Cloud hidden, whereabouts unknown

Grandma on the picket line, fighting for workers’ rights. I’m so proud of the work she did and forever grateful for helping me my whole life.

Well I’m taking some time with my quiet friend
Well I’m takin’ some time on my own.
Well I’m makin’ some plans for my getaway
There’ll be blue skies shining up above
When I’m cloud hidden
Cloud hidden
Whereabouts unknown

— Alan Watts Blues

Late on the night of January 8th, Grandma’s tenacious grip on life finally let go — not with a sudden fall or illness, but peacefully in her sleep, which was how I always hoped she’d go.

I started this blog to offer a slightly different perspective on caregiving, but it turned into much more than that. My daughters learned about their family. Other caregivers thanked me for making them laugh. And I found an outlet for the confusion, frustration and flat-out bewilderment that comes with taking care of an elderly person. Even one you dearly love.

When Grandma died, she was a mere shadow of her former self. I would much rather remember her as the sassy labor leader who stood up for what’s right and knew how to hobnob with politicians to get what she wanted. Millions of full-time employees have people like my Grandma to thank for their time off, their health care and retirement benefits — even their weekends. Because unions didn’t just help their members; they improved working conditions for everyone by promoting the audacious view that people shouldn’t literally be worked to death. But I digress.

I can’t end this blog without thanking Brookdale Hospice for the excellent care they took of Grandma. As her dementia progressed and her contact with the outside world grew rare, the aides, nurses, social workers and chaplains who visited Margaret and listened to her stories were the highlight of her day. They helped me make informed choices and offered suggestions when I started looking for residential care. In the end it wasn’t necessary to move Grandma to an assisted living facility, but just having people to talk to about it made the journey less overwhelming for me.

Sometime during the final days of Grandma’s life — when I was checking on her through the night, changing her, and administering pain meds — it dawned on me that it was almost the tenth anniversary of my Grandpa’s death. I literally picked up where he left off, which means I cared for Grandma in some capacity for 10 years. That’s 20 percent of my life. I try to remember that when I feel guilty for the times I was short with her or even outright mean. One of my friends commented on social media that I’d been a loving granddaughter. I admitted that wasn’t always true, but I can say Grandma had everything she needed and wanted during the twilight of her life. Just before she died I bent down one day and kissed her head and told her I loved her. “You’re a nice lady,” she said. Wherever she is now, I hope she knows I did my best.

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Grandma and I channel Cheech & Chong

 

Ever feel like you’re stuck in a Cheech & Chong/Groundhog Day
mashup? I do.

I grew up listening to my parents’ 8-track tapes. My Mom regularly played everything from Jesus Christ Superstar to Doctor Hook & the Medicine Show at maximum volume, especially when she was cleaning house. One tape in particular stood out to me because it wasn’t music. Maybe it’s my imagination, but whenever my parents listened to Cheech & Chong’s self-titled first album, they seemed to always go straight to the track titled “Dave.”

If you’ve never heard the routine, there’s a guy named Dave trying to deliver drugs to someone’s apartment, but the guy inside is too high to understand what’s going on. I suppose because drug humor was pretty new at the time my parents acted like this was the most hilarious thing they’d ever heard. I guess you had to be there.

You’re probably asking yourself what any of this has to do with caring for Grandma. Well, as I said I heard this tape a lot growing up, and recently it dawned on me that one of my recurring conversations with Grandma is a lot like that infamous routine. I’m Dave, and Grandma is that guy who won’t open the door. It goes something like this:

“Grandma, what did you do with your lunch?” I ask.

“Well I ate it!” she replies.

“You couldn’t have eaten all of it because there was chicken. Where are the bones?” I ask.

“I don’t know anything about any bones,” she insists. “Maybe those people who were down here took them.”

At this point I know she’s either a) hidden her leftovers or b) thrown them in the trash, which I’ve asked her about a million times not to do because it attracts bugs.

I ask again. “The hospice people didn’t take your leftovers. What did you do with the stuff you didn’t eat in your lunch?”

“I didn’t have lunch.” she replies. “You mean supper?”

“For the love of god whatever you call it I brought you food and I want to know where the stuff you didn’t eat went,” I say, hurriedly slamming drawers closed and lifting chair seats with hidden compartments underneath in search of the missing chicken bones. Eventually I notice something that looks like food in her trash can.

“Why can’t you just leave your plate on the table?” I ask. “I don’t want you to put food in the trash because I don’t take it out every day.”

“Well they told me not to put stuff in there,” she replies. “So I don’t.”

“But your lunch is in there. So you do.” I reply.

“Well I was just trying to help,” she says.

“It’s not helping me when I have to play guess where you hid your food!” I yell, drowning out that voice in my head telling me to cut this conversation short and walk away.

“So I should leave my supper on the table?” she asks.

“Yes. Just like we’ve discussed a million times. I will take care of the leftovers.” I say.

“So let me get this. I leave my plate on the table when I’m done?” she repeats.

“Yes,” I mutter, even though I know the next time I come down to collect her dishes we’ll go through the same routine. That’s dementia: Amazing details from 50 years ago are as plain as day, but neither repetition nor recent reminders make anything new stick.

As I empty her trash and collect the dishes to go back upstairs, I wish my Mom were still alive. She’d get it when I told her I know how it feels to be Dave.

Grandma’s greatest gift

Grandma may no longer remember her own generosity, but her family will always be indebted to her for her many gifts that improved our lives in countless ways.

The basement is Grandma’s lair. And you never know what tales she’s telling down there.

