The first two caregiver episodes were written from my point of view, as a pALS. It’s important that we, as patients or whatever you prefer to call yourself, are aware that we are part of a relationship with our caregivers and impacts the care we receive. It’s the theory of being part of the solution vs being part of the problem. We all mean well but it’s easy to forget because we’re tired or depressed or in pain. I’m certainly guilty of being less than pleasant at times. It happens to the best of us. Ya know?
I’ve been asked more than once, how do I keep my positive outlook on things. First, I don’t have any pain. I’m fortunate with this and I pray that it continues. Second, I’m not dead. I really like not being dead and, again, I pray that continues. Third, I’ve experienced worse things than ALS. Yes, you heard me correctly. Hmmmmm? You see, before I was diagnosed with ALS, I was a caregiver for my terminally ill wife, Jennifer. One day she was fine, the next day she wasn’t. A little more than a year later and she was gone. Brutal. Just brutal.
Now, I’m sure that my statement is controversial but that doesn’t make me wrong. When you have a podcast you can say whatever you want, too. But I’ve been on both sides of the issue, so maybe hear me out?
Being a caregiver for a terminally ill loved one is just brutal. Not only do you struggle and work really, really hard. When it’s over you have to bury your loved one and then you have to go on, alone. Dying, on the other hand, really doesn’t take much effort. People fall over, dead, with hardly any effort whatsoever. In fact, dying is so easy you can do it in your sleep. I know lots of people who have died. Doesn’t even impress me anymore. But Do you want to know how many people become caregivers? A lot fewer. Hmmmmmm?
Currently, there is a shortage of paid caregivers in our country. It’s a problem with no real solution on the horizon. However, this episode is for the unpaid caregivers. The moms and dads, brothers and sisters and the children out there that all pitch in when they don’t have to and don’t want to. The family and friends and strangers taking time to say an encouraging word or make eye contact with a smile and a nod of the head. I see you. We all see you and we all appreciate every one of you. Thank you.
Okay. Here we go.
Jennifer got up and walked out of the oncologist’s office sobbing, and I was right behind her. You have inoperable colon cancer. It’s treatable but incurable. You have two to three years to live if your body responds to the chemo… Blah, blah, blah. Blood had rushed into my ears as my heart raced. I could see the doctor’s mouth moving but I could no longer hear anything, literally. I got up and rushed to catch up with my wife who was already pushing out the front door. Take me home. That’s all she said and then looked into my eyes. I’ve never seen pupils so wide. Take me home. So, I took her home.
All there was was silence. We just sat there. Probably an hour went by until my phone rang. I walked out onto the back deck and closed the door. Our family physician was also a family friend. Small towns are like that. Ya know? Good news travels fast and bad news travels faster. Very, very bad news was on the other end of that phone call. I really didn’t want to answer. So I didn’t. The voicemail notification came through next, quickly followed by a text. Texting doesn’t stutter, crack or sob while trying to form sentences, so I went with the text. We had to come back. No shit. Ughhhhh.
I took Jen a glass of wine and handed it to her. I had my own glass and we sat there. Still nothing had been said. We watched the fish swim lazily , back and forth, while shooing the dogs away. The wine was good when we opened it but we had left it out on the counter, overnight, and loosely corked. Warm Chardonnay is nobody’s favorite but we didn’t care at the moment. Jen, We have to go back. Hmmmmm ? I set our now empty glasses on the counter while she fixed her makeup. As I closed the door behind us we stopped and I pulled her close, hugging her into me with strength. We need to go listen and understand what the doctor thinks we should do, I whispered. I could feel her nodding into my chest. People survive cancer these days, we’ll get a second opinion. She nodded again. I love you, I whispered. She sniffed and pulled back a little and then looked up at me, giving me a forced little smirk. She took my hand and we headed back to the oncologist office.
Stage 4 colon cancer with multiple metastasis to the liver. Too many to count. One spot in the lung. Two large tumors. We’ll start chemotherapy right away, possibly tomorrow. This time I listened intently while Jen stared through glassy eyes. When he finished he asked if we had questions. Jen shook her head and then followed the nurse out of the room to get blood drawn. Once the door closed I moved my chair next to the oncologist so I could see his files and computer screen. Did I have any questions? Fuck yes I have questions! Inside I was enraged. You know the whole fight or flight thing? I was in full fight mode. I have no doubt that the doctor was questioning what was happening at that moment. I can be intense. Ya know? Hmmmmm?
