Warm Fruit Soup and The Better Part

Last night I joined a couple hundred ladies for a short “women’s conference” at my church. I really didn’t want to be there—I’m still grading papers, even at the end of spring break, laundry is undone and the house is a shambles—but the title was “Mary or Martha? Responding to Christ in Your Life.”

I had to go.

Christ in the House of Mary and Martha, Vermeer, 1654.

For those not familiar with the story, Martha and Mary of Bethany were sisters of Lazarus and friends of Jesus. Their story, told in the Gospel of Luke (10:38-42) involves Martha, who is busy preparing dinner and being a hostess, and her sister Mary (not the mother of Jesus), sitting at Jesus’ feet listening to his message. When Martha complains that Mary isn’t helping, Jesus gently points out that those details don’t matter, that Mary has chosen the better part.

Most modern women have a Martha complex. We want everything to be neat, orderly, clean, and perfect. We want to entertain in style and provide a gracious home for our families and guests. We plan, and we’re annoyed when plans blow up. We struggle to balance these desires with jobs, volunteer work, and perhaps marriage and/or motherhood.  The Martha/Mary story does not seem to resonate with men. It’s a girl thing.

So, what does this have to do with fruit soup?

The leader of the conference was a fellow parishioner named Andrea. She is the mother of 9 kids, and one awesome woman. She shared a number of stories about trying to live a Mary life in a Martha world, and her failures along with her successes were an inspiration.  But the story that stuck with me was the one about warm fruit soup.

Andrea is active in the Schoenstatt movement, a Marian mission started in Germany in 1914. She told a story related in a book by the founder of the movement, Father Joseph Kentenich. A young girl entered the novitiate at a convent in northern Germany. At the first meal, a bowl of warm fruit soup was placed in front of her. This was not anything she was used to eating, but the nun sitting next to her said she didn’t need to eat it. However, the mother superior was seated on the other side of her, and she said “You will be brave.”

Andrea challenged us to look for the examples of the “warm fruit soup” in our lives, and to overcome inner resistance and aversion to the unfamiliar. All of us who are “Marthas” want to have control of our lives, so we often resist change. What we need to do is find the courage to direct the emotions and passions we’re feeling in the right direction. If we connect our aversions to something we love, we can overcome them.

In the past week I’ve had to deal with coming home to a smoky, smelly mess in my kitchen which is still unexplained. Alzheimer’s hubby couldn’t tell me why my prized LeCreuset roasting plan was a blackened hulk, full of ash and the remains of a zipper, on the stove. At least the house didn’t burn down. Dear friends showed up to rescue the evening with awesome carryout from The Bowllery and a bottle of wine. Later that evening I hid the stove knobs and the oven knobs—we’ve had a few near misses there, too.

When I decided to cook on the stovetop a few days later, I turned on the stove and realized it doesn’t work anymore. It will get things warm, not hot.

Great, another thing to fix—another credit card bill.

We’ve had some power surges, and I’m guessing we have an electrical problem in the kitchen. I just pray the house doesn’t burn down before I figure out what it is and find the money to fix it.

The upside? I am now an expert at cooking noodles in the microwave.

Andrea’s fruit soup story has become a mantra in less than 24 hours. I even have a Post-it note over the bathroom mirror with “Warm Fruit Soup” written on it, to remind me to be brave and to decide what’s really worth getting worked up about, and what can be ignored.  Dipping into something new doesn’t have to be unpleasant or scary. It’s up to me to control my emotions, especially my response to them.

So the papers aren’t graded, there are too many shoes and books laying around the house, the yard looks like hell and the laundry isn’t folded. That’s OK. Like Martha, I’m trying to find the better part, to figure out what’s really important, and to pick my battles. To be more like her sister Mary.

And while we’re at it, here’s a German recipe for warm fruit soup that looks really interesting.

This post originally appeared on the blog The View From Little D on March 16, 2013.

The Power and the Glory of Caregiving

I teach until 6:30 on Wednesday evenings, but try to get home to go to 7:00 Mass and Adoration. Bill likes to attend a class at the church that begins around 7:30. It works well for us—I get a couple of hours of peace and quiet alone, he gets some fellowship with friends, and life is good.

