“Anything you need, just let me know,” is a familiar refrain when someone is diagnosed with a chronic condition. And while it’s heartfelt and sincere, caregiving can become a full-time job for those who offer it. That’s why it’s important to be prepared. There are lots of ways to help:
Most likely you won’t be alone as your loved one’s only care partner. And that’s great, because there’s plenty to share. Taking on the central role to coordinate help can be important to ensure coverage. With you as the “lead” caregiver you can organize a schedule, appoint tasks, and update others on progress and needs. And everyone involved will be able to perform at his or her best.
There’s no need to take on too much yourself. Give out shopping lists. Ask for help with child care and household chores. Organize volunteers to make meals that can be portioned and frozen for future meals.
In caring for a loved one with dermatomyositis or polymyositis, thoughts tend to go toward day-to-day needs related to symptoms. And while that is clearly important, you must not lose sight of your loved one’s financial and insurance needs. It’s not that patients are not able to manage. But, of course, it’s easier for them if they don’t have to.
As much as your loved one will allow, try to take over managing finances. Expenses can pile up if they’re not managed. Insurance claims should be made in a timely manner. Then, of course, there are everyday expenses that remain—food, utility bills, etc.
Of course you can share information, but the work of financial management might be a burden better left to you.
“I wish I could be there for you.” That’s the frustration some family members feel when they’re not able to be present for loved ones in need. They may live out of state. Job requirements may keep them away. Caring for children and managing their activities may be a priority.
Still, people with dermatomyositis and polymyositis can benefit from “distant” care. While local caregivers can manage the day-to-day care, there is plenty that can be managed long-distance.
For the long-distance caregiver, it’s important to remain as “connected” as possible. That means phone calls and e-mail for routine updates. Even social media like Facebook, Instagram, and Twitter can help keep everyone up-to-date. A simple post with a picture or news can spur a conversation that not only informs, but also helps to keep your loved one engaged.
From a distance, it’s important to have your loved one’s local doctors and other care-related contacts on hand. You can assist with planning appointments, ordering prescriptions, even ordering meals and groceries. Our world really has gotten smaller with today’s technology. Even if you’re far away, you’re connected. Setting up computers with Skype or FaceTime will allow for face-to-face chats anytime you need.
Foods that are high in sodium, sugar, and fat. Processed foods include canned vegetables, microwave dinners, and more.X