30) Reframing the Role of the Adult Child Caregiver

After working in health care as an occupational therapist (OT) for over twenty-five years and helping to take care of my own parents and in-laws at the end of their lives, I feel like I could write a book on the topic of how to care for aging parents. Who knows? Maybe someday I will! That day is not today though, so we are going to limit this discussion to several points I want to make. I am hoping they can possibly help you to reframe the way you perceive your parents as they get older and also impact the way you care for them. (This can also apply to how you reflect on your previous role as a caregiver if your parents have already died). The first point to consider is that nothing is permanent, and it was never supposed to be. Second, nothing has gone wrong, and everything is happening exactly as planned. Third, none of it is happening to us, it is happening for us. Last, we cannot control the Universe or our parents, no matter how much we might try. We can, however, set clear boundaries regarding what we are willing to do as a caregiver, reinforce them, and forgive ourselves when we are less than perfect.

Okay, so let’s start with the first premise that nothing or nobody is meant to be here permanently. We kind of spoke to this last week when we were talking about saying goodbye to our furry friends. I know it seems obvious, but many of us do not fully accept that we are all going to die someday. We deny that it is inevitable and there is absolutely no way of avoiding it. We tend to turn it into a big drama when it happens even if it is expected. In general, we just have a hard time accepting the reality of death and this just makes everything worse. Don’t get me wrong, I am not saying losing a parent is not going to feel terrible or be difficult no matter what, but we add layers upon layers of suffering on top of the actual loss that makes us feel a million times worse. Instead of being grateful for the time that we had with our parents, we focus on the fact that we don’t have them anymore. Instead of accepting that they are gone, we wish they were still alive (which is literally rejecting the present moment and only leads to more suffering). Instead of staying present and future-focused, we get stuck in the past either reliving our short-comings as a caregiver or thinking the best days of our lives are behind us. Instead of being grateful that we outlived our parents and were able to care for them, we dwell in our grief and overlook that this is a gift that does not happen in every family. We have to learn how to detach gracefully from our loved ones when it is time and understand that we are all here for a temporary time period. This is not a problem. It is just the nature of being alive.

Next, let’s discuss this idea that when something bad happens in general or to our parents (or anybody for that matter), we believe something has gone terribly wrong. It hasn’t. The Universe does not make mistakes, and everything is designed for us to evolve and experience personal growth. I know this is a tough pill to swallow because it is so uncomfortable to see our loved ones struggling and in pain. When we witness this, we think it should not be happening. We believe they should not have to suffer the way they are, but we are wrong. I also want to offer you that if we are not there with our parents when they die or we don’t get to say I love you one more time, we were not supposed to be able to do that. They (and we) are experiencing reality exactly the way it is supposed to be. We know that because that is what is actually happening. Thinking anything else “should” be happening is just an offering from the ego that will lead to even greater suffering. In fact, whenever there is a "should" in one of our thoughts that is a red flag that we are totally in our brain BS. Let me remind you that the Universe does not make mistakes. If you are a caregiver who is still full of regret because you were not there at the end because you left the room for a minute, let it go. Trust me, your loved one was waiting for you to leave the room so they could die. Nothing went wrong!

Alright, so let’s talk about how every life event is happening for us, not to us. Let’s be honest here, as humans with a brain, we like to view ourselves as victims. When bad or uncomfortable situations arise, we tend to feel sorry for ourselves and even sometimes believe that the world is out to get us. We think OMG, how much more can we take? Why is this happening? This is not fair. We don’t deserve this! We did everything we were supposed to do so why is God doing this to us? We either question or flat out deny the present moment and reject it repeatedly over and over. As caregivers, we can go years in this state of mind, which is breeding grounds for resentment and self-pity; two emotions that literally have no upside and do not serve us in any way (well, they do serve us in the sense that if we are experiencing either of them, we know we are in brain BS and our ego is in charge).

So how do we get out of this terrible state? By now we know that thoughts create feelings, those trigger actions, that lead us to the results they we get. Therefore, the only way to reframe the situation, is by changing the way we think. Instead of thinking it is happening to us, we think it is happening for us. What??? Yep, that’s right, it is happening FOR us! As bad and terrible as it might feel, it is still a gift to us and an opportunity to experience profound personal growth. Here is the thing though, we have to trust the process and really believe that everything is happening for a reason. It is easier to do that when everything is going pretty well in life or even if it is just a bit challenging. It is much harder to stay in that frame of mind when life gets really challenging and our loved ones are suffering. The truth is though, this is when we need to trust the process the most. I have found for myself, that the greatest growth I have experienced always comes after my darkest days, so I no longer make those really challenging times nearly as dramatic as I used to before I became more self-aware. I now know something good is on the way even if it does not feel like it. I want to offer you that you don’t have to get caught up in the drama either if you can reclaim your personal power in the situation. Your personal power does not come from fixing the situation, it comes from accepting that you cannot change it! It comes from understanding that the only thing you can control, is your mind.

This bring us to my next point, and that is we cannot control our parents, siblings, children, friends, or the Universe so just stop trying! Nothing is more exhausting than trying to get somebody else to behave the way we want them to, and they continue to do the opposite. Or when we desperately want something to happen related to the care of our parents, and it does not. If it is not obvious yet, I want to point out that the reason we do not need to be in control is because the Universe knows better than us what is needed, everything is always happening for us, and nothing ever goes wrong. Let's discuss this concept of control a little bit further because this is an area that causes a lot of problems and contention among family members when caring for aging parents.

