What it's like to be a caregiver

 If you have ever taken care of someone or been a caregiver, you know. But for those that don't ... I wanted to take the time to give it a go at explaining what it was like/

Every day is scheduled. Every moment there is a plan or a protocol in place to take care of the unknown. If you are a caregiver for someone who is terminal and under palliative care, there has to be a plan for the unknown. I remember calling every day when I wasn't up there to check in and see how my mother was doing. I was talking to my dad and giving him a plan for if "insert horrible thing here" were to happen. We had a system. I was "his" person that called and checked in and reported back to the doctors. I had to. I had made connections with mom's physicians and arranged all the logistical ends of things. I was also the contact for all of the caregivers and had to organize care and support. I was the contact for the hospital and also for LHIN and the equipment. God, I can't thank Ruth Hoover, Nicole West, Brooke Bentley-Sheppherd, Dr. Alex Ferreira, Dr. Ynoe Fabio Demorales, Josh Kelly, Debbie, and all of our amazing supporters. We were a team and if there was something I needed I could call on them to act and act quickly. There were times when I had to chase down reports at 2 am or stay up all night to ensure that things were being done for my mother at the hospital. There were multiple phone calls to these people and of course, my delightful brand of candor would come out and we would get things moving for mom. New equipment, more care, more of whatever it was she needed. It was constantly trying to chase down all the things and that was my role in my mother's care. 

So with that, my scheduling and planning abilities came into place. When mom came out of the hospital and knew that she was not going to survive this. She waited for Carly to go home, for dad to go to the dump, and then she left me with instructions. She knew that I had the skill set to do whatever she asked. I was "determined" a trait that she had passed down to me and she knew that when the time came I would be able to act. So that is what I have been doing, what I am still doing. Acting on her behest. Her requests were simple. Cremation, a celebration of life to her liking... and to make sure that dad is okay. 

In the interim of all of that, I was being a bit of a shit with her and trying to lighten the load of a heavy conversation... But I knew that I was given a very important task. I had to keep things going, which meant paying the bills, organizing things in a calendar for mom so she could see every day what the day would bring... months before she would pass, she used that as her bible as her memory was starting to fail her a bit. All appointments, all equipment, I was the gatekeeper, the I.T. person to connect us all if it was a virtual appointment... whatever was needed I became and as a caregiver, that is what you have to do... it is exhausting, it is so much work and effort but the pay off is in time, is in moments and smiles, bouquets of fingers and of love... It did not come without challenges though. There were difficulties, there were hard days where my mother wasn't exactly nice about dying (no one can fault her for that) It's a hard pill to swallow and there were days where there were less than gentle reminders to be kind to those that love you and that we are dealing with it too. 

Being a caregiver means splitting your time. Your focus has to be on the ones you are caring for and if you have kids, you will never win. You will always feel that you are failing someone, but in reality, you are not failing anyone but yourself in that thinking. Kids understand more than they let on and understand that things are difficult or that something is not right. They may not be able to vocalize this but they will find a way to let you know... For me, I had to take 3 weeks solid of being at my parents' house with little breaks to see the kids. It was hard. It was brutal, but that was time I could never get back with my mom. it was precious and in this instance, it was what was needed. It made her death less shocking and more acceptable if that makes sense. It was still hard and still hurt like hell, but I knew that I was there for every moment, all of the medication, all of the emergencies, or trying to figure out things for her... I was there for all of it, my sister and my dad... it was also a situation where we bonded. We had our moments where we did things together. I made my first turkey dinner solo, I cooked, I did errands with my dad, and we had our evenings chilling out... it was nice. 

That leads me to the last piece, it's not all dark. focus on the lighter aspects of the shared experience and realize that you are not going through this alone. There are so many people out there who have experienced this and that you are not special... you are 1 of many and their wealth of experience and knowledge is important and genuine. That group of people I was talking about earlier... they were invaluable because they each brought a solution to a problem we had faced. I think about Joanne and bob being there for all of the things we didn't think of and it was more because we didn't even know where to begin to solve things. They had information that was suggested and then was put into practice. The people you surround yourself with are the bright spots. As I think of the day that mom passed, I think about the love that our chosen family showed us by getting the medical equipment out and reconfiguring the house while we were at the funeral home making arrangements. We came back to sandwiches, drinks, and love... that made all the difference. Our people. They were there with hugs, drinks, shots, and water and Tylenol when we were less than functional. We sat our own version of Shiva with mariokart, and food and looked through photo albums. 

Look for the bright spots in the darkest and lowest points. They are there and they are worth every hard part of being a caregiver.