Leaving the office tonight I called home (we still can’t find his cell phone—I should just cancel that number) and he didn’t answer. I called home 5 times and each time it went to voice mail. So I swung by the house on the way to church, hoping he had walked to the church a few blocks away.

My headlights illuminated the driveway and I noticed the Honda was gone.

The Honda—old, decrepit, and we need to sell it. It isn’t registered, isn’t insured, and isn’t inspected. It’s completely illegal.

Did I mention I took his driver’s license away from him after the last time he got lost?

Somehow, somewhere, he’s found a key to that car and gone somewhere.

In the past, I would panic. I’d fret, I’d pace the floor, I’d rant, and possibly call a friend for support. Not this time.

I drove straight to church, hoping to find the Honda in the parking lot. It wasn’t there. So what did I do?

I went to Mass. It was lovely, as it always is on Wednesday nights. Father asked me to lead the singing when the Blessed Sacrament was exposed, and even though I’m still hoarse from an unending upper respiratory infection, I did.

The peace and silence of adoration is indescribable if you aren’t Catholic and haven’t experienced it. The beauty of solitude is healing.  I prayed for Bill’s safe return, and prayed that I would be able to handle whatever came along.

I returned home about 8:00 and the Honda was in the driveway.  I went into the house and saw Bill and calmly asked him where he had gone. He didn’t answer at first—he said he was on his way to church.  I pointed out that he was late for class, and wondered where he was when I came by earlier.  He didn’t seem to know, or didn’t want to answer. Then he said he had taken his computer to Best Buy to get it fixed, because it didn’t work.

What followed could have escalated. He ran out to the car and said he was driving to church because he was tired of me “keeping him a prisoner” in the house. I calmly explained that he got lost (which he denied) and that the car was not registered, inspected or insured, and therefore illegal to drive. He got in the car, and I stood in front of it. Once in the car, he couldn’t find the keys. Looking around the car, he couldn’t find the keys anywhere. He got out, and was getting agitated. I told him I’d take him to church, but he had to go back and get his book.

Once inside I asked him where the computer was. He didn’t know. He found his book, and then ran back to the Honda to look for the computer. It wasn’t there. I suggested he had left it at Best Buy, but he insisted he didn’t. We went back into the house, and I found the computer tucked away on a shelf. Reassured, Bill agreed to go to church, so I took him.

Upon my return home, I looked for the power cord to the computer. It was completely missing. That happens around here. Things seem to disappear into the air. I can’t find clothes, dishes, books, household items.  I did find the Honda key he had used—then lost—and secured it. But the power cord to the computer had vanished, and I’m pretty sure that’s all that’s wrong with the computer—no power.

And that is the problem—no power. No power to think, no power to reason, no power to remember, no power to adhere to a schedule or keep a neat house. His short term memory is down to seconds, not hours, days or months. I know I need to get someone into the house to spend more time with him, to stimulate him intellectually, but I don’t know how to do that. They all cost money. He has few friends of his own—most are my friends. He seems content most days, but I know the long hours alone while I’m at school are causing his mind to wander and facilitating his constant rearranging of things. It’s overwhelming, for sure.

Less than two weeks ago I met a friend for coffee on a Saturday morning after Mass, while Bill was at his men’s faith sharing group. My friend has a counseling background, and she grilled me. She then suggested I start seeing a counselor and get some exercise as a diversion to manage the stress. I agreed, and said I would do so.

A week later I’m at confession. Father George always asks about Bill. As I’m going through my laundry list of sins and stresses he interrupted me, took my hand and said “Sam, you need to get some exercise, and some recreation, or the stress will kill you and you won’t be any good to your students or to Bill.” I agreed.

Monday I saw my doctor, who reviewed my lab work with me, and told me—big surprise here—I needed to start getting some exercise to manage my stress, and find some recreational activity for a break from the stress.

I guess I need to listen. All those people who tell me the caregiver needs to take care of herself are right. I just need to start doing it.

I will, as soon as I find the power cord to Bill’s computer and make sure it’s working properly.

This post originally appeared on The View from Little D blog on Feb. 6, 2013.

