Category Archives: hospice

Because I Can

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Because I Can

I am quietly sitting in the main level bedroom of a nicely appointed house that dates back to the 1890’s. It’s insulated well enough that air conditioning isn’t required despite the high summer temperatures outside. The windows are open and I can hear the chatter of cows from the farm that borders the back yard. I can hear those same cows from my own home which is within walking distance. Here though, I get to eavesdrop on the more nuanced conversations, beyond the distressed mooing that occasionally travels to my patio. The cows are conversing in more hushed tones.

Each room in this house has been lovingly filled with precious items.  Long ago gifts, remembrances and highly sought after antique flea market finds that probably took months, perhaps years, to procure. The individual pieces are meaningful, eclectic and likely filled with sentimental value. A lot of love went into decorating this home and perhaps a twinge of obsession, the result is a timeless casual elegance.

The items themselves are a bit worn around the edges. Faded like the lingering scent of fabulous meal after the dinner dishes have been cleared. It seems more poignant with some of the newness ebbed away by time, longevity has it’s own allure which, something shiny and new can’t quite grasp.

After several minutes Thelma, jumps down from the bed and visits me at my corner chair. A petite orange tabby, she sniffs my feet for a few minutes. I attempt to pet her which yields a do not touch look so I stop myself and decide to ignore her. After a few minutes she bites my knee because that’s what cats do. My involuntary jolt sent her scampering away for the remainder of my visit. Her sister, Louise, is out in the yard somewhere planning her next kill or rolling in the grass, sunny side up. I won’t hear from her unless she wants to come in which, she will announce by jumping 4 feet up, onto the screened porch door. Thelma & Louise keep things interesting around here.

During the olfactory interrogation, I can hear the Serena Williams match on the TV in the kitchen. A man’s voice is giving an unofficial commentary of the match…”Oh no, Geezus!” and “Come on Serena!” are on a repetitive loop. I’m happy that he has a distraction even if the end result isn’t what he wanted. He is passionate about something separate from the care-giving which likely consumes him. In this small way he is reclaiming something important for himself and I wish more caregivers would do that.

Before he leaves for the gym he stops by the bedroom. He tells me that they just got back from vacationing at the beach where they got married decades ago. I wonder if his wife has any recollection of that now as she lay snoring, midday, in the bed they still share. He gives her a long, gentle, emotional hug as he prepares to leave and I try to become invisible in that moment.

I see the hospital bed close by and I wonder which one of the two beds she will pass in. Probably the hospital bed, it will likely happen before the unofficial end of summer. I push against the inclination to imagine a similar scenario in my own life as I silently ask God for another 20 (pretty please make that 30) years of health and happiness with my husband. I am momentarily engulfed in the absolute knowledge that this is all temporary. I’ve seen this situation play out about 100 different ways in the ten plus years that I have been a hospice volunteer. It’s usually some diabolical form of cancer with the wife caring for the husband or the daughter caring for a parent. It always leaves a print of sadness on my soul which gets absorbed and gently tucked away.

When I prepare to leave, I notice the fireplace in the bedroom has writing on the header. “Fairy Tales Really Do Come True…” is painted in pretty cursive. A swirl of emotions courses through me. I don’t believe in fairy tales, I had to rescue myself and yet, my life is blessed beyond anything I could have imagined as a child. For the thousandth time I question why I do this…why do I place myself in the center of someone else’s heartbreak. The answer is always the same, because I can and those that can, should.

 

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Heaven Sent

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Heaven Sent

I used to visit her on Tuesday mornings. I would make a cup of tea and fill up the pan with warm soapy water. Kelly would soak her feet a few minutes and we would chat about whatever caught our interest that day. Sipping tea, chatting like old friends though we didn’t know each other that long.

She created a Facebook page for people with cancer so they could pass along items they no longer needed – wigs, walkers, canes, commodes, anything. Kelly wanted to help anyone in need, she was keenly aware that there were many people in need. We also talked about her children – a daughter and two sons. The daughter was married, her youngest son was in middle school, the same age as my boy.

