A New Direction

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I was at a friend’s house recently on a weekend afternoon and asked where her husband was. She said he had taken her son to a birthday party and gotten lost.

“Who gets lost anymore?” I asked.

Not me. I have wholeheartedly embraced Waze, the world’s largest community-based traffic and navigation app. This somewhat technologically-challenged middle-aged mom is on board. When my husband first told me about the concept, I scoffed. After all, I usually knew where I was going or I could use the GPS in my mini-van. I didn’t need a new-fangled app thing to tell me where I was going.

How wrong I was. I love Waze. I use it, even when I know where I’m going, to check which is the most direct route given traffic, construction, etc. at any given time. Anything I can do to avoid sitting in traffic makes me happy. Sure, I could make use of time in the car listening to books or podcasts but I’d rather be laying comfortably on my couch reading a book or catching an episode of something on Netflix. Sitting in the car for no good reason – not so much.

One may lament the fact that it’s difficult to get lost these days. After all, sometimes the road less traveled takes you to unique, wondrous places. Ah, fear not. The beauty of the crowd-sourcing app is that it takes you down streets and through neighborhoods you’ve never seen without the anxiety of having no idea where you are. You still get the glorious feeling of wandering off the beaten track while feeling confident that you will get where you intended to go. Win-win in my book.

My husband told me that at first he was skeptical of the lovely lady voice telling him where to go, as sometimes it just seemed like an outrageous route she would suggest. It was sort of the equivalent of not wanting to ask for directions. It turned out that he learned to trust her and would get burned if he went against her advice. I too have learned to trust the lovely lady in my phone and have come to think of her as an adventurous, wise friend. My husband went so far as to buy her a stand for my car, a pedestal if you will, where she can easily be perched to safely aid in my following her directions. I hang on her every word.

This app has opened up my world, giving me confidence to drive to places where I may not have ventured by car before. My late mother would argue that public transportation is the way to go – she was a poster child for the subway, but I prefer the comfort of my car with the ability to come and go as I please.

I have a new mission control to help me get around in the form of a handy app. I feel like an explorer. It’s the “Marco” to my “Polo.” Just me and my girl Waze, oh the places we’ll go.

A Fine Line

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My father was in town recently for a family occasion. He is pushing 80 and while he is very independent, I see that he slowing down a bit. He lives in Israel now, so I get only the occasional peek into how he is faring. Most of the time I have to rely on his reports by phone and email. Even when he is out of sight, he is always on my mind.

I received some great wisdom on this subject from my family’s oncologist. He is a thoughtful person who I see routinely for follow up of the breast cancer I had diagnosed and treated in 2010. This doctor had also been treating my mother for metastatic melanoma since 2002, which had recurred shortly after I finished my cancer treatment. My mother had significant pain, caused by disease pressing on nerves in her spine and neck. While my father was a loving and devoted caregiver, I was anticipating how to go about helping them as her cancer slowly destroyed her body.

“You want to navigate them with grace,” he said.

What a lovely way to frame this difficult time in life.

As a middle-age person with a young-ish family, I had been going about the business of raising my children, tending to my marriage, and bustling about in my community. My parents had been healthy and active. They were an important part of my family life, helping me out when needed, and just being involved, loving grandparents.

Then slowly, without fanfare, things shifted. My independent parents seemed to become lost in the mire of medical care, with the medical equivalent of “too-many-cooks-in-the kitchen.” There was the internist, the endocrinologist, pain team, and oncologist to name a few. This, plus their generational inclination to be compliant patients without asking too many questions, not asking questions they didn’t want to know the answer to, or challenging doctors, made for an often chaotic and sometimes ineffective care plan despite the caring and good intentions of the health care professionals.

Fortunately I lived near my parents so I would sometimes take my mother to doctor’s appointments to give my father a break. It also gave me the opportunity to ask questions and take notes. They drifted along in this vein for a while. Their world began to shrink as my mother felt worse. She slept a lot from the pain medicine. Most of their outings were to see doctors.

