Tag Archives: dementia

Beam Me Up

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Beam Me Up

“Beam me up…

Gimme a minute

I don’t know what I’d say in it…

I’d probably just stare, happy just to be there

Holding your face.

Beam me up…

Let me be lighter, I’m tired of being a fighter

I think…

A minute’s enough

 

Just beam me up.”

She fell in love with the song from Pink’s “The Truth About Love” album as soon as she heard it. The dramatic instrumentation, the tender, heartfelt vocal, the melody soft but strong with those minor keys of angst, building the feeling. She shared Pink’s song and the lyrics with plenty of people, because the song reminded her of profound losses: her sister’s baby, eventually her own father (…in my head I see your baby blues.)

The only detail that didn’t sit well in a song so perfect it always drew a tear and required a replay was the part about a minute being enough. What is that about? How could a minute be enough when you long for and miss someone so desperately, and then you get to be “beamed up” to see them again? A minute could never be enough.

Her dad is in her dreams, sometimes. Fairly regularly, in fact, but never the focus. His presence there is purely incidental: it is a holiday at home, so of course he is in the family room in his chair, or outside with the grandkids. She hears his voice in reply to someone’s question, catches a glimpse of him from the corner of her eye smoothing back his shock of white hair the way he always did. He’s there, as he should be, but in the dreams she is always conscious of the looming dementia. In the dramatic irony of a dream, she knows about the dementia because it has come and gone. She knows everything about it, about what’s coming, but he does not. She awakens troubled and anxious, vestiges of her sleep-self worrying that he is still driving but losing his sense of direction, still talking but sometimes seeing things. She’s afraid he will mention a puppy under the table or a bug skittering in the corner. In the dreams, she’s stressed, holding it all together and not sure what to do. But some part of her consciousness always knows it is a dream, because she knows how all of this ends. She simply can’t stop it this time, any more than she could in real life. The dream isn’t about him, so it doesn’t matter. She’s just dreaming, and he is there. Just like the pets and the kids and the occasional former co-worker or high-school classmate. Like intricate puzzles put together with a few of the wrong pieces, forced in awkwardly, dreams are.

One September night, still warm enough to sleep with the bedroom window open for the sleek purring body of her black cat to somehow relax into the tracks of the frame, she understood what it meant to be beamed up.

She dreamed, and this time it was just her and her dad. There was no context, no preface. They stood outside in the darkness facing each other, as suddenly as if they had both been dropped there like a slide from an old projector. Outside of what or where, she didn’t know, couldn’t tell. A place, a building maybe? They were a mere few strides apart, facing each other in the almost-blackness. In a fraction of a second she understood that this dream was different: he had already died, and he knew it. The dementia had come and gone again, and he knew it. And he knew that she knew it all. Revelation was instantaneous. They rushed to approach each other with arms open, no time to waste. He wore a shirt she didn’t recognize, the only thing that wasn’t familiar to her. They hugged, and her dad was once again the right size; the right height, a bit shorter than his youngest daughter in adulthood (he had introduced her around the dementia ward as “the tall one”) so her face was over his shoulder at the crook of his neck, the right density. His back and shoulders were smooth and strong and bullish, the way their dad had always been. Robust, immovable in a hug. He smelled like dad, the cloud of soap and toothpaste and shaving cream that had always breezed behind him as he rushed down the stairs, the last one to shower in a houseful of females. Somehow she could even see his tan in the darkness, sense rather than see the glossy blue-against-white of his mischievous eyes. They hugged strongly—tightly, but not hard, he was so staunch and she gripped the muscles of his back for emphasis. She knew this would be brief, and she rushed her tearful, joyful words, “oh, we love you and miss you so much!” And because she had always joked with him, added, “we don’t want to, but we do!”

He chuckled, still in the hug, unable to see each other’s faces except in mind’s eye, and said, “I know.”

Then they pulled back, still linking forearms but facing each other in this unnamed night-place. His smile was perfect, lighting up his face in its familiar jocularity, and he said to her, with just a trace of disbelief and humility, “I really love it here.”

Her heart spilled over to hear those words. She had already believed he was in a better place, THE better place, and it was what he had believed too. But to see him, feel him, smell him, and recognize the same wonder in his voice that she had heard him use in the past to describe a mountain, or a golf shot, or a talented child, or a great meal, convinced her down to her soul. She grabbed him again, sliding her arms around his shoulders and squeezing his meaty clavicles with her fingertips.

“I’m so glad,” she choked out near his ear. And she meant it. And she wanted him to know that she meant it. She was so happy for him, and she was desperate to impart the whole remaining family’s love and joy to him in what she inherently knew was a very brief opportunity. She squeezed him tighter, burying her face in him. He squeezed too.

