Becoming a caregiver for aging parents is a profound shift, one that affects nearly every aspect of your life. It can feel overwhelming, isolating, and at times, emotionally exhausting. Yet, it is also a role that could provide a unique sense of purpose and connection. Managing life as a caregiver is not just about balancing responsibilities but also about finding ways to sustain your emotional well-being and sense of self.
In the case of parents with dementia, one of the first things that becomes clear is how the roles reverse. Suddenly, you are the decision-maker, the advocate, the person who must protect, guide, and often sacrifice for someone who once did the same for you. It can be a disorienting transition, as we assume the role of ‘parent’ to our parent. In my experience, it was not linear, not smooth and not exactly clear-cut. For me, the transition, such as it was, was fraught with heightened emotions and confusion. My parents were my Northstar. They represented in more ways than one - Home; they were a telephone call away and I knew I could always rely on their steadiness, their strength, their counsel, and then one day, the certainty of that was gone. There was no scenario of my parents’ twilight years where I imagined what became the reality. And it was not an easy road.
One day, it was all systems normal, and the next, I was plunged into what felt like a nightmare, except I was wide awake. I was holding their hands as they, we, faced this unknown; witnessing their confusion, their anger, their helplessness; holding space for them, while dealing with my own emotional turmoil; managing files, medical histories, doctor visits, caregivers, medications and other medical supplies - having to know what worked, what did not. Specifically, as it related to medications, the side effects and the interactions with other drugs or supplements there were taking. This sometimes required making decisions about what to drop because it caused problems with something else, and then accepting that I would have to deal with the consequences because, in the grand scheme of things, it was the lesser of two evils. In addition, there was the sourcing of medical supplies, in particular those that could only be sourced overseas; managing and controlling its supply and inventory; being clear for communication purposes with my siblings, other friends and family members, especially those who lived abroad; handling the finances; all while supervising two houses, and all that entailed. You will note, at this point, I have not even mentioned one single thing about my own life.
I cannot begin to tell you how many times someone said to me:
“You cannot pour from an empty cup.”
Or “You have to put on your oxygen mask first.”
Or “Remember to take care of you.”
My response: “Okay. I will. Thank you!”
They were correct. It is good advice. However, in my experience, this was easier said than done, especially if you are the sole or primary caregiver. First, you are flailing…all the time. Secondly, there are a lot of balls….even with a team…there were a lot of balls. I did the best I could in the circumstances, but I was always on call. A good night’s rest became a memory. What was that? I mean, I slept, but not very well….I was always on call. The phone rang all the time, whether it was a parent or one of the nurses. Everything, it seemed, was an emergency, even with systems in place, or a situation only you could handle, and this was especially where the PLWD was particularly difficult, only responded to you, and had to wear a medical device, the removal and application of which, came with it’s own challenges.
But lets say I did manage to remove myself from the situation, and went somewhere ‘to fill my cup’, in my experience, on the back end of the ‘cup-filling’ there was some drama. Don’t get me wrong, I am very grateful I did as the filled cup was immediately required. In the very beginning of this journey, I was actually curious and tested how far I could go before the phone rang. I called it the length of my leash experiment. That time, I managed to get about 45 minutes out of town. On two occasions, I got as far as Negril, which is roughly a 3½ hour drive and approximately 216km from Kingston. The phone still rang. I even made it to Dubai, and still… the phone rang. And on every single one of those occasions, a parent ended up in the hospital. I am being dramatic…self care is important. And I managed to carve out times with friends or at a cafe to ‘breathe’.
I asked Chat GPT to weigh in:
Self-care in caregiving is a necessity, though it often feels impossible. The guilt of taking time for yourself can weigh heavily, but without it, burnout is inevitable. Establishing boundaries, even small ones, can make a huge difference. Taking 10 minutes to meditate, going for a walk, or simply sitting with a cup of tea in silence helps recharge your energy. It’s important to remind yourself that caring for your own mental and physical health allows you to be a better caregiver. You cannot pour from an empty cup.
The saying is life never gives you more than you can handle. And since I am here to tell the tale, I guess that’s true. Somehow, I had the mental capacity to deal with it all. I am not saying I did not want to scream. I am not saying I did not go for drives in the car and do just that. I am not saying I did not cry. It was heartbreaking and it was emotionally draining. Every single day was a heartbreak as you watched the disease claim the life force and vitality of my parents. The first times stick. I remember the first time, I observed the confusion and the look of helplessness of their face. And I also remember the first time I was on the receiving end of the dealing with a persona that bore no resemblance, but for the physical, to the person I knew as my parent. I remember the first time there were conversations with people I could not see. I have entertained people I cannot see and followed a bus I could not see. I consistently met them where they were…in their individual present moment, and created memories for all of us from those moments. I do not know how I did or where I found the strength, instinct or emotional capacity, but somehow I did. I found the calm to juggle it all and remain sane and standing.
The days are long. It’s called the 36 hour day for good reason, because it feels longer than 24 hours, and there is a lot crammed into any given day. The 36 Hour Day is the name of the book that was recommended to us. I remember thinking at the time what a name, but I completely get it after having lived it for several years. The name is apt. There are not enough hours in the day.
You may feel unprepared for the medical, financial, and emotional demands that caregiving requires. But over time, you adapt. You learn that flexibility is key. No two days are the same, and learning to flow with the unpredictability of dementia can bring some degree of peace.
It is not an easy road and it is a one way journey. I called it the long goodbye, because as the disease progressed, it felt like you were in a continuous state of saying goodbye to one version of your parents, as they ‘evolved’ on their journey to the next. And I grieved every single day.
Seeking support is another critical element. For me, the feeling of isolation crept in early, as there was no ready avenue of resources in Jamaica. And that presented a challenge. But together with my siblings, we did manage to create a village of support, of friends and resources, that became a lifeline. It is my experience and opinion, that sharing our stories and advice will help with one feel less isolated, and sometimes, all you need is to talk to someone who truly understands the complexities of caregiving.
Lastly, there’s the matter of accepting the emotional roller-coaster. There are days of grief, anger, and frustration, but also moments of joy, connection, and gratitude. The journey of caregiving isn’t just about tending to the needs of another person; it’s about personal growth, patience, and learning to navigate the emotions that come with seeing a loved one change. For me, even with hindsight, I wouldn’t have done it any other way. There are things I would have handled differently, but ultimately, care-giving taught me to embrace both the challenges and unexpected beauty of the experience. Emotional strength is required, along with giving yourself grace—something I’m still working on.
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