Caregiver testimonies
Caregiving is a journey that demands self-sacrifice, unwavering compassion, and remarkable resilience. There are times when you may feel overwhelmed and powerless, as if there's nothing you can do to alleviate your loved one struggles. Please know that you are doing everything within your power. Whether it's brewing them a cup of coffee, embracing them with warm hugs, providing solace and laughter, preparing nourishing meals, sending thoughtful messages, or accompanying them to countless appointments, every act of kindness and care you bestow upon them means the world. Your love and support are cherished more than words can convey. Thank you for your unwavering commitment to caregiving. Your love, compassion, and strength truly make a difference in the lives of individuals suffering from spinal CSF leak.
What are some of the significant challenges you have faced as a caregiver for someone with spinal CSF leak?
Caring for our daughter who is suffering from spinal CSF leak is the hardest thing I have ever done. I cannot take her place so that she doesn’t have to experience constant, and repeated horrible pain. I cannot take her place so that she can return to the pitch and play the sport she loves so deeply. I cannot take her place so she can thrive in school and make plans to travel and see the world. My only power is to give her the best care I can, advocate for her, and focus on the things she can do, making those things as positive and enjoyable as possible.
One of the challenges is the unknown. At first we thought we would find the leak, fix it, and return to ‘normal’. My daughter’s journey has had curveballs that brought us back to the starting line, just when we thought we finished the marathon. And so, we lace the shoes back up and begin to pace ourselves again. It can be so hard, and with that, I struggle with self-care. It’s an important aspect of caregiving, so I do take steps to work at better self-care. The support from the leak community has also had a very positive impact.
How caring for someone with spinal CSF leak changed your perspective on life?
Caring for someone with a spinal CSF leak has changed our family. We rely on each other even more, to help one another and support each other through daily tasks and extra stresses. Our time together as a family has always been special, however this condition has made us appreciate it even more.
Wish list as a caregiver for spinal CSF leak patient:
My wish list for a spinal CSF leak patient is quick access to a CSF Leak Centre in Canada that has current and emerging technologies and imaging, and a team of leak specialists working in concert to provide world-class patient care.
I also wish for greater awareness across the medical community. It would be wonderful for every medical professional who provides care and service to a leak patient has some foundational knowledge of the condition so they can provide efficient and supportive care.
- Amy
“The most significant challenges as a caregiver for my daughter has been watching the relentless never-ending suffering my daughter has endured and feeling so helpless. Everyday I wish I could take her pain away so I could watch her become the woman she never got to become. Searching for specialists, battling misdiagnosis, sitting outside of operating rooms praying for her to wake up symptom free are my memories of what we endured.
Being a caregiver has changed who I am to the core. It has taught me strength and perseverance. I appreciate the small things and grasp onto the moments we have where we get to laugh and smile with each other.
My biggest wish would be that medical science would evolve and my daughter could finally have a chance to live.”
Love,
A CSF Leak MOM
“I don’t think of myself as a caregiver, I’m simply a wife and a life partner. As such, it’s been heartbreaking for me to witness an independent and capable man become so debilitated and dependent. I told my husband, “as long as you continue to fight, I will be there”. Some say I have a choice, but when you see someone you love suffering, there really is no choice. Their pain becomes your pain and their loss is your loss too. Our lives are intertwined no matter what. And so when I hear my grandson say “when grandad gets better...” there is nothing else I can do but hold onto that hope, be there, and fight alongside.”
_ Anne
“I have been a caregiver to my wife for ten years now. Though not to same extent or magnitude that her life has changed, mine is very different now as well. On that point, I find it very difficult to voice the challenges I face as her caregiver. After all, this whole thing isn't about me. There's nothing wrong with me. I am the pusher of the chair, the cook, the arm to hold and the driver. I am ears to listen. And a shoulder, not often enough.
This is a marathon. Physically I am able but the toll mentally has been difficult. The changes to my role over these years, adapting to new realities, these have been hard adjustments.
So for my own preservation and that of our relationship, I created distance. Space for me to cushion our relationship so I can function for us. Too close and I am depressed from the constant sorrow and pain and unrelenting hardship that I witness daily. That has been my greatest struggle. And too distant from her and I am not there to listen or understand or be a shoulder. This has required fine tuning and effort to maintain this balance. But as long as there are doors that open for treatment options, we have the strength and will to go through them.
It has been this way for ten years. But through all this struggle it is her strength that pulls me along into the fight. And one day, it will be her optimism and dogged persistence that will get us to where we can go for a long walk, side by side, or where I can have a nap as we drive through the mountains. Or she can just stand up long without needing a wall. Until then I'll be her caregiver.”
_ Wade
We invite you to share your personal caregiving stories with us. We want to hear about the joys, challenges, insights gained and even your wish list as a caregiver for a spinal CSF leak patient. By sharing your experiences, you have the power to support and inspire fellow caregivers while creating a greater understanding within our larger communities. We believe that your narratives can provide valuable insights, practical tips, and emotional support to others in similar situations.