She woke up.

Just like that, she was back in her bed at around three in the morning, her husband asleep next to her, her cat curled up and humming, the sounds of the night falling softly through the screen. The whole thing had taken no time at all. A hug, a few words. But now she could feel her dad in her arms. His voice and scent and warm, living skin lingered. She hadn’t hugged her dad that often when he was alive; she would be more inclined to chuck him on the shoulder, while he would have yanked a piece of her long hair from behind and then dodged her retaliation. She felt, for a moment, what she supposed could be called bliss.

The vestigial flavor of that dream lingers, and she deliberately goes inside her thoughts to enjoy it from time to time. She had her dad back, her real dad, tangible in her arms. And then one day, a couple of weeks later, her earbuds delivered that beloved Pink song while she was walking to one of her sister’s houses, to collect the mail or let out the dog, on a sunny, end-of-summer day. Now, it all made sense, and the lyrics didn’t leave her frustrated any more. A minute was all it took.

A minute was enough.

“Walking on Water” Published in “The Mill” 2014 (Baldwin Wallace University)

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“Walking on Water” Published in “The Mill” 2014 (Baldwin Wallace University)

Walking On Water

           In the summer of 2013, I was 44 years old. I feel like myself only in summer, the kind of person who is miserable for the long Cleveland months when the temperature is below, say, 64 degrees. Obviously, I live in an inhospitable climate. But during the summer months, I am alive. I carry spare shoes everywhere with me in my car to walk outside, I practice yoga in parks on tree stumps or bridges, and I don’t begrudge the ugly humidity that makes everyone look shiny and slimy, with dirty hair. I love and embrace it all. It’s easier for me, no doubt, because I am currently taking a break from employment to finally go to college full-time, so I don’t need to put on layers of spackle and hairspray, dress in a suit or Spanx, or worry about armpit stains on my blouse. I gladly parade my sweat as I walk with my ear-buds tightly placed, eating as many meals outside as possible and refusing to come indoors. These summer days, as hot and oppressive to some as the whoosh of air which accosts your face when you open an oven on Thanksgiving, are what I spend the rest of the year waiting for.

            This past summer, however, my Polish/Irish/Lebanese fair-in-winter, olive-in-summer skin had barely seen the outdoors. It was the summer of Hap—that’s my dad’s name—again. Two years prior, it was also a summer of Hap, when my dad took a final rapid slide down into a well of a dementia marked by hallucinations, violence, and delusions. Since then, my mom and sisters, along with our husbands and children, had visited him daily in his residential nursing home—a nursing home made necessary by his physical strength and that of the aggressive delusions which plagued him; hallucinations of people harming us, his family, which left him no choice but to try to take down the aggressors. Our dad, our defender.

            Over time, Hap grew weaker, physically and mentally, and then, the summer of Hap 2013 became about his final days. He had been hospitalized for a while with digestive issues which seem unresolvable at that point in his illness, and then he had been sent to hospice-care to transition through to death. My family members and I had seen nothing but the inside of his medical bedrooms for the better part of two months. In the end, we were grateful that his final time occurred in the summer, because his grandkids were home from school and around to visit him, and to spend time within the cocoon of the very last days we would all be together as a complete family, the finals weeks, days, hours, minutes with our beloved mentor and patriarch, our team captain.

            The time was rich; irreverent, fruitful, angry, dark, food-filled, and emotional. We ate fistfuls of Honey-baked ham and packaged cookies to pass the time. We talked, recalling old memories…we sang (John Denver, poorly), we mocked each other. We chastised my dad, who was mostly unconscious and certainly unaware by this point, for keeping us cooped up all summer. We made funeral arrangements. One day in July, I slipped out into the sunshine to a waiting bench near a statue of Jesus, and I wrote out my dad’s eulogy in longhand, a speech I had been giving in my head for years, knowing always that it was incumbent upon me to try to do this remarkable man justice in words. A nun saw me from the window of my dad’s room and assumed I was sunbathing. I did not correct her. There was something perversely funny to me about tanning in the back of a Catholic institution meant for the dying.

            After more than a week in hospice, I looked at my calendar one day at my dad’s bedside, and realized I had signed up for a stand-up paddleboard yoga experience on Lake Erie for the next day. I’m sure it had seemed like a grand idea at the time, a group decision with a couple of yoga friends. The daughter my dad had known would never have attempted this—I was not an athlete by any means, spending much of my life a little overweight and a lot under-exercised. I was not a strong swimmer, if you could call me a swimmer at all, and I don’t know if you could. I may or may not be able to keep my head above water and make some progress in a time of trouble on water, but I’m not certain the resulting action could accurately be labeled “swimming.” Yoga was the only exercise I did, and even that was the result of my recent search for peace during my dad’s illness, not any physical prowess. I also have a healthy fear of large bodies of water, and no confidence in my ability to perform this scheduled outing. It was decidedly out of my comfort zone.

