A single mother who’s always been independent, she doesn’t have a spouse by her side when things get bad or simply to help her manage her care. Several of us have rallied together to provide her as much help as she’s willing to accept.
This isn’t completely new to me. I’ve seen terminal illnesses in my own family before.
My grandmother died first, when I was 21, of Stage IV cancer. My father died next, the following year, after a three-year battle with ALS. We had a three-year reprieve, then it was my grandfather’s turn. Pancreatic cancer.
In every instance, one person took on the role of caregiver—coordinating with doctors, urging medications be taken properly, worrying. Lots of worrying.
In reality, it takes a village to help someone diagnosed with a terminal illness. One person cannot do it all alone. You can try, and many do. You’ll be worn down to the bone, and then feel guilty when more can’t be done or when resentment builds at all the demands caregiving requires.
But here’s the deal: When you face the terminal diagnosis of someone you love, the village you’re in will look more like a herd of cats. Here’s the cast:
1. The Patient. They will spend a lot of time trying to convince themselves and the world around them that they’re fine—even on really bad days—which makes getting them help very difficult. Depending on the drug concoction they’re taking, you’ll probably also have to compete with side effects, confusion and the emotions that come with being so sick.
2. The doctors, nurses and hospice workers all want the patient to have a good quality of life, however long that may last. They’ll work harder than you know to do their best within the confines of medical science, insurance requirements and your finances. You’ll realize who the good ones are, and you’ll cherish every one of them. They’re proof that angels do exist. Best of all, they don’t slap the people who bring in Dr. Google recommendations.
3. The main caregiver will look much older once this is all over. They have to drive a crazy train of doctors, medications and expectations of other family members as well as juggle bills, finances and jobs. Unfortunately, they do a lot of it alone.
4. The family members in denial. There will be plenty. As the disease progresses, many of them will start to see the light. But in the meantime, the main caregiver will spend a lot of time explaining the diagnosis and treatments over and over again. None of these people will see reality at the same time, and all of them will grieve once they accept what’s happening. As someone who has watched this play out with different relatives many times over the past year, it never gets easier, and it’s always frustrating and sad.
5. The family members who could help but won’t or can’t even when you ask. I attribute this to fear and denial, but sometimes it’s pure selfishness. No one wants to believe their loved one is sick and possibly dying. If they don’t come around, lend a hand or call, they don’t have to admit what’s really going on. It’s okay to be really pissed off at these people.
6. The family members who have a friend, client or customer who’s had the “same exact disease” and lived. Their intentions are good, but you’ll now be inundated with possible medications, treatment options and accounts of what other doctors have done. Sometimes they’re legitimate things to ask the doctor about, but more often, it’s a waste of time. When you explain why that option won’t work, be prepared for anger and denial.
7. Their real friends. Sadly, some people will drift away. They can’t handle the illness or they weren’t true friends to begin with. The real friends will be there. They might also be in denial or wanting you to try every potion and trick to find a cure, but at least they show up. Let them. It’s good for everyone.
8. The people who will tell you what you already know as if it’s new information. We can see my SIL worsening. We know she can’t live alone much longer. Every day, well-meaning people on the periphery of her care tell us the same thing. Instead of telling us what we know, offer us hope, give us options, and do something other than be Captain Obvious.
If you can’t tell, it’s a big, crazy village of cats that refuse to be herded anywhere.
It may take time, but find the people who can and will help—friends, family and health-care providers. Lean on them. I promise the good ones will be there for you. And if you’re one of those who can’t believe it’s as bad as you’re being told or “unable” to help, either step up or get out of the way. The rest of us don’t have time for you or your drama.