Category Archives: hospice

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.

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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.

 

Six Blankets

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Six Blankets

I’m fighting a quiet battle within myself. Some might call it depression, I hesitate to use a label. A sad awareness is wrapping itself around me like a blanket which I keep shrugging off. It’s the state of the world and the sad stories that swirl around me like a thin fog that clings low toward the ground. I’m able to go about my day and do what needs to be done with the added presence of my unwelcome shadow.

Yesterday I went to a luncheon for hospice volunteers. I’ve been a hospice volunteer for a decade. I provide respite for caregivers of terminally ill people. I know that sounds depressing in itself….honestly, it’s rewarding work. After the lunch volunteers are asked to take blankets to patients on hospice. The blankets are crocheted by generous, kind souls that enjoy their craft. I volunteered to deliver six blankets to patients that share my zip code.

Each blanket is paired with an index card with pertinent information about the intended recipient. Name, address, phone number and helpful hints like the neighborhood name or the patients age. It’s recommended that you call the families first to see if they want to accept the blanket.

I made 6 calls and I got mixed results. Mindful with each call that this family is suffering on some level. It is impossibly hard to watch someone you love die before your eyes. It’s also an incredible gift to have some notice about the situation. Words can be spoken that otherwise might be left unsaid. I try to approach each communication with a blend of compassion and lightheartedness. I don’t want to add to the melancholy nor do I want to be overly cheerful, it’s a balancing act.

First Blanket – I left a message explaining that I had a crocheted blanket as a gift from hospice and left my phone number. I haven’t heard back which isn’t unexpected, they have a lot going on.

Second Blanket – I spoke with someone on the phone and they said sure drop it off.  I headed over after I picked my kids up from school. After ringing the doorbell, I  was told to come in. This is common. People are so busy caring for a terminal person they often leave the door unlocked for scheduled deliveries, home health aids or visitors. I handed the blanket to the caregiver and smiled and waved to the patient as I let myself out.

Third Blanket – My kids are still in the car, these are local deliveries. This was a house I was familiar with having just sat with the patient last week. They had a screened in porch so I left the blanket nestled on a chair and let myself out. I spoke with the caregiver later that evening and he thanked me for the blanket.

Fourth Blanket – Someone answered the phone when I called and gave a reluctant OK to the blanket. I don’t know if I spoke to the patient or a family member. The property was stunning with an Old World European curb appeal. This was a house with multiple doors which happens quite often. I chose a door which had a wreath on it, it was not answered. I channeled my inner MacGyver and fastened the blanket to the wreath with little more than stubborn determination. I took the kids home after this, our third, delivery.

Fifth Blanket – I spoke with the patient’s daughter on the phone. She sounded tense on the phone and promised to call me later. She left me a long voicemail this morning. She apologized for being curt on the phone (she wasn’t) and went on to say how hard it was to speak at work and what it’s like having a father on hospice. She was unsure if the blanket would be a welcome addition and I felt bad for adding to her burdens. She was a jumble of emotions and I’m still thinking of the best way to follow up.

Sixth Blanket – This was actually the first call I made and it gutted me. A composed gentleman answered the call and very graciously declined the blanket. He stated that the patient (perhaps his wife?) got one at chemo and there is just so much stuff around the house. I can vouch for the stuff – every hospice patient has a table full of items to keep them as comfortable as possible. Pain medications, body lotion, mouth wash, adult diapers, towels, wipes and an assortment of personal items. Things that would normally be kept in a bathroom or bedroom migrate to the kitchen or dinning room table. Most patients reside in a hospital bed in the living room of their home for convenience and to avoid isolation.

Prior to making the call, I put the address in my GPS. Then it dawned on me that this patient is half a mile from my home. The proximity was unsettling, more disturbing was the age, 58. That is young. I can count the difference in our age on my fingers. My mind takes this information and then I wonder if we have crossed paths. Does she have children? Do we shop at the same stores? Have I encountered this person at some point in our day-to-day lives? This patient, the one whom I will likely never meet…..she’ll stay with me. I’ll think of her when I drive past her house and I will say a silent prayer for her and her loved ones.

This is the shroud I wear from time to time. The memories of visits that I’ve had with patients that have passed. Thoughts of neighbors that I don’t know personally and yet I have some intimate knowledge of their situation. It’s profound and sad and somehow complete. This is the circle of life, a common path we are all on despite our attempts to deny it.

