A Low Situation and High Praise

When I got home with Nevin and Mariska from our walk a little after nine this morning I went to check on Freddie. He couldn’t wake up and was unresponsive, moaning a little. Our usual routine is that I get up at six, have coffee, browse a little on the Internet, walk the dogs, wake him up,  then get to work.  Today was different.

So I checked his blood sugar – quite low – and tried to get him to drink some orange juice. Unable to rouse him I called 911. The dispatcher had me put a glucose tablet in Freddie’s mouth while she sent an ambulance. The Pearland EMTs came quickly and by then his blood sugar had dropped more, into quite dangerous territory.

They were wonderfully helpful, courteous and friendly as always, and absolutely professional in caring for him. Freddie is stable now and resting at home.  There was an appointment with his ear doctor this afternoon that I had to cancel, but otherwise this is par for the course.  Every day is a surprise, and I must be ready for anything.

I thanked the EMTs very profusely, and they thanked me for being so well prepared.  I keep a spreadsheet with a list of Freddie’s medications, his health conditions, his past surgeries, and his doctors’ information at the ready and take it with us when we go to appointments.  A copy of Freddie’s Health Care Power of Attorney is kept in that folder, too.

I’m so grateful for the service the EMTs and all our medical professionals provide, and grateful that it’s possible for me to work from home and be present for Freddie when he needs me.  We’re lucky to live where we do, and that Freddie has access to this level of care.

Now, on to try to squeeze a little work into what’s left of the day.

The Cat Who Walks By Himself Is A Caregiver

My mother raised me to be both a reader and cat-lover. One of our favorite stories was “The Cat that Walked by Himself” from Rudyard Kipling’s “Just So Stories.” Whether childrens’ story or reconstructed fable, Kipling tells us about the domestication of animals and the peculiar nature of cats, loving yet solitary and always with their own agenda.

An Anniversary

Last Thursday Freddie was on his way to the bathroom and his legs starting shaking and wobbling as they do by the time he reached the far end of the living room. He fell, but luckily he landed on a pile of dog toys and had no injury.

At the time I’d been lying down, giving in again to the intense weariness that comes to me so often these days. Between the general level of stress, depression, uncertainty about life, and those anti-anxiety pills the doctor gave me, it isn’t surprising that I’m tired much of the time. We talked about it when I saw him recently. The doctor and I both know the situation I face these days, and I suppose it’s the bargain I’ve struck while I wait for something to happen.

The only thing that is happening, though, is that Freddie is not getting better. Every day, slowly, he seems to get worse. That same evening while watching television he got up for the bathroom again.

“Do you need the walker?”

“I’ll be fine.”

And next he’s at the edge of the room, shaking, legs like noodles

“I’m bringing you the walker.”

“I need you.”

So I got up and ran. I held him from behind in a tight hug until he stabilized.

“I’m not always going to be able to follow around after you to catch you when you fall.”

To that, he has no answer.

Then I brought over his walker and sent him on his way.

And so, the walker. He does not use it. I don’t know if he forgets it, with his cognitive impairment, or if it’s too inconvenient in some sense of being less convenient than falling, or if it’s pride. Most likely it’s simply ingrained habit.

Whatever it is, it’s also a ticking time bomb with a hidden clock. One more fall, I tell him, is a broken hip or a concussion or worse. The choice is up to you, I say. And yes, he agrees. And then we go on as before.

Friday evening, same scenario, in the kitchen. He comes for a glass of ice tea but only makes it as far as the counter five feet away from his Laz-Z-Boy recliner. Once again, the tight hug to keep him on his feet. And then he’s back in his chair, I get the tea, I make another pitcher, then get back to bustling around the kitchen cleaning up after dinner.

We’ve owned this house six years this weekend, moving from a two-story historic home in a walkable tree-lined neighborhood to a single-story neo-traditional in a vast sea of similar suburban homes, fifty miles closer to Freddie’s doctors and preferred hospitals. The trees are small, there are no squirrels, and we must get in the car to reach everywhere we go.  With his increasing number of doctor visits and occasional hospital stays, we accepted this compromise. We knew – sort of – what was ahead for us. But we had no idea it would happen this soon, nor in quite this way.

