Finding the person beyond the disease
Anonymous, age: 66
Who do you take care of? For how long?
My mother. The caregiving journey began approximately 7 years ago. While there were signs preceding that time, full independence still persisted.
Tell me a little bit about yourself: how your days unfold, how care work coincides with your other life activities such as work, family and your passions?
Taking on caregiving responsibilities for my mom has gradually become a part of my life. While I technically fit the definition of a caregiver, I don’t necessarily feel like one. In comparison to the care we provide at home for our son, my role is much less intensive. I’ve been able to clearly delineate my boundaries in this regard. Primarily, I handle practical matters, and I continue to do so.
Currently, I’m retired, which allows for a bit more flexibility in social activities. We’ve already experienced the challenges that come with juggling work, where boundaries are harder to set, and fully engaging in family life. I’m trying to make time for further personal growth and development. For instance, I’ve taken up playing the saxophone again.
What are the main difficulties you encounter?
Initially, the uncertainty surrounding my mom’s condition caused some tension. There were pivotal moments where difficult decisions had to be made, like the difficult decision to transition to a nursing home.
Sometimes, cooperation with other family members hasn’t always been smooth sailing due to differing attitudes and life perspectives. For instance, my sister might suddenly text me about a problem arising, whereas I tend to quickly assess and think of solutions, see the possibilities, not only the problem.
When I’m with my mom, I try to distract her and create enjoyable moments instead of focusing on the challenges of disorientation. Humor can go a long way in these situations.
How do you try to deal with them?
Despite setbacks that are inherent to life, I strive to maintain an optimistic outlook and to be grateful for the beautiful aspects of our lives. I endeavor to cultivate this mindset and inspire others through giving lectures.
Do you feel discriminated against or prejudiced as a carer?
Yes, sometimes.
If so, how do they make you feel?
You can sense that sometimes people don’t invite you because of the situation. It’s when you truly get to know your real friends. Now that we’re retired, it’s easier because we can divide our time more effectively.
There’s also occasional misunderstanding, as people don’t fully grasp what it entails: the shifting roles, the extra tasks on top of daily obligations, and so forth.
Is there anything you would like people who are not caregivers to know?
I hope they never have to fully understand what it means to be a caregiver. You simply can’t comprehend it unless you’re in that position, and at that moment, you must learn to cope and allow yourself to seek and accept support where necessary. Sometimes, people feel obligated to take on caregiving responsibilities due to their relationship with the individual or because of external pressures they feel. It’s important to understand that there’s nothing wrong with setting your own boundaries and seeking help when needed.