end of life

by

What do you need?

My husband’s health took a bit of a downturn last week. Between the all-day and night hallucinations (which have now abated) caused by an infection and the weakness in his legs and arms, Wal can no longer walk more than a few steps. His life has been narrowed to the width and depth of our living room. I will be sleeping on our couch until the day he dies.

We have a wheelchair so we could move Wal about the house, but right now he’s too scared to use it. He’s so weak that he’s afraid he won’t be able to get back out of the wheelchair and into his recliner. Of course, we also have a lift that could help him, but we were both a bit traumatized by trying to use it last week when he fell. So I get it. Hopefully he’ll change his mind and by the weekend and we’ll give it a shot and jet around the house.

It’s amazing how much our lives changed over a day. That’s what usually happens, right? An accident, a diagnosis, a fall. For us, Wal’s decline has been so gradual that although I knew this would happen, I still didn’t think…it would happen. I haven’t been to work for a week and a half and I’m really hoping to go for a few hours this week, but even that is tricky. We don’t have any professional help set up yet, and what we have is our son and my sister. But what happens when any kind of bathroom activities need to happen? If we don’t have a hospice CNA or nurse here, then I should be the one to help my husband. If I can lessen his feelings of humiliation, then I’m going to do it. Yet how can I possibly be at home to help my husband and at work to help my staff?

I can’t. And I’m going mad with trying and wanting to be everything to everyone. I’m afraid I’m letting someone down, and no matter what I do, I will. My husband definitely comes before my job, but my staff and colleagues and the work I do are all incredibly important to me. I am a selfish person and I want to do what I love but…..

Yeah.

The past few days have been filled with bouts of crying alone, in my husband’s arms and while hugging my son. I’m tired and frustrated and scared. But we’re all still here, trying to keep our shit together.

This was taken a few weeks ago when Wal could still walk.

If you’re caring for a dying loved one and you’re lucky enough to have people that love you and want to help you, they will ask questions like: What can I do for you? How can I help? What do you need? What does your loved one need? How is your family doing with all of this? How are YOU doing?

A lot of these same questions will be asked after your person dies, too. It’ll be hard to answer them no matter when they’re asked.

I had a friend reach out last week and she asked similar questions. I was able to say, “Hey, you know what? Wal really wants an orange popsicle and I can’t find any that can be delivered. Can you get him some?” And she did. She also brought me some treats for myself that I could either freeze or just put in the cupboard for later. As an added bonus, we all got a little visit, a listening ear to hear ALL the things, and a good hug. It was exactly what was needed at that time.

When I updated one of Wal’s best friends about what was happening, he asked “How can I help?” I first texted and said Wal needed the occasional phone call or visit, which is true. He has only a few dear friends and they make him laugh and mean a lot to him. But then I figured, “Fuck it.” And I told Wal’s friend what I needed right then–noodles and Dr Pepper for my husband and hand sanitizer and disinfectant wipes for other needs due to the care I’m providing.

The first package arrived last night:

Lima was overseeing the bounty of hand sanitizer.

If you ever have to go through something like this, folks are going to ask what you need. They want to help you. And yes, it feels like a burden to have someone put that on you, but typically there are things you need or want and just don’t want to ask. I completely understand this. You feel like you don’t deserve the things people give you or do for you. But that, my friends, is bullshit. The people that care about you will do or give what they want or can because they love you and want you to be ok. And some will feel bad because they are not able to give or do, but those are the ones that can send a kind note or text or can listen to you when you need to vent or cry or scream.

I’d like to add that although this is difficult, you can tell people what you DON’T want. For instance, don’t ever tell me “At least he’s….” Nope. Fuck that “at least” shit. And the prayer hands emoji? Look, you can tell me you’re praying for us. Although I’m agnostic, I don’t mind when people say that to me. In my eyes, it means you’re thinking about us and care about us and want us to be ok. But something about that prayer hands emoji makes me want to block you. So no prayer hands either, ok?

I’ve made my own list of things I currently need or want to help myself and my family cope with our situation. Let this feed your brain to formulate your own list for whatever you’re going through–loss of a loved one, divorce, heartbreak of any kind.

My needs:

  • Good sleep (the Bath & Body Works eucalyptus & spearmint scent calms me)
  • More energy (Nespresso vertuo coffee brings me to life each morning and vanilla coconut scented lotions & soap lighten my mood)
  • Better nutrition (Bananas, baby carrots, berries and peanut butter sustain me)
  • Knowing I’m not alone (the quick gluten-free and freezable meal drop-off with a hug is lovely)

What Wal needs:

  • Gatorade and beef bullion (He’s having difficulties keeping any food down right now.)
  • Listerine (See above)
  • Puffs Plus tissues with lotion (This is really for all of us for obvious reasons.)
  • Room spray (When you have a living room loo, you need this. Something not flowery but gentle.)
  • Myself and our son (He’s got those.)

What our boy needs:

  • More energy (A double dose of Maxwell House instant coffee is how I get him up each a day, with lots of sugar and creamer.)
  • Better nutrition (Anything that’s not fast food.)
  • Therapy (That’s one for me to keep working on him about.)