Six years ago he was walking and active and there were no falls. That same year both my parents passed away. Freddie was with me every step, strong and supportive, even able to help clear out my mother’s apartment, lifting furniture and boxes, driving a U-Haul truck.

And now he cannot drive.

Oh, mirror in the sky, what is love?
Can the child in my heart rise above?
Can I sail through the changing ocean tides?
Can I handle the seasons of my life?

Well I’ve been afraid of changing
‘Cause I’ve built my life around you.
But time makes you bolder,
Even children get older,
And I’m getting older, too.

 Landslide, Stevie Nicks, 1975

Guest Post: Caring for the Love of My Life: Our Cancer Story

The following is a guest post from Cameron Von St James about caregiving and his experiences as a caregiver with his wife’s cancer.

The year of 2005 was unforgettable to my family. It was the year that my wife Heather was diagnosed with cancer. She had malignant pleural mesothelioma. That day, I became her caregiver, and life changed for us in many ways. I wasn’t ready to become a caregiver right away. It took a lot of patience and understanding. During this time, there was another life that I was also in charge of. Our newborn girl Lily had been welcomed into the world just three months before Heather’s diagnosis. While we had been preparing for a happy first Christmas, everything came to a shocking halt.

I didn’t really know where to start as a caregiver for someone with cancer. However, my journey began right as we left the doctor’s office. The doctor told us about mesothelioma, and laid out some options for treatment. There were three choices: a local university hospital, a regional hospital that offered excellent services but had no mesothelioma program, or a doctor from Boston who specialized in mesothelioma named David Sugarbaker. I remember looking at my wife wanting to know what she thought, but neither of us could speak at first. I didn’t know what to do but I had to speak up. I declared, “Get us to Boston!” This was one of the first decisions that I remember making as a new caregiver for my wife.

Transitions

Here I am again after another long absence. I tell people sometimes that I feel like the author Fran Lebowitz, who has spent more of her career talking about not writing than actually writing anything for publication. And of course, I am neither published nor anywhere near as skilled as she.

For me this is a time of transition, but I don’t know the destination. I have two jobs, one as a full-time caregiver for my partner Freddie, the other as caretaker and editor for my late friend Keith’s web sites. The future of both positions is unclear. I wait for Freddie to get better or get worse, pondering our future lives. I wait for Keith’s estate to be settled, pondering my future career options while also managing a tight budget and financial uncertainty. Each day is lived more and more in the moment as I try not to worry about things I cannot control.

Freddie had six short to medium-term hospitalizations in 2011, and a somewhat lengthier stay in 2012. His problems are – to use my new favorite term – “muti-factorial.” A Type 1 diabetic since childhood and a long-term HIV survivor, he has been officially disabled since the early 1990s. When we met in 2000 he was doing relatively well but then fell off a ladder just days before we moved in together. Our life as a couple has revolved around his health, increasingly so in the last few years. There’s been a stroke. A pulmonary embolism. A heart attack and then quadruple bypass. Surgery on his cervical spine. And over all of this, increasing fatigue and mild cognitive impairment.

As this has progressed I am now the one in charge of everything, from medical matters to walking the dogs to cooking the dinners to cleaning the commodes. It all comes down to me.

There are times when I feel resentment or anger, or more often, a simple desire to escape. I have come to recognize, however, that my feelings are simply that, feelings. They do not define me or control me. My feelings come and go. They are not the essence of myself. Once I recognize them and express them in some appropriate way, my decisions and actions are what truly matter.

Beyond that, I choose to cultivate gratitude. I know that I am lucky to have the opportunity to work from home and set my own hours. I am lucky that Freddie is still alive. I am lucky that, in spite of financial challenges, we are still in our home, can pay our bills, keep our dogs and cat happy, and keep food on the table. And the dogs and cat love us so. For all these things I am grateful.

And thus I choose to carry on.

A Friend Indeed Is Now In Need

Update January 4, 2013: Keith’s battle ended on September 18 when he passed away.  I have deleted the links for donations for his health expenses.  I am grateful to all who read this post and who contributed in any way, with prayer, good thoughts, or donations.

Keith’s memory lives on.  His closest friends will be releasing his ashes at Mardi Gras 2013 in New Orleans, his beloved longtime home.