Death is the one universal truth. We will all die, each one of us. It doesn’t matter how much money you have, who you voted for, what country you’re from or what you believe in. Death doesn’t discriminate it comes for everyone. Everyone. So don’t be petty, hateful, hold grudges or act out of spite. It’s just a short ride on this spinning globe and then, who knows what’s next. I plan to use my time wisely with compassion, humor and then more compassion because that’s what we need. And somehow, by sharing these thoughts, my foggy companion has faded away.

 

 

 

 

Breathing Room

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Breathing Room

I watched his breathing. At times it was barely perceptible other times it was labored, loud and had some shakiness to it. I hoped and prayed that he wouldn’t die during the three hours while I sat with him. It was my first time visiting, it got scheduled the way they usually do.

Initially the hospice coordinator sends out an email to see if any of the volunteers are available for a given case. She provides basic information; the day/time preferred, the town and a general synopsis of the situation. She’ll tell us if anyone else will be in the home or if there are pets and give an brief sentence about the condition of the patient. It’s almost always some form of cancer, the second runner up is COPD.

Usually the caregiver just needs to get out a few hours for work, doctor appointments or some other urgent matter. There have been several occasions where I relieved the caregiver so they could make funeral arrangements. That is such a sad and necessary outing. Once at a support meeting for hospice volunteers, a peer complained that the caregiver she relieved went out to play poker with friends. I don’t judge what the caregiver does with their time away. Providing care to someone who is terminally ill is difficult, if you want to take time off to play poker or have a beer, I am totally cool with that.

After the first email goes out, volunteers will alert the coordinator if they can take on the case. Once that is done a secure, private message is sent to the volunteer best suited for the task. This confidential message provides more in-depth information about the patient including the name and number of the main contact. Then the volunteer calls that person to schedule the visit.

My initial call for today’s visit happened two days ago. The wife needed about 3 hours to run some errands and I told her my available hours. Ginny sounded tense on the phone, I could hear the strain in her voice. You might think that’s the norm but oddly enough, it isn’t. Most of the families I have dealt with have a poise and calm that I can only attribute to denial, exhaustion or some zen like state that I have not yet obtained. Ginny was how I think I would sound if our roles were reversed. We agreed to the schedule and I told her that I would confirm the morning of my visit just to make sure we were still on. This is a sad and necessary precaution as you do not want to ring someone’s doorbell and find out that their beloved passed away the day before. It happens.

I called again this morning to make sure we were still on. Ginny sounded the same as the first call and I gently repeated the agreed upon times. When I got to the house, I greeted their neighbor in the driveway. She informed me that she would relieve me if Ginny ran late. Then I let myself in through the back kitchen door. I announced my arrival and Ginny welcomed me from a distant room. This is not uncommon as the tasks of terminal care can make it hard to leave the bedside. I made my way to the correct room and introduced myself.

The next 20 minutes was a series of harried movements and Ginny’s out loud mental check lists and a final dose of pain medication before she could leave. In these moments I witnessed a love that was so sweet it broke my heart. Ginny crawled into bed with Bill and explained where she was going, who I was, and that she would be back soon. It pained her to leave his side though I could tell she needed to leave for her own sake. Just a couple of hours to not be surrounded by the inevitable death of a man she has given the past 47 years to, the love of her life.

In a private moment in the kitchen, Ginny told me that she didn’t understand why he was holding on. I asked if he was waiting for a visitor to say good bye, a final conversation? She said she asked him but he didn’t confide in any such need. Sometimes the body lasts longer than you can possibly imagine, other times it expires in such a rapid decline even the most experienced hospice nurse doesn’t see it coming. Death is fickle and unpredictable even to the stewards who’ve witnessed it hundreds of times.

Ginny was finally able to pry herself away and I sat in the room with her love. Saying silent prayers, reading a book and keeping one eye on my bedridden friend. He was quiet until he needed to go to the bathroom. This was indicated with hand gestures and a reach for the portable urinal. A bit of panic always goes through me in these instances. My first concern is safety followed closely by privacy.