After about 10 minutes I would take one foot out and pat it dry. Then I would give her a pedicure, she always liked a good pedi. It isn’t something I excel at but that’s what she wanted, so I fumbled my way through. She was always grateful for my attempt, a genuine smile on her face. We did this for months before I left for vacation.

That summer my family spent 3 glorious weeks in Italy. Exploring as much as we could – Venice, Florence, Cinque Terre, Lucca, Orvieto and Rome. My husband speaks fluent Italian and he got us some great rental properties to stay in. It was my all time favorite vacation. It was magical, the four of us in a place of beauty, enriched in history and the food, my God what a time we had.

When I got back home I was preparing to jump back into my schedule when I heard the news. Kelly had passed away just a few weeks after her 48th birthday. Today her birthday came up in my Facebook feed, she would have been 51 today. I turn 51 next week.

I think of her youngest son often. I didn’t know her that well, I was just a hospice volunteer that would visit once a week, make her tea and paint her toes. Sometimes I wonder why life is so hard for some people and seemingly so easy for others. Why did I get to go to Italy while she perished?

Life doesn’t make sense, there is nothing fair about it. So today Kelly reminded me how precious life is and how fleeting and unpredictable it can be…I feel like she would have wanted me to share that message, so I am. Happy Birthday in heaven Kelly.

Winter View

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Winter View

I can just barely make out her house from the window above my kitchen sink. Once the trees fill out for spring, I may just see a splash of color or a bit of rooftop. It’s a beautiful house, old and charming, lovingly decorated with authentic treasures and keepsakes. It isn’t large or small and there is nothing cookie cutter about it. Little nooks and crannies are filled with art and memories, photos line the hall going up to the main level. The kitchen is open with modern appliances that somehow work in this older space. There is an air of authenticity about the place. Ginger and Amber are two tiger striped cats and they fit right in.

I went to visit my neighbor today. It was the first time I had ever been inside her house. Years ago my kids and I stood in her driveway getting bags and reflective vests for a neighborhood roadside cleanup. Neighborhood sounds misleading, these houses are all independent of each other in construction and in life. This area is upscale and spread out sadly, I can only name a handful of my neighbors and we’ve lived here for ten years. This is not unusual as most people have busy lives that are headed in different directions.

Today’s visit was as a hospice volunteer, I relieved the caregiver so she could go food shopping. I’ve often wondered what that particular house looked like on the inside and now I know. Once again, I am reminded a lot of people have something difficult going on in their lives right now. Sometimes it’s an inconvenience or a wounded ego, other times it is facing an imminent final goodbye. I’m not sure if I will see my neighbor again. I am sure that I will think of her whenever I drive by her house and I’ll be reminded of what is truly important.

 

The Man on the Bed

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The Man on the Bed

I made a new friend yesterday, his name is Lenny and he’s 85. He happens to be dying of lung cancer but we didn’t talk much about that. I went to visit him as a hospice volunteer. Lenny’s house is a treasure trove of art and dust. His room smells like urine and his clothes are in a pile on the floor near his bed. If you can look past that, you are rewarded with art from several cultures and genres.

Soon after I arrived I noticed a copy of “The Man on the Bed” painting. This painting was created by Robert M for the December 1955 Grapevine (an Alcoholics Anonymous publication). I commented on the painting and informed my new friend that I was sober 35 years though I don’t go to meetings anymore. Lenny also got sober in the 80’s and attends 6 – 10 meetings a week.

The man is on oxygen and has a catheter and it doesn’t stop him. We joked about the car he drives which happens to be a Ford Escape and we decided it was the perfect name for his vehicle. Indeed he is escaping every time he leaves the house. For an hour or so he is welcomed into a warm room full of people he is fond of, embracing the humanity of it as a respite from the confines of his bed.

We talked a lot about Lenny’ s life, he’s had a fascinating life. He was born in Copenhagen in 1934. He spent his childhood in institutions as he was abandoned by his parents. His country was under German occupation during World War II when he was a child. He has vivid memories of interacting with German soldiers as a young boy. He recalled one memory when he was affectionately picked up by a German soldier and placed in the sidecar of a Zundap motorcycle which had a machine gun attached to it.

