The following are questions I answered for “Riding Bitch” on her blog last week. Thought they were great questions so I am including them here.
Q: Have you had any previous experience with caregiving before your husband was diagnosed?
A: Yes. My mother was sick in 2007. She was finally diagnosed with colon cancer and died three weeks later. I consider that my biggest learning curve (not that you ever stop learning). I spoke up when I was concerned or things didn’t seem right. But the doctors and nurses always seemed to have an explanation for things. I tried to be very rational and told myself that I may have a good head on my shoulders, but I was no doctor. I had to trust the medical professionals and what they were saying. This was one situation where I followed my head before my heart.
Unfortunately, I found out later that things were not as they should have been. There were many doctors and nurses at the hospital that were just plain wrong. They did not understand my mom’s condition. She was not taken care of the way she should have been. We even caught one doctor in an outright lie. As a result, my mother suffered tremendously at the end of her life. It was unnecessary. This experience changed everything for me- how I viewed the medical world, how I act as an advocate for myself and others, and even how I counsel clients.
Now I say without a doubt to trust your instincts. If things don’t seem right, they probably aren’t. If you aren’t satisfied with the answers you hear, ask again. Ask many people. Ask until you get what you need. Your life may literally depend upon it. I’m not suggesting you be cynical and assume everyone is incompetent. But it means to be careful and pay close attention.
Q: Are there specific things you learned?
A: Yes! In general, I would do these things anyway, but they are an absolute must if you are dealing with any kind of chronic medical problem. Get a notebook. Take it with you to every single appointment. Write everything down. Most importantly, let the medical professionals see you do it. Take their name and their title. Write dates and times. Even when they just check your vitals or something. I have found that those professionals who are conscientious about their work and do it well will not be threatened by this. In fact, often they encourage you to do so. We are all human and medical professionals are too. We all work better and more carefully when we know we are being held accountable. My book is full of these kinds of situations. In my second book, I will probably talk about a situation with my father when I accompanied him to the hospital. They wanted to repeat a blood test because they didn’t believe someone had already done it. I was assertive enough that I wouldn’t let them touch my dad until they double checked their records. I was right and they apologized. Not life threatening, but a good lesson in paying attention to the details.
Q: What was your experience of caregiving for your husband like?
A: Sometimes it was downright frightening. I had to respect his wishes as it was his life. But when do you intervene? When do you take over? In the book I talk about a time when Tim was in great pain but didn’t want me to call the doctor. I was not confident and most of the time I didn’t even have a knowledge base to start with. So you had to arm yourself with facts, then decipher through your individual circumstances. Scary. It’s too much. But I did it because I loved him. It was truly, truly a sacred honor. I’ve never done anything more important!
Look for next week’s blog. “Riding Bitch” will be answering similar questions here as a guest on my site…