.

The golfing/shopping/cruising population.

Remember back when my family had that little 6 week long incident at MD Anderson that almost killed Ward? I couldn't understand why the records keeping was (at their own admittance) so wildly stone-agedly cumbersome, there was NO (at their own admittance) communication between departments in the same stinking building and other things that people should've been screaming about from the rooftops.

Then it hit me- when people leave the cancer hospital, no matter the outcome, the family members are so exhausted and relieved/grieving that they don't look back. For their own sanity, they CAN'T look back.

Now I know that our elderly fall in the same category. From the book-

"Once an older person dies, the family usually tries to put the whole unpleasant experience behind them. Apart from disease-based organizations (like the Alzheimer's Association), long-term care has never attracted a sustained group of supporters willing to work to improve the situation."

Edna jumped ship from the "Wheel of Decline" and is busy every day in her own kitchen, doing her own laundry, tending her roses and vegetables, and caring for The Biteys and her baby...Joe. She and I do Girl's Day Out every Saturday, and I try to sit and visit a spell with her at least every other day. In a family filled with boys, having Edna here makes me feel less...outnumbered.

Instead of one of those "Help, I've fallen and I can't get up" gadgets, we have a baby monitor set up on top of her fridge and I turn it on when we go to bed and turn it off when I hear the Biteys dancing around because she's up and making coffee...and breakfast.

Joe is doing a fabulous job keeping track of her medications- something that was confusing to her with sometimes very negative results- and he has coffee with her every morning and checks in on her several times a day. He does the bulk of her errands and shopping and they are both benefiting from spending very important time together- time they haven't had in about 50 years.

One day I mentioned something about Edna to the owner at our feed store and he said, "You sure are doing angel's work- you'll be getting your reward in Heaven".

I told him emphatically, "NO- my reward is right here and right now- her name is Edna".

Edna and Joey working in her garden.


  1. As I read this, I think about my own Father who is getting. I think I want him nearer but I, selfishly, know it will mean my life will become more care-giver than care-free daughter. Now, as I wait to become a mother for the first time, I am struck by how much I want him near so I CAN be a care-giver and a care-free daughter and, most importantly, his friend. Our medical system is a failure and I won't let him suffer in it alone. Thank you for reminding me that I have the best gift ever: my dad. Until the day we part ways in this life, I want him to know this even if I am wiping his chin or changing more than one set of diapers.

  2. Yep, it's not even "growing up", it's more of an awareness that we're all connected, all related, and all necessary to each other. Yanno, like all the same species or something...