He never sat in a traditional classroom, he taught himself to read by working out the captions under illustrations. He has always been drawn to art and artists. He credits his time at the Summerhill School in Suffolk England for encouraging his creativity. He described it as a free range approach to education, no classroom required.

He became a mason apprentice at 14 and got his Mason Certificate and Union Book four years later. He traveled the world through his trade and spent time in Sweden, Norway, Germany, Greenland and Australia. He came to the USA in 1963, he arrived on old freighter which was riddled with bullet holes. He disembarked in Hoboken, New Jersey and got his green card.

We didn’t spend a lot of time talking about his three marriages. He did tell me that each of his wives was wonderful and that the blame for failure was his alone. He had four children and two died from overdoses. We didn’t dwell on it, he took the blame for that as well. He told me he was a lousy father, not at all present for his children when they were growing up. Three decades of sobriety has a way of smoothing out the rough edges of self acceptance.

Sometimes you need to spend time with the dying to fully appreciate living. I can’t wait to visit my new friend again.

Less Than

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Less Than

My emotional bandwidth is full at the moment. The world seems to be a swirling mass of chaos and I cannot process one more thing. My father died a couple of weeks ago and I’ve been trying to find my footing ever since, I’m still shaky. We weren’t close, we weren’t estranged, we were somewhere in-between, a relationship on hold. A quick call on birthdays and holidays, a visit or two throughout the year and lately one or more of those visits was in a hospital room. I always tightened my stomach before dialing his number, it never got easy, but I kept trying. Walking through the awkward became somewhat less traumatic yet, it never vanished.

Our relationship went off the rails the summer I was 9. My twin brother and I were back in New Jersey after living in Florida for a year. Before we moved, there was a custody case, mom won and promptly took us away. While we were gone, we would get weekly calls from our father and stepmother telling us how much they missed us and couldn’t wait to see us again. We believed them.

We made our way back to New Jersey and were visiting a family friend who lived around the corner from our father and stepmother. My brother and I went to the house, excited to see them. We could barely contain ourselves, wouldn’t they be surprised! A somber version of our father emerged and coaxed us away from the door and sat us down on the front steps. I don’t remember his exact words but the gist of it was – you can’t just come here unannounced, I have a family now. I’m sure it had something to do with his baby daughter and a wife that wanted to contain the crazy. Looking back I can see where the man had been put through hell. Trying to get custody, losing that battle, then his insane (certified) ex wife takes his kids to Florida, it must have been an emotional roller coaster for him. I lacked that perspective then. What I heard was I don’t want to see you and then it all faded to black.

I think my little psyche had been through too much at this point so I just shut down. Florida was a nightmare and I had witnessed far more than any child should. If he didn’t want us to visit, then fine I wouldn’t want to be there. I flipped a switch, threw up a wall, deployed the shield. My brother, God bless him, he handled it different. He just tried harder to get the man’s attention. For years, decades even, it was like watching an animal stuck in a trap trying to get free, wailing in pain with each pull of a limb. I avoided the trap.

My father and his second wife had 5 children. They raised them Catholic, took them to church every Sunday and didn’t mention the fact that they had half siblings. My brother and I would visit our paternal grandmother who lived 4 houses away from our father and he would not stop in to visit. A whispered hush fell over the town when we would visit, “those” kids were around. Our uncle lived next door to our father, we could hear our siblings laughing and playing outside while we were across the street. They didn’t even know we existed. I guess the plan was that eventually we would give up on every paternal relative but we didn’t. We kept showing up and at some point our father and stepmother had to tell the other kids about us. Is this the Christian way to raise a family? I mean I don’t go to church too often but this seems a little off, but I digress.

We never had a conversation about this. I wrote him when I was 21, suggested that we  get to know each other. I acknowledged that I had not heard his side of things. He never responded to that letter. In our late twenties my twin and I would see our father and his family at events for extended relatives, things started to thaw.

Back to Dad…

In mid September he went in for a test, that test resulted in an error which required a surgical fix. I went to visit him on a Wednesday, they were talking about discharging him, this was 5 days after his surgery. We did our usual small talk, I showed him digital pics of my kids from a recent trip, we listened to the weather channel. A somewhat bland visit, it was to be our last conversation. Oh how I wish I could redo that chat. The next day he went into cardiac arrest, 5 days later, he was gone.