I finally intervened when my mother’s pain was not controlled adequately. The outpatient model of medical care was no longer working: the patient/family calls the doctor’s office and waits for the nurse to call back, and then has to wait for the nurse to talk to the doctor and call back again with a pain plan. Then the prescription needs to be called in to the pharmacy, which meant my father had to go pick it up. And in the midst of all this waiting, my mother suffered and my father felt helpless.

I knew a lot about home hospice care from when I worked as a social worker in a cancer center at a major university hospital, so I knew it was what my parents needed. I explained the concept to my dad – nurses come to you, assess the situation, speak to the doctors and provide whatever you need. He was on board. My mother took a little convincing, as the word “hospice” felt so scary to her. She wasn’t ready to give up hope.

“Mom, I want you to live as long as you can. But I can’t watch you live in pain. This is no way to live,” I told her.

She reluctantly agreed. My mother lived three more weeks and died comfortably in her home, at the age of 74. It was heart-wrenching and awful but we navigated my parents with grace, the same way they navigated our childhoods.

It is not always obvious when it is time to intervene with aging parents. After a lifetime of being independent, they will not always ask for help. And after a lifetime of being their child, it is difficult to insert yourself into the caregiver role for, doesn’t mother always know best? It is a fine balance of respecting their autonomy and independence while gently giving support and assistance, whether they ask for it or not. Sometimes it takes an event to occur, like a fall or a hospitalization, to present the opportunity for intervention.

I watched my devoted mother care for her mother who had dementia the last 15 years of her life until she died at age 99, just four years before my mother. I learned about quietly and lovingly honoring your parent by caring for them in their old age.

After all, there but for the grace of God go I.

A Surprise from My UPS Guy

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With the holiday season upon us, you are probably spending more time than usual with the delivery people in your life. I’ve actually known my UPS delivery guy for years as I get a monthly shipment of formula  for my tube-fed teenager. Although I don’t know his name, I can tell you he has a full head of straight brown hair, is of medium height and has a wide girth. He is pleasant and just the right amount of friendly, without being too chatty.

I know that he has a daughter with autism and that he is a St. Louis Cardinals fan. I learned something new about him recently. It was a warm day and I happened to be home for the delivery. I opened the garage door and my UPS driver offered to put the seven cases of formula in the house, so they wouldn’t spoil in the heat and I wouldn’t have to shlep them inside. He kindly put the boxes in my laundry room and as he went to leave, he reached up, touched the mezuzah on my doorpost, kissed his fingers, and walked out the door.

WTF, I wondered?? How had my what-I-thought-was-my-finely-tuned “Jew-dar” not gone off all these years?

“Whoa,” I sputtered as he walked away, “you’re Jewish?”

Indeed, he was. He lamented that he should have gone further than an undergraduate degree in religion, which I suppose was his way of saying how he ended up as a UPS delivery person. I was surprised but kind of delighted too. How wonderful to have another Member-of-the-Tribe join my inner world. No wonder we had an easy connection and rapport all these years – it felt like I had discovered a distant cousin.

He delivered a large item the other day that had to be signed for, so he brought it into my house and commented that something smelled good. I told him I was cooking for Shabbat (the Jewish Sabbath,) which begins Friday evening. It was a Wednesday and he commented, “So early?”

It’s always good to learn the lesson about what happens when we make assumptions. This holiday season, I will not rush to judge any book by its cover, or its brown uniform.

The Sweetest Sound

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As parents, we try to produce well-rounded children. Sports seems to be high on the list of activities to encourage, as is trying to nurture a love of reading and exposure to musical instruments. I am guilty of suggesting my children try different things. They all briefly played a sport but nothing got any of them particularly excited. So, I became one of the masses who signed their kids up for music lessons, hoping they’d become concert pianists or at least raise their IQ a few points.

I’m not sure why so many people force the issue and make their children play, even when they obviously don’t like it. Neither my husband or I play the piano. I played the flute for a few years and he played the trumpet, both while we were younger children. We each have fond memories but neither of us continued as teenagers or adults. For some reason, it seems that many adults regret: a) never having learned how to read music or play an instrument or b) not being forced by their parents to continue playing into adulthood.

