hospice

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Pinch Him

This year, my Memorial Day weekend was bracketed by funerals. It began with a service for the 56-year-old sister of my dear friend. The funeral home was packed and there were beautiful speeches and stories, laughter and sobbing. I held the hand of another dear friend as we listened to our “soul sister” speak through her tears, telling the room about her big sister. Her death was a shock to all of us, since her illness was so brief.

The weekend ended with the funeral of my hospice friend. I had been visiting him and his wife at their home nearly every week for 2 1/2 years, and although he was 80 and had been ill for some time, his death still felt very much unexpected. His wife had invited me to his funeral and to their home afterwards. The service was led by the hospice chaplain and it was filled with Bible quotes, a few songs, and both his wife and daughter stood up to briefly speak. It was a small affair.

As I drove to my hospice friend’s home, I stopped to get a coffee and cry in my car. I wasn’t feeling bereft for my hospice friend, but for his wife. Watching her through this entire process–the entire 2 1/2 years–has always made me look at my relationship with my husband and his illness.

When your spouse is chronically ill, you do have a relationship with the sickness itself. It’s not a great one. Mostly I hate it. And yet there have been times that I was grateful, but more from spite. The anger I have at my husband for his unhealthy habits throughout our marriage (and beforehand) has burst through over the past four years. That’s the part of me that was happy he was sick–a justification for what I had been saying over the years, or when I begged him to take his insulin and he didn’t, or asked him to go for a walk with me and he refused.

But now? Now I just hate it. My husband is always fatigued, often in pain, can do very little. He’s currently in a depressive episode, too, which makes everything so much worse. Over the weekend, in between the funerals I attended, we had a conversation about our son and what his future might hold. “Senator Chapin,” I said, grinning. My husband nodded and replied, “President Chapin has a great ring to it. But I’ll be long gone before that could ever happen.”

I was stunned momentarily because the look on his face was this mix of sorrow and regret and I immediately just fought back with, “Well, I could be dead, too!”

The rest of that day I had a nugget of guilt in my stomach. Why didn’t I just acknowledge that yes, he will probably die much sooner than later? Because although I freely talk about his likely death, talking with him is much more difficult. He typically doesn’t acknowledge how sick he really is, so when he finally did, I just batted it away.

That night I apologized to him. He said it didn’t bother him, but he also didn’t really want to talk more about it. I missed my chance to have an open conversation that night. Hopefully I won’t squander that again.

After arriving at my hospice friend’s home, I got to know their friends and family a bit better and we had lovely conversations about my friend and how they knew him. There were also two other widows in attendance, besides my friend’s wife, and they were talking about how they had been coping over the past few months. One woman has been a widow for two years and has been navigating this new world the longest of the three women, and was giving out advice left and right. I wanted to tell her to be quiet and let my friend’s wife find her way. I kept thinking, “He’s been dead for 10 days. Let the woman catch her breath and just be there for her. Stop telling her to join book groups and grief groups, for fuck’s sake.”

I know their heart was in the right place, but I could feel my own anxiety ratcheting up. Will this be my life? Will I have to take time off from work, take care of my husband for several years while watching him become more feeble, then after his death I’ll have people telling me not to make any big decisions, but encouraging me to get out and meet people and not be alone?

I had to take a few breaths and calm myself and just continue to listen to everyone talk. My friend’s wife is a tremendously strong woman and I know that she’ll be ok. She does have a good support system and I may be part of that.

When I got up to leave, my friend’s wife took me aside. She and I have grown close over the past few years. She knows my husband has congestive heart failure and Type II diabetes and understands that he will not live to be 80 like her husband. She held my arms and looked me in the eye. She told me she knows how hard it is dealing with my husband’s illness, his depression, his what seems to be apathy about his own healthcare. “But he’s still here, Holly. You can pinch him. You can talk with one another. He’s still here.”

My eyes were welling up as she spoke to me. I hugged her before I left.

When I got home, my husband was resting. He got up then and we talked in the kitchen while he worked on dinner. (He’s still trying to make dinner a few times a week.) I told him a bit about the service, then I went over to him and pinched his arm. “Ow! What the heck was that for?” I laughed and hugged him and told him what my friend’s widow said to me. He nodded then with a sad smile.

I am trying hard to appreciate the time I have with Wal. I get very frustrated by a myriad of things, as anyone married I’m sure can attest to, but the widow’s words are reminiscent of what someone said to me before my parents died. That day I was feeling a bit frustrated that my weekend was filled with visiting my mom in the nursing home and then taking care of my dad for a bit the next day. It honestly sounds so shitty to say that out loud now, but I was being honest. And a colleague said to me then, “I get that, but man, I wish my parents were still here for me to take care of them.”