Those days went by in slow motion, somewhat suspended as we sat in a CCU waiting room, anxious for the next update. I was there with four half siblings, my father’s significant other and other relatives that would stop by. I participated in conversations about his medical directive and eventually we got him transitioned into hospice. I’ve been a hospice volunteer for ten years so I was familiar with the process and knew which questions to ask. He died within 20 minutes of having the ventilator removed, per his wishes which he declared in an Advance Medical Directive. He was surrounded by people that loved him in his final moments and it went about as well as these things can, it was still awful.

I knew the wake would be hard for a variety of reasons. Of course there is the grief of losing a parent. If you’re lucky, you have a lifetime of memories to cherish, inside jokes, and special moments that live in your heart. My memories are scarce and tainted by abandonment, unanswered questions and decades of denial that I wanted, no, needed a father. No more do-overs, mulligans or second chances, in that regard, hope also died. Hope that somehow, someday, somewhere, someway, the awkward yet necessary conversation will happen, it won’t. It never will.

That’s a lot to take in when your standing in 4 inch heals for five hours straight on the back end of the receiving line for your dead father.  He was flanked by honor guards, standing at attention. Honor guards, and some people looked confused as they were trying to sort out my role. I was his oldest daughter, twin to a brother that bore his name and I had to explain that dozens of times throughout the wake. It’s not the first time someone has said “Oh, I didn’t know he had an older daughter”, perhaps it will be the last.

Of course there were pictures. Pictures everywhere of a life I never lived. A seemingly happy family with 5 kids and two parents in matching Christmas outfits, funny birthday shots, tons of beach and bay photos filled with beautiful people on sunny days. I forced myself to put a memory board together and only found one photo of us from my son’s Christening 15 years ago. I filled the board with twin baby and toddler pictures of my brother and I. Then I added some random beach shots of my kids in the town that my father lived in. It was pathetic and sad and I insisted on doing it, I needed to be in that room. I needed my kids to be there too, forced inclusion at it’s lowest level.

The pictures were of particular importance. Nearly 20 years ago, my stepmother died in a car accident. We had just begun to heal our broken relationship when she died suddenly and that wake had a thousand pictures filling the room. My brother and I weren’t in one, believe me we searched with bloodshot eyes, not a single picture. At one point, I needed to leave that wake because I was so overwhelmed by grief of the life we never had with them, it was palpable and I was choking on it. Then 4 years ago, our father’s youngest son died. Another wake, more pictures, more despair, this family has been through hell.

After 5 hours of standing in line, trying my best to look less broken, we were asked to sit. I sat in a chair which was off to the side, it was closest to the casket and gave me a side view of the speaker. An elderly man, a chaplain from the firehouse, who gave a very passionate speech which at times, felt like a personal challenge.

Man: “He was a GREAT man, a great man!

(OK, stay calm this will all be over soon)

Man: “He was the best if you had a problem with him, then that was your problem!”

(Are you challenging me old man. Oh FFS, I saw him beat my mother, he abandoned his first two kids, didn’t pay child support and was likely a neglectful parent to his other kids after his second wife died, he was a serial cheater and probably an alcoholic)

Man: “We will all miss him so much. Truly, a great man (sniffs).”

(Maybe I was the asshole, everyone says he was great. This send off feels like a canonization. Dear God, was it me, was it my fault??? Table that for later…)

The wake was followed by a dinner with a large crowd and it was as nice as these things can be. I truly enjoyed spending time with my brother, niece, nephew, uncle, aunt and half siblings. I don’t know them well, yet I feel a pull towards them. An inexplicable pull that goes beyond having compassion for people that have been through some serious shit of their own.

The funeral was on a Monday and it was as if a Statesman had been laid to rest. His flag draped coffin was placed on the back of a vintage fire truck. Uniformed firefighters saluted his coffin, bag pipes wailed as the church swelled with people. I had to keep reminding myself to walk tall, shoulders back, head held high, looking straight ahead, like an android in mourning. I treated this like a last wish, playing my part in this orchestrated event. After the mass, his casket was placed back on the fire truck and  paraded past the places he frequented most. Cops closed off intersections to let the procession cars go through red lights. Surely, a legend had died, a great man forever sleeps.

