You’ve probably read all the statistics about how many Americans are acting as unpaid caregivers to their loved ones. The numbers are staggering, even overwhelming. I will not go into them here. This article is not about these statistics, nor is it about the financial burdens that are a result of providing such care. It is about the emotional burdens. Specifically, the frustrations of not only being a caregiver but also of the frustrations of the one receiving the care.
There is a wide range of coping mechanisms to help deal with these frustrations. Many of which I personally do myself, meditation and journaling being at the top of the list. I guarantee these things do help, but that is not what I delve into here either, though articles on these topics are yet to come.
I am hoping that my realization of what was truly frustrating me can help you deal with your situation as a caregiver as well.
We are different
One thing to keep in mind is that every caregiver’s experience is different. We face many of the same issues, burdens, joys, and heartbreaks — but no two situations are exact. As a caregiver myself, when I speak with others who are in similar situations, I try my hardest not to presume that I fully understand, because I do not. No more than they can fully understand my situation. I can empathize, I can relate, I feel many of the same pains, but I can not truly know, wholeheartedly, exactly what they are going through.
The individual situations themselves are not the only things that make our experiences different, but also in how we understand and subsequently react to them. For me, that was understanding the core of my frustrations.
Yes, the financial burdens hurt, the physicality of personally caring for someone practically 24/7 is tiring, having a minimal if existent life outside of caregiving is nearly impossible, having family members within reach but doing next to nothing to alleviate the burdens is beyond frustration. All of these resulted in a resentment that I chose I could no longer live with on a daily basis. This is just the reality of a caregiver’s life. After working through these things using all the coping mechanisms at my disposal, I accepted the situation and was able to move forward.
Though, perhaps not as much, my vexations were still surfacing. At some point, I realized that my true frustration ran deeper than all of these things.
My ultimate frustration was and still is, a word I can’t truly define
What is my real issue? Believe it or not, it is not the fact that I gave up my career, moved half-way across the country and still struggle to find a form of income that can be tailored to the flexibility in scheduling that I need for the continuous doctor visits and hospital stays that now define my life. I was unknowingly and unwantedly frustrated with my mother, the person I care for. Not because of anything she did or does, she can not help her situation. She does not want to depend on me, but she has to. It is not her doing. What I feel is something that encompasses traits of fear, resentment, disappointment, and anger. It is not fully defined by any of these words, neither am I fully fearful, fully resentful, fully disappointed, or full of anger. I’ll just call it FReDA. I feel freda…
This all came with the realization that my mother can never be who she once was to me. She can’t be the pillar of strength, the temple of knowledge, the woman with a heart made from the same substance that is used to create angels. Truly understanding this is beyond knowing it. It’s a feeling akin to the one that I had when I was young and finally realized that my parents did not actually know everything…well, it’s much worse than that realization, but it was a painful one at the time, at such a young age.
My mother’s intentions are all still there, but her body is failing her and she is unable to control it in the way she wants. Her mind is not gone, but it is not as strong. Her breath is not gone, but she is on oxygen to aid her lungs. As her health declines, I see her hiding her own tears from me. My mother is not afraid of death, but she is afraid of the process of dying, of being weak and unable. Being faced with the reality of her mortality — to know she can not do the things she wants, or say the things as eloquently as she once knew how, in watching her abilities slowly wither away — it is a daunting circumstance and one I can not yet imagine having to face.
I do not want to be that person
It’s not like I was unaware of the reality that she is not and can not be who she once was. But, I was harboring resentment against this fact. Once in a great while, I found myself snapping at her for something she had no control over. I do not want to be that person. I found myself grumbling under my breath over something she did or did not do, I do not want to be that person. I would get aggravated when she asked me to do something that I had just told her I was doing because she did not hear me or remember me saying it. I do not want to be that person.
I never thought I would or could be that person. I’ve seen caregivers snap and lose their tempers with the people they cared for. I imagined I would never be like them. How can you act that way towards someone for whom you care so deeply? No, that would never be me… I should have known better.
There is no cure
Are my frustrations cured after this realization? Absolutely not. But, I can cope better. I can control how I react better. I can remind myself that she is not the one that frustrates me. I take a deep breath and remember that she is feeling the pain of the situation much worse than I am. She is the one faced with the inevitable. Though we all are faced with the ultimate ending, some see it coming harder and faster than others of us do. Some are suffering the consequences of decay and disability as they witness what is slowly happening to their bodies. I can imagine what it’s like, but I do not know what it is like. I can empathize that it can be fearful, painful, disappointing — much like feeling FReDA, but not exactly like it.
“Life is what happens to you while you’re making other plans” John Lennon (and others before him)
My resentment stems from the fact that she does not get to enjoy retirement as she planned; instead, she fills the time she used to spend at work with visiting doctors and staying in hospitals. She has defeated the odds after touching the hand of death twice in a span of two years. She is still a warrior, still a fighter with the iron-will to surpass the odds and survive. But her wars have taken a toll on her body, on her health. Some of her battle wounds will never heal properly.
We were supposed to enjoy her retirement together, travel the country, if not the world. Introduce her to new experiences that she was never able to enjoy in her younger years. Life had a different plan. So maybe I’m just mad at destiny, fate, the universe, or whatever you want to call it, for robbing her of the freedom she was supposed to have. For robbing us of our plans.
The best thing I can do now is to make sure that she knows she is loved, cared for, and to make her as comfortable as I can. Is she currently on her deathbed? No, she has her ups and downs as most people in her situation do. There are times when she can make a short trip, and there are times when she can not get out of bed for days. Her down days are when I need to let her know she is not alone. Her able days are when I need to help her enjoy what she can out of life — doing the little things that she is still able to do. But it’s these little things that can bring the most joy.
Final verdict: not guilty
If you’re a caregiver, please remember to care for yourself, so that you can help the ones you care for the most. Try to bring joy to both of your lives. Try to understand why you get frustrated so you can take steps to overcome it. Try not to let yourself feel any regret or guilt for what you can or can not do.
In all honesty, even though I did not speak of it here, the feeling of guilt is what truly eats at most caregivers. It’s a big topic, one worthy of its own article, and too much to mention here. You feel guilty because you can not give them more, guilty because you can not make them better, guilty because you can not stop the process, and, guilty because maybe you snapped back when you never meant to. All I can say to that is… Don’t be that person. Don’t let the guilt overtake you. Know you are doing the best you can.