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Switching Roles: caregiving for a parent

Caregiving for my mom

It is strange to think that one day you will need to look after the people that served as your main caregivers, among countless other things, for a good part of your early life. If you are lucky, this strange happening will not come along until your mom and/or dad are well into their late years and need assistance due to old age. Sadly, for some of us, we will have to encounter this journey earlier on, due to the dreadful news that one of our loved ones has been diagnosed with a serious chronic or terminal condition. 

Everyone who goes through this journey will have a different experience with it, depending on what stage in their life they will have to settle down and assume the responsibility of caregiver.

My story

I was a 21 year old, 2nd-year university student when I first got the call from my dad telling me that my mom had been diagnosed with Glioblastoma multiforme, the most common and most aggressive type of brain tumor, a terminal type of cancer. When I first heard the news it all felt unreal, I thought that things like this only happened in movies or that they were not supposed to happen this early on in life, I was supposed to take care of my parents way down the road. As dreamlike as it all felt, I had to settle down and take a big role as a caregiver in my mom’s life.

Let me tell you, the adaption of becoming a caregiver for one of your parents can be strange at times but is overall, a beautiful experience.

I know that there is no specific, one size fits all guidebook, to guide you down the road you are going down or will have to go down one day, due to a million different factors and variables that will make our caregiver experiences unique. With that being said, I would like to share some advice and information with you that I think will assist you in your new caregiving role, especially if you are caring for one of your parents.
My mom and I before her diagnosis.

What to expect

Your time to settle down and assume the responsibility of caregiver for your mom and/or dad has come and if you’re like me you want to prepare and you want to know what to expect; I mean that’s probably why you’re reading this blog in the first place.

The first thing that you should expect is the preparation itself for the long run. An intriguing habit that most caregivers have, is the habit of becoming an expert on the specific disease that their loved one is diagnosed with, sometimes you might even feel like you know more than the doctors themselves. This occurrence happens due to several different factors such as information that you will receive from different health providers, peer groups, and networks, as well as your own individual research.

Next on the things to expect is the gradual change in the atmosphere between you and your parent’s relationship. Along with spending more time with your mom and/or dad, you will become closer to them, and even though this can lead to the occasional disagreement, overall, you will feel like you regained your childhood best friend and that’s a pretty cool thing to experience. It is important to also point out that even though you and your loved one will become closer; it will be hard at times to lay down some sort of discipline on what they should and should not be doing. This is because even though they are older than us, most of them still have that childish and rebellious attribute at heart, much like we did when they were the ones looking out for us.

Lastly, you should expect the need to compromise due to your new role. What do I mean by this? You will need to compromise your lifestyle due to your new responsibilities. For me, I had to compromise my school and social life so that I could stay home as much as possible while my dad worked. I did this by studying from home instead of going out to the library and by having friends over to hang out with my mom and I instead of going out on the weekends. We all live different lifestyles, filled with different hobbies and responsibilities, so we will have to compromise in different ways.

5 things to remember

I would say that your mindset needs time to adjust to the new environment that you now live in, and while that happens you might forget a few things from time to time, things that will keep you afloat. Here are five things that will keep you charging forward through your journey.

