Knowledge is knowing what we do not know. ~ Ralph Waldo Emerson
As we move into the second week of TLO’s palliative radiation treatments, we experienced a few challenges over this past weekend that needed the attention of the hospice nurse. I knew it was just a matter of time before we would enlist their services, it is comforting to know that our ‘friends’ at Hospice of Broward County are just a phone call away.
One of the most important components to being a family caregiver is to know your strengths, and to know your weaknesses. While I know I have a Ph.D. in TLO, I am also aware of my (many) limitations. I’m not a pharmacist, doctor or nurse. Remember: Knowledge is knowing what we do not know. My strength in caregiving is advocacy. Advocacy is without a doubt the most, if not the most important role, of a family caregiver. My Ph.D. in TLO comes in handy when it is time to advocate. We will get to that in just a few!
When a new problem arises, there is no time to guess, wonder out loud, talk about it…it’s time to act. Rather, it is time to advocate! TLO had started to show signs of edema is his feet and ankles on Thursday. Aware that he has congestive heart failure to go along with his myriad health calamities, the extreme edema was something new to his health care puzzle. While I ‘knew’ an additional dose of furosimde would probably be the solution, (as well as elevating his legs), I did not know if adding the additional dose would be appropriate with the new meds that have been prescribed over the last week. A quick call by the Hospice nurse during her home visit on Thursday ensured a quick call to the Doctor to secure the increase the furosimde dosage. Done!
As we moved into Sunday, water continued to build on his feet and ankles. “The edema was getting worse,” I thought. “I am going to call Hospice,” I said to TLO. “What are they going to do for me?” TLO said. “I’m pretty sure they are going to be able to do more than I can do for you at the moment because what is happening right now is just a tad out of my comfort zone,” I said. When the phone rang at Hospice, I was greeted by a warm voice who listened as we talked through a couple of options that might help in this situation. My Ph.D. in TLO comes in handy when debating with him what is the right thing to do.
While there was really no resolution on Sunday to his edema, things started to change on Monday with a few calls and a visit from the hospice Medical Director. It was perfect timing for the doctor to make her home visit as we were able to address first hand not only the edema, but the entire care plan and philosophy of TLO’s care as we move forward in our hospice journey. Having the Doctor in our home for over two hours not only paid medical dividends for TLO, her presence demonstrated to both of us the special care that hospice provides its patients. The doubter of Hospice, TLO became the believer after her visit. “How did you get her to come to the house?” TLO asked. “She came because you’re a special patient,” I retorted!
What amazed me about her visit was not only the care she provided to TLO, but the time that she took to educate me on his meds; the doctor was there for both of us! While going through his meds, the doctor provided me with a ‘cheat sheet’ written out in layman terms so that I would have a better grasp of the new pain meds. Remember the thing about knowledge! Now, I am in a better position to advocate because I’ve gained more knowledge about the process with his new meds.
Advocacy comes in many shapes styles and forms; I’m not the type of advocate who is your face, raises his voice, or creates a scene. However, I will engage professionals, ask questions until I am blue in the face to assure TLO has his what he needs. Often times, we as family caregivers forget that we do have a Ph.D. in the one we care for. Our Ph.D. is just as important as any professional who is on the care-team because we spend the most time with our caree and know them the best. That’s why the role of advocacy is essential in caregiving. Physicians can write prescriptions, nurses can administer treatment, CNAs can provide care, yet the key component to all these professional services is the personal knowledge or rather the Ph.D. the family caregiver’s has on their caree. All these care components have to be in unison for optimal success.
A family caregiver’s Ph.D. usually come just like those professional Ph.D.’s…burning the midnight oil, sleepless nights, worry, stress, etc. A family caregiver’s advocacy is like taking an oral test in school, you have to be prepared for the unexpected, you must show up and give it your best try! Knowing what I don’t know has helped me be a better advocate; having a Ph.D. in TLO is priceless!
Family caregivers, I bet you have a Ph.D, too!
You see…we might have Cancer, but Cancer does not have us!
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