I never once complained about that again. My weekends were often filled visiting my parents (and still parenting my own kiddo) and I felt pretty stretched, but I did start to appreciate it more. So I’m going to try and do the same now.

But I’m also pretty confident you haven’t heard the last from me on this topic. 😉

Hugs to you all, my friends, and as always, thanks for listening. ❤

Oh! And if you’re wondering what my husband’s “Forever Chair” looks like, I’ve updated the post with pics.

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I Want to Live Well

I’ve been thinking about my career lately, and what do I want to do with it for my last decade of work. (Or what I hope is the last decade of work. I really, REALLY do not want to work full time until I’m 70.) I’ve been a librarian for over 27 years. I’ve worked in an academic library as a cataloger in a tenure track position, a circulation librarian at a public library, helped form an all volunteer library in my town, was an Assistant Director and Director of public libraries (both positions included cataloging, teen services, programming, collection development and more), and now head of a department in a large (for Maine) library. I’ve been on the executive board of my state professional library organization in different capacities over the years, am on the New England professional organization board, have been on committees throughout my state where I’ve had the great fortune of working with school librarians, public librarians of all sorts, teachers and academic librarians. I’ve worked with community members and town government officials and have had the immense privilege to receive the Maine Library Advocate of the Year award a few years ago.

As my term on my state’s professional library organization board comes to an end next month, I had decided to throw my hat in the ring for a different position on the New England board. But after rolling it around in my brain for a few days, I withdrew my nomination with the caveat that at least two people were already running. (It’s good to have choices, no?) My work life has been so stressful these past few months. My library is part of a new consortium and we’ve been migrating to a new automated library system. Not only are we all learning something new, but there are bugs and weirdness and training the patrons to use the new catalog. Oh, and the bugs. Did I mention those? Weekly meetings to try and fix some of the weird things happening in the system and agreeing with other libraries on rules and procedures and language. It’s…fun, honestly. But also headache-inducing. So besides the meetings for the system, there are internal meetings to make sure we know what we’re doing and supervising staff and dealing with patrons and the many, many difficulties some of our patrons are facing in their daily lives. And of course, now that Trump has frozen federal funding, the stress and tension is even worse. That’s my daily work load, but add the professional organization meetings on top of it, and the state committee I’m on, then you start to feel like it’s…a lot.

When I won the Library Advocate of the Year Award, I remember sitting with my friend, Jon, and saying, “Shit. Is this the end?” He is incredibly kind and said I would definitely be up at the podium again one day, but I’m not so sure and I think I’m ok with that. Obviously, librarians do not become librarians to gain attention or kudos. Usually attention is the last thing we want, but gratitude is always appreciated and often we get it on a daily basis from grateful library users. I mean, we need that since typically our paychecks do not reflect how important we seem to be to so many people.

I digress!

I think for my last decade of librarianship, I’d like to stay connected to these professional organizations, maybe be on a committee or two. I’d love to go to a few conferences I’ve never been to, meet new people in my field, learn something new. But I also want to see that next generation of librarian warriors come into the field. I’d love to mentor them if they need me, but also be able to watch them grow and open any doors for them if I’m able. It’s not easy for me to step back. I do love being in the throng of things, knowing so many people in my field, constantly being in awe of them. But I can still admire folks from afar and cheer from the sidelines, right?

Now that my son is going off to college soon, I want to think about my own future that is apart from my career. Hopefully I can take a death doula course this fall. I’d love to take a few workshops on memoir writing. My letters and phone calls to both my local representatives in the Maine House and Senate and my Senators and Rep to the Congress will also continue with the occasional protest of our current administration’s policies. My volunteer work with hospice will most definitely continue. I just started training to walk/jog a marathon. I’m also leaning into what my husband needs and wants for the last years of his life. If I have a decent work/life balance, caregiving might not seem so difficult. Maybe.

And my friends. Oh, man, my friends. Look, I have a very small family now. The family I created along with my sister, niece, great nephews, great niece, stepmom and the few cousins I like, are people whom I love and love having in my life. But my friends? Those people inject so much happiness into me by just being with them! I’d love to have more time with many of them, but our lives are busy and I know that’s not always possible. I hope to carve out a little more time for my lovely, wide variety of friends, too. Although we could go to protests together and that would combine a few of my passions into one delicious day. 🙂 Or travel together! Hell, I want travel to a larger protest with a caravan of my friends!