First and most importantly, our parents get to have autonomy. That means no matter how frustrating it may be, our parents get to make their own decisions regardless of how we feel. The only way they do not get to do that is if they have been deemed incompetent, which is a legal process and not what I am talking about here. I point this out because many of us think we are qualified to make this determination and we are not. It is also quite common for two siblings to have a different opinion on what constitutes competence and whether their parent can make sound decisions.

While it is important to note the legalities, it is also important to recognize that autonomy also extends to their day-to-day decisions in their home. For example, my dad would not use his walker at times no matter how hard I tried to get him to use it. As an OT, this drove me crazy! I was terrified he would fall! I remember getting so frustrated with him and our relationship suffering because I lost sight of my role as a loving daughter and the OT in me was too focused on what I thought he should be doing to stay safe. I remember I would be in the other room just waiting to hear the boom of him falling on the floor. It was soooooo stressful and I was so wound up and terrified that he could really hurt himself and what that would mean. I can recall the night where I could not take the stress anymore after years of him being sick on and off. I was upstairs in bed in my usual state of worry, and I suddenly felt an internal shift within me. I just decided to transition from trying to control and prevent everything, to letting go and being there to pick up the pieces when he needed me instead. It was so liberating and freeing! I no longer had to get angry or frustrated with him when he did not do what I wanted, which is what he really needed from me. I no longer was willing to take responsibility for things outside of my control so my role as a caregiver became less overwhelming and way more manageable. When I was no longer trying to be the perfect caregiver and ensure safety at the expense of everything else, my perception of being a caregiver with my dad blossomed into something totally different and much more pleasant.

I know, at this point many of us might be thinking that because our parents’ behavior will impact us if they fall or do something “stupid” and consequently cannot care for themselves, that they lose that right to autonomy. But that’s where we are getting confused. It is never our job to try to control our parents’ behavior. It is our job to educate them, set some very clear boundaries, and reinforce them consistently when they make the decisions they do. Boundaries are not about controlling other people’s behavior; they are more about controlling our own actions and how we show up when somebody else does something or behaves a certain way. For example, I remember the first time my dad got sick and had to fly into OH to advocate for him and ensure his medical needs were met. I was not the same person then that I am now, so I handled myself quite differently and not very well if I do say so myself. I remember it was time for him to be discharged and he begged me to take him home instead of to the skilled nursing facility (SNF) recommended by the therapists at the hospital. Since I was an OT, knew what he needed, and had absolutely no boundaries around what I was willing to sacrifice and do for my dad, I said okay. It was a nightmare! After three days my back was killing me, I was totally sleep deprived, I was a neurotic mess, and knew I had made a big mistake. Not only did I mess up from my own perspective, I also screwed up getting him into a facility with the assistance of a social worker which makes the process much smoother and less complicated than trying to do it myself. I did eventually figure it out and get him into a facility, but I also set a clear boundary in my mind that if my dad was not totally independent at the time of discharge when he was in and out of the hospital due to his chronic conditions, he had to go to a SNF. Period.

Now I bet you are wondering if and how I reinforced that boundary. Well first of all, yes, I did reinforce that boundary for the rest of his life over and over. I may have made the initial poor decision to take him home that one time, but I l was smart enough to learn from it and it never happened again. Was it easy to reinforce? Absolutely not. I can still vividly recall sitting with him in his room waiting to be discharged from the hospital a few years later. He was sobbing uncontrollably and literally begging me to take him home, so he did not have to go to a skilled nursing facility (SNF) that was recommended by the hospital staff. As painful and difficult as it was, I told him he had to go there because he was too big and tall for anybody in my family to be lifting him and taking care of him by ourselves. He went from begging and crying to yelling, being angry with me, and throwing his walker across the room. While it was quite uncomfortable, very stressful and somewhat heartbreaking, I stuck to my boundary and reinforced it. So even though I established the boundary, my dad still tried to get what he wanted. I just did not make it a problem, I did not judge him for it, I did not get mad back at him, I just said you are going to the SNF and I would be there to support him anyway I can (other than taking him home). Again, boundaries are not about controlling other people’s behavior, they are about deciding in advance how we are going to respond in a specific situation when somebody does something or a situation arises. Boundaries are crucial in any relationships, but especially as a caregiver. Take time to really think about what you are willing to do and keep in mind that you have other obligations and family to care for as well. An unhappy and burnt out caregiver is not good to anybody!

In conclusion, we tend to make our jobs as caregivers harder and more overwhelming than they need to be. If we can reframe our approach to the role and keep several fundamentals in mind, we can reduce our suffering and the suffering of those in our care. First, remember nothing or nobody is permanent. Second, the Universe does not make mistakes, and everything is happening exactly as planned (even if it just feels awful). Third, everything is happening for us, not to us. Lastly, we need to relinquish the illusion of control and instead, set clear boundaries, reinforce them, and do the best we can in our role as a caregiver. Then we have to forgive ourselves when we are less than perfect which will happen frequently because we are humans with a brain. If we can do all that, we will not be adding layers of pain to an already challenging time in our lives. This will benefit us, our families and our parents. Join me in the Brain BS Podcast to discuss this further!