We bought a used upright piano several years ago and all four of our children have taken lessons. Numbers 1 and 4 petered out after several months. They have similar temperaments and couldn’t bear the frustration and inability to be immediately perfect.

Numbers 2 and 3 have been playing for about seven years.

Now that I’m on the parent side of this equation, I get why parents don’t force their children to continue. It’s because the constant nagging and negotiating to get them to practice is unpleasant. When the nag/playing ratio becomes too uneven, lessons should stop, in my opinion.

Fortunately my piano players are in a good place and practice willingly, at least most of the time. It is truly music to my ears, both literally and figuratively. My seventeen-year-old has limited capabilities due to his genetic disorder and spends lots of time on various screens so his piano playing gives me an especially great joy.

In the past, he was not always so focused on his music. Maybe I pushed him a little harder because his playing made me happy.

“Are the piano lessons for him or for you?” my husband asked.

“Maybe a little of both,” I confessed. So what?

Then there are the recitals. I find these to be one of the sweeter benefits of being a parent. I love the piano recitals. I love watching all the kids, not just my own. I love seeing the kids dressed up, girls in fancy dresses with bows in their hair and boys often wearing “high-waters” – clearly dragged from the back of the closet from the last time they needed nice clothes. I like hearing the little kids plunking out tunes all the way up to the extremely talented children. Really, an hour is about the length of my attention span for classical music so it suits me perfectly.

My fourteen-year-old had a recital a few weeks ago. He didn’t know the piece as well as he would have liked, but I didn’t care. I was proud to see him get up there and perform. That’s part of the whole package of playing an instrument – working on something to make it better and having the confidence to get up and be vulnerable in a room full of people.

I read that “music is well said to be the speech of angels.” Lucky me – sometimes it feels like I have a little bit of heaven in my own house.

 

If It’s Not One Thing…

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I am the most compliant patient in the world. Since my daughter was recently diagnosed with Celiac Disease, her doctors recommended that all first degree relatives get tested too. I hadn’t seen my internist in a few years so I had blood work done and made an appointment for a physical. I feel pretty darn good in my middle age with no physical complaints or concerns.

The good news is that I do not have Celiac Disease or Hashimoto’s, the other autoimmune diseases that two of my children have. The surprising finding from my blood work was that I am told that I am “prediabetic.” Excuse me, what?? I was not expecting that, at all, whatever that is or what it meant for my health.

The doctor calmly explained that I should just limit my carbs and get re-checked in six months to a year. Oh, no big deal I thought as I left the visit although I felt somewhat agitated. I realized it was not the end of the world. It was not a fatal proclamation but merely a wake-up call that I could develop a chronic illness if I don’t change my eating habits. I suppose I should be thankful.

I may well get to that place of gratitude but first I had to have a pity party. I wallowed in sadness that I had one more thing to deal with in my life. One child has a feeding tube, another is gluten-free. I’ve had breast cancer so I’m aware of my diet in terms of trying to avoid a recurrence. How much do I have to bear? I had a good cry, felt completely sorry for myself and even went so far as to wonder if my life will be cut short by diabetes or cancer, which are both accounted for in my family and personal history.

The next day, I went to my “board,” seeking support.

“Do you think I could have Munchhausen Syndrome?” I asked my sister. That’s a mental disorder in which a person repeatedly and deliberately acts as if he or she has a physical or mental illness when he or she is not really sick. My nuclear family has many diseases and disorders, is it possible that they were products of my imagination?

“I don’t think you could manipulate blood work,” she sensibly said. Oh, right.

My friends rallied, trying to find the right words to comfort me. One friend lovingly suggested I focus on what I could eat rather than what I should try to cut out.

“No, no,” I told her, “that’s not what I need right now. I’m sure I’ll get to that place but I just need to hear something along the lines of ‘I’m sorry.'”

