Bill and I and the doctor were crowded into a tiny examination room, peering at the computer screen. A week ago he'd had a serious event which brought him to the emergency room. His cardiologist was there that evening, and did multiple tests. We stared at the screen where the results were displayed.
"Idiopathic Cardiac Myopathy." Finally this series of symptoms, which we knew were heart related, had a name.
Kindly, he explained that idiopathic meant they had no idea why Bill developed this. "It means the medical profession are idiots," the doctor quipped. Cardiac meant it involved his heart, which we knew. But the doctor pointed to the computer screen and explained how Bill's heart was big and floppy and not functioning as a heart should. That was why his elbows and knees were turning black, his ankles were double their normal size, and Bill was short of breath.
Obviously, it wasn't good news. But we felt an incredible relief. This thing had a name.
As a care partner, you will quickly learn that many hours are spent in doctor's offices. Especially with your GP, what are the questions you need to ask?
1. Diagnosis--what is the name? With a proper diagnosis, you can do your own research into all aspects of the disease. Ask which are the most reliable sources for finding information. Are there support groups or societies for that disease which you could access? He might have pamphlets to get you started. You know, I'm sure, that not every internet site is a reliable source of information. Organizations formed around a disease, such as the Alzheimer Society, are a great place to start to look for both information and support. Ask your doctor where to start.
2. Prognosis--No doctor has a crystal ball, and most families would love to look into one. But he can tell you what to expect in the next days or years. Most diseases have an early, middle and late stage. Ask him what each of these looks like, how long they generally last and what kind of treatments are given. Take notes, but know that you can also find more information online.
3. Treatment--Focus on the stage of the disease where you loved one is living. What kinds of medications are given at this stage, what are the side effects and what benefits should you expect to see. Is there anything you should know about administering the medication? Timing is vital in the case of some medications, and others need to be taken whole and can't be crushed.
What other non-medical interventions are important? Exercise is often key, but how much and what kind? What other kind of therapies would benefit? My niece attends a Parkinson's boxing class and loves it, and it helps her with balance and strength and coordination. She attends a choir with the same group, and loves it less, but it strengthens her voice, which is always an issue in her disease. Your doctor may not know all the resources available, but it's a place to start.
4. Specialists--Your GP is probably your primary care physician. However, your loved one may need several specialists, depending on other conditions and the severity of their condition. Ask about this, and at what point will they enter the picture.
Something to consider: Your doctor and specialists should be in a close geographic proximity and have privileges at the same hospital. We learned this the hard way. Bill had a GP in downtown Toronto because it was handy for him to visit her immediately after work. For many years this worked well, but when he got sicker and needed a cardiologist and other specialized treatments, they were in Mississauga where we lived. Because of the distance, the doctors didn't talk to each other, and his care suffered. When we tried to get a GP at our local hospital no one was accepting patients. Thankfully, a friend asked a favour of her doctor and he took him on, but we had an anxious several weeks trying to work out the details.
5. Heredity--Should other members of the family be tested for this disease? Does it run in families? As scary as the answer might be, this is vital information.
Have your questions listed, and prioritize them as there may not be time for all of them. Remember, this won't be your only visit, so some questions could be deferred while others will occur to you later. Keep a running list.
Your doctor is part of the team caring for your loved one. Make sure your relationship gives you the freedom to ask all the questions you need answers to.
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Care Partner Wednesday--After A Frightening Diagnosis, Ask These 5 Powerful Questions