When I arrived home last night I noticed that Paddy dog had managed to remove the ears from his toy bunny. Before I left he’d dislodged the eyes and tore out the whiskers. Before long, he’ll snag the tail and tear out the fluff and we’ll buy another toy. When we first purchased the toy bunny it looked like this lop-eared sweetie, adorable.
The bunny reminded me of what every caregiver needs, A Large Set of ears. Listening ears. Not the Paddy dog ears that wiggle back and forth waiting to get in his bark between sentences and certainly not my kind of ears, they only heard half of what husband said because I was busy forming my opinion. Every caregiver needs to grow big ears that hear all of what the care-receiver says and eyes that see what the CR isn’t expressing.
For the caregiver, friends and family dealing with a terminal illness, listening without responding is crucial. While waiting to board my flight from Eugene to San Francisco, I met Patty. In only a few minutes of conversation I learned she was flying to see her dying father. I shared the following tips with her—maybe you know someone that might need them also.
Listen well. Allow the care-receiver (your father) and your family to express all their feelings. Some things said might hurt, try not to interrupt. Allow time to process what is said, even years, maybe someday you’ll understand their feelings.
Realize not all the family will think the same. Forgive them in advance, especially if they push their ideas on you.
Dredge up every positive memory possible. Share them as family around the care-receivers bed whether they are awake or not. (My friend Laura wrote out her wishes before she became comatose. She requested that her family talk to her and each other like she was still with them.)
Journal. Sometimes we cannot express our feelings to our family, write them down. In years to come you won’t remember what happened, but your journal will remind you of how you survived.
Read the book of Psalms to the Care-receiver and the caregiver, ask your family to help read.
Laugh. Loss is inevitable, and will happen to all of us. Laughter eases tension.
Cry. Tears are healing.
Tonight while visiting our son James, a builder in Eugene, Oregon, we had opportunity to hash over old memories and then talk about his work. Somewhere in the middle of all that James said, "Mom, I like Holmes on Homes. He shows how people get ripped off by shoddy builders." Then he said, "It's like people need to research the people they hire. Like ask for references, find out how many of these rebuild projects they've done and if they liked the finished product."I just looked at him, I mean, this sounds like what I wrote in Capsules of Hope: Survival Guide for Caregivers. Only he's talking builders and I'm talking doctors. It's like why not, it works in everything. The food industry, who teaches our kids, and of course, what about the babysitters? To be a good consumer we need to give out positive feedback and let others know when something isn't done correctly or a company doesn't deliver what they've promised. Okay, so how does that pertain to caregivers? Husband has switched roles with me. When he battled Psuedomyxoma Peritonei (PMP), I served as caregiver. I had no idea I should ask how many PMP patients a doctor had treated or what other patients thought about the care they received. Then this last month when I found a lump, the physicians assistant said I needed to see a surgeon, in a state of "I can't believe this is happening," I never thought about asking for a specialist for possible breast cancer, at least at first.This I can tell you, the difference between the first general surgeon and Dr. Silva, Surgical Oncologist is major. Now I've not only written the instructions for others about the importance of knowing your physician, I've lived the journey and beat myself up because I didn't ask more questions. In this last month husband has learned first hand, that when the patient is in a state of shock and disbelief, the caregiver must ask questions. This I know, that man of mine is doing a good job. Together we have reaffirmed the importance of knowing your physician, this is your life. You need the best in the business for you in your current situation. - Search for a support group, often they have a list of the best doctors for your illness. Be aware, not everyone connects emotionally to a doctor. Check all options before being persuaded to use a doctor or not.
- Use the internet. Has the doctor published articles about your medical condition? How long has he been treating your type of problem? Are there any negatives posted about him?
- HIPAA prohibits the doctor from giving you names of patients for reference, but you can google possible feedback about the doctor, you might be surprised at what you find.
- Ask the doctor, his staff, his assistant if they have patients who will talk to you about the care they received under this doctor. (When Dr. Loggie treated Gary in 2004, we gave our name and number to the office and said, tell patients to call us.)
- Check the local newspaper. Often, especially if the doctor is treating rare conditions, articles have been written-good and bad.