Self-Sufficiency, Faith and Home Repair

I have a bunch of books on dealing with Alzheimer’s. Some I bought, others were given to me. I’ve thumbed through all of them, read parts of most of them, and have many websites bookmarked as well. I’m no expert, but I’m moving out of the denial phase, although I’m still mad as Hell about this disease that’s taking my guy away from me.  One of the things I’m getting used to is doing everything, and making most decisions, on my own.

My dad taught me self-sufficiency. This is a guy who gave me a tool box, including a power drill and skill saw, for Christmas after I moved to Indianapolis. I was thrilled. I won’t say I’m as good a carpenter as he was, but I can hold my own with power tools, a caulk gun, and I’m a passable plumber. I love to paint, garden and am pretty good at other fix-it projects.  Daddy’s Little Girl wasn’t going to depend on a man for anything, especially since I came of age during the women’s liberation movement. I even changed the oil in my 1967 Camaro convertible.

Image from Best Car Auto blog.

Thirty years of marriage to a guy who was pretty handy with tools has spoiled me, especially since the first three years of our marriage were spent in Saudi Arabia with servants and maintenance at our beck and call. He was also the computer geek, doing all the setups and maintenance on computers since we bought our first home computer in 1985. Whether it was testosterone, chivalry or male pride (he’s always been very protective of me), Bill took over all the maintenance, and made the decision when outside help needed to be called. Our house in Houston was newly-built, so maintenance wasn't an issue.  I’ve been spoiled for 30 years. Until a few years ago, with two pretty good incomes, we could afford to hire “help” when things needed doing. Life was good.

Fast forward to Denton, Texas, 2013, where we inherited his parents’ house, which I love.  As they say, this house has “good bones” but his parents did nothing more than change the light bulbs for 30 years.  The floor plan is great, the yard and neighborhood are wonderful, and the pool is nice, even though it’s a giant hole in the ground we throw money into all summer. I have a vision of what this house could look like with the right amount of money and sweat equity. That was before the big D—dementia—came into play.

So now I find myself doing, or making decisions about everything. Prioritizing is tough, and finding things for Bill to do to keep him mentally engaged without constant supervision is a challenge. Everything takes four times as long to do.  And we’re still clearing out his dad’s “collections.”  I think hoarding is genetic in the Bufkins family.

In the last two weeks a car was parked without a parking break and rolled through the fence into the neighbor’s yard, the garbage disposal is backed up again, the pool pump quit (during freezing weather), the microwave and bedroom TV both quit (and we replaced the TV first—LOL!), an electrical outlet in the living room doesn’t work, and I had to ship my laptop back to the manufacturer for a warranty repair. We still can’t find Bill’s cell phone, which I’m sure is lost somewhere in the house. I’ve spent all afternoon today setting up Bill’s laptop, because when he bought it in March he never really understood how to set it up correctly, and has been unable to use it—and I need it now until mine is back from the shop. I’m still trying to sort out passwords and things, but have learned that I can be the computer geek too.  

Oh yeah, I tripped and fell and threw out my back.

The good news is we went to the home of dear friends today for an informal brunch, and Bill was engaged in conversation, and even provided a lot of job search advice to our friend’s brother, who’s in the job hunt. He is brilliant when it comes to giving career advice to someone needing a resume revision, but he can’t tie his shoes without assistance. That’s what’s so frustrating about this disease—there’s no rhyme or reason to the parts of the brain affected, and you never really know which Bill will show up at any given moment. I’m always on edge when we go to someone’s house. Will he do something weird? Will he say something strange? I’m still not over my upbringing by a mother to whom “what other people think” was paramount, but I'm learning to be OK with the idea of him wearing two wristwatches.  I’m trying not to let the stress get to me. It was comforting when our hostess said “Bill is doing great today.” I know I need to find more engagement opportunities for him, with or without me.

I’m grateful to have a circle of friends who are aware of the disease, and are very patient with him (and me) about it. I’ve heard of cases where someone gets dementia—or has a head injury—and friends desert the couple. So far, that hasn’t been the case with us, but this is still very new. In fact, people seem to be coming out of the woodwork to help, and I’m not sure how to handle that—I hope I can repay their love and support at some time in the future.  I give thanks to God for these people and the help they’ve offered, and pray they don’t get burned out over what will surely be a long road ahead as this disease progresses, along with my response to it.

