I've been waiting for the real words to come. When will I be able to write anything aside from Wow! Look where I get to live? There's so much more going on with me than just being taken with my surroundings. It feels like I'm in such a transition. The words are ruminating; it's like making a tincture; you have to let it Brew.
It feels that it is time to sit and try to write. Here is my attempt. This is motivated by two questions I am frequently asked. 1. I get asked regularly if there's a list to help people who have been newly diagnosed. 2. I get asked regularly if I have help for those who have recently lost someone. Each experience is unique, whether it be with ALS or loss. However, I put a lot of thought into this, seeing as my messages are frequently full of these questions,so here’s what I have.
I'm going to start with the loss because that's what's fresh for me. Most caregivers will learn that you can be simultaneously grateful for what support you get and disappointed by those who are not showing up for you. It's a paradox that is heightened in times of great need. This doesn't go away when you lose your loved one. Now you have time to honestly evaluate what relationships are worth continuing to put the energy in and which ones might be time to let go. You will be so surprised by how some people show up for you; allow those pleasant surprises to lessen the blow of the disappointment in those who don't.
They're going to be people who don't understand your way of grieving. You may feel people's judgments whether they say them out loud in sly comments or in the way they treat you. This is one of those moments where I assure you, whatever you are feeling is how you should be feeling. Please never allow someone to dictate how your process looks for you. No one is in your exact shoes, so they have no way of knowing how you should be walking.
Another paradox will be that you will be missing your person with every ounce of you AND feeling relief that they no longer have to suffer so much. This goes for those who've had to watch their loved ones deteriorate in front of them slowly, so I suppose I'm speaking to the terminally ill widows. I don't know that I can relate to the sudden loss. I married Steve, knowing that ALS would take him bit by bit in front of me. It gave us a unique relationship where we truly learned each day was a gift. It didn't mean we didn't argue, and it didn't mean that some days we didn’t let those arguments turn us into monsters. It just meant we knew we had to face it directly and quickly before it was too late. I know Steve and I would have had a different relationship without ALS, and I'm grateful for the one we did have.
There are days when I realize he was the only person who understood me in the whole world. There are days that I wonder if I understand myself. There are days where I wonder how I'm supposed to figure out how to carry on. The next day, I remember that being alive is a gift that Steve would want me to work to recognize this gift and live the fullest I can. The keyword here is work. My life on the outside seems all trees and daydreams. It seems I'm just out adventuring without a care in the world. The truth is I'm trying to allow this beautiful land I'm privileged to now call home; help me figure this out. Because, I have no idea what I'm supposed to be doing.
Creating art is the only thing that makes sense to me. I suppose it's because I had created so much art while Steve was alive that it feels like a piece of home is still here. The act of making something makes my heart pump and reminds me that I am alive. Will it be enough to pay the bills I walked into having to pay? Time will tell. What then if it doesn’t? Trust me; I feel everyone wondering what I'm supposed to do, which doesn't help as I'm over here floundering like a fish out of water. From talking to other past caregivers, I know this is the typical experience we all have when we lose our person. Especially when taking care of that person was your 24/7. I also know life led me to Steve, and it made me strong enough to walk our path even when I thought I couldn't, so there's no way it's going to give up on me now; even though it feels like I'm going to be wandering lost forever.
I downloaded this new app called all trails because sometimes, when I'm hiking, I get confused by the trails. I don't understand which direction I should go, so I look at the map, telling me if I should turn left or right. I wish post caregiving life came with an all trails app; what direction should I go? I suppose it depends on how much you shared your life while you were caregiving, if you can even relate to some of the things I'm experiencing. Everyone was so supportive of our story, and they loved it, and that meant a lot to us, and still does. Now, however, there are some days I don't want to talk about our story because a part of me feels like it's keeping me stuck in this place that I no longer get to even have. I know in real life there is no timeline to figure out what's next, but I made a decision and bought a house without a job already lined up, which happens more often to caregivers than not.
So will this art life fund this new life? I don't know. Because I don't know, I decided to quit smoking cannabis. This wasn't a light decision; however, it came a little easier than I would have ever anticipated it. I drove home for Christmas and didn't want to drive with it. I brought some edibles and didn't want to take them. I didn't have too much trouble sleeping because we had lots of wine. I came back to the mountains and realized now it's my time because I will have to get a job eventually if this doesn't work, and that means passing a drug test. However, I found myself wanting to drink to sleep, and I didn't want to create that problem. For the record, I don't believe cannabis is a problem. However, for the job that I'm qualified for, I would have to pass a drug test. Once I learned I could sleep without either, I decided it was time to see who I am without it. I've been using it daily for close to nine years. So I suppose you're wondering how I feel? At first, I felt like I didn't have any thoughts anymore. I didn't have any creative writing anymore; I didn't have these beautiful musings coming out of me anymore. So I felt like I wasn't myself. I mean, I suppose you can say I feel accomplished, that it's been over a month, and I'm now employable, so to speak. But what does that mean anyway.?
Okay let’s make a hard right turn on that trail now to question number 2.
My first and most important piece of advice I have for someone whose family member has been newly diagnosed; is to have the hard conversations right away. You don't want to. I get it, it's already hard enough to swallow this diagnosis; why would you already start facing things that aren't here yet? It's a contradiction to my next piece of advice because that is to take it as it comes. So let me explain.
If you don't have the hard conversations about how your loved one wants to live this out, then you don't know. Unfortunately, with ALS, you don't know what it's going to bring and when. If I didn't have a conversation with Steve about if he wanted to be trached or not, I wouldn't have known what to do when he was put into an emergency coma, and it was his only option to survive. I pray no one's journey is as turbulent and unexpected as that, and the truth is it's not for everyone. Which is why I say take it as it comes. It is not useful or productive to wait for the other shoe to drop. Especially because you know with ALS, that shoe will drop. I believe the best thing you can do when someone is first diagnosed is to say, hey, I want to be here for you the whole step of the way; I need to know how far you want to take this, and I want you to know that you can change your mind at any time. We will take it as it comes. If anything happens, I would like to know I am doing your will. This was a piece of advice given to me in the beginning that thankfully I took no matter how hard it was. The truth is it was never-ending having these conversations. They get easier as time goes on. Because it’s already been established that all you want to do is help your loved one live out their wishes at the end of their life.
In terms of concrete medical advice, it's hard to give that to a newly diagnosed patient because the disease manifests so differently from person to person. Still, I will say weight loss is the enemy, and so is choking; learning to get those calories safely might be the first thing to tackle.
Remember, if one doctor doesn't help you, there are others. It may seem like you will never find a doctor, but you will don't give up. Keep trying. One day you'll come across a doctor who will help everything fall into place.
You are your person's most prominent advocate, and ultimately you may end up being their voice, so remember how important you are in helping them live their wishes.
I want you to know the fact that you even ask how you can help your loved one who was just diagnosed makes you f’ing amazing. No matter how much you have to give to this person, those first days are brutal and your being there is invaluable. No one expects you to get it right all the time because, in this situation, it's one that you figure out as you go along. Caring, that right there is the first step, and you've already done it.
If you want to support my artist life, you can. On my website there are new items available under each category. I love you all.