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I seldom write here these days, having been called away by more pressing concerns.  One of those pressing concerns now brings me back to this space.

For the last twelve years I’ve worked with my friend Keith Griffth on his web sites.  Since the 1990s in his sites, and in other ways for years before that, he has been a shining example to the gay community.  His work has provided a waypost  for those on journeys of adventure or self-discovery as well closeted or non-gay-identified men who seek a path in a difficult world.  As one who worked for HIV/AIDS causes and for sex-positive issues, Keith has done much to raise awareness, fight negative self-images, and yes, even save lives.  He has always been a fighter.

Now fighting lymphoma again, Keith is in his final battle.  And now he needs your help.  Not having health insurance, his expenses for hospice and health care are mounting.  Your contribution, even a small amount of five, ten, or twenty dollars, can make a tremendous difference.  It all adds up to a community of care.

El Día de los Muertos and Mayonnaise Cake

Feddie, Bonnie, and Bob: Kemah Boardwalk at Christmas

Last year I wrote about how I’d grown up with the tradition of El Día de los Muertos – the Day of the Dead celebrated November 1 and 2 – through my family’s several spins of Air Force life in San Antonio and our eventual adoption of it as our home.  Coming just a year after my parents’ passing, it was a special and poignant time for me.  This year, I’m remembering them, and I’m also making a special remembrance for Freddie’s sister Bonnie who left us in February.  My ofrenda for 2009 is Bonnie’s Mayonnaise Cake.

The tradition described in Wikipedia:

Ofrendas are also put in homes, usually with foods such as candied pumpkin, pan de muerto (“bread of the dead”), sugar skulls and beverages such as atole. The ofrendas are left out in the homes as a welcoming gesture for the deceased. Some people believe the spirits of the dead eat the “spiritual essence” of the ofrendas food, so even though the celebrators eat the food after the festivities, they believe it lacks nutritional value.

My own tradition, of course, is to eat the foods and talk and tell stories about our beloved departed.

Bonnie sent us this recipe on January 24; less than a month later, she was gone.  She had come to live with us briefly in San Diego in late 2001, not long after her diagnosis with leukemia.  Within nine months, we all had relocated, first Bonnie back to Indiana, then Freddie and I to Galveston.  She visited us once on the Island at Christmas, but her most fervent wish was to get back home to be closer to her adult children.  I last saw her around Thanksgiving, 2007 in Indianapolis when we stopped by on our way to spend the holiday with Freddie’s parents.  Freddie grew so much closer to Bonnie in those couple years, often speaking with her on the phone every day.  It’s a loss that has not healed.

In any case, the cake is wonderful and easy to make:

2 cups flour
1-1/4 cup sugar
3 or 4 tablespoons cocoa powder
1 cup mayonnaise
2 teaspoons baking soda in 1 cup warm water
1 teaspoon vanilla

Mix flour, sugar, and cocoa powder into a large bowl.  Stir in mayonnaise.  Gradually add in water mixture and vanilla.  Pour into two greased and floured 9-inch pans.  Bake at 325 degrees for 30-35 minutes.

Something Bright

Here’s the Eurovision entry from the Netherlands, from the Toppers (and I bet they are). What a great upbeat song with a positive message. And of course, it reminds me of my favorite Eurodisco ABBA songs of the late ’70s.

The Toppers are threatening to boycott Eurovision, held in Moscow this year, in response to a call from Russian gays. Last year’s Pride Parade was subject to violent police interference; this year’s may be shut down my force. (More from Joe. My. God.)

Maybe…

Freddie is tired of tests and referrals. So many times, so many doctors, so many non-answers.

In the doctor’s office Thursday, after the doctor had stepped out to arrange for Freddie’s hospital admission for the battery of tests next week, he expressed it again:

I’ve done this before. It’s always the same. They don’t know why. Don’t know what to do. Always another pill, another test, another frustration.

Venting, of course, but still…

I quietly sang a three word reply:

“Maybe this time…”

Natasha was spectacular, wasn’t she.

Major Cover Version

I love this version of Major Tom (Coming Home) from Shiny Toy Guns. It’s sampled in a Lincoln commercial, and I want to sing along whenever I see it.