logojpg-01.jpg

Hi.

Welcome to my ramblings. We discuss MSA (multiple system atrophy), caregiving, and life dealing with a loved one with a debilitating disease.

Doing the best we can

Doing the best we can

I want to scream every time someone says, “just take care of you”. “Take a walk, spend some time, do something for you” … ugh, really? I know that their sentiments are from their heart, that they really think it’s possible, but it just isn’t going happen.  They’re doing the best they can.

Caregiving has been, by far, the most difficult thing that I’ve done. I’ve always hovered around the edges; grandparents, my dad, my sweet mother-in-law. I always seem to find myself miles away (logistically) and often only able to provide words of support, and prayer. When my dad was heading into his end-of-life journey in Nevada, my sister and I communicated a lot, “How do we want to do this” and “What would dad want with that”. When the end was near, we both agreed that we were able to provide pretty much everything he wanted; her in the thick of it and me miles away. We both did the best that we could.

My own journey really started just a couple of years ago. As my love’s health has “roller-coastered” and declined, my caregiver role has changed with each event or moment. Roll call is any time of the day or night, 24-7. My cell phone goes with me everywhere, into meetings, the bathroom at work, the podium on vibrate when I teach, always in a back pocket, just in case. My love wants to remain independent, I want to continue my professional journey; it’s all about balance. We’re doing the best that we can.

The daily To-Do list varies from day to day. From wound check, check legs and feet for swelling, BP charting, weight monitoring, compression socks, organize medications (because there always seems to be a change in medication), and stocking the mini-fridge to managing meals based on this restriction or that. Monitoring the camera at home so that I know he’s “up and about” safely is my new security blanket. Many consider it invasive, but it’s one small piece of mind for me and he’s willing to tolerate my insecurity. I’m doing the best I can.

Managing comorbidities is enough to make you pull your hair out; comorbidities that equates to different doctors at different medical facilities, often with different “protocols” for disease management. I get to be the quarterback out of necessity and survival, often smacking helmets together (wouldn’t it be nice if I could really do that?) to get everyone on the same play. Protocols for one disease doesn’t always work for the other and we find ourselves scrambling, scrapping and fighting to open dialogue to treat the patient, not the disease.

I don’t expect every healthcare provider to have the extensive knowledge necessary to handle MSA; I do expect an open mind and open ears when I’m pressed with providing a quick MSA 101 education. I show up to doctor’s appointments dragging a 16 lb satchel of paperwork (yep, I just weighed it) so that there’s never guessing what we’ve done, medications we’ve used, or tests completed. I am thankful that the majority of our medical records are online, but there’s safety and security knowing that I have everything in my own two hands.

 I sometimes find myself less confident and scrambling to take a breath while the world around us spins and rolls. I jump from the cute fluffy bunny, Rabbit of Caerbannog, from Monty Python to killer rabbit with the snap of a finger when pressed to a corner.  I have my “phone a kid” option in place when I’m trying to manage extremely low blood pressure and syncope/passing out. I’m fortunate that our youngest and her husband are both in healthcare and are always a source of reason – case in point: my husband didn’t want to go to the emergency room and as I’m managing the panic of “this is it”, she’s staying calm telling him to knock it off and go followed by, “Mom, hang up and dial 9-1-1”. Seriously, I was trying to do the best I can.

Every evening, I’m still greeted with 60 pounds of Labrador wiggling and excitement and a “how was your day?” from my husband’s favorite spot, his recliner. My “good, how are you?” is based on love and not medical (as I’m giving him the once-over looking for swelling, bruising, etc). My love always tells me he’s “good” even when I can tell he’s struggling. I know that he struggles through the day, quiet, lonely and dealing with being all up in his head, but honestly? He’s doing the best that he can.

We somehow still find a silly balance in our crazy life; even if it’s just the two of us from our recliners, watching the evolution of our kids’ lives. I would be crazy to think that this doesn’t affect their lives. We know that they too are doing the best that they can.

This is it

This is it

And here I thought I had it in the bag

And here I thought I had it in the bag