hospice care

This morning I went for a long walk out in the lovely 50 degree temps. We’ve had a horrendous winter here in Maine, so I figured just the hint of spring would lift my spirits. I hadn’t taken a walk at all in the past week, so it should have felt like a treat. But within the first 5 minutes, my body felt incredibly heavy. I kept moving along which eventually morphed into trudging along. I got to a point when I really, REALLY wanted to take a nap. Right there in the road.

But I didn’t. I somehow made it back home (an encouraging text from a friend certainly helped). I stretched, drank water, then sank into my couch. And I haven’t moved much more than that today. I’m more than tired. I feel bone tired. Fatigued. Weighed down.

Two weeks ago, Wal was accepted into a hospice program. It’s what we’ve wanted/needed/hoped for. In the first five days of having hospice care, Wal has received better care than he has in the last 6 months. In response to finally knowing that Wal’s health shows that he will more than likely die in the next six months or so, we have had better conversations about what we’re both feeling about his health, his death, my future, what we’re both afraid of. It’s all so…real.

Even though I was expecting this to happen, it’s been so much harder than I thought it would be. At first we were both a little relieved and vindicated. We were indeed NOT gaslighting ourselves. Walter really is very sick and his heart no longer works the way it needs to in order for him to keep living an extended amount of time. But for us to be right about his dying, kinda sucks. Why couldn’t we be right about Powerball numbers?

Since the hospice evaluation, Wal and I have had beautiful conversations and sad moments and times of pure joy, too. Our boy has come home two weekends in a row, which has been wonderful. Health-wise, Wal really hasn’t changed much, but now we know the truth. And now that we know, we’re trying to say everything we need to say and continue to fiercely love one another.

Wal has never liked to go on any big trips or anything like that, but he’s always liked kitchen gadgets and appliances. I put a kabosh on some of that shit a while back because why spend money on something you only use once then it ends up in the cupboard or basement? But…he always wanted an air fryer. And a few years back, I thought we shouldn’t get one for both counter space limitations and we didn’t need something to cook breaded foods that we shouldn’t eat to begin with.

But now I feel awful about it. So I ordered him an air fryer/toaster oven that came last week. I surprised him with it and told him it was so dumb of me to not get it and I started to cry. He hugged me and comforted me and said he always understood why and it wasn’t a big deal. But he was still happy that we got the air fryer. Along with the fries I bought to try the thing out. 😉

I’ve found myself riding waves of grief since the evaluation. That night, I felt such relief. My husband would finally be more comfortable and get more care and I could finally stop researching his symptoms. I wasn’t crazy. Wal was really, really ill. But since that night, I typically just feel sad. Or I’m easy to anger. I don’t sleep well. I’ve had multiple panic attacks, sometimes at 2am, sometimes in the middle of the day. I feel overwhelmed in multiple ways, hence the panic attacks.

But ultimately, I just want to figure out how best to support my husband in this final chapter of our lives. We started dating 31 years ago. When you’ve been with another person for more than half of your life, the story is long. It’s not always happy nor is it always filled with drama. But some of those “boring” chapters like talking about our day or eating dinner together, are what I enjoy most about this story. They are filled with laughter and mutual irritation of people we may have dealt with during the day and funny stories and reminiscing and sometimes exasperation with one another.

But there was always love. Even with any anger or irritation or frustration, there was always love.

And there will always be love.

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.