I miss the guy I married. But I know I can’t have him back. For whatever reason, God has given us this test, and I’m working on accepting it, and doing everything I can to keep our lives on an even keel while trying not to be overcome by anxiety and anger at this hand we’ve been dealt.

Friends are the family you choose

I've never been good at asking for help. I'm the one who usually jumps in to help or lend an ear when someone's suffering. So dealing with the progression of Bill's dementia--and all that comes with it--has been a journey.  I haven't had time to get involved with the Alzheimer's Association, but I know I need to schedule time for that, and soon. I'd also like to start a support group for dementia caregivers at our church.

We don't have family around us. My brother, Mike, lives in Florida and we're not particularly close. Bill's brother, Jim, lives in Denton but is disabled himself. I always thought we'd be taking care of him. Now I realize I may be relying on him more and more in the future. There aren't nieces or nephews, so we're kind of on our own--or so I thought.

Three years ago I attended an ACTS retreat with women from Denton. It was truly life-changing, and it led to more involvement in my church, more contacts, and yes, more friends. Since then I've served on three ACTS retreat teams, and have become closer friends with many of the women in that group. Together we've shared triumphs and tragedies, milestones and miracles. I plan to continue to serve this ministry because serving others keeps me centered in my faith.

After my last blog post, several of my ACTS sisters apologized for not being available. Well, heck, I never thought to call them. I've always been independent, and Bill and I have always had the means to take care of ourselves. That's not necessarily the case these days, as this old house needs maintenance and cosmetic surgery and that takes money, time and organization, all of which are in short supply.

My mother (isn't everything our mother's fault?) was obsessed with "what will others think?" and so the idea of asking for help was never, ever encouraged as we grew up.  It's hard to shake an upbringing like that. I'm a kid who spent a summer at home in a body cast and nobody knew about it--it was a deep dark secret. Nobody came to visit me because, "what would somebody think?" My mother was ashamed she had given birth to an imperfect child needing surgery for a birth defect. Baggage like that is heavy and hard to dump as life goes on. Years after her death, I'm still trying to please my mother.

But my ACTS fellowship, and maturity, have mellowed me. Early last week Brittany, who lives in the neighborhood, showed up on the porch with a casserole and freshly-baked pie. Why? Because she could do it. Her beautiful, smiling face--accompanied by her charming children--brightened our evening.  She noticed the many oak trees in our yard had deposited their leaves and we hadn't touched them, and she said "we'll come over Saturday and rake leaves." It wasn't a question--"would you like us to....?", but a statement of fact. People are always asking me what they can do to help, and I usually can't think of anything that wouldn't be a major inconvenience. But she saw a need and volunteered.

I thought, "That's nice" and pretty much forgot about it. Friday night our ACTS couples group got together, and we had fun. The next day was the Feast of the Immaculate Conception, so Bill and I were singing in the choir at 10 a.m. Mass. After we got home, I checked email and noticed Brittany had sent an email to everyone in the group that they were gathering at our house to rake leaves. I initially panicked because the place is a disaster, (Mother again) but then took a deep breath and thought "These are our friends, they know things are difficult, and it will be OK."

Brittany, her husband Kurtis and our friend Lance were at the door shortly after we had changed into our grubbies.

 "We're here to rake your leaves!" she said with her infectious smile. They started attacking the yard, with Kurtis getting on the roof to blow leaves out of the gutters. Before long Jeanne showed up with her teenagers and a friend's kid and they all attacked the yard like a little army. I made a run to the store for more leaf bags and picked up drinks and snacks.

Before long the bags were piling up and Ana and Michelle zoomed up in Ana's cute red convertible, apologizing for not seeing the email sooner.  Our dog Holly enjoyed running through the leaves, and I even let the girls into the house to meet the cats. I got over my embarrassment pretty fast when I realized they didn't care that the place didn't look like Martha Stewart lived here.

After a couple of hours of work on a mild day there were 83 bags of leaves piled up by the curb.

While in the back yard somebody noticed the green pool and asked if the pump worked.

"No, that quit just at the end of the season, and Bill had his surgery so we didn't get the pool covered and winterized before all the leaves fell."

