hospice care volunteer

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The List

“If everyone else comes first, you won’t last.”

As I continue my hospice volunteer training, my knowledge about both the dying process and ways to make those that are dying comfortable, seems to grow exponentially. For instance, the pain and suffering that some people go through as they die actually anchor them to this world. Yes, they will still die eventually, but with good symptom and pain management, you can lift that anchor and help them sail on to wherever they need to go. Of course, I will not be helping in the pain management portion. As a volunteer, I’m there to listen, give comfort in my presence (I hope) or maybe even help around the house. If I can do anything at all to provide assistance to someone in their last days, or to the families that are dealing with their grief, then I’m right where I’m supposed to be.

My training and my husband’s health has prompted some overdue conversations. My husband and I talked a lot about the heavy hearts we’ve all been carrying lately. Our son and I are always on alert when we walk into our home, wondering if we’ll find my husband dead. Although my husband doesn’t want to die, he’s not afraid to. He has his faith, so what worries him more is the journey in-between life and death, the pain and suffering that often accompanies that. I talked to him about what I learned, and hospice care is all about helping with that journey, to make a person dying more comfortable and to improve their quality of life while they are still here.

Of course, we hope he still has years left, but we never know, do we? We’ve talked about having to apply for disability because we’re not sure how much longer he can work. He’s never fully recovered from his ventilator/coma horror show in 2020, but after last year’s heart attack he’s much worse. BUT he does have good days, and today was one of them. We’re in a good space today, so we’ll take it.

Besides my hospice knowledge increasing, do you know what else has grown incredibly? My bucket list!! Wait, no, my “Life To Do List.” If you have a better name, please tell me. I’m not loving the list names I’ve found so far. I chose this name though because my list isn’t all adventures or traveling. I have things like: Learn CPR and First Aid, Take Swimming Lessons, Make Homemade Pasta. But also, of course, I have: See the Grand Canyon, Go to NYC at Christmastime, Walk the Berlin Wall Trail. And within some of my activities or adventures, I have the people I want to see or spend time with. I LOVE spending time with myself, but some of these things would be so much better with people I enjoy being with. Because ultimately? Those people are what really make my life joyful. Vacationing on an island would be rad, but what would really make it spectacular is to do it with my girlfriends. Seeing the Boston Red Sox play is an experience I only want to do with my sister, and I can wear our father’s Red Sox cap and eat a hot dog in his name.

Will I get to do everything on my list? I doubt it. Even if I have the opportunity to get really old, I’ll never have the funds to do it all. Also, I have “Run a Marathon” on my list. Yeah, that shit might not ever happen. Since my distal pancreatectomy surgery, I still can’t run over 4 miles. Yet I also haven’t been training as much so….who knows, right?

Look how damn happy I am when I run or walk! This is a genuine smile. Maybe I can do the Jeff Galloway run/walk method for a marathon? I don’t know. We’ll see. In the meantime, I’ll keep on adding to that list. And I’d love to hear what’s on your “Life’s To Do List.” If Visit Maine is on your list, I have a couch to sleep on or a tent to sleep in. I got you. ❤

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Grappling with the Past

I woke up thinking about my mom this morning. Actually…I woke up thinking about everything I did wrong with Mom during the last two years of her life.

I just began training to be a hospice volunteer. Much of our homework is reading about dying and watching videos about hospice care as well as the dying process. In just two weeks I’ve learned a lot about what actively dying looks like (which I witnessed with Mom) as well as what all of the signs actually mean. For instance, when someone seems agitated as they are going through the dying process, the person could have a full bladder, could be in pain, or maybe the music being played in the room reminds them of a particularly bad time in their lives.

I was with both of my parents as they lay dying. Much of the literature and information I’m consuming reflect my own experiences. Stories of people dying who talk to a dead loved one or reach out to something that you can’t see. (Dad saw his grandfather.) Stories of people dying after their spouse leaves the room or once their adult child finally made it to the hospital after they flew across the country to see them one more time. (Mom died less than 5 minutes after I left the room. My sister said it was because she was trying to protect me one last time.) As I work through the coursework, I feel like this is all in my wheelhouse–bereavement, dying, extensive grief, hospice care–these actions and feelings have defined my life for the past five years. I feel like I’m ready to listen to others now and be present for those families that are suffering and for that person in hospice care. And to be honest? Although I’ve set some boundaries in my life, I know at some point I may need to be my husband’s caregiver as he continues his congestive heart failure journey. That journey may end in hospice care. I want to be prepared and help him prepare for what that involves.

This morning, I started to doubt my hospice volunteer readiness. I watched two hours of videos yesterday about the dying process and Mom’s birthday is in two days, so of course she’s on my mind. But I felt sick thinking about Mom being in the memory care unit of the nursing home. I know she had many, many good days there, and I know I was not able to take care of her. (I tried but was not successful.) But what about once she went into hospice care? Why didn’t I bring her home? Could I have taken a leave of absence and taken care of her here? Would she still have died just three weeks after she went into hospice care, or maybe she would have lived longer?

I’ve been doing exactly what I tell people not to do. I have no idea how things could have been. She could have died sooner, or what if she lived even longer? Could I really have afforded to take a leave of absence? (I already know the answer is “no.” And if you’re one of those people who say, “If that was my mother, I would have stayed home with her,” then congratulations to you for not living paycheck to paycheck.)

Don’t second guess yourself, I tell people. I want to say I did the best I could with what I had, but I’m not sure that’s true. Tomorrow I may feel differently. I may be ok with how it all went down.

But today I’m struggling.

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“You do not have to be good.”

