“What enables a general to conquer and achieve things beyond the reach of ordinary men is foreknowledge” Sun Tzu ‘The Art of War’
Over the last month, I have read and heard much about the needs of the caregiver, the fears of the future for both the patients and caregivers as well as the stresses of living with a chronic illness imposes on a family, a spouse and a caregiver who may also be frail, infirm or elderly.
It is one thing to care for a loved one or spouse when the caregiver is young and healthy and is another one all together to provide care when the caregiver he or she are of advanced age with less energy, stamina and resources.
I have been struggling with this notion more in the last several months as not only my disease progresses but also as various members of my family including my own caregiver have become ill. I wonder if I will have the fortitude to handle and rise to the challenge.
The answer is YES!
First, I have found that where there is a will there is always a way! This does not mean that the journey will be easy or without challenges simply means that God never gives us more than we can handle. Nothing last forever! All pain and suffering and struggles eventually pass. We must learn to ride the storms bend without breaking.
Second, we should not allow fear to paralyze us and keep us from enjoying the present or being derelict in our duties and responsibilities. This however, does not mean that we throw caution to the wind and live only for the moment without planning for future contingencies.
We all have felt at one time or another like our strength and care giving skills were sub-par. Yet, what invariably happens is that when 2 people in a relationship are sick one will always assume the role of the caregiver while the sicker, weaker individual recovers. This means that for a time one person has to put his/her needs aside to care for the more person with the more pressing medical issue as in the case of a friend with PD who suddenly was thrust into the caregiver role when his wife (the usual caregiver) had surgery, or another one who had to mustard strength to deal with spouses cancer despite their own medical problems.
In order to facilitate care and decrease stress, guilt, anxiety and fear I recommend a few things.
#1 do not let fear become a stronghold. You and I have the power to say NO and not continue with the negative thoughts that will lead us to desperation – mainly because is not healthy. Plus, I have found that our worst fears usually don’t happen rather it is the unexpected that hits us like a freight train. So why waist energy and worry over something that probably will never happen.
#2 decide in advance what it is that each partner needs or wants done when illness worsens- are these desires plausible, feasible and achievable within the confines of the relationship.
#3 make plans in advance for specific contingencies like what if the caregiver needs surgery and patient who will now be provider is unable to carry out that responsibility talk to support groups religious and otherwise for assistance, speak to the physician about having patient stay in a facility longer or be admitted together or send social worker and other ancillary staff to the home to help prepare meals or help with house chores. Doctors and social workers along with other health professional are there for you to use in times of undue stress. You should not have to go at it alone. Involve friends, neighbors, relatives to assist with specific needs like transportation, sitters, etc. Medicare often pays other family members to become caretakers. In some cities there is free transportation for sick and elderly like New York and some have free Uber services.
#4 for the future- meet with financial advisors, purchase long term disability insurance, decrease gap in distance between care giver and person with PD, down size before problems arise, have OT evaluate home for safety and accessibility for those residing within. Think about access to physicians perhaps moving closer to university centers would offer peace of mind.
#5 don’t neglect your health to care for the other person. Think about how much more the person whom you care for will suffer if you are no longer able to care for them. Being prepared assures us confidence! But relying on God gives us victory!
All rights reserved by Maria De Leon MD