I’m not a nurse, nor do I play one on TV. I’ve been in the trenches and I can handle a mess. What I don’t want to do is accidentally cause someone with brittle bones to get a fracture by moving them the wrong way.  My Aunt had bone cancer and she broke both her legs trying to bathe herself, it was horrible. I think of her when I’m in these situations so I air on the cautious side.

We got through it without breaking anything and he fell back into a restless sleep. His agitation level at times made me wonder if he had just hours or days left. In the nearly 10 years I have been doing this I’ve seen many patients get into a state of agitation; flailing limbs, mumbling and a burst of energy followed by calm. This has happened in the last few days of life for many of the people I have visited as a hospice volunteer.

I’m not sure if Ginny will call me again to sit with her husband. If she does, I will make room for her and Bill. I will take the experience with me and think of them when I drive by their house. It’s something I do often when I drive past the houses where I have visited my hospice friends. Sometimes it’s a single encounter, other times I spend months visiting on a set schedule. Every experience is sacred and is something that becomes a part of me. The sad truth is, we are all going to die. The hospice patient just has a little advance notice.

 

 

Their Stories…Tales of a Hospice Volunteer

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Their Stories…Tales of a Hospice Volunteer

I have heard so many stories from the people that I have met as a hospice volunteer. I meet others through a small business that I run where I fill in the gaps for people when they need help. I have met some interesting people along the way. People always have a personal reason for becoming a hospice volunteer. It isn’t the PTA, you don’t do it for your kids.

I became interested in hospice in my late 20s. My aunt was dying of metastatic breast cancer and she appointed me as executrix of her estate. It was an incredible experience because my aunt was a highly spiritual and deeply religious woman. She was young, not even 60 and she met death face on with a grace and dignity that eludes me on a daily basis. We had many open discussions during her final year and it made me wonder what it was like to know you were dying within days, weeks or months? I started to worry that the dying person may not have anyone they felt they could talk to….sometimes the people closest to us are the hardest ones to talk to when life is near the end.

Some people are so close to the dying person that it is too emotionally charged for them to have a coherent conversation. Then again, some can’t communicate when things are great. Toss in a terminal illness and some just go mute or into complete denial. The surviving family and friends generally have people to talk to but the dying person….who do they have? I decided that I wanted to be that person.

So finally 10 years after the seed was planted I decided to become a hospice volunteer through a local hospital. My kids were still young but the preschool hours and some kind friends provided enough kid free time for me to attend the Medicare required training. I had been a stay at home mom for 5 years at this point and it was great to check off a personal goal that was independent of my family.

The hospital I volunteer for has a training coordinator we will call her Kay. When a hospice volunteer is requested, Kay sends out an email to a group of hospice volunteers telling us a little bit about the situation and what day/time a volunteer is needed. Then a volunteer will ‘reply all’ that they can do it and Kay sends a secure email to that individual. The volunteer then has the information to contact the family and the visit is scheduled. Sadly we always have to check in the day of the visit to make sure the patient hasn’t passed, it happens.

A couple of years ago I received such a call from the wife of a man that I was supposed to stay with the next day. Sadly her husband had passed a few hours before she called me. I find it remarkable that she would have the presence of mind to even think of me but she did. We chatted for a few minutes and she mentioned that she lied to her daughter and told her that a friend was staying with her that night because she did not want to inconvenience her. I never met that woman in person but I think of her often.

That’s how it is with hospice work. You meet people at this most intense time in their life. Sometimes it is scary and awkward and uncomfortable and other times it is filled with grace, dignity and love. You never know what you are walking into when you arrive at someone’s home. Sometimes the family is close and open and other times you can feel tension in the air from countless family fights and relatives being forced in a room with someone they haven’t spoken to in decades. I go in knowing that these people have an entire lifetime of memories, emotions and conflicts and I am not there to try to sort that out. I am there for two reasons: to be there for the patient in whatever capacity they need and to give the caregiver a break.

They, the patients, always leave me behind at some point. Sometimes they hang on well past the point that anyone would have thought they could. Other times they go suddenly….even though they were on hospice, you are shocked….they were a fighter and you thought you had more time. Most of the time though I know when our last visit has occurred. More times than not, I will get an extra squeeze of their hand, a knowing look and an extra and most sincere thank you. And I leave knowing I will not see them again.

Though they are gone, they are not forgotten. Many tell me their stories some are funny, others are heart breaking and I hold onto those stories and take them with me. That is our gift to each other.