I’ve always enjoyed Mary Oliver’s poetry, and “Wild Geese” is one of her most popular ones for good reason. But it’s been a while since I read it, and earlier this week, I saw the first line of the poem, “You do not have to be good” in someone’s email signature. It stopped me from moving past the email, from doing much of anything really, except crying. What was it about that line that got to me?

I found the poem and like nearly every other time I’ve read it, I got stuck on the line “Meanwhile the world goes on.” I never hated that phrase until my brother died. The world was supposed to stop that day. I wanted what W.H. Auden wanted in his “Funeral Blues” poem, to “stop all the clocks, cut off the telephone.” How could the people on the planet be so cruel as to keep on living while my brother could not?

And now here it is, five years later today. This shit hole of a world didn’t stop. It’s certainly gotten worse, but it hasn’t stopped.

So, I went back to “Wild Geese” by Mary Oliver and read the poem again. I stopped at my usual line, then finally pushed on. I had never understood the poem, really, because I could never finish it. My anger and grief built a wall tall enough for me not to see or hear anything further after “the world goes on.” Now I finally see what the fuss is about.

“Wild Geese” is about living. It hasn’t been easy for me to really do that these past five years. I tried but have often failed. I did start learning to appreciate the little things in life that make me laugh or bring me joy–just watching dragonflies flit around my head made me so happy that I logged it in my brain to remember later. I have tried to cement a few friendships and relationships that I never, ever want to lose. But I also cut a few people loose that were not good for me. I want to and need to do more of that in the future.

I’m not much of a risk taker, so I won’t be skydiving or jumping off cliffs to swim with sharks. I won’t be traveling the world, only because I don’t have the financial means to do so. But I’ll at least get my passport so if a windfall of cash comes my way, I might finally be able to go to Europe or even see my lovely friend and soul sister, Becky in Mexico. But what else?

Knowing I was a step away from pancreatic cancer and also knowing that my big brother never got this second chance that I have now, I don’t want to piss it away. But unfortunately, bills still have to be paid and responsibilities still have to be tended to. Is there a way to fit in this new vigor for life into my current life?

I’ve recently begun training to be a volunteer for The Trevor Project. This will require one 3-hour shift per week and the training is 10 weeks long. It’s quite a process and I love it. I’m learning so much and honestly, it’s really difficult. But I’m so, so happy to do it. Watching my son and his friends try to live their lives and seeing how much pain some of them have gone through specifically from being part of the LGBTQ+ community, has given me the push to help more young people like them. And hopefully I can.

I’ve also signed up to train as a hospice volunteer. Training starts with that in the fall, with a 2-hour shift requirement per week. This has been a passion of mine for a while now, especially after talking and working with Mom’s hospice nurse. I’d like to be able to help patients and/or their families in any way I am able.

So…back to the “You do not have to be good” line. There is SO much in that line to unpack. First, I saw the sentence in a hospice worker’s email, and I think it’s one reason why it caught me off guard. I had forgotten the line and maybe when I read it before it just didn’t mean much to me then. But now it means everything. I think I cried because I immediately thought of my brother. Much of his life, especially his adult life, he lived with no excuses and no regrets. You didn’t like how he lived his life? “Fuck you,” he’d say and sometimes with a smile. To me he always lived as large a life as he could with what he had. He was loyal to his friends and family and loved us fiercely. He was a voracious reader and wrote humor, horror, romance and erotica, and sometimes all in the same story. He was known for his morbid and often perverted sense of humor that often had you shaking your head but also holding your belly from laughing so hard. He was a giant of a man with a giant heart.

But again, why did “you do not have to be good” resonate? Because Phil was like that. He wasn’t always “good” and certainly didn’t get on his knees to repent (he got on his knees for other activities), but he loved what he loved and loved whom he loved. And he lived. For those few 49 years and 33 days, he fucking lived. No excuses. No regrets.

I’m trying to be like my big brother. I want to fucking live, too. Volunteering at these two places is one way I can live more like I want to. It may seem like this isn’t me jumping out of an airplane, but it sort of is. This is me putting my heart out there and seeing people when they are at their most vulnerable–asking for help because they don’t feel heard or understood or loved and just want to die, and those that are actively dying or watching their loved ones go through that process. I suppose I’m trying to save lives with one position and help those die with dignity with the other.

Will these activities make me happier? Eh, I don’t even like that word right now. That’s a blog post for another time. But I think the work will help me feel fulfilled. Being a librarian was always what did that for me but being a library director is not the same. I’m fortunate to work in a small, rural library so I still get to know and help people, but nothing like what I did before. Now there’s too much of the bureaucratic bullshit and that part sucks. Right now, though, it’s where I need to be.

There are other things I need to do to make my life a better one: getting rid of more “stuff,” finding my own space in my home, eliminating more debt, writing and reading more poetry, keeping up those forever friendships and relationships, and having more new experiences. Will I have time or energy to do it all?

Probably not, but I have to try, right?

Not just for me, but for Phil. At 49 years and 39 days old, I am officially older than my big brother. It’s time for me to try and live, to prove to him and to myself, that I don’t waste this “one wild and precious life.” (Seriously, Mary Oliver was kick ass, so check her stuff out.) Sometimes that might mean I take a walk to observe the leaves dancing in the trees or to see that momma turkey and her adolescents wander the field instead of finishing a book I was supposed to read for work. Or it might mean giving up an evening of relaxing to talk with a friend who needs a shoulder to lean on. Or it could mean that I make some bigger changes in my life and figure out who Holly is.

Thanks for coming on this journey with me. I wish Phil were here, too. I know he’d have a lot to say about it, and it would probably be a bit sarcastic and/or hilarious, and also said with love.

If you ever met my brother, I hope you think of him today. I won’t let him be forgotten, so even if you didn’t know him, think of him anyway. Just know that you probably would have liked him. I certainly did.

Phil’s potholder codpiece.