            I texted my yoga-friend Jenny, because the excursion had already been paid for, and I hoped that she could find someone to take my place and enjoy the experience. But as the day went on, I felt a nagging pull at my consciousness to consider leaving my dying father’s bedside for a few hours to do something completely out of the ordinary. I was scared, not only of being able to navigate the actual physical activity, but that after all of these days and nights spent in this room, my dad might slip away during the one time I was absent. To be truthful, I also feared the impression it would leave with others: my family, the nurses, the general “people” who would undoubtedly ask, “what kind of daughter would leave her dying father’s bedside to go play watersports on a summer evening?”

            I think it was that final bit, though, that actually convinced me. My dad, a man of many unique and wonderful characteristics, was most known for walking his own path, no matter what anyone thought. He sold investments to wealthy clients wearing a Cleveland Indians tee-shirt (he was about to be buried in one, too). He drove goofy vehicles which had personality (most recently a cobalt-blue turbo-charged Subaru) no matter how luxurious a car he could actually afford, and he took his wife (our mother) on all of his business trips because he wanted her to see the world with him. If he knew that I was bailing out on something I’d committed to simply because I was afraid of how I would look to other people, he would shake his head at me. It began to occur to me that this activity could actually be a tribute to my dad, that he would get me through it and inspire me to appreciate the beauty and accomplishment and camaraderie of what I was about to undertake.

            I had a talk first with Paula, the wonderful hospice nurse who had been taking care of my dad every weekday of his hospice stay. She was a friend by then, it being such an intense time for sharing family stories and feelings with intimate strangers. She also knew my dad, his physical condition, very well. It had started to deteriorate more rapidly, and we knew the end was nearer than it had been. I asked, “Paula, what should I do? If I have a thing to do tonight, do you think it’s okay for me to leave to do it? Or is he close?”

            Paula (who by the way, my dad would have absolutely loved and would have probably nicknamed something like “Scrappy” because she was small but fierce), looked towards my dad’s bed, looked back at me, and repeated both actions. Then she said, “You know him. What would he tell you to do?” Well played, Paula. And right on. So, with the confidence born from the knowledge that nothing else can possibly even matter when you’re about to lose someone forever, I walked out of my dad’s room that evening, not knowing if I would see him again alive. Of course, as I grasped his hand and kissed him goodbye, I said (as I always did), “See ya tomorrow!” But I felt like something had changed. Something bigger was happening, and it almost felt as if my dad had already left that body.

            Incidentally, one of the most valuable things about hospice for us was the way that it gave us our dad back, restored to his old self in a way. The dementia had been so grueling, and his perceptions and statements so out of character, that once he was debilitated enough that he could no longer speak, we were left with his beautiful blue eyes (for the first day or two, until he became semi-conscious at best) and the feeling that he had been delivered from dementia, and instead lay dying here as his former self, in his right mind. The hospice caregivers changed his bedding every day before we even arrived, shaved him, brushed his teeth, washed his hair, made him look like he was in his own bed at home, no longer hooked up to IV’s or tubes. So when I leaned over him that day, he smelled of shaving cream, toothpaste, and soap, just the way I remembered him. I carried that smell with me as I drove away, recalling how it would come down the stairs ahead of him on Sundays, when he was the last one ready as the rest of us waited to leave for church. A man with a wife and three daughters is last in line for a shower.

            The day was one of the hottest that July, maybe in the nineties. Despite that, I drove to the lake with my windows and sunroof open, drinking in the moist heat and the dangerous feeling that I was somewhere I was not supposed to be. I felt fragile, and grateful that the friends I was about to meet for this excursion were not close friends yet. They were women around my age, with similar interests and problems, compassionate and supportive, but I knew they would not ask me questions, hug me too tightly or lingeringly, or ask if I was okay. They knew, probably better than I, what I was there for that day and the restorative power it might have over me. They had each already buried a parent. Their support was silent, but loud. The remaining participants were strangers. It was a welcome feeling to just be an anonymous body as we all schlepped the cumbersome paddleboards off of a trailer and toward the Great-Lake Erie. Only my two yoga friends knew that I was in a liminal space, “the one whose father is actively dying.” But we couldn’t concentrate on that: we had to worry about getting up, and then staying up, on the boards bobbing under us on the water inside the break wall of the lake.

