Today I was struck with an overwhelming urge to write about an unsung group of heroes. This group of people are seen but never heard and not because nobody is listening but more because they will never discuss it. These are sad stories, stories of unconditional love and extreme loss, stories of hopelessness and hopefulness all in the same breath. These stories are uncomfortable and hard to comprehend. But I feel they need to be told to help people understand as well as prepare those who may encounter the same situation in the future.
Being a long-term caregiver, particularly to those terminally ill or with a severely debilitating disease, puts significant strain on a person mentally, physically, and emotionally. This may seem obvious when I say the words, but the impact is far greater when you live it. Taking care of someone day in and day out, someone you would gladly change places with just so they can live. To go to work and worry when you are not there; making sure they have everything they need from feedings, medications, movement to keep the muscles and bones strong, bathing, mental and emotional support. Its coming home and being with them knowing the days are limited and always wondering if this day is the last. Its keeping a positive attitude so the loved one will keep fighting when they are just dying inside with sadness. The always anticipating the next shoe to drop and being prepared when it does.
They never take a break or ask for help. They are proud and grateful to care for the person they love and feel regret or guilt when they take time for themselves. These people are completely selfless.
These are the people who can’t sleep at night and cry in the bathroom but maintain a smile and a rock solid stable demeaner in public. They are lonely and forgotten. Don’t get me wrong, nobody intends on leaving them alone and have good intentions in mind. We say things like:
- “I don’t want to get in the way.”
- “I want to give them their privacy.”
- “They have a lot going on and I don’t want to bother them.”
- “Let’s give them some space.”
While the focus is on the dying and that is where it should be…spending as much time and living every second to the fullest, we need to remember these caregivers who are sacrificing everything for them as well. A part of them is dying too and we need to recognize this situation or event will impact them eternally.
I also want to call out a special acknowledgement to those caregivers who also work in the healthcare field. I feel this is particularly hard for you. Because you KNOW the signs when someone is declining. You understand the medical jargon and the reports. You know the signs of decline but still push forward with optimism and hope because you know people fight harder and longer when there is hope. You see when the treatments are no longer working, and you gladly hold their hand in the end and say “we will be ok” giving them permission to move on. You go from being the source of hope to the patient and the family in the hospital bed to being the family on the other side recognizing the “look” in the eyes of your colleagues.
Then it all just ends…
Your mission as a caregiver starts and can last weeks, months, and sometimes years. Your sole purpose starting with fighting, then surviving, to finally accepting and relishing those last few days. Your life being centered around this one person who is no longer here. You still wake up every day going down your routine prepping for the day and care that is no longer needed because they are gone. Then what next…
Having to go into to work, the hospital where your loved one stayed so many times while they were sick, and all you can see are those moments. Every patient represents that loved one. It is a perspective we all get and it so very hard to bear. Now it’s time to live for yourself in this new world with a new perspective on life and how to live it. This, of course, is so much easier said than done.
When I write, I usually like to stay positive with signs of hope but felt this was a message that needed to be heard. This is a true story of resilience and overcoming obstacles. These stories are those of unconditional love. I wanted to bring these unsung heroes out in the open because they will never speak of it themselves. In truth, it never comes up until it is all over and by then, its done. If you know someone who is caring for a loved one, please give them a hug and support them. They really do need it and will never ask. Truthfully, they may not even want a hug because it will break the stone barrier and they want to stay strong.
I want to bring these stories to life, so people understand and don’t forget to care for the caregiver. I have been inspired recently by a family member who just went through this to write a book about these awe-inspiring strong individuals and their stories from their perspective. I want to acknowledge their courage and strength so we can all learn from them to live in the moment and don’t take anything for granted because time is limited.
So now I ask, I would love to share your story in my book. True stories will share a perspective other’s have never seen. If you would like to share your story, I would love to hear it. Please email me at firstname.lastname@example.org. I know these stories are personal and private so all names will be kept anonymous or de-identified.
My heart, thoughts, and prayers go out to all those who have lost or currently caring for a loved one. You are amazing, strong, and courageous.