I just couldn’t do Christmas this year. Not the way we’ve done it in the past.
The thought of hosting Christmas became completely overwhelming to me and I just decided to skip hosting on the actual day. When you’re dealing with ALS you get put in a pickle. Taking Brian out of the house is an ordeal that is a blog post all in itself. Just know that it takes hours of planning and forethought, along with anxiety and many other things. It is not enjoyable for him, and as many times as I try to persuade him to go out and that it will be OK, when we do venture out he is miserable and unhappy for the rest of the day and a day or two after.
That means people need to come to us for Christmas. People coming to us means hosting. And when your people are from out of town that means having overnight guests. It takes even more planning and thought and anxiety and is incredibly stressful for a caregiver. For the last few years I’ve been trying to maintain the kind of Southern Living Christmas that I was raised to create.
I have more than enjoyed doing that in the past but as things have become increasingly challenging with Brian’s care, that becomes a whole heap of a lot of stress on top of my already full daily schedule. I hear it all the time from caregivers. “They don’t get it.” It’s very hard for people to understand because this kind of situation is rare. It’s not everyday that someone’s home has become a mini hospital. The priority of every day is making sure that the person with ALS is seen to.
As much as people try to understand, it’s hard to fully grasp. For way too long I have been upset with people about it but the longer we go, the more I realize that we are in very uncharted territory here. There are three organizations in this area that rely on ME to talk to families about what life is like with the PALS on a ventilator, so that tells you something. I have no medical training. I have a degree in Criminal Justice with 15 years in finance. But I now have two years of experience caring for a PALS on a ventilator.
At this point I know more than doctors and nurses and home care professionals. While that really grinds their gears, it also puts them at an extreme disadvantage because they really don’t know what to do. They haven’t seen a case like ours and they have to get back to us with recommendations for anything that we ask about.
Brian and I are basically both home-bound which is another thing that is really hard to make people understand. Brian leaves the house maybe once a year once or twice, and I leave the house once a week, maybe. We are here and life is just whizzing by around us. Luckily we live in an age where Brian can communicate with me and the outside world, and we can pretty much have everything delivered to us.
Still, the days get tedious, and both physically and mentally exhausting. Trying to pretend like everything is OK and go through the motions of Christmas is hard enough without having to stress over planning meals and cooking, shopping and wrapping gifts. I used to love that stress, though. I wanted to find the perfect gift and wrap it just so. I wanted the table set beautifully and the garland on the mantle draped just right.
But now…it’s not just the prep beforehand, it’s the fact that people are in your space. As I sat quietly sipping my coffee early Christmas morning, Brian took a little morning nap and I really soaked in the moment. I stared at our tree and thought about many of the ornaments. I stared at Brian, our lazy ass cat Daisy sleeping right next to him. I watched them both sleep and silently cried and let myself fill up with gratitude that I was staring at him on another Christmas morning.
I thought about our support system and how we’ve managed to get to this point. I savored the moment fully as the tears of joy and gratitude eventually turned to the grief I know so well. That voice in my head that tells me to lock this memory safely away for the Christmases I will stare at empty spaces instead. That moment is tough and the emotions are so hard to stifle, so I don’t. I just feel that pain and let it wash over me, so that it’s wave can continue on and I can move on with my day.
I don’t know that I could’ve had that moment if people had been here. With wrapping paper and silverware clinking and conversations and movies and cooking and cleaning and things like that. Don’t get me wrong. Those things are wonderful when celebrating with family and those are the things that make me love the holidays, but it can also be a lot of pressure to act ‘normal’ or to do things the way you’ve done them in the past. Granted, a lot of that pressure comes from myself and I know that.
But in addition to all that stuff that we do for the holidays, the caregiving doesn’t stop. An hour of getting Brian up and ready for him to see people, twenty minutes of trach care, then range of motion, trach suctioning several times a day, and all the other adjustments, bathroom breaks, etc. etc. etc. It’s a lot to do every…single…day, without adding Christmas on top. I know because I’ve been trying to keep things ‘just so’ for too many Christmases now. I’m way beyond tired, y’all.
Brian and I just decided we wanted Christmas day to be calm and quiet so that we could both savor it and appreciate a memory with peace instead of one with anxiety and stress. We still both love Christmas very much but it’s high time that we stop trying to keep up with how things used to be. Expectations are a funny thing, both from others, and those you put on yourself.
Now, before you go getting all sad that we had a quiet Christmas and it was just us, please don’t! We both consider this one of the best Christmases ever. Brian’s parents just visited and my parents will be here in a few weeks to celebrate. I’m sure I’ll leave the tree up, why not? It’s just that we do things a bit differently than ‘normal’ people, and we adapt to our situation.
ALS is a beast and the impact to the patient is beyond trying to explain. I cannot grasp it fully. But I can feel, and I have seen the ripple effect that it has on immediate families, extended families and friends. It is devastating. It is brutal. It is enough to break a person, having to watch their loved one battle the beast. It requires adaptation of your life in almost every way, which includes others’ expectations of doing things the way they’ve been done in the past. That includes Christmas.
Of course our families want to be with us on the actual day and we missed them, but it was nice not to have the pressure and added stress to make the day perfect. That in itself helped make the day so much better. The holidays just aren’t the same. I’ll still do everything I can to enjoy them but I’m not going to sacrifice my sanity to make it “like it used to be”.
Pumping the brakes this year was a great way to slow everything down and prepare myself to close out this year and head into a new one. I look forward to more of this, more of the slowing down and rolling with how things are versus trying to maintain some sort of status quo. If you’re a caregiver and you’ve done this already, kudos! I feel so much relief this year. If you’re a caregiver and you’ve been considering this, I highly recommend it for your own sake. You work hard enough already!
As I pondered all of this I of course went back to the voice in my head that says, “okay, now what did we learn and how can this help people?” And to that I came up with a list of five things caregivers can do (link below) to help make the holidays, or any event, easier. I hope it helps!
Five Things Caregivers Can Do To Ease Holiday Stress
Please feel free to share any other tips or advice.