            Once we were all assembled and following the leader, I noticed bystanders watching from shore. Looking through their eyes, I realized that we looked fierce, like models on a women’s magazine, unaware of our ages and instead feeling like lithe, strong teenagers. We had on an assortment of swimsuits, board shorts, yoga clothes. No cell phones, no watches, just sweaty hair up in ponytails because all of us still wear it long (I heard somewhere that if a woman can remember Gerald Ford being President, she is too old to wear a ponytail). We attentively listened to Deanna, our instructor, who seemed to embody light: blonde hair, bronzed skin, with a strong and casual manner, competent. We were in good hands. We had already developed some confidence in our strength through yoga, these friends and I, but we were all shy about our abilities on this giant, often angry lake. There was little conversation, only concentration, bodies held at attention, and deliberate motion.

            As we traveled up the shoreline, past indescribably unique and lovely homes and a bit away from the safety of the shore, Deanna led us through yoga poses. Yoga inherently employs “pratyahara,” the act of suspending the senses, of coming inside…so while there was a handful of us sprawled out some yards from each other, going through the same motions, we each practiced in isolation. I could feel my friends Jenny and Beth near me, all of us supporting each other with our presence, with our intention, and our breath, sending waves of friendship out from our hearts even as we were fighting hard to maintain various balances on a floating board. We generated immediate and copious sweat, which ran down not just our faces but our entire bodies, pooling in our bellies when we lay on our backs, making our hands slippery when we stood inverted in downward dog. We were ruddy, our ribcages heaving with exertion, slow, steady exertion. It was like being squeezed out, a sponge from a pail of water. Loose hairs frizzed around our faces or stuck to our temples. Any remnants of old mascara had long since smeared away.

            I opened my eyes and squinted around me, the glare of the fiery evening sun slapping the dark glassy water, the sky so bright my friends were rendered just silhouettes to me. My eyes burned from the salty brine of sweat, wind, and emotion. It occurred to me that my dad was just such a silhouette now, too. I suddenly felt positively impervious to any attack, ten feet tall and bulletproof. I was aware of my upper arms and shoulders rippling in smooth strength as my paddle dipped into the water, pushing my hips forward, potent. I was as strong as I had ever been, as beautiful as I would ever be, and as capable as any other person on the planet. Without warning, I sensed my dad’s presence so strongly around me that I said aloud to my friends, “I know now that there is absolutely no place else on earth that I should be at this moment then here on this lake with you.”

            I wondered if this sudden peace and feeling of connection with my dad meant that he was slipping away, even as I was gliding along in this moment of bliss. I contemplated what I would feel like if my dad took his last breath while I was on this lake, while my mom and sisters sat close and held his hands and spoke soft words to him. I knew in that moment that it would be perfectly correct if that’s the way it happened. My inner voice reminded me that I was the one who lived next door to my parents, I was the one who worked with them for fifteen years. Maybe it would be a wonderful gift to my sisters for them to finally have as much of a portion of my dad as I had always been so spoiled to have. If he passed away in my absence, I would not regret my decision to choose this spiritual experience of my dad on this lake.

            At the end of our practice, as we drifted, lying on our backs on the paddleboards with the cinnamon-hot July sun setting behind us, I closed my eyes and felt buoyant in mind and spirit. This body of mine, this body of water, and this body of friends and family was stable and certain. This mighty lake may as well have been the very palm of my dad’s hand, and the deep, wide well of his heart. I relaxed. I thought of my dad’s broad, brown hands and how they had held me up on countless summer vacations, held me by my ribs in oceans and hotel pools, tossing and playing with his kids like toys. We were never afraid. He always caught us, held us aloft. He always would. The palm of my dad’s hand, the palm of our Father’s hand. More gargantuan and mighty than this lake, but tender, both.

            Swirling, floating, feeling more accomplished than the accomplishment merited, I sensed rather than saw the sun melt low and hot into the horizon, and wondered without fear or anxiety if my dad’s light had just dipped below the surface of this life. I celebrated Savasana, the yoga pose of relaxation, drifting on a trembling sunset, feeling and tasting hot, wet salt on my face, sweat mixing with healing tears, as welcome as they were valuable, flowing unchecked. I never felt closer to my dad than at that moment; I’d never loved or appreciated him more.

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Hap, Hap, Happy.

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Hap, Hap, Happy.