The guys and gals walked around and asked about a few other things that need attention--we inherited this house from Bill's dad, who hadn't done much more than change the light bulbs for 30 years. It's a great house that needs a little love and attention.  We talked about the possibility of another work party, and Kurtis offered to do a couple of things that really should be done.

I'm so grateful to these friends and their kids who gave up half of a Saturday to help us out. But this is about more than raking leaves and enjoying a nice day outside.

The lesson I learned for myself is to accept help when it's offered, and ask when needed.

And here's a little unsolicited advice for friends and relatives of someone dealing with any kind of adversity, crisis, illness, etc. The question "can I do anything to help?" can be overwhelming. Yes, there is something you can do to help, but the caregiver may be too overwhelmed or embarrassed to say what it is.  Like me, they may also not know what you're willing to do. So take a cue from what Brittany and our friends did--notice something that needs doing and do it. Don't be intrusive, but I assure you it's comforting to realize somebody IS willing to help with a simple task that's been pushed to the bottom of the priority pile.

This post originally appeared on The View from Little D on 12/10/2012.

Plumbing the Mind of an Alzheimer's Patient

Alzheimer's and dementia are apparently unpredictable. My husband Bill can remember details from his childhood, from college classes, from our travels years ago that I find amazing. But he can't remember whether I'm having a glass of red or white wine when he asks me if I want a refill.  And he brings the refill in a different glass, if he brings it at all.

Half the time he can't remember if he's eaten. I wish I could watch him 24/7 but I can't.

He loves to cook, and he likes to clean the kitchen when he's done cooking. Nowadays his idea of cleaning includes putting pots and pans away with Mother's antique crystal, disposable plastic carryout containers with the fine china, and fruit in the clearly-labeled "meat" bin of the refrigerator.

Take the stopped up kitchen sink saga. I'm extremely busy, and have been recovering from bronchitis and antibiotic-resistant strep while trying to keep up with my classes. Suddenly, the kitchen sink backed up. Bill patiently bailed water out, and poured liquid drain clearing products down the sink to no avail for a couple of days before I insisted it be fixed.

He used to be handy--not as good as my late father, who could build or fix anything--but pretty good with things like this. I tend to forget he's losing executive function and some logical thought processes. So I trusted his word when he said he was "working on it."

Stuff piled up in the kitchen, as it tends to do these days. He takes three times as long to do things as he used to. But finally I lost it and said "When is this thing going to be fixed?" We can't afford the $200 for a plumber, and instinctively I know this is something we should be able to fix ourselves. I want him to maintain his self-esteem, so I want him, encourage him, nag him to fix something I know is simple to fix--something he's done before. I'm thinking if he fixes it he'll feel like he's accomplished something.

Hours later, he tells me it's fixed. I check. Nothing has been done. I lose it. I pull everything out from under the sink, put a bucket under the trap, and pull the PVC pipe, which is easy enough to do without tools. The clog is obvious, so I hand Bill the pipe to clear out, and I go back to working on grading student papers.

I see him outside cleaning the pipe with the water hose, and naively assume he'll put it all back together. Nope. So I put it back together, run water down the sink, and after about 5 minutes it's apparent the clog extends into the section of pipe that goes into the wall and out of the house.

Did I mention this is the morning of Thanksgiving day?

Once again, I pull all the pipe out, and we go in search of his dad's plumber's snake, which is rusty and doesn't work properly. Long story short, we got it working and seemed to clear the clog, but of course the only way to test it is to reassemble everything and run water through it. I'm being stubborn and refusing to put the turkey in the oven until I have a kitchen sink that drains properly. Bill assures me he can put it back together, and I return to grading the seemingly endless stack of student papers.

About an hour later he comes to tell me the sink is fixed and I can start preparing the turkey. I walk into the kitchen to see the pipe in pieces all over the place and the garbage disposal on the floor.

I blew up.

"Why did you take the garbage disposal out?" I screamed, knowing deep down inside I was mad at the disease, not him.

"I didn't!" he insisted. "How did it end up on the floor?" I screamed. "I don't know!" he responded. An argument ensued--yes, all the books say don't argue with them, but human nature gets in the way of logic when it's after noon on Thanksgiving, the turkey isn't in the oven and the entire kitchen drainage system is in pieces on the floor.

