3 Rules for Caregiving…
This piece was written for the Georgia Caregiver Alliance.
On November 26th my mom passed away from a pretty rare form of cancer. It sucked. I have a lot to say about that, but that’s another blog for another day.
Today, I want to try and help families out there that may be going through some terminal diagnosis of their own. Below is a list of three rules that our family came up with that helped guide our minds, hearts, and conversations concerning the cancer diagnosis. It helped us, I hope it helps you.
- Be where your feet be.
This one was hard. When my mom received her diagnosis she was given 6 months to live. We were heartbroken. Our minds began to race and often they raced to the end. We kept replaying over and over what life would be like without her, and it sucked. But here’s the deal, we still had her. She was still there with us.
We decided very early to really stay focused (as much as possible) on the here and now -to be where our feet be. We made the choice to live in the present, to not get focused on what was coming but instead we tried our best to celebrate the moments we had with her.
Looking back, those last months were something I will always cherish. We laughed, we created memories, we told stories, we lived. So then, I know it’s hard, but try your best to be where your feet be. Be present.
2. Be you.
One of the mantras we often heard was, “You have to be strong” or “Don’t let her see you cry.” I get where that’s coming from, but I’m not sure it’s the best thing. There is a time and a place to be strong. But sometimes what families need most is vulnerability and honesty.
I believe, when someone close to you is nearing the end of their life, there is no better time to let your yes be yes and your no be no. Striving to be honest and vulnerable with your loved one may result in some really deep and fruitful conversations that you wouldn’t have had otherwise. It’s ok to be you…the real you…not the you that everyone is trying to get you to be.
3. Fight for their dignity.
If you only get one thing from this blog, I hope it’s this one. Please, please, please, fight for their dignity. Dignity means different things for different people — don’t assume, ask. Don’t just ask once-ask early and ask often.
It’s never too early to begin having conversations about final wishes. It may be difficult and awkward but there are resources to help. One great resource is the theconversationproject.org. They have a ton of great articles, conversation starters, and videos about this whole thing.
In short, think about things like power of attorney, living wills, funeral arrangements, where they want to be when they pass, who do they want around them in those final days, what type of care do they want or don’t want etc…
These conversations will prepare you for the tough challenging journey of watching a loved one die.
I’m so glad we had these conversations. I remember sitting in the hospital talking to the doctor about how the second attempt at chemo didn’t work for my mom. They wanted to admit her to the hospital and continue her on this cycle of pumping her with fluids then draining her. Because we had conversations with her early and often, I knew that’s not what she wanted. Those conversations empowered me to fight for her dignity.
Fighting for dignity is sometimes about reshaping the “win”. At that moment our “win” was no longer beating cancer; our “win” became figuring out how get her the highest quality of life possible considering the circumstances. We knew that being stuck in the hospital was not that.
I brought up the idea of in-home hospice and the medical team’s cadence changed. It’s almost as if they were almost relieved because they didn’t know how to have the conversation with us.
She went home and spent her last days with us in her favorite environment.
Listen, you have to fight for your loved one’s dignity. No one else is going to do that. It’s up to you. Remember when I said, “There is a time to be strong.” Well, that’s it.
I hope our experience helps your experience just a little more.
If you have any questions about any of this, I’d love to talk with you. Shoot me a message.
