Understanding the Rhythm of a Disease
Much of the strain of caring for a loved one lies in the loss of a predictable routine, a sense of “normalcy.” Understanding the course of your loved one’s condition—the rhythm of how it unfolds—can empower you to respond more flexibly to its challenges.
Do any of these patterns ring true for your situation?
- Relapsing pattern: Repeated flare-ups of illness followed by a “return to normal.” Actually, with a relapsing pattern, there are two “normals.”
–Have systems in place for flare-ups. Ensure that your employer, other family members, etc., know what to expect when you have to move to Plan B.
–Return quickly to “healthy mode.” It’s also important to have a strong Plan A in place for those times when your loved one is doing well.
- Progressive pattern: A steady decline over time. With this pattern, things are continually changing, and unfortunately, “normal” seems to always get worse.
–Watch out for irritability, burnout, and depression among family members.
–Breaks from caregiving are essential. You need to pace yourself for the long haul!
–Allow yourself to mourn the changes. Join a support group (online or in person), talk with a counselor, or write in a journal.
- Plateau pattern: A sudden event causes change but levels out to a “new normal.” The initial shock of a stroke, for instance, wreaks havoc on a family’s routines. But after you adjust to your loved one’s new abilities, life can become more predictable and less stressful.
–Keep your focus on what your loved one CAN do. Instead of focusing on what “used to be,” turn your attention to the pleasant activities that are possible within your relative’s limitations.
While you may not be able to change the disease, sometimes understanding its rhythm can help you find routines that make it less stressful.
Is it hard to find a reliable routine?
As the Delaware, and Delaware and Chester Counties in PA experts in family caregiving, we at Delaware Palliative understand that predictability goes a long way to keeping things simple so you have reserves for when the situation gets complicated. Let us help. Give us a call at 302.478.5707.