The next day the sibling in charge of our father’s estate sent out a group text outlining the details of the Will. Yup, a group text which was sent while my twin was mid-route of his multi-state drive home. We were clearly not the favorite kids that hunch became tangible as some of the finer points were laid out. The house would go to the four kids from the second marriage. That was expected, in fact our father told us his intention in regard to that property. My twin was hurt, I was somewhat indifferent, it still stung a little. Another property with individual components would be divided 6 ways. Wait, there’s a catch, sales from the property being divided 6 ways would first go toward the house mortgage, any remainder would be divided six ways. (Geezus, do I owe money at this point?)

Imagine a pie – perhaps it’s blueberry, pumpkin or custard – it’s your pie, imagine whatever you want, no calories, so YAY! You need to share that pie because sharing is good. Right off the bat 2/3’s of the pie go to the younger 4 siblings. That’s OK 1/3 of the pie split 6 ways is still a delicious little sliver. But before you get your sliver you need to reduce it some more and give it back to the younger ones (the ones Daddy loved more) and you’re left with…crumbs. Crumbs and a bitter taste in your mouth because he didn’t warn you about that bit and clearly a lot of thought went into it.

So for the past two weeks I’ve been cursing at ghosts. Grieving the childhood I didn’t have, feeling my brother’s pain along with my own. I am determined to get through this, lose the bitter taste in my mouth and get on with it. I’m just not there yet, there’s no manual for this.

Finding my Way

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Finding my Way

65, 52, 47, 76, 83, 77, 68, 47, 49, 42, 42, 42, 39 I watched the numbers change like a heartbeat roulette wheel and I was betting heavy on black. Wishing for a different outcome and dreading the likely one. Praying it wouldn’t take that long, mouthing words of comfort, rubbing my father’s arm, listening to the sounds of tears and gurgling breath. I watched my father slip into the big sleep and still managed to be shocked when the nurse pronounced him. He is gone, it shouldn’t have gone down like this.

He went in for a routine test and things went terribly wrong from there – abdominal surgery, cardiac arrest and ultimately death. He was a firefighter, a first responder, he should have died in a fire, saving someone, or on the bay doing a water rescue. It was at least 15 years too soon, he left us brain dead for days before his final departure. A situation that caused his children from two marriages to come to consensus on his care and arrangements. Unlikely as it is, that has been the easiest part of this mess. His children are amazing, each and every one.

I feel robbed, I’m angry. I’m many things right now, anger is the easiest feeling to process. She keeps the depression an arm’s length away. Well she tries, the feelings seep in on their own schedule. I’m experienced enough to know that grief comes in waves. Sometimes those waves pull you under until you can find your footing again. Then you try to get yourself off the sandy bottom, wobbling into an upright position to face the next round. Sometimes you can anticipate the wave and jump up into the big one and ride it to shore. Be careful, if you turn your back on the ocean, those little waves can knock you down when you least expect it. My father didn’t give me much life advice but I do remember this, never turn your back on the ocean.

 

 

Broken

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Broken

Sometimes you stumble your way through the dark on an unfamiliar path trying to  discern the next right step. In my experience, these paths are riddled with emotional land mines. You anticipate the boogeyman when he jumps out in front of you. When you hear the creepy music, you don’t have to turn your head to know someone is behind you. Then there’s the stuff that blindsides you and takes you to your knees, the unexpected hits you never saw coming. I’ve had a week of those.

The days are blurring together and feel oddly suspended as they do when things get awful. Some slow motion version of life settles in as you try to adjust to the new normal, which is anything but typical. On Wednesday, I went to visit my father in the hospital and they were talking about discharging him. Then on Thursday morning, he went into cardiac arrest and he’s been in a coma-like state ever since. The prognosis is grim and now we wait for things to change in some new direction. Waiting for milestone hours to pass; 24, 48, 72 and we continue to wait, and wait and the days feel like weeks and every so often the physical/mental/emotional exhaustion comes over you like a tidal wave. It feels a lot like drowning, minus the water. I’ve been dry drowning.

