Meet Rachel Hiles, who cares for her grandmother and serves as guardian for a friend.
Rachel writes about her caregiving experiences at Taking Care of Grandma.
What's your caregiving story?
I have been caring for my grandma, Barbara, for a little over two years now. She was a completely independent, very sharp, and organized woman who was preparing all her meals and even cooking lunch for the both of us on Saturdays. She drove herself to the store and to the bank—to pay every single one of her bills in person—or put them in the mail each month. She volunteered twice weekly at her church. Basically, my grandmother was living a life that was busier than mine at 28 (pathetic, I know), until she required intensive care after a three-week stay in the hospital (which also included her second colostomy and a blood clot), then three months of skilled nursing care for rehabilitation. Now that all the smoke has cleared from that chaos, we are looking into screenings for dementia, as her memory is just gone.
I am also guardian for a man who is deaf and blind. While I do not provide his day-to-day support, I am responsible for his affairs and finances and for ensuring that he receives the best support possible. So I am constantly juggling multiple hats and obligations.
What's the hardest part of being a caregiver?
I am seasoned in providing care for others because I got my career start as a direct support professional, caring for people with developmental disabilities. So the instrumental activities of caregiving aren't really an an issue for me—although I have to say helping with ostomy bags and cleaning up bowel which has exploded out of said bags and literally covered every square inch of the bathroom isn't necessarily a bed of roses.
The hardest part of being a caregiver for me has been coming to accept that my grandma is on a downward trajectory. Normally when you go to the hospital, you get better and go home. There were times when she was in rehab where I felt she was never going to be able to leave. Once she got home, and she wasn't getting better, I had to come to terms with the fact that my grandma is aging: she's not going to be the same grandma who took care of me all those years, she is not as I remember her, but she is a new person with a new normal. It has been very difficult to watch her change from a ridiculously educated, well-known, and active woman— someone who used to feed, clothe, care for, and bathe me to the lady she is today.
It was hard for me to realize that eventually one day this will end and my grandma will be gone. I think it's called anticipatory grief. But it helped me realize how precious the time I have with my grandma is, and how I should do my best to make her golden years the best they can possibly be.
What do you need the most as a caregiver?
What I appreciate and need most as a caregiver is a non-judgmental shoulder to cry on. Sometimes we go through times where we just need to vent lest we lose our sanity. Caregiving isn't a cakewalk: it is tough and it is grimy. Sometimes caregivers say things that sound crazy or on the borderline of abuse. We need to have people to talk to that we can completely trust with our thoughts and emotions and not have to worry about them sharing our personal business with others or reporting us to the authorities.
What worries you the most as a caregiver?
Right now, since I am the only living family member my grandma has, I worry a lot that something will happen to me and then there will be no one to provide the support she needs to stay at home.
What do you want people to know about caregiving/your caregiving life?
I wish people wanting to help knew that asking how to be helpful is what is most helpful. A lot of times people are meaning well and try to be helpful, but end up getting in the way or causing more damage. Most families have their own code of conduct, if you will, that comes with processes and procedures for different situations, a chain of command, and contingency plans. Just dropping in or offering to do something without asking first is not always helpful. If you truly want to help out by stopping by, work with me to build it into the schedule so we can maximize that time for everyone—including me (it may mean a chance to take a short break or ten minutes of peace of mind knowing that my loved one isn't alone).
If you got unexpected time off from caregiving, what would you do/where would you go?
If I got unexpected time off from caregiving, I would take off on a road trip to the one of the coasts. I visited DC a couple times and really loved it there. I was born across the Puget Sound from Seattle, and I always wanted to visit the place I was born. I love driving and exploring new places.
YOUR TURN: As we approach Grandparent's Day, have you cared for your own grandparent(s)? Still do? Tell us what you love about the role and what challenges you.