I was just reading the blog of a wonderful writer/designer of knitted items. I’ve been reading it for awhile and there’s something about Annie that resonates in me.
Her husband has just been diagnosed with Multiple Myeloma, and she’s been trying to come to terms with all the changes in their life (they just moved too). I think one of the things I’ve most liked about her is that her mind seems to go a mile a minute like mine, and she jumps right in to try things she’s never done before, like house repairs. And like patient advocacy.
She realized immediately that chronically ill people need a strong advocate, and hopefully she will realize as well that she can’t and shouldn’t always be there, and cuts herself some slack. An advocates job is a long and hard one and she will need support just as much as her loved one.
No matter how wonderful your doctor or the hospital is, Everyone needs an advocate. In a perfect world the patient is always informed and things just flow thru the system, but this is not a perfect world. There will be delays, confusion, and sometimes tests you had no idea were happening. Maybe the doctor thought about it while he was charting, meant to come back to talk about it, but had something else come up. Make sure everyone who is involved in your care understands that you want to be actively involved in the care of your loved one.
Make sure the loved one has let the medical team know it is ok to talk with you in regards to care. With the new privacy laws, I know many doctors who will not give a spouse or child any info at all until the patient has stated it is ok. I spent much time visiting patients whose family lived far away, and getting them information was tough, especially if the patient couldn’t verbalize the permission to share information.
An advocate is someone who can say “Wait a minute, why do you want to do this test?” or “Please explain in detail what this procedure is, what you hope to find, and what will be the steps you plan to take when you have the results” (I recommend you split this question up) or “We asked for some pain meds a half hour ago. What is the delay and how can I help to make this happen faster?” or even “I know the doctor visited loved one early this morning but I haven’t talked to the doctor in a couple days and loved one isn’t clear on what’s happening. Please ask the doctor when they will be visiting again so I can be here. If I’m not here, please have the doctor call me at this number.”
If you can’t seem to catch your loved ones doctor when they visit, find out from the nurses when your doctor usually makes rounds and ask them to let you know when they arrive. In the case of my daughter, once alerted by the nurse that the doctor was on the floor, I was known to hang close to the door of the patient the doctor was visiting so that no matter if he had an appointment next, I would be able to at least chat for a second. That was my last resort. I most often went to the nurses station as soon as they arrived so I could catch them before their mind got busy with everything else. Nurses can and will be a wonderful advocate for you, and I often found that one special nurse will really advocate strongly for you. Doesn’t happen every time, but happens often. After many years in the hospital environment I can tell you that its the nurse who really knows what’s going on most of the time.
Most of all, advocates, please realize you should not take the full weight and responsibility of your loved ones care on yourself. Many people will want to help. Let them. Don’t beat yourself up if you are not there when something happens. Both you and loved one need breaks from the insanity.
Cancer is a scary world and its good that you are there for loved one, but be there for yourself as well.