This situation is awful enough on it’s own and yet, there’s more. Five decades of an on again/off again father-daughter relationship, half siblings, a beloved twin who is far away, a history of family tragedies and what can I say, it’s complicated. I’m the oldest of seven, one of the two from the first disastrous marriage. The other siblings are from my father’s second marriage. His second wife died in a car accident in 2000. His youngest child died by suicide a handful of years ago. The pain this family has experienced is enormous and I feel like a ghoulish outsider with unfettered access.

As I’m getting older, friends and loved ones have lost parents. Sometimes I wonder what it would be like for me when the time came. I no longer resent my father for what he did or didn’t do when I was a child and yet, we aren’t especially close. Not a conscious effort to stay separate, it just became easier to chose other priorities. I’ve also tried to insulate my children from the dysfunction of my childhood. There is a lot of my personal history that they don’t know yet. As they are getting older more is coming to the surface but not everything.

I’m a strong person, been through plenty of my own shit and always came out the other side on top. I’ve beaten odds that no one could’ve predicted. If younger me was a horse in a race, no one in their right mind would have bet on me and yet I placed. I found my way into the winner’s circle, against all odds. I thought I would be somewhat disconnected when dealing with my father’s mortality, I was wrong.

Yesterday I felt hallowed, a husk of a human who had their innards scraped out. An emptiness that was dark and consuming, a black hole from within. It took me by surprise and I had to yield to it. I could not leap through this particular ring of fire, I had to stand in front of the flames and watch it burn. Eventually I had to accept help and let my husband and kids join me at the hospital.

In the middle of my pain, I imagined myself as a plate made of fine china with an intricate pattern. Seemingly intact, functional and somewhat pleasing to behold. Upon further inspection a hairline crack is discovered, the kind that can cause the plate to break if it is not handled in a delicate manner. If you feel the edges on the backside the chips reveal themselves and you know this plate has been compromised. It makes me wonder if the damage is visible to an outsider. From a distance, it looks good but up close, you can see it’s damaged and on the verge of being broken.

 

Writing Prompts

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Writing Prompts

When you feel vulnerable everything is a writing prompt. Sometimes the thoughts just swirl in my head, marinating until they become a somewhat tasty morsel that spills onto the screen. Not enough for a meal but, with any luck it leaves you hungry for more. Most times though, those prompts just wither on the mental vine. Here are some seeds that are lying on the bare ground, waiting for neglect or nurture to determine their fate.

Backstage Pass

My father is in the hospital again. He’s been in several times this year for various illnesses. We aren’t close and that’s not likely to change. He was out of my life from when I was 9 until sometime in my 30s. Too late for strangers with nothing in common to cling to – I say that with sadness, not hostility. We’ve both made attempts to bridge the enormous obvious gap, we just haven’t found the right the platform.

I find out about his health via group texts from his longtime partner. She’s devoted to him and very kind, which is comforting. It’s just awkward. The man had 7 kids from two marriages. I’m the first born but last in the pecking order. When I do get informed, it’s like having a backstage pass for an act you don’t know.

What’s Normal?

My kids recently went back to school and I feel myself being consumed by my own anxiety for them. I’m outing myself in the hopes that it will get me to ease up a bit. I have two teenagers and I can’t help myself, I think of what I was doing at their ages. Then I wonder, is it normal for parents to do this? If you’re a parent do you reflect on what you were doing when you were the same age as your child? Seriously, this is not a rhetorical question, I don’t know what’s normal.

For the Ladies

You ever get your period and think “Oh that makes sense” as you flashback to the night before when you ate half a chocolate cake and contemplated life with a new identity.

Hospice

A friend asked me how I deal with the mental mind f*ck of caring for people on hospice. This is what I wrote to him:

Hospice is a weird thing. I think what draws me in is the lack of bullsh*t. The small stuff and pettiness that most humans get tangled in tends to fade away when someone has a newfound awareness of how finite our time is here. I appreciate that level awareness and honesty and I get into a – do the next right thing modus operandi. It’s more difficult with people you know versus volunteering for strangers. I’m pretty good at compartmentalizing though, one of the benefits of a dysfunctional upbringing.