This week, when Clark, the hospice chaplain, came upstairs after his visit with a puzzled look on his face, I braced myself. For literally anything.

“I learned something new about Margaret today,” he said, closing the door behind him.

“Uh-oh,” I said, every crazy story I’ve heard over the last eight years racing through my head.

“No it wasn’t bad,” Clark said. “I asked Margaret what was the greatest gift she’d given in her life. She told me when she was young her mother sometimes took in boarders. When she did, Margaret had to give up her room and sleep on the floor on a spot near the stove. At first her answer didn’t make sense. But when she explained that giving up her room was her gift to her mother, I understood how her answer fit my question.”

“Wow. I thought I knew everything about Grandma. But I’ve never heard that story,” I said, both surprised and relieved. Grandma’s filters disappeared a long time ago, so I was grateful she didn’t decide to share anything about her favorite topic, which is basically anything to do with her bowels. Rationally I know I’m not responsible for what comes out of her mouth, but if you’ve ever had a child blurt out something inappropriate in front of family, friends or even complete strangers, you understand the cringe of vicarious embarrassment.

Clark went on his way, but their conversation prompted me to think how I would’ve answered that question for her. From cars to tuition assistance to houses to live in, Grandma has given four generations of her family the support they needed when it mattered most. When I was young she and Grandpa bought a house for her widowed mother, my Mother and me to live in. When my Mother needed a bigger house for her growing family, they helped her out on housing again.

When I moved back from England after my plans to live there fell through, they bought me a car to get back and forth to work. When I found myself with a new baby and a year left of college, she and Grandpa bought my husband and I a house so I could focus on school rather than paying the rent. And when a nasty divorce left me reeling financially, she came through again, providing the down payment for the house that allowed me to finish raising my daughters in a neighborhood rather than an apartment complex.

My Grandpa provided the sweat equity that helped make those modest houses homes, but it was Grandma who provided the capital. From her humble beginnings on an Eskridge, Kansas farm, she went on to a successful career at Southwestern Bell. Between their two salaries and spendthrift ways, Grandma and Grandpa managed to provide for their own retirement and still help their family again and again. I help my own children whenever I can, but the modest gifts I’m able to give them pale in comparison to the ones Grandma gave me.

Of course not all Grandma’s gifts have been tangible. She’s taught me dozens of life lessons my Mother was unable or unwilling to teach. She married the man who became the best grandfather a girl could ever hope for. And she played the role of grandmother to every one of my girls, none of whom remember my Mother. The girls had other grandparents, but some of them were far away in England. They might not realize it now, but someday they’ll look back fondly on the years they lived with their great-grandmother. Despite the chaos and craziness, her presence in our household will give them a lifetime of memories and hopefully some insight into what being a family truly means.

Photo credit: igorklimov / 123RF Stock Photo

Hooray for hospice

Nobody knows what the future holds. But for now, hospice is making life infinitely better for Grandma and me.

More than once this year, Grandma has mentioned how lonely she is. She’s lost the ability to read or write emails; even the phone confuses her now. When friends send her a card and I read it to her, she has no idea who sent it.

Now that I work from home to care for Grandma, I feel sort of isolated too. More than once I’ve tallied my daily conversations and discovered I talked to more cats than people. Of course I can walk or drive anywhere I want. But during the work week my best bet is starting a conversation with the Meals on Wheels delivery guy. I know if I bring up KU basketball I can corner him for at least a few minutes.

Luckily for Grandma and me, I finally made progress in my search for caregiving assistance. Because she has a qualifying diagnosis (in her case congestive heart failure with a really long technical medical name I can’t remember), Grandma is eligible for hospice care. With weekly visits from a nurse and a bath aid — plus regular stop-ins from a social worker and clergywoman, Grandma has visitors to look forward to. And even if they’re not here every day, I no longer feel like I’m bearing this burden alone.

Prior to this, my only experience with hospice was when Grandpa died. There was a hospice house in Topeka, and he went there a few weeks before his death. They kept him as comfortable as they could and were very accommodating about visitors at all hours. They couldn’t save his life, but they helped make his final days bearable.

This time around is much different. As I mentioned the hospice employees come to us, which has reduced the number of doctor visits I have to arrange. They provided a hospital bed that we managed to convince Grandma to start sleeping in instead of the ratty old recliner she’s had for years. Her bath aid gives her weekly showers so I no longer have to cajole her into bathing. The nurse even gets her prescriptions delivered. These things may seem trivial, but when you combine them they have made life much easier for me and more pleasant for Grandma too.

Of course my first thought when I realized how great home-based hospice is was that it couldn’t last. The news is deluged with scare stories of Medicare cuts and death panels, so you wouldn’t think something as wonderful as hospice could ever dodge the funding axe. But so far it has. And because Grandma’s diagnosis is for a chronic condition, she’ll be eligible for help for the remainder of her life. I resisted the urge to hug the nurse when she told me this, but only just.

Hospice cannot stop Grandma’s downward dementia spiral. Hiding leftovers in the filing cabinet … stories of being trapped in a non-existent crawl space … accusing me of feeding her table scraps … these are just a few recent highlights of her current mental state. Likewise, hospice cannot reverse Grandma’s heart failure. Her heart is slowly but surely wearing out.

But hospice has reduced the need to take her out of the house, which is a big plus during flu season. And they provide companionship from people who haven’t heard her stories a million times. Most importantly, they enable me to keep her at home a little longer, which is where she wants to be. Here’s hoping I can continue to manage her care with hospice’s help — and that Medicare continues to provide this invaluable albeit somewhat obscure benefit.