"My story as a caregiver spans almost 4 years. My mother-in-law first told us she had breast cancer in 2010. That was when I discovered this website and the discussion boards. Every step of the way, I was searching the forums for similar stories. We moved from 'Just Diagnosed,' 'Triple Negative,' 'Chemo,' and 'Radiation' boards and then in March of 2013, I was forced to search the 'Recurrence' discussions. It was a chest wall recurrence which was treated with surgery and radiation. She was cleared to go back to work and within two weeks, I was then looking up 'brain metastasis' and 'Stage 4' information. I learned about people's experiences with whole brain radiation, Cyber Knife and unfortunately, hospice in April of 2014. It was 6 months and 5 days from the time of the brain metastasis to her passing. She has since been gone 6 months. What a whirlwind that still, at times, does not seem real.
"I can't say that I was the primary caregiver by any stretch of the imagination. My father-in-law was amazing. I tried to help with the cooking and also helping to interpret medical information that they were given. Also, my sister-in-law and I put together care baskets when she would go to chemo and we got our children to write little notes to her that she could open up each day that she was home and suffering from the chemo side effects.
"After the brain metastasis, our caregiving roles were advanced. She experienced a seizure and was hospitalized for a few days. My sister-in-law had heard about the website called mealTrain.com, so we started that for our in-laws. That went on about a month after she came home. Different people -- friends, family, and coworkers would sign up to take a meal. Also at that time, she was no longer able to stay by herself just in case of another seizure. So I started a Google calendar and friends and family would sign up to stay with her on days that my father-in-law worked. He was trying to make it to June to retire.
"Luckily, she never lost her personality or memory. She was completely 'with it' to the end. We did have to help her more and more with things, but we were mainly there for company. I know I really enjoyed those days that I was there with her. I signed up for as many as I could and my employer was very understanding. We were all involved more with taking her to different appointments. She had to have fluid drained several times before a tube was put in permanently.
"Her condition worsened and after hospice came in, my father-in-law decided to retire early. We had really stepped up the caregiving that last week because hospice taught us how to drain the tube at home.
"As I had said in an earlier post called 'Advice....looking back,' the most important thing I could advise is to just love them. I greatly appreciated all the support and information I got off this board, but I had to realize that I couldn't save her. I couldn't find out how much time she had left. I had no control over anything but my presence and my love for her. I have no regrets...except for if I knew that was her last day, I would have stayed longer that day. But I did tell her I loved her that day as I set off to run some errands for her. I do wish we would have talked about things more, as far as about this time now that we are without her. I wish I would have gotten some things down on paper for my kids. I wish I would've asked her what she wanted done about things. But, I can't count those as regrets because at the time, it's so sad, no one wants to bring that up. I don't know that I would have actually done that differently given the chance.
"So, in summary, if you are a caregiver and are reading this, just enjoy every minute you have with your loved one. None of us are promised tomorrow anyway. I wish you the best of luck and would love to talk to anyone that needs to talk!"
--whisper2, Caregiver to her mother-in-law