helping others

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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.

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A Room of One’s Own

“So long as you write what you wish to write, that is all that matters; and whether it matters for ages or only for hours, nobody can say.”
― Virginia Woolf, A Room of One’s Own

I love to write. I love to write what I want to write. This might be poetry, letters, even the occasional library report can bring me joy. And I most certainly love to blog, to share my life, my running, and my adventures or lack of, with you. It helps me align my feelings, my thoughts, and my mental health in a way that allows me to keep functioning. I’ve always called it my therapy, but it’s really more than that. I tell my therapist many more intimate details of my life than I could ever share here, but I hope that in some ways I can help with this little blog–help myself, assist you with whatever is troubling you (often my brutal honesty allows you to tell me things you wouldn’t tell others), and for you to help me.

In my last post, I discussed trying to find ways to feel contentment and to explore new ways to enjoy this life of mine. I applied for my passport like I said I would, and I’ve started to create a space of my own in my basement. I want room to not only do my volunteer work, but I really, really want a place to write. In all honesty, I want a space where I won’t be asked questions or see the dirty dishes waiting for me or hear the hum of the refrigerator calling me and convincing me I need a snack. I just want to be present, with my laptop and my words and my thoughts.

Sometimes, though, I just want to be by myself and maybe a podcast or an audiobook. I don’t always need to write down my own thoughts but listening to others can be just as therapeutic. I also want and need to move my body and sweat and feel the sun on my face. (I’ve been told that I’m a bit cranky when I don’t exercise.) Running still isn’t in the cards for me, but walking is still a relief. Being outside also can feel like “a room of one’s own.”

Apple trees my grandfather planted decades ago.
Beautiful scenery I captured on my walk.

I walked over 5 miles this morning, and as I looked around me, I couldn’t help but smile and take deep breaths and just be in awe of the beauty of where I live. Although this isn’t truly my own space, it can feel like it and it allows me to be in the presence of greatness.

Then there are times like tonight, when all I want is to be with my thoughts and my laptop. That’s when I escape to the basement. The space I’ve created is…odd. I’m using a borrowed table (which I really need to return), a borrowed office chair (which hurts my back after a bit), a small bookcase, a lamp, and a heater for later in the year. My son says it’s homey, with my rocking chair and grandmother’s knitted afghan off to the side. I have two candles in large stands and a few throw rugs under the table and in front of the rocking chair. On the wall is a bunch of Trevor Project info and this:

A friend made this poster for me for my birthday. It was first said in a text, but then I asked for it to be in a larger form because it was something I didn’t want to forget. It’s poetic and beautiful and not something I’ve ever thought about myself. For someone to see this bravery in me that I never recognized, gave me hope. It made me think that I could in fact be the person I’ve always wanted to be: a good human, one with many flaws, but a person that listens and empathizes and cares about others.

I am, most definitely, not always that person. Often, I don’t want to listen to anyone else, I don’t care about anyone else, I just want to go back to my home and crawl into bed. I have many days when it takes all my energy to put a smile on my face, place one foot in front of the other, and get through the day. But I think we all have those days, don’t we?

Although my friend sees bravery in me that’s difficult for me to see, I do want to be brave. I want to stop always doing things I’m expected to do or being who I’m expected to be. I want to take risks, but I’m frightened to do so. I suppose that’s where the bravery should come in. 😉

Is there something or someone you want to be, but don’t think you are? Is there a place you want to be in your life, but not sure how to get there?

Let’s try and figure these things out together. I’m willing to try and figure out who I am or want to be if you are. As my friend Johnny just said to me recently, “Take the leap! You won’t regret it.” Will you join me?