Show me. I looked him right in the eye. I don’t want you to say one more word to Jennifer until I have a full understanding of what is happening. Show me everything. And that’s exactly what happened. I asked every question I could think of as we scrolled through MRI’s, CT scans and test results. To his credit, the doctor walked me through everything. As we scrolled through the images of Jennifer’s liver my crash course in cancer overwhelmed me. My heart was crushed under the sheer gravity of what was unfolding before me. I sat and listened to how my wife was going to suffer and die. After all of my questions were answered I made sure he and I were on the same page. Unless she said otherwise, everything goes through me first. Everything. She started chemo a few days later. She never saw those images and never asked to. Hmmmmm.
And that’s how my journey as a caregiver for my terminally ill wife began. By running away, ignoring phone calls, intimidating oncologists and giving alcohol to a liver cancer patient. Whatever mistakes you’ve made as a caregiver, I promise you, you are not alone in that. It’s taken me years and a lot of therapy, praying and self forgiveness to get past my shortcomings
as a caregiver, let alone as a father and husband. Some of my wounds will never fully heal but I’m doing pretty good these days. Ya know? Except for a mild case of ALS, of course. Hahaha.
My first bit of caregiver advice is this, you have to put yourself first. You’ve probably heard this bit already but it’s true. It’s counterintuitive and sounds selfish but it’s true anyway. If you can’t take care of your loved one because you’re sick, depressed or hungover, well, then you’re both screwed. Throughout my podcasts I continually preach to pALS that they are the boss of their care. No one is going to put as much time into their care then themselves. The same is true for caregivers. You are the boss and you need to run your show at the highest level possible for two reasons. First, your pALS needs you. Second, you’re probably going to survive this journey and, when you get to the other side, there should be enough of yourself remaining for it to matter. Don’t you think? I do. I know listening to this and facing this totally sucks. It really does. We get it. Ugh.
Get help. Get help wherever, however and from whoever. Start a thank you list for when you have time to deal with it and build a team. Use every resource you can find. This is an emergency and you are going to do things unconventionally if you need to. Get a notebook and a three ring binder. Put every ALS document in the binder. Take the notebook to every doctor visit and use it. If you want, use the recorder on your phone. The goal here is to be organized and to let your doctors know that you are paying attention. Trust me, they will respect you and remember you. Do you know what Jen’s oncologist gave me before I left his office? His cell phone number, and I made sure he had mine. Look them right in the eyes until they see you. Hmmmmm?
Get a therapist and use them. Especially if you have kids who are old enough to understand what’s going on. PTSD is a real thing. The more you can spread things out and keep the conversations light and flowing, the less you run the risk of tension and tempers growing out of control. For a long stretch of time I was seeing my therapist twice weekly as well as seeing Tina at the house after she chatted with Jen. I know some of you hate stuff like therapy and I’m with you. I had to force myself to go. Go anyway.
Something else important to remember, don’t take it personally. Any of it. Patients can be very, very mean and sometimes even say hurtful things on purpose. I certainly am guilty of this and Jen was too. When people are slowly dying their options for emotional outlets are limited. It’s the people closest to us that get the brunt of the shrapnel when we explode. It’s unfair. But it’s not personal and you can’t take it personally, as difficult as that is. In a lot of ways, the person you used to know and love has changed forever through no fault of their own. Again, therapy and self care is vital. Ya know? Hmm?
Before I roll off of my soapbox I want to address my fellow patients. Yes, you have a terminal illness, but never forget that it affects everyone in your life. ALS Is a team sport. ALS Fight Club baby! You must use your time and resources to help others help you. You have to direct your care and be a good problem solver. You have to encourage and support your team. Maybe that means that you order lunch today? Buy a movie to watch? Or just say thank you. Heartfelt thank
yous go a long way most days. I realize you probably can’t control much but maybe you control more than you think. The caregiver shortage is real and we have to keep the good people around us as best as we possibly can. Hmmm?
Anyway, ALS is much too serious to be taken so seriously. I hope you can find some good moments to enjoy with your people. Peace.
