This is a series of articles about long-term caregiving.
Long-term caregiving of a person in declining health of body and/or mind causes increasing demands on the primary caregiver. These demands are many and they vary in intensity. The increasing demands force the caregiver to become a manager. Demands that require multitasking. Demands that require more and more time to deal with the changing health conditions. Demands that make the caregiver become flexible and adaptable; to have a good memory of many details.
One source of increasing demands on the caregiver is the medical and/or mental changes in the patient. This includes the need to know about medications and especially their side effects. The making and keeping of more appointments. The kind of transportation needed. The purchase of necessary equipment and medical supplies. The scheduling of daily meds. Changes occur in the patient’s diet. Changes in body functions. Changes in the ability of the patient to do personal self-care.
There is no way to avoid the “wear and tear” effects that the increasing caregiving and the required management has on the caregiver. Tiredness is almost always an ongoing struggle. Patience is hard to come by. Memory lapses from many things to remember. Good sleep may be a luxury.
How can a caregiver deal with these increasing demands on time and energy?
First, face the fact that the patient’s chronic condition is not improving. It is and will continue to worsen. Face the reality that you will eventually be unable to handle the amount of demands.
Second, don’t try to do it all yourself. Get help. Ask relatives to pitch in, to give you some relief. (Some will, some will not. Sad but true in some families.)
Third, spend the money you have to when a sitter is needed. You must take breaks.
Fourth, participate in a support group or personal counseling to talk about your grief, your fatigue, frustration, anger, the unfairness, the wish to wake up from this bad dream, anxiety about money, confusion about insurance, and self neglect.
Fifth, it is not selfish to put your own self-care before your caregiving. Have a life of your own. Protect it. Live beyond the confinement of giving care to a loved one.
Sixth, know that the Spirit of God is always listening, and always with you. Participate in public worship. Make time for private prayer and devotional reading. Journal writing can also bring relief.
About the Author
Hugh Burns is a Licensed Marriage and Family Therapist and an ordained clergyman in the PCUSA. Hugh graduated from Presbyterian College and Columbia Theological Seminary. He leads DPC’s Caregivers Support Group and has previously served as a Clinical Chaplain in a mental health center and a hospital. You can reach Hugh by email, at email@example.com.