“Oh [expletive],” another friend exclaimed when I told her about my diagnosis. Now that was just the kind of love I was looking for.

Even my rabbi, who I happened to see, offered this comforting statistic, “AARP says that there are 29 million people in the U.S.with diabetes and 86 million with prediabetes. So you are in good company.”

You see, my late mother had adult-onset diabetes. She handled it with such grace, discreetly checking her blood with nary a complaint. My sister and I have memories of our mom looking at nutrition labels and announcing how many carbs a product had, as we remained blissfully ignorant and uninterested in all things diabetes. It is a very strange experience to feel like I am channeling my mother as I transition to living my nutritional life a lot like she did. It just makes the whole thing even more emotionally loaded for me.

But I’m nothing if not resilient. I’m sure when I lose 20 pounds I will come to love my prediabetes, embrace the diagnosis and become its poster child. Never half empty, thank God my glass will continue to be half full of wine, which fortunately is low in carbs.

 

Better Late Than Never

There are many things parents teach their children—toilet-training, personal hygiene, shopping, food preparation, shoe-tying, bike-riding, and swimming to name a few. I have had the pleasure of teaching one of my children to feed himself through his gastrostomy tube.

This 17-year-old son, the second of my four children, was born with a Jewish genetic disorder called Familial Dysautonomia (http://www.familialdysautonomia.org/facts.htm). He walks, talks, and is cognitively with it, but he is medically and physically fragile. He eats some food by mouth, but gets much of his nutrition through a gastrostomy tube in his stomach.

He was diagnosed with this disease when he was 1-year-old, but he had feeding trouble from birth. A g-tube was placed at 6 months, once the doctors figured out that the formula from a bottle often went into his lungs instead of his stomach. Speech therapists encouraged us to feed him by mouth in the hopes that the tube would be temporary. As desperate young parents, we spent hours and hours feeding our son by mouth although he was often uninterested and somewhat averse. We had one other child at the time who was only 16 months older. We were discouraged but accepted the tube feedings as part of our life, at least for the short term.

While it was hard to accept this fate, it was much quicker and efficient to tube-feed him. Sure, we still had to feed him several times a day, but it only took a few minutes each time. We grew accustomed to the stares and questions from curious people. We just wanted to feed our kid and hoped that he would continue to grow and be “normal.”

Like many parenting tasks, the feedings soon turned to drudgery and felt like a chain around our necks. Every couple of hours we had to drop what we were doing and spend a few minutes feeding our son. Yes, we had to feed his siblings as well, but with them we could put the food in front of them and walk away. The feeding tube felt more like a tether as we had to stand there and pour the liquid into the syringe, connected to the tube that went into his stomach.

As he got older he could at least hold the syringe so we could dash around feeding the other kids and return frequently to pour more formula into the syringe. But that too became cumbersome. What to do? How could I make my son more independent with this task?

Perhaps divine intervention led me to find a funnel underneath a sink in a newly renovated bathroom in my home. Hmmm, what the heck was this? Some piece left over by the plumber? A light bulb went on over my head, as I could envision this funnel sitting in my son’s feeding syringe, giving him a wider opening into which he could pour the formula, given his less than optimal gross and fine motor skills. It’s not called the “mother” of invention for nothing.

He resisted the idea at first but quickly got the hang of it. Freedom, at last! And the funnel? Turns out it was meant to fill the soap dispenser that is built into the counter-top. You can imagine the reaction I got when I called Kohler to order 12 of them!

So maybe we were remiss in teaching our son some of the other self-care skills. He can’t ride a bike, but not for lack of trying. He’s safe and comfortable in the pool, but he can’t actually swim strokes—again, not for lack of lessons. Those things weren’t in the cards that God dealt him.

But he did recently reach a momentous milestone. He learned to tie his shoes. We have tried to teach him over the years without success. His frustration, and ours, was too great with the return benefit just not seeming worth it. Sure, I knew he was too old for his mom to still be tying his shoes, but somehow it just didn’t make it to the top of the “things to worry about” list. His health is always number one.

