Coping With The Demands On A Caregiver

Ranjan and Usha’s story

Ranjan* a 55-year-old first-generation immigrant to the United States lives in Texas. Last year, his wife, Usha* (54) was injured in an automobile accident that damaged her spine causing paraplegia.  Even after rehabilitation Usha is still unable to use her lower limbs and is wheelchair-bound.  She is dependent on Ranjan for her daily living activities. The couple do not have any children.

Ranjan is a professor at a local university and Usha is a homemaker. She does not have long-term care insurance or disability insurance and is not eligible for Social Security disability assistance since she has not worked in the US for 10 years. Their extended family lives in India so Ranjan is Usha’s sole caregiver.  Over the three months, Ranjan has been feeling overwhelmed and overburdened and asked us for guidance.

Question: Why is God punishing us?

Dr. Sharma:  Ranjan, please do not think of it this way.  Life is full of ups and downs. Sometimes when we are down, we feel that state is permanent. Yet, that is never the case.  Just like good times don’t last forever, bad times also do not last. There is no point in perceiving this persistent difficulty that has negatively affected you and Usha as a life of punishment.  Instead, with resilience and optimism, you should try to find ways of coping physically, emotionally, socially, and spiritually.  Your coping skills will improve with time, and this challenge will be behind you. In the meantime, please take one day at a time.

Question: How can we physically cope with this situation?

Dr. Sharma: Usha has undergone a life-changing adversity.  The accident happened only a year ago.  Her rehabilitation is not complete yet. She must continue with physiotherapy and occupational therapy under the guidance of a physiatrist.  Your medical insurance should be able to help you there. If not, the continuation of home-based exercises also plays a very important role.  You must keep her motivated, cheerful, and regular with her exercises.  The recovery will be slow and painstaking, but she must continue doing them diligently.  She may be able to walk again.

Likewise, you should also build your own physical strength for caregiving . You have mentioned that you help Usha with some activities of daily living. So, to continue that you must strengthen yourself by regularly exercising, which will also help with your emotional well-being.

Question:  How can we emotionally cope with this situation?

Dr. Sharma: Ranjan, such a situation is bound to cause emotional distress and can lead to burnout.  But some of this can be prevented. Both of you may be experiencing sadness, guilt, anger, and frustration. All these are valid emotions. You must talk about these feelings with trusted friends and your family. Even though you do not have family here, you must continue to use technology to communicate with your extended family back in India.

Ranjan, you must prioritize self-care. It is not being selfish to first take care of yourself. This would involve setting boundaries, seeking support from friends or support groups, and taking regular breaks.  You can utilize a home health aide occasionally if not regularly to take a much-needed break. Regular relaxation and a sound eight-hour sleep for both of you is a must. If these measures do not work, you both must seek professional help and consider working with a therapist.

Question: How can we socially cope with this situation?

Dr. Sharma: It is common for persons with disabilities and their caregivers to experience social isolation and loneliness which in turn affects their satisfaction with life.  They tend to have fewer opportunities for social interactions because of the demands and restrictions imposed on their lives by the tasks of caregiving.  So, here it can be helpful to participate in activities with support groups and people in similar circumstances.

You can find and connect with support groups online and may even participate from the comfort of your home. You should also make conscious efforts to spend time with trusted friends.  As I mentioned earlier, try to   regularly interact with family back home in India via phone and video calls.

Question: How can we spiritually cope with this situation?

Dr. Sharma: According to the American Association of Retired Persons (AARP), Caregiving in the US 2020 Report , prayers, meditation, a large proportion of caregivers pray regularly to cope with the situation. Meditation is also an effective tool to derive balance and satisfaction. Reading spiritual or other literature of interest and listening to music also aid in spiritual coping.  Having “alone time” for reflection and introspection is another potent means to cope with anxiety-producing situations like this.

Question: Can you refer me to some resources in this area?

Dr. Sharma: Here are some resources for more information:

• Family Caregiver Alliance Resources: https://www.caregiver.org/caregiver-resources/all-resources/
• “What is the Hardest Part of a Caregiver?” https://www.homechoicenys.com/blog/hardest-part-of-a-caregiver
• “Caregiver Statistics: Health, Technology, and Caregiving Resources:” https://www.caregiver.org/resource/caregiver-statistics-health-technology-and-caregiving-resources/
• State of Caring report from UK: https://www.carersuk.org/media/xgwlj0gn/soc23-health-report_web.pdf
• Stress management book with individual chapters on various aspects of managing stress: https://www.sciencedirect.com/book/9780128112953/practical-stress-management

If you have questions, reach out to Dr. Sharma at editor@indiacurrents.com

* Name changed upon request.

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