Did I mention he had loaded the dishwasher and was about to turn it on? That would have flooded the kitchen.

"Happy Thanksgiving!" I shouted and stormed out of the house. I got in my car with no idea of where to go, just that I wanted desperately to be away from this situation that I did not sign up for.

I want my husband back. You know, the quiet guy with the incredible intellect for philosophy, history, politics, economics, art and religion. The artistic guy who once played Chopin on the piano and could fly through Bach fugues as if his fingers were weightless. The guy who loved art and literature and adopted football and basketball with abandon after we were married. The guy who taught me about baseball and with whom I shared a love for long distance bicycling. The guy who spoke five languages and has an MBA in finance.

Looking at him now he's an old man, hunched over and pathetic-looking as I squeal out of the driveway. I drive around the block and come home.

Walking back into the kitchen I contemplate calling a plumber and then decide to try to figure it out on my own, which is harder to do since I didn't take it apart and don't know how the garbage disposal was installed in the first place.  He's scattered parts around the kitchen and his logical problem solving skills are shot.

Somehow, after about an hour of trial and error, some head-banging and the use of my entire Marine Corps vocabulary, we got it back together and could verify that water would run through the sink and into the sewer as God and the original plumbing contractors desired.

It's now nearly 4:00 p.m. and time to put the turkey in the oven. I'm mad but hungry. Bill is clueless. He has no sense of time, and cheerfully follows instructions as I rush to make stuffing, prep the bird and cover it with a basketweave of bacon strips (which is delicious, by the way). We pop the bird in the oven, knowing dinner won't happen until 8:30 or 9:00 p.m.

But to the Alzheimer's patient, at least the one I'm married to, time means nothing.

Like the plumbing in my kitchen, something is blocked in the plumbing of his mind. The various drug cocktails don't seem to be working. My stress and frustration grow by the day. But dinner was good.

Originally posted 12/2/12 on The View From Little D.

The Long Goodbye

They haven't used the "A" word yet, but....

Looking back, I should have seen it coming. The inability to put things back where they belonged. Forgetting what I just said to him. Repeating himself. But he'd always been a little ADD, a little forgetful, so I blew it all off. My husband Bill was a lot like the rest of his family--brilliant, intellectual, and a little eccentric.

Then I returned from a mission trip to Guatemala, and after being up since 3:00 a.m. was exhausted upon my return to DFW Airport in early afternoon. I texted him from the runway--no response. I called him and left a message from customs, figuring he was en route and could just pull up to the curb rather than pay to park. No response. So I waited, assuring my travel companions he'd be here and I'd get home just fine.

About 45 minutes after the rest of my group left, he appeared, smiling, thinking nothing was wrong. I was annoyed but happy to finally be in the car on the way home. He'd forgotten his phone (a frequent occurrence) and didn't get my messages. Once in the car I promptly fell asleep before we'd left the airport on our way back to Denton.

When I awoke, I was stunned to be in a congested intersection near the Ikea store in Frisco, a good 26 miles from Denton and definitely not on the route home. 

"Why are we here?" I asked. He couldn't answer. In his defense, there is a lot of construction around DFW Airport's north entrance, but still---I know he's a man, but he usually asks directions. He had no clue how we'd gotten there, and wasn't sure how to get home. Believe me when I say things were tense.

Not long after that he had a routine physical, and I reminded him to tell the doctor about his memory issues. Other things had happened--bills weren't paid, doors were left unlocked, things went missing around the house. He's always handled the finances, I'm the only one working right now, and teaching is more than a full time job.

He came home from the doctor's office with a prescription for an anti-depressant. I immediately emailed her and asked if he'd told her about getting lost on the way home from the airport. He hadn't--because he couldn't remember it. That's when we knew we had a problem, and she referred me to UT Southwestern Medical School Memory Clinic, which takes months to get an appointment.

Future blog posts will discuss the odyssey we're going through, but know that right now we have a non-specific diagnosis of "early-onset dementia." I know in my heart it's Alzheimer's Disease, but they can't say for sure. All the signs are there. And I'm having to come to grips with the fact that my life has just radically changed. And will continue to change. Every day is a 36-Hour Day, already.

Originally posted 10/13/12 at The View From Little D.