Everything I mentioned is how I want my life to be. Having some kind of balance between my work and passions and friends and family is a good life, it’s a way to “live well.” (I just read “The Art of Dying Well” by Katy Butler and part of dying well is really living well, too.)

So tell me, what are your plans for the future? Are you in a place in your career where you’re ready to dive deeper or step back? If you’re no longer working, what do you want to do with the rest of your life? What does living well mean to you?

I’d love to hear more about what you want from your life, friends. It’s a tremendously crazy world we are currently in, and our future may not be what we intend (no matter who is President). But I still want to hear what you hope for. I really do.

I’m here to listen.

Hugs to you. ❤

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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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One More Day

She’s gone.

These are the words my sister says to me over the phone, just 5 minutes after I left my mother’s bedside.

I think that’s what she said. I’m not quite sure now. My sister and I had been with our mother for 24 hours–sleeping in recliners, talking and reading to Mom, rubbing her arms. She had been unresponsive for the day. We knew it was near the end but I thought she’d be here for one more day.

Mom had been with hospice care for 3 weeks, but at first, we thought she had a few months left. Or I did. She had a gastrointestinal bleeding that they couldn’t fix, so she began pain medicine to help. We took her to the waterfront for her birthday and ate ice cream and whoopie pies and drank coffee–all some of her favorite things. We had some wonderful visits with Mom and she seemed more like herself than she had in ages. I’m assuming she had been in more pain than anyone thought.

Then her pain increased and she was on a regular dose of morphine. Two days later she fell. It was awful. She was so fragile and now in more pain than ever. Her morphine dosage increased just to keep her from crying out. So my sister and I sat with her, told her we loved her and told her it was ok to let go. We would be ok.

Friday morning I left to go home and wake my son up, take a shower and take my boy to school. I drove back to the residential facility, thinking about the afternoon. My sister was going to go home and take a shower and I would sit with Mom, read more of her favorite book aloud and just be with her. Weirdly, I was looking forward to it. I would spend some time with my mom and hang out. Just the two of us.

When I got back to the facility, Mom’s breathing had changed. But it still wasn’t like Dad’s had been. He had long bouts of no breathing before he died, so I thought we still had a little time. I stayed for a bit then had to leave for an hour to get another x-ray for my arm. I was just down the road when my sister called me. I turned around and raced back. I ran from the parking lot into the facility and down what seemed like a very long hallway. When I got to Mom’s room, the hospice doctor, nurse and my sister were there but I didn’t look at anyone. I hurried to Mom’s bedside, touched her face and arm and just sobbed and sobbed. My body shook with grief as my sister rubbed my back.

I knew this would happen. I knew Mom would leave once I was out of the room. I said this to my sister the day before, and Mom just proved me right. I was the baby of the family. Before dementia set in, my mother did all she could to protect me, but not my sister. She was the oldest and honestly the strongest. My mother would tell her when she was in pain or when things weren’t right, but never to me.

I was so angry at Mom. Why couldn’t she have waited? Couldn’t we have this one last afternoon together?

I knew I wasn’t being rational, but none of that mattered. I was angry and sad and devastated. I thought I would be a little relieved after everything we’ve been through, but I wasn’t. This is my mom.

My mom.

My mother remained my mom until the very end. I essentially became her parent over the past two years, but she was still mom. She couldn’t remember I had visited her the day before or that her mother had passed away 14 years before, but she remembered that I injured my arm 3 months ago. Less than a week before she died, Mom stopped herself from touching my arm and asked me about it instead. My sister kept poking my arm because she forgot, but our mother with Alzheimer’s did not.

And I know she was still trying to be my mom with that last breath. Everyone has their theories about what people do on their deathbeds and what is intentional and what is not, but I do believe Mom wanted to save me from what maybe she thought would be too hard for me to handle. But I am so happy my sister was with her. When our dad died, I was with him and I felt like he gave me this incredible gift. I can’t tell you what it is or why I feel this way, but I do. I only hope my sister feels that way now with Mom. My sister’s was the first life my mother brought into this world, so it seems fitting that my sister was with Mom as she left it.

I feel lost tonight. Earlier today I found myself walking back and forth in my house, not sure what I should be doing. I called my sister and she was doing the same thing. What do we do now? What does one do without their mom? I feel like I’m in a foreign place that looks familiar, but I have no compass so I don’t know which way to go.

I miss her. I miss my mom.