There is also a curiosity that pulls me in. I kind of want to know what it’s like at the end of life – I mean, we’re all going to die one day, yet people rarely discuss it. Or maybe my twisted brain thinks…if I am a witness and a helper for so many at the end of their lives, perhaps I’ll be granted a swift departure when my time comes. I don’t want to be subjected to weeks or months of Depends and really dry, chapped lips. So basically what I’m saying is….there is no way to delay the existential head f*ck, you just have to lean into that motherf*cker.

 

 

 

*Featured image used via agreement with 123rf.com image is Copyright of Sila Tiptanatoranin

 

Buzz Kill

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Buzz Kill

Hi friends, it’s been a while since I checked in. My world got pretty small for a few weeks when my father in law was placed on hospice. The family took turns caring for him in his own home until he passed away last week. We’re all still licking our wounds over here, he was one of my favorite people. He was a quiet example of living a good life, I’ll miss his zen ways. I’ll be forever grateful for the “good man” example he set for his son and grandson.

In the meantime, life goes on. The sun still rises, work needs to be done and kids have to go to school. The laundry piles are smaller, we’re starting to eat dinner together again and a new normal is settling in. (Psst…the new normal sucks)

Throughout this past month there were moments of gratitude and humor. My closest friends were there for me. Two suits appeared for my son to borrow, a belt was brought to visitation when I forgot one. Recommendations were made for where to find shoes for my daughter and her exceptionally tiny feet. We received an orchid, a tomato plant and an olive tree from kind friends who knew the man we honored. Mass cards were given and basically people just showed up, let our dog out and let us know we are loved. You can’t ask for more than that. It’s been raining since we left him at the cemetery, even the weather recognizes our grief.

OK shaking off the sad for some humor now…pivot with me. One day while I was sitting with my father in law a wasp got in. I could hear the buzzing and identified the culprit. I went to search for an old fashioned fly swatter. I knew there would be one, everyone over 80 is required to own one. Sure enough I found it tucked away in the kitchen between a cabinet and the wall. I stepped into the living room armed with the fly swatter and a determination to eliminate the problem.

Sitting with someone who is dying has a way of making you realize how precious life is in all of it’s forms. That’s the only explanation I can come up with as to why I was determined to usher this wasp out a window and not just smash it. The invader was stuck between the wooden blinds and a window. I cracked open a neighboring window as the escape hatch, I just needed to get my new friend to fly out of it.

There was coaxing and loud noises as I tried to get the wasp out the window. I provided some commentary for my father in law who was pretty quiet at this point but he had a front row seat to this show so it was the polite thing to do. After several loud attempts, mild cursing and antics that had a tinge of Lucille Ball, the wasp finally flew out the window. I was pretty proud of myself for dealing with the problem in a humane way.

A few hours later, the hospice nurse and my husband were both over and another wasp was in the house. At least I think it was another wasp, could’ve been the one I freed earlier getting in through some secret wasp back door. This one was really annoying doing fly-bys as we were discussing medication. This asshole had to be exterminated. I got the fly swatter again and got him mid flight, it was spectacular. I picked it up with a napkin and disposed of it in the garbage.

Another two hours tick by and son-of-a-b*tch there was a third wasp. I texted my husband thinking maybe we have a nest. We had a text exchange about it –

Me: I just killed another wasp. Three of the mofos got it in today.

Hubs: Are you sure the third one isn’t the second one? Unfurl the napkin in the garbage can to be sure.

Me: Hell no I’m not unfurling napkins to see if your wasp is the Jesus of the wasp world rising after death…I will seal the garbage bag and take it outside like a normal person.

I managed to get the third (or perhaps it was the first or second, I didn’t check the napkin) wasp out the front door. Never to return.

 

Graphic Credit: Copyright: <a href=’https://www.123rf.com/profile_derocz’>derocz / 123RF Stock Photo</a>

 

 

Why Hospice?

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Why Hospice?

I get this question a lot, why hospice? Why volunteer to insert yourself into the lives of strangers when they are going through a gut-wrenching experience. The answer is simple, because I can. I realize it isn’t for everyone so those that can, should. You couldn’t pay me enough to work with little kids or Hedge Fund Managers. For some reason, I can lean into this end of life situation.

