Sunday, June 29, 2014

Caregiving: An Exhaustive Endeavor

Having recently been in the reverse role as a caregiver for just the past 3 weeks, it's given me much food for thought on this subject. Which is why I have been feeling the need to bring this critical aspect of the cancer process to the forefront for another and much needed conversation.

As I reflect back on my primary caregiver over the past 2 years, I have come to realize that because I was in my own living hell of pain, nausea, depression and fear, I couldn't see the signs that my own caregiver who was cracking and breaking right in front of my very own eyes. The only two things I recall when we were halfway through my third breast cancer journey was that she said "I feel like I'm breaking" - so, when my mom came to care for me for a week, my partner Hilary melted in her arms and just started crying as she walked into our home. This should have been a major warning sign for me as she rarely cried. But because I was also crying on my mom's shoulder at the front door, I was in no emotional shape to recognize that Hilary was at the end of her rope and I hadn't even started chemo yet.

Extreme fatigue, fear, depression, hopelessness and many sleepless nights are what she lived with on a daily basis for a year and a half. Fearing what she thought was my imminent death, my partner was barely holding it together and little did I know or recognize this. I could comprehend that it was a tough role to be in, so, I made attempts to rally as many people around me as possible in the hopes of giving her a break: but I can see now that my 'babysitters' as I used to call them, were merely a bandaid on a gaping wound that needed stitches and major wound care. I additionally thought that if I arranged some grown-up 'play dates' for her like walks on the beach with friends, coffee outings, photography events here and there and dinners for us, that it would refuel her and aide in her healing process. But little did I know, she was too far gone by that point.

By the time chemo rolled around, we had already undergone 5 months of biopsies, numerous doctor's appointments, surgeries, second opinions, genetic testing and the whopper of them all, a double mastectomy. Always seeking the silver lining, we were both fooled into thinking that this wouldn't break us in some way or fashion at some point in time, but it did.

Almost 5 months into the black hole of chemo, Hilary had lost 30 pounds and was now wearing a double '00' pant size. She looked beyond exhausted and was commuting and hour-plus to work at a job that was sucking the life out of her. Then one day, she just collapsed on the floor sobbing hysterically at the end of my bed as she was checking in on me. I could hardly believe my own eyes. But, I managed to get myself out of bed, throw on some sweats and drive her to our old doctor who was only working at an urgent care 30 minutes away.

By the time we saw our wonderful doctor after sitting in the waiting room for 2 hours, she took one look at my partner and said "What in the heck is going on with you?!" My partner could hardly speak as she was now just sort of staring off into space, so I jumped in and told our doctor what she had been doing for the past 10 months. Beyond concerned and worried, she ordered Hilary to come back in 2 weeks to check up on her, lectured her to eat more and started her on some much needed meds. Neither one of us had ever taken any anti-depressants before as we were more of the meditate-and-heal-ourselves philosophy, but, she had already hit the wall and it was time to change things up - A LOT!

What we discovered a month later and a second collapse at my bedside, was that hindsight was certainly 20/20. What should have taken place during those 10 months was that we should have arranged more back-up caregiving for my partner. More than we could have ever imagined. And while I was receiving the support and care of so many, little support and caregiving was going to Hilary. Instead, people simply made comments about her weight loss and then immediately focused on me. And while I needed care as well, the person that really could have used some counseling, friendship and support was her! And it wasn't that she didn't have any, she simply didn't have the amped up or authentic level that she truly needed while other 'friends' told her that they 'felt' that I was going to die and that it was my time (insert waiving, angry fists in the air here!!).

Moral of this journey..... pay attention to the caregivers, be choosy about who you surround yourself with, don't be afraid to talk to other caregivers and reach out to a caregiver yourself, because trust me when I say, they won't be able to. It should also be a time when a caregiver visits their own physician to discuss what's on their plate and consider some medical help. And as for counseling, HA - it's an understatement to say that caregivers could use some sage advice and a listening ear from a professional and/or a support group. Heck, we're still in 'cancer counseling' so that we can process the past 2 1/2 years.

On the 'silver lining' side - I'm happy to report that my partner has gained those 30lbs back, is now working for an amazing company with fabulous (normal) people and is smiling once again. We have our weekly Tuesday check-in where we openly and honestly share where we are on this continued journey. But don't get me wrong, we still live with daily fear but it's significantly less now and we continually thank the universe each day for our lives, each other and another day to be grateful for. A new perspective indeed. 

In the end, there are resources (see below) out there for caregivers. And be sure to see what your local cancer center offers as many have several programs for both patients and their caregivers. 

In a nutshell, we are relieved and happy that we survived walking through the fire and are now better versions of ourselves. Thank. You. Universe.

Caregiver Resources:

   Caregiver Action Network 
   Cancer Care
   American Cancer Society
   Rob Cares - Caring for Caregivers