Today, when I visited my dad (Hap) in his nursing home, I had a bit of an epiphany. For the longest time it was just torture to visit him in such a place, but now while it still makes me cry as I am leaving, it is a more bittersweet feeling and today I think I realized why. Now that he is more “gone,” when he does have a good day (as he did yesterday, a good day being one in which he is sitting upright, his eyes are open, he is speaking intelligibly) I cannot help but smile to see his laugh, his sparkling blue eyes, catch just a glimpse of the man who used to be in there. More specifically, as I delighted in a few of his actions and comments, I realized that the sweet half of the bittersweet is that I now get to see my dad as if he were a toddler. What he does and how I react to it reminds me of how it was to be with the kids as they were first experiencing the world. When a child hears some background conversation not meant for him at all, and then supplies a completely apt response, we as adults laugh and clap and his cleverness. So it is with Hap. When a child gets a particularly bulky forkful of food to his mouth successfully, if laboriously, and then his face clearly shows his triumph, we delight in his accomplishment. So it is with Hap. I could see things dawning on him, or see him coming back to things and slowly registering what they meant – “oh, that’s the spoon…I’m going to try THAT for the fruit instead of the fork.” In children, we watch in rapt appreciation, knowing that the world is opening up for them, that they will learn each of these things one at a time and become smarter, stronger, faster, lose their childlike wonder and amazement. For my dad, he will instead learn and re-learn, but then hang on to less… the world is instead closing up for him. But to see the man whom I only knew as omniscient, omnipotent, full of strength and wit and wisdom as if he were the child-Hap I never knew is still a beautiful opportunity to appreciate his frailty, the frailty which we all share as human beings. Before he was my dad, man of the house, ruler of our little kingdom, he was a tiny, helpless child, an athletic, stocky, stubborn, willful little boy-sponge soaking up all that life had to show him. And, lucky for all of us who knew him in adulthood, he really did soak it all in and celebrate it. So, I celebrate this time with him now, too. He has the attention span of an 18-month old, but that was cute on the kids and so it’s cute on him, too. He wears it well, because even though he spills food on his front and becomes frustrated like those children did, he also erupts into a chuckle when he thinks of something that he thinks is clever. Often he will say something nonsensical, although now it is interspersed with the familiar adult Hap-speak. His first comment to me yesterday was, “typical Florida real estate!” and then he went on to reasonably explain some transaction that he thought went wrong. In the next breath he mentioned the Carolinas, another favorite place of his, and then he pointed to the empty space in front of us and said, “didja see that guy? He almost kicked him in the nose!” and he smiled and shook his head. So, it looked like my smiling, joking daddy, but it was a child as well. That brings tears to my eyes, but they aren’t tears of agony anymore, they are tears of bittersweet joy. It’s bitter, yes, but it is so sweet to see him as this child. I snapped a photo of him with my iPhone and said, “I’m just gonna send this to mom…” he shook his head and chuckled, and said (in a typical Hap move, mocking in his tone, embodying his old philosophy of “old age and treachery will overcome youth and skill”) “wouldn’t it just be easier to take it down the hall and show her?” That comforted me, because it made me feel (right or wrong, I’ll take it) as if when we are not in the room with him, he still feels like we all still live together in this “home” and when we visit, it’s as if we just came into the room again. The television was on in the lunch room with the other residents, and “The Young and Restless” was playing. He thought soaps were ridiculous, of course. I said, referring to his next door neighbor of 45 years, “one of Eleanor’s stories is on.” He said, “I find them interesting.” If that’s not proof that he has lost his mind, I don’t know what is! Of course, I don’t believe he watches the soap, he barely glanced at it – and as I said, his attention span is no longer there for an entire storyline (even one that hasn’t changed in 25 years.) But what’s miraculous is that for a second, my real dad is there, choosing to be/speak/think positively about whatever subject is brought up. Later, in the hallway, his roommate Ed was trying to give us candy. Ed will take his dollar bills to the vending machine and buy gum and candy, walk around with it displayed on the table/seat of his walker, and try to share it. He’s very sweet. He leaves his money sitting there too, though, so it looks as if he is a walking candy counter. As he passed, and I declined his offer of chocolate, my dad reached toward him to get his attention, and out of the side of his mouth asked, “hey, do they sell cigarettes there?” My dad hasn’t smoked in 25 years, but he always said he missed it, and it is so very like his cocky, childish side to try and score smokes. How can that not be funny, sweet, and appreciated by me? Yeah, it sucks to see my brilliant dad this way. He is too young and strong and had way too much more to give to his grandchildren. No doubt about that. But now that I’ve realized how rare and beautiful this glimpse of Hap as a rambunctious child can be, I will drink in the bittersweet and be glad for every last minute of these visits, the worst best hour of my day.

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