Living in a Bubble
The other day my Instagram story included a video of me at a stoplight talking about how weird it felt to be driving. Before then it had been 87 days since I’d left our house. Yes, you read that right. Eighty seven. Isn’t that weird?! For the last few months we’ve been living in our own little bubble. Honestly, it had gotten to a point where I thought I might just see how long I could go. I was so close to 100 but Brian’s parents were here for a visit so I had to hop in the van and check out all the construction around our neighborhood.
While there are moments I think I might go crazy, they are few and far in between and overall I’m content to enjoy this bubble the best I can each day. It’s definitely possible to get out and about with a ventilator and a trach. People do it all the time and we knew that going into the trach surgery. So why don’t we leave the house anymore? Great question.
It’s been a weird year after the trach. While Brian can get out with his ventilator, it’s quite the ‘thing’ to go anywhere. It requires three pieces of equipment that require power, a backpack, and another bag. It also requires a lot of patience and trust and is usually an all day affair. Even on our best travel days it would make him very anxious. In addition, the movement and jostling around get Brian’s secretions going, so he needs trach suctioning and drool management the entire time we’re out. Once home it takes hours for the secretions to settle back down and for him to get comfortable in his chair again. It makes him very grumpy, to say the least.
Brian HATES going out now. I offer to take him anywhere he wants to go and he says it’s just not worth it. Breaks my heart but he doesn’t complain about it. I’ll keep asking anyway. Since Brian won’t go out that means someone has to be here if I need to go anywhere. Finding the right caregiver at the right time can be what feels like a never ending cycle of trial and error. Finding the right one that can handle trach care is even more of a challenge. It truly requires skilled nursing care (or someone with real experience) and that can be very expensive. It’s covered under Medicaid but we don’t qualify for that because of my retirement savings and it’s too expensive for us to utilize in the way we’d need to (4-8 hours per day) with me not working. Our story is not uncommon. I’ve read the same thing over and over on caregiver forums.
I did recently go through the process of changing our palliative care company so we’ve got a new round of resources. With that, everything comes to Brian instead of him having to go out to the doctor. I’ll get back on the respite care hunt again soon. Brian’s new social worker is also looking into it for us. Right now I’m tired of the hunt and fine to take a break from looking for the next caregiver. The last time I left Brian alone with a caregiver he got really scared with her sense of urgency when he needed suction. It freaked me out and I haven’t left him since.
So we’ve just been kind of living in a bubble lately. I don’t mind it for the most part, though there are certain things I long to get out and do. I am in awe of our modern world. We can have anything we need delivered. (For a fee of course!) Luckily we are blessed to have such great friends and family that help us out in so many ways, bringing us the things we need, and keeping us company so we don’t go stir crazy! My BFF Shannon brings us groceries all the time. Brian’s BFF Jimmie visits Brian often, usually fixing something for us or installing A/V equipment to Brian’s specs. Other friends check in often and will do whatever they can for us if we need something.
As a full time caregiver that’s stuck in a bubble, yes it can get lonely and depressing. Again tipping my hat to our modern world, I can easily stay in touch with people, and with what’s going on ‘out there’. Therefore, I can’t even begin to express my gratitude for so many things. I take a quick walk around the house each day, thankful for the bubble that we have and that we can find peace here, among the pain and sorrow of living with such a cruel and merciless disease, trying not to think about what it might be like if the bubble bursts.
My advice to caregivers is to keep friends and family close as a disease like ALS progresses. Let them help with certain tasks for PALS from the start. It can get as personal as the PALS and the helper want it to get. Sometimes the PALS isn’t so wiling to let others help (ahem, Brian.) He will let Jimmie help with a few things. Other than that Brian is particular and wants me to do everything. While that melts my heart, it can also be exhausting. But Brian’s got that smile. Hard for me to resist!
Fill your bubble with the things you love and love the space around you. You could find yourself confined to it someday. Surround yourself with people who lift you up, that make you feel good, that give to you as they get from you. Build strong and genuine relationships with people. You might rely on them someday and them on you.
Thanks to all of our people. You help keep us going the way we do, always showering us with love and support. Thanks for enabling us to continue living in our bubble. We love spending the time together while battling a monster. It helps keep that smile on Brian’s face, even with ALS!
Now, let’s see how many days we go from here…
How many days do you think you could live in your bubble?
Living life with a ventilator? Leave a comment about your experience getting out and about.