THINGS TO THINKS ABOUT RIGHT NOW · Parkinson's Resource Organization

THINGS TO THINKS ABOUT RIGHT NOW - WHAT HAPPENS WHEN THE CAREGIVER DIES BEFORE THE PATIENT?

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THINGS TO THINK ABOUT RIGHT NOW

WHAT HAPPENS WHEN THE CAREGIVER DIES BEFORE THE PATIENT?

When a person with Parkinson’s dies, their family caregiver faces a period of adjustment as their caregiving responsibilities come to an end. They grieve, of course, but they also adapt and carry on with the business of living. When the situation is reversed, however, and a family caregiver dies before their cared-for, things are instantly much more complex... especially for those with cognitive issues and motor skill disorders.

    Imagine the grief one goes through upon a loved one’s passing, and then try to imagine going through this as a person with Parkinson’s, with or without cognition issues but with motor skills disorder. To put it simply, it is near impossible.

    If something were to happen to the caregiver, the cared-for must immediately rely on someone else.

Things To Think About Right Now — If you are the caregiver, who would be able to take your place? How quickly would your replacement be on-site to assume your caregiving responsibilities? Would that person even be “willing” and able to accept this role? For how long? People with Parkinson’s—especially those with cognitive issues and motor skill disorders—who require high levels of care, rely heavily on their spouses, children, and others to do so much for them. When a primary caregiver experiences a temporary medical setback of their own or dies, it is utterly devastating in multiple ways.

    For instance, consider financial obligations. A person with Parkinson’s—especially those with cognitive issues and motor skill disorders—may not have a clue who they owe, how much they owe, where the accounts are, or how to access them. They may not know when the water, cable, or electricity bills are due, or even more, they may not remember to make the payments. If they would not remember that, how can they remember how to get things to file the taxes, balance the checkbook, ensure that insurance policies are current, or manage the other financial assets?

    Managing the finances is not the only item of concern, but the bills do keep coming.

    How about managing the doctor appointments, the other health care needs, the socialization? How about getting to and from places... the transportation? How about bathing, dressing, and the other activities of daily living?

    In most cases, these are impossible tasks for a person with Parkinson’s, with or without cognition issues but with motor skills disorder, especially while grieving. Pretty unimaginable, don’t you think?

    All caregivers should have backup plans (yes, more than one backup plan) to ensure the person with Parkinson’s care continues as seamlessly as possible if the person with Parkinson’s normal routine is disrupted.

    Here are some questions to ask yourself. What would my cared-for do if I were unexpectedly hospitalized? What would happen to my cared-for if I suffered a fatal heart attack or died suddenly?

    This may seem morbid but is not far-fetched. Rough statistics show that 63% of caregivers die before those they are caring for, especially if the cared-for is a person with Parkinson’s with cognitive issues and motor skill disorders. Illness that does not lead to death is rampant, as well... depression and auto-immune diseases are high on the list. Families need to think about things like this and create alternate care plans for these scenarios.

For more information about insurance needs, especially Long Term Care or any health, disability, or other insurance that might be needed for Parkinson’s, a Parkinsonism, or the Partner in Care, contact Jim Lawless, MBA, a member of the Wellness Village since August 2019, https://www.parkinsonsresource.org/the-wellness-village/directory/lawless-mba/

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Updated: August 16, 2017