A Caregiver's Perspective
As National Family Caregivers Month comes to a close, we wanted to share with you a personal and in-depth interview of the caregiving journey of one of our patient advocates, Linda Power Holden. By sharing her stories, we hope to continue spread recognition of how crucial caregivers and care partners are in their loved one’s lives.
What’s the biggest challenge you’re currently facing as a care partner?
The challenges of being a caregiver change day-to-day. Right now my biggest challenge as a caregiver is loneliness. Since Bob was diagnosed with advanced breast cancer he suffers from fatigue, nausea/vomiting, pain from neuropathy and his bones. He is on pain meds 24/7 and sometimes he sleeps for days. I stay close to home to make sure if he needs anything I will be here. It is hard to plan to get together with friends and doing things like going out to eat, a movie or just talking.
Because I never know what the day will be like. Talking to Bob is hard as well. Bob suffers from short term memory loss and cognitive issues. Just having a conversation sometimes is challenging. He won’t remember what we were talking about or he’ll forget what he was going to ask me, or he doesn’t remember. It is lonely and frustrating when trying to have quality time with my husband.
What’s the one thing you want other people to know about being an advanced breast cancer care partner?
The one thing I want people to know that being a caregiver for someone with advanced breast cancer is: it never ends. Living with advanced breast cancer you have been given a diagnosis that there is no cure for.
It isn’t just one treatment plan and then you’re hopefully done. It is treatment, appointments, scans, medications, another treatment, anxiety, and fears of your future. I want people to know that these patients are living with advanced breast cancer every day.
How do you keep communication open/active with your caregiver?
Bob and I discuss everything about his care. Because he has cognitive and memory issues from his treatments, I go to every appointment with him. This helps me be the best caregiver I can be.
I feel like I am hands-on and involved with any discussions pertaining to his disease. The decisions are ultimately Bob’s, but I can help him to understand what choices he has and then he can make a decision.
Have you gotten a second (or third) opinion after your breast cancer diagnosis?