  • First, remember that you are the caregiver. As dumb as it might sound, it can be easy to forget it at times since it will be your mom and/or dad that you will be looking after; the two people who looked after you in your early life and shaped you into the person that you are today. This might be subjective as I was, and still am, relatively young, but I remember driving my mom to appointments and doctors asking me questions about her medical health (her routines, medicine, supplements, past appointments with other doctors, and so on) and I would just stare at her waiting for her to respond, forgetting that I was holding a massive binder with all the answers to the questions being asked. I was the one responsible for answering the questions in place, this made for a few long awkward minutes of silence at appointments; luckily my mom would break the silence with a witty and yet polite remark for me to answer the question. From time to time I would honestly forget that I was the caregiver in the room, but luckily after the first month, it clicked in.
  • Do not forget that you are not on this journey alone. It feels selfish saying this, but there are going to be days when you forget that you are not going through this process by yourself. With all the constant bombarding of information, appointments, and late nights catching up on work and other responsibilities, you will feel the stress creep up on you. When times get hard, and trust me they will, it is vital to remember that your mom and/or dad, whoever your looking after is on the same journey, they are and will be with you until the end of your caregiver journey. The things that you might be stressing out about, they will most likely be experiencing themselves, always remember that you have someone to talk to.
  • Remember that your mom and/or dad took on the role of being caregivers for a big part of their lives, just for you. You might be thinking, “why would I need to remember this?” - the answer to your question is simple, you need to remember this in case somedays you feel like you have no energy to take on your role as a caregiver. It is hard to believe that some days you will feel like you don’t have enough energy to care for some of the people that you love the most in this world, but I assure you, these days will come. I found that this simple fact gave me the extra energy that I needed some days to keep on going. I remember days when I would have to wake up and help my mom out with her daily routine of home physio exercises, and I would be drained from all my energy due to how busy my life was at the moment, but reminding myself that my mom woke up early every day for nearly a decade just to help me get ready for school, really gave me the extra energy boost I needed, and of course, some caffeine helped out the situation as well.
  • Do yourself a favor and remember to enjoy this journey as much as possible. The change in roles from a son or daughter to a caregiver for one of your parents will be awkward at times and it will be an event that nobody wants to be a part of. Still, what most people don’t realize is that the extra time that you now spend with your mom and/or dad has the potential to be one of the best memories that you will make with them. I could honestly not tell you how lucky I felt when I realized that I might as well enjoy the whole situation as much as possible, with its limitations of course, instead of consciously dwelling on the negative situation. As soon as I came to this epiphany, not only did my behavior change, but so did my family’s and a whole new wave of positive attitude came about our whole situation. It was almost as if my change in outlook caused a domino effect in my household.
  • Lastly, never forget how grateful and thankful your mom and/or dad are to have someone like you, hopefully their favorite child, look after them. Lucky for me, I am my mom’s only child, so I am almost certain that I was her favorite, but more importantly she was very vocal about her gratitude towards my dad and I for taking on the roles of her caregiver. Now, why is this so important? We don’t take care of our parents looking for some sort of gratification from them, we do it out of pure love. This is important to remember because with how stressful things can get, they might forget to let you know how much they appreciate everything that you are doing for them, and knowing that you are truly making a difference in their quality of life, is one of the best rewards when caregiving for mom and/or dad.

The next step

Hopefully, you landed on this blog post because you are trying to find out more information about what is to come, or more information about what you are currently going through. So what do you do next? How do you better prepare yourself to be equipped with the knowledge and tools to really make the best out of everything that is going on?

A good way to achieve your goal is to reach out to the care community, you will be surprised to see how many people are going through a similar situation right now, and as I mentioned before, the whole situation feels dreamlike and can feel like you are alone at times. By reaching out to the community and talking to people going through a similar situation, you will find some sense of support and unity all while simultaneously equipping yourself with the know-how tools on how to be the best caregiver that you can be for your mom and/or dad.

Lastly, it is also critical to point out that it is nearly impossible to fully prepare for what is to come, and sometimes the best way to be equipped is to learn from the moment as you go through your journey.

The conclusion

As strange and confusing as it feels to take on the role of caregiver for the people that took care of you for a significant part of your life, it can be a beautiful and memorable experience. As long as you adapt and remember a couple of things, you will be ok! Take it from someone whose most stressful experience up to that point in life was wrecking their car because they crashed it into a still object (a curb) in an empty parking lot.

I hope that my story resonates with you and that you find some use to the points that I highlighted. Like I mentioned throughout this post, I know that all our journeys are going to be unique, but there are a couple of general things that will ease the process.

Remember you will ok

“The simple act of caring is HEROIC”

- Edward Albert, actor