Recently I took my son along with my 11-year-old daughter who wanted to get a new pair of Converse All Star sneakers. While at the store, he decided that he would like a pair as well. Given that he rarely shows any interest in fashion I happily agreed to buy them for him. He was very pleased with his new shoes, which inspired me to raise the dreaded issue of shoe-tying. We tried the bunny ears technique first which was too cumbersome. Somehow, when I showed him exactly how I tied my shoes, it clicked and his fingers were able to do what his brain told them to!

He is super proud of his new skill as he walks around in his new Chuck Taylor’s. And as his mom, I couldn’t be happier. Better late than never.

 

A Higher Calling

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I was at a party recently, chatting with a woman who is a hospice volunteer. She was unique, in that she brings her dog with her to visit dying people. What a lovely idea, right? She said she was inspired to do it after visiting relatives in nursing homes, whose only stimulation was the television blaring in the background. She wanted to provide the tactile stimulation and evocative memories that people can experience when petting a dog.

I have a social work background, am very comfortable with the hospice clientele, and I have a dog…hmmm, maybe this was something I could consider, I thought. Is there a certification a dog has to have, another woman asked? Yes, of course we were told.

“Well my dog’s certifiably cute,” I offered. I think he would bring joy to people at the end of their lives.

The hospice volunteer went on to explain that her dog is a standard poodle who was in fact a rescue dog. She said that he seemed to have a calling for this kind of work. Once, a patient with advanced dementia who barely spoke, reached out and patted the dog and said, “I had a poodle too.”

Her dog has a calling. Huh – imagine that. I wondered if my dog has a calling.

I told my sister about it the next day.

“Great,” she said, “now you not only have to worry about your children achieving their potential, but you have to search for your dog’s calling. Sheesh.”

I thought I just had a run-of-the-mill, rear-end sniffing, self-licking, squirrel-chasing, laying-around kind of adorable dog. Maybe he’s destined for greater things. Do I get him tested to see what his skills, strength and weaknesses are? Or take him to doggy therapy to work out his neuroses and self-image so he can lead a happy, fulfilled life?

I’m exhausted just thinking about it. I think his calling may be simply to bring joy to our family. If I have the energy, maybe I’ll see if he has a knack for making other people happy. I suspect he will. As the late, great Andy Rooney said, ““The average dog is a nicer person than the average person.”

We should all strive for a higher calling.

A Smile Never Gets Old

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Over the summer my sister was gearing up to go to the wedding of a friend’s son. I asked her what she was going to wear. She proceeded to tell me her attire and jewelry options, and asked for my input. As per usual for our conversations, I cut to the chase.

“Don’t worry about it. You are just the friend of the mother of the groom. That is so low on the totem pole of attention. As long as you’re not naked, no one will notice you,” I advised her.

She wholeheartedly agreed. Frankly, it’s a bit of a relief to not have to try so hard. You can put on a dress, slap on some lipstick, run a brush through your hair and just blend into the background of anonymity. Unless you look especially awful or amazingly awesome, it doesn’t really matter. No one is looking at you that closely.

For me, the goal is to be reasonably hip and fashionably relevant without trying too hard, while dressing “my age.” Basically, if I don’t hate my reflection in the mirror, my husband finds me attractive, and my girlfriends think I look nice, I’m in business. Anything beyond that is icing on the cake.

Of course it’s disconcerting to catch a glimpse of “who is that old woman she looks so familiar oh my gosh it’s me” as you pass a mirror and notice your face slowly melting from the burden of prolonged gravitational pull. It’s no picnic to see pictures over the years which document your ascent to the prime of your life and your slow meander down the other side.

They say growing old’s not for sissies and I believe that to be true. But I think of so many people I know who didn’t have the opportunity to grow old. I remember them and try to navigate my own aging with grace. I hold up my wrinkly face, puff out my saggy chest, stand as tall as my shrinking skeleton will allow and walk proudly through life, seizing each day.

At least the smile on my face is the same. As I tell my kids, that’s what people notice more than anything else.