I should probably back up and explain a little bit about what hospice is for the uninitiated. Hospice is palliative care. Comfort measures for someone who is terminally ill. This includes pain medication, durable medical equipment, oxygen, things that will provide pain relief for the patient. Hospice is not curative care. When a person gets transferred to hospice they generally have a life expectancy of six months or less. Hospice care can take place in an institution or at home. It is covered by Medicare.

When I was in my late twenties my Aunt was dying and she made me the executrix of her estate. She didn’t have much so that sounds a lot loftier then the actual task. Basically, I was in charge of making sure her final wishes were realized and distributing what monies and valuables remained after she died. She selected me for the task because she knew I could handle it and her sister would be too emotional. Through that process I got to know my Aunt better and got a glimpse into what it’s like to know you’re time is limited.

My Aunt was a chaplain. I couldn’t of asked for a better teacher to demonstrate grace through her final months. We had very direct conversations about what she wanted, I could ask her anything. I remember a particular conversation when I asked specific medical questions. I was frustrated that more wasn’t being done medically to cure her. She was young, 59, and she had an acceptance that was mind boggling. She got breast cancer in her 40’s and had a mastectomy, chemo, the works. I remember celebrating her 5th year cancer free declaring herself cured. A decade later she had leg pain while on a trip to Greece. When she got it checked out she learned that the cancer had metastasized. The younger and healthier a person is, the more aggressive the cancer. She understood clearly that this was her death sentence.

It was an intense time. At one point she broke both of her legs while bathing. We hadn’t finalized her Last Will and Testament yet so I raced to the hospital to have her sign it before she went in for surgery. That was an odd position to be in. It felt awful to put “business” as a priority before surgery and yet I wanted to fulfill her wishes if she didn’t survive. Remarkably, she made it through the surgery and got to celebrate one last Christmas.

Through this process I became aware that sometimes the person that is dying doesn’t have anyone to talk to. Sure there are usually family members and friends around but sometimes they need a buffer friend. Someone they can talk to with no skin the game. Someone who won’t break down because they can’t bare the thought of their loved one dying. A friend at the end who will listen without judgement or a history of emotions that can complicate a conversation. I sincerely wanted to be that person.

I was 29 when my Aunt died and the seed for hospice work was firmly planted. I knew that I wanted to get involved at some point. The next decade was divided between a busy career, starting a family, moving and health scares. Finally when my youngest was in Preschool, I signed up to train to become a Hospice Volunteer. That was 10 years ago.

In 10 years I have probably visited with 100 or so hospice patients and their families. Each case varies with some overlapping commonalities. The hospice team is consistent regardless of the individual workers. Hospice nurses and home health aids are a special breed.  They are on the front line of death every day and they face it with a humility and strength that amazes me.

As a volunteer, I get to select the cases that I am willing to take on, the paid help doesn’t have that luxury. Sometimes I get to fulfill that wish of being their confidante. Most of the time though, I just sit by reading a book at their bedside while they rest. This is also rewarding as it provides respite for their caregiver. Caregivers are stretched so thin, anything you can do to help them should be done without hesitation. I’ve met people that have cared for their spouse for a decade or longer prior to getting on hospice. That’s an incredible length of time to sacrifice yourself for someone else.

Sometimes you get a hard case, something that hits close to home and guts you. I had a patient about a year and a half ago that still haunts me. We were the same age, her birthday was one week before mine and she had a kid the same age as my son. I visited her for a couple of months. Once a week I would stop by, make her tea and give her a pedicure. We talked about everything and anything. If she asked me a question, I gave her an honest answer and she did the same. What can I say, it’s just not fair. Despite the pain, it’s rewarding work which is why I still do it.

Do you have questions about hospice? If you do, feel free to comment and I’ll respond. If it’s too personal, you can email me at – thebrycewarden@gmail.com – if you do email me, please comment that you did so I get back to you in a timely manner. If you currently have a loved one on hospice, my thoughts are with you. I hope you can have the conversations of your heart while your loved one is still here. That is the gift of hospice, the ability to realize that time is running out, so say those words while you can.