Sunday, January 22, 2017

A Must Read - What Happens if the Caregiver Disappears

The following article is from the Stroke Network Newsletter web site: and is a followup to last weeks post, "A Survival Guide for Stroke Groups". If, after reading this, you think of anything else that might be important but got left out, please let us know and we'll make sure it gets included.
By David Wasielewski

The importance of a personal backup plan

As we can all attest, strokes take folks by surprise. Survivors and their caregivers are caught off guard by the trauma and it’s often devastating after effects. Survivors and caregivers are tasked with accommodating the survivor’s acquired disabilities. Together they must quickly create new life routine based on the survivor’s needs. In many cases there is little time to plan this new life.

New daily routines are cobbled together on the fly and adjusted on the spot as required. Often, a family member or friend negotiates a new life routine with the survivor based on the survivor’s pre stroke personality. Many times the caregiver already has a good idea of what the survivor’s preferences might be. Food choices and mealtime routines are established along with new procedures for bathing and other personal care arrangements.

These can include the use of specific eating utensils and place settings, placement in particularly comfortable chairs in the house, the placement and storage of any aids such as canes and walkers so they are easily accessible. For survivors who can communicate effectively and retain cognitive functions these routines can be explained to anyone new.

However, for survivors with communication or cognitive difficulties this becomes a major challenge when the primary caregiver is forced from the picture. What happens if the primary caregiver gets sick and can no longer support the daily routines the team has established? A caregiver in my stroke group described just such a dilemma.

The woman and her husband, a severely aphasic stroke survivor with mobility issues, had managed to get along fairly well for the better part of a year after her husband’s stroke. Many years of marriage had left her knowing her husband’s preferred daily routines, food preferences and general likes and dislikes. Through their post stroke adventure they had also managed to establish a subtle but effective means of communication.

All was well until the wife suffered a fall on the frozen sidewalk this past winter. The injury left her with blood clots and required a five day stay for treatment in the hospital. Bad enough for her but how would her husband fare, being taken care of by a stranger? He had no way to effectively communicate with a stranger. How could he make his routines known to someone new?

Did the wife’s brief stay in the hospital jeopardize her husband’s ability to stay home? The situation alerted the wife and her husband to how fragile their living situation really was. Even a temporary stay in the hospital for treatment put the couple’s long term living situation at risk. The wife’s experiences led her to caution the group that we all need to have a Plan B for when things go awry.

We expect the stroke survivor might continue to have ongoing problems and make plans to deal with them (Plan A). But most of the members of the group reluctantly admitted that they had not seriously considered a plan B should anything happen to the primary caregiver.

A discussion among the group brought up the following possibilities. The primary caregiver needs to prepare for an emergency backup who would be available to care for the survivor in a crisis. That individual should be familiar with the survivor’s routines. These should include dressing, bathing, eating , personal care as well medication needs and schedules. The backup individual should spend time with the survivor / caregiver team to understand how to communicate with the survivor.

That individual needs to clearly understand what might be required if they are needed. An organized notebook with important care information should be readily available to the backup caregiver for reference purposes. It’s not easy to contemplate yet another crisis in an already complicated life but survivors and caregivers would be smart to prepare for such an event while they are able.

David had a stroke in 2005 ending his career as a logistics consultant. Since the stroke he returned to college for a Sociology degree. He is a peer counselor, facilitates a local stroke support group, volunteers at the local United Way and writes for The Stroke Network.

Copyright @May 2015
The Stroke Network, Inc.
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