An Open Letter to Caregivers
I was diagnosed with stage IV lung cancer back in October 2012. While I am feeling quite well most of the time now, we went through a period of time when it was far more touch and go. I thought it might be helpful for you to hear from me, as a patient.
In lots of ways, I doubt my husband and I have experienced the same frustrations as many of you have. I have been mostly healthy, despite my dire diagnosis. So, I may not answer many of your questions with this missive, but I hope I address at least a few.
What you are going through is hard
First of all, in my opinion, what you are going through as the caregiver is far more difficult than what I am facing. You have to worry about taking the best care possible of your loved one, which very often leads to extreme exhaustion. You are most likely more concerned about your loved one with cancer than you are about yourself. That’s dangerous.
Please, take care of yourself. It is vitally important that you don’t get sick. Exhaustion, stress, fear - these emotions can take a real toll on your health.
Please take care of yourself
It won’t hurt your loved one for you to go to a movie or out to eat with friends. You need to be able to just get away from cancer for a little while. I guess some patients might resent you taking time away from them, but most would encourage it, especially if they are feeling well enough to be alone. Or, do what some others I have read about do - get an aide or friend or family member to come sit with your patient for a few hours or even for a weekend away.
Our lives have changed in unexpected ways
The one thing I read about most is the guilt faced by caregivers. You feel guilty that you have to go to work, that you worry about what life is going to be like if your loved one dies, how you are going to survive financially. My friend, these are very legitimate concerns and you would not be normal if you didn’t worry about them. Feeling guilty for thinking about them just adds to your burden.
Speaking of guilt, don’t feel guilty for sometimes resenting your loved one either. In the end, it isn’t them that you are resenting, it is this stupid disease that has changed your lives in ways no one ever expected.
If you’ve been caregiving for a long time, you could be getting caregiver fatigue. It might seem like it will never end. Of course, you feel guilty for daring to think that way, but once more, you are human and those are human emotions!
You don't always need to 'put on a happy face'
I read some wise advice recently. A person who had cared for her mom while she fought cancer advised caregivers to quit always trying to put on a happy face when around your loved one who is sick. She said that it did both she and her mom a world of good to bring that shadow that was lurking in the room to light and to just openly discuss one another’s worries, fears, and pains. It is okay to cry together!
Too often, the job you do is thankless, I am afraid. So, let me just close by sending a heartfelt cyber hug and saying a big thanks to you for everything you do. You are so appreciated.
A cancer patient
Where have you found the most support during your lung cancer journey?