What we all need:

  • Your love (Got that.)
  • Folks to talk to and share with (Got that, too.)
  • Gratitude (Have it for most things and people.)
  • To keep taking deep cleaning breaths (I don’t do it enough. You?)
  • Time

Make the best of your days, friends. ❤ Thanks for listening.

by

Death, Dying, and Remembrance Week

I took this past week off from work and did a deep dive into death work and what that might mean for me. I start an end of life doula course next month through the University of Vermont and my hope is that I’ll be able to retire from librarianship in 8 years and have a small business of helping people arrange for their death.

What does that mean? I’m not entirely sure. I have many ideas, including having a small home on my property where people can come to die. (Although we have the Death with Dignity law now in Maine–a person is allowed to receive a medical aid in dying, many folks who live in any kind of long-term care facility are not being allowed to die this way. Wouldn’t it be wonderful to provide a space folks can rent so they can die the way they wish?) I would like to be able to show people the options they have for funerals or burials. I’d love to sit with folks as they fill out their advance healthcare directives or living wills and answer questions they might have. I want to be able to show people that if they have a terminal illness, they can die the way they want to. Usually. And maybe even blend bibliotherapy with end of life care or grief or both.

So how do I begin? Well, I, of course, read. I’m already facilitating a “Grieving Through Reading” group at my workplace and for that group I’m always reading new memoirs or books on how to die well or novels about grief. I’ve honestly been doing this since before my brother died in 2017. Ten years ago, with the help of my then boss, Lyn, I wrote a grant to start a five-month library program with book discussions and presentations about the end of life. After Phil and my parents died, I started a new library program called “Death and Donuts” where we had speakers on a variety of topics including hospice, spirituality, grief and advance healthcare directives. I was really doing it more for me…or maybe for the me I was before they died. I wish I had known so much more before they died.

But now I want to DO more.

Many people think talking about death is morbid. But why? It’s the one thing every single person on this planet has in common. We will all die. If you talk about your own death or write a will, this does not mean you’re manifesting death. You get that, right? If you think more about the fact that there is an END to your life, then doesn’t that make you want to live more fully or live your best life, whatever that might mean to you?

I know that most folks find death frightening because it’s the unknown. My father, who believed in God and heaven, was very scared the day before he died. He had really turned his life around during the last 30 years of his life. He made amends for all the shit he had done while drinking (and not drinking). He had been an avid churchgoer and a true believer, but seeing him scared also scared me. Thankfully, on the day he died, Dad saw some of his loved ones–people that had already died–and seemed to find some peace and joy in that. I can only hope that they helped him get to where he needed to be.

Is it scary to think about my own death? Absolutely. Yet I think I’m more scared for my son. I want him to grow older with as much support as I can give him, whether that be emotional or financial support. And losing your mom at any age is a mind fuck. So I’d rather that not happen for a while, but I also know that he’s going to be such a fantastic man, even if I’m not around. Hell, he already is.

Funny enough, the day my week off began, my little family and I had to have a chat about how my son wanted to be notified when his father dies. This discussion began with me calling my son on a Friday evening. He was at his boyfriend’s house and I had a question for him. After we got off the phone, he texted me to say he legitimately thought I was calling to say his father was dead.

Well, shit.

Later, our family sat down and talked about how our son wanted to be notified if he’s away at college and his father dies. “Text me,” he said. Of course, I was appalled. He went on to say that he wants to be texted then immediately called, because then he’d be able to see on his screen that text before we say anything to one another. He’d rather read it then hear it?

I’m…mulling this over. What would I say then? “Pop is dead” or “I have some bad news” or a skull emoji?

But the best part of that conversation was my husband saying, “Boy, how many families have talks like this?” Our son said it was probably more than we thought, but I said, “I wish every family would have conversations like this.”

For the rest of my week off, I listened to death doula podcasts, co-facilitated my first bereavement group, visited my hospice patient/friend, gathered more titles of both novels and non-fiction books related to end of life, attended a regular meeting of the Funeral Consumer Alliance board I’m a member of, and visited the Rest in Peace Museum in Island Falls.

The day I visited this museum was the 8th anniversary of my brother’s death. Typically this is not a good day for me. But I started the day in a really good mood. I was driving 90 minutes to experience something new, which is what I try to do every July 23rd. My brother is no longer able to experience life on this plane, so I try to live it for him. And I know he’d love the Rest in Peace Museum with its tuberculosis caskets, real skeletons and the wide variety of embalming tools from the early 20th century.

Once I left the museum, however, my mood started to decline. The closer I got to home, the worse I felt. I had a good plan for the day, which included sushi with my husband and son and then “family time” due to my son’s request. He wanted us to watch a movie together or play a game and just make sure we spent the entire evening together. This all sounded great and honestly, it was. I just had a few hours where I was feeling how big that hole in my soul or psyche is. The loss of my brother will always leave shadows throughout my life until I, too, leave this planet.

But until that day is here, I will celebrate and talk about my big brother, Phil. This week I was fortunate enough to introduce my son to one of Phil’s best friends, Pat, who shared more stories about my brother that I didn’t know or had forgotten. It was such a gift to all of us.

So, my friends, get out that glass and toast your family and friends that have died. Say their names, tell their stories and then make a plan for your own death. Don’t let your family try to figure out what you want after you’re already dead. And if you’re not sure where to start, shoot me a message.

Hugs to you all. ❤