Taylor-Leigh
It’s been 2 years of being my grandma’s keeper.
This year I’ve seen more and more people, especially young folks, caring for a loved one. I’ve read countless stories. Many who are in similar positions as me. Many who are struggling on a much deeper level. And many who have offered solitude. This website is for my own story. This is a piece of my caregiving story.
Before I start, I just want to say – I’m so proud of us. I’m so proud of my co-caregiver, AKA my mom, for juggling a fulltime job and coming home every day to take care of her mom. I’m proud of myself, for growing immensely, for learning to take care of myself and my grandmother. And I’m proud of us both as a relationship entity, for doing it together in a healthy way. It was quite an adjustment, but we’re here. We’re doing it as best we can to honor my grandmother’s wishes even though every day is not exactly a cup of tea.
Now let’s get into it.
You guys, it’s hard. For 1 year, I wrote a dainty post about what I’ve learned from being a caregiver, and while it’s valid, sometimes I have to be real and unfiltered.
Here is the truth.
Grief
I am grieving. And I have been. Grieving the grandma whom I had before and who I’ll never see again apart from in photographs and memories. Grieving the eventual passing that I anxiously think about, not knowing if it will happen in a few months or a few years. I wish I could know when, so that I can be with her, yet at the same time so I can know if I should move on with my life…
The dilemma of being a young caregiver is exactly this – trying to live my own life while caring for a loved one, unknown of when our time is up.
Grief hits in all sorts of unexpected ways. It shows up as anger, anxiety, depression and hopelessness. Sometimes I grieve the life that I wish I had; the life that I had before.
And because of that grief, I feel guilty.
Guilt
The guilt is overwhelming. In fact, I feel guilty even writing this. I feel guilty when I can get out of the house and enjoy myself, while my grandma is stuck in her bed or chair. I feel guilty talking about her. If she ever were to know all of these complex emotions that I have been experiencing, she would feel guilty too. She wouldn’t want to put me through this, and at the same time, she doesn’t understand. She doesn’t understand the level of care that she requires now. Being changed in the bed and being unable to stand up have become so normal that my grandma doesn’t know what these limitations mean anymore, or that they’re even limitations in the first place. All she knows is that she feels stuck and she wants to go “home.”
I am not a savior.
I feel guilty that I can’t save her, that I can’t help her any more than I do. And it’s not my job to save her either. It’s a common thing for caregivers to feel like we aren’t doing enough. That we want to be healers. And that is just not entirely possible. We can’t go back and turn around entire lifetimes of our loved one’s struggles, trauma, unhealthy patterns and behaviors. The best thing we can do for them is to be with them, and to do what we can while taking care of ourselves.
Life lately has been a mix of feeling blissfully grateful for the people I love in my life and the things I get to do, while feeling guilty for getting to be outside and enjoy it, for leaving my grandma bedbound in the house, and for thinking about what is next in my life aside from caregiving.
Knowing that someday she won’t be here makes me simultaneously feel like I want to spend all my time with her, and guilty for having a life to look forward to. I have to remind myself, that in her right mind, my grandmother would want me to be happy.
Heartbreak
She doesn’t remember me sometimes. She doesn’t know where her relatives are or that many of them aren’t here anymore…
It hurts to see her realize all over again her situation. Sometimes I feel like it’s the scenario in 50 First Dates in real life. The main character is reminded every day of her brain trauma and memory loss.
It hurts to hear her realize that she will probably never see her family again unless they travel across states to visit her.
Many days she doesn’t want to do anything, and I twiddle my thumbs wishing I were being “productive” with my time. I want to do anything to get her mind and heart from sinking. Some days she wants and needs everything and I’m running around like a crazy person attending to her hand and foot.
I’m working on my codependency, but sometimes I can’t help it. When we are around people all the time, we absorb their energy. When she’s frustrated, I’m frustrated. And I need my space from her. When she’s happy, I’m happy. And I want to be with her. My love for her is unconditional, but sometimes it feels like I’m in a whirlwind.
I’m tired.
I’m actually participating in a study about caregivers and insomnia because a) its a thing. And b) trying to bring some extra cash to my minimal caregiver income y’know?
But also, I’m mentally drained. I’m emotionally fatigued. And physically I’m always going back and forth between being overwhelmed in my body, void of energy, and needing to get out of the house and get the ants out of my pants.
I’m postponing my wedding.
Trying to get married and be a caregiver and date a person who is also the caregiver for his kids is hard…er than I thought it would be. Not even just planning the logistics, but being emotionally, mentally, and physically ready to commit to each other. I am immensely grateful that I have an unconditionally loving and understanding partner, who loves “Grammie” like his own.
I’m setting boundaries.
Listen, I love my grandma. I actually like caring for her. But I need space. I actually took time off this year. I made a time-off request sheet for my mother (my co-caregiver).
I’m not just blowing everyone off whenever I want. I stick to my schedule, but I’m not letting anyone take advantage of me.
Everyone needs time to themselves. Especially caregivers. To reflect, to be creative, to do absolutely nothing, to find pleasure for pleasure’s sake.
I’m asking for help.
This is the #1 piece of advice I see through all the caregiver forums and articles. We have gotten lots of help from my grandmother’s home health team, from dispatch health, from our neighborhood Buy Nothing group, from our community facebook group, from my partner, from friends of friends. Maybe even from General Caregiving | The National Alliance for Caregiving. And it’s something that is necessary to continue to sustain this lifestyle of care.
Have we been screwed over before? Yeah.
Have we had to sometimes push for the proper care/what we know is right? Yeah.
Is the system broken? Coming from lots and lots of family caregivers – Absolutely. It needs to be better.
Do I occasionally ask for my partner to come over and work from the house so that I can attend an appointment? Double yeah.
I’m growing the heck up.
Sometimes I wonder what this season in my life is here for. What am I supposed to learn? Where is it leading me to?
I’m not interested in things I used to be, like partying and drinking, impressing people, or superficial connections.
I’m interested in investing in myself, in my health, in real relationships, in deep connections.
I’m interested in finding enjoyment in the everyday, both big and small. I’m understanding that life doesn’t start when …xyz…It’s happening now. And I don’t want to waste it.
Relationships, though.
At the end of the day, what really matters? People don’t always remember what you do, or what you own, but they remember how you made them feel. And after 2 years of caregiving, I’ve learned about what kind of relationships I want in my life.
I feel like Covid has taught us all about each other, who is really there for us unconditionally, and who we want to be there for too. The kind of people that support you, inspire you, nurture you, challenge you, and grow with you.
I have lost a lot of friends. Maybe those people weren’t my real friends in the first place. I’m looking forward to making new ones who are open minded.
Rewiring my mindset
This one I plan to go into a lot more detail in another post. But let’s just say that I’ve learned a lot about the conscious and subconscious mind. Our reality is a result of what we think. And it may not always be intentional. Because I choose to be a caregiver, I choose how I think and act. Do I let my circumstances control me? Or do I take responsibility for my desired outcome?
The past 2 years I’ve grown a lot, thank God, because if I hadn’t, I’m not sure I would have made it this far.
Bless ya’ll.
Thank you and good night.
