My older sister had a major hemorrhagic stroke on January 8, 2009 and was hospitalized for almost a month in intensive care and a rehabilitative hospital.
My daughter and I found her in her home and I did neurological checks and determined that she needed to go to the hospital emergency room immediately. She was reluctant to go but finally agreed when my daughter and I insisted. Within 20 minutes of arriving at the emergency room, the doctors diagnosed her stroke and placed her in the intensive care unit for about a week.
Because of her arterial bleed in the brain, she had intensive physical, occupational and speech therapy in the rehabilitation hospital and this care followed her home. My daughter and I initially felt relieved and blessed that my sister was alive when we found her in her home after not hearing from her for almost 3 days. We were also grateful that she was recovering when they upgraded her condition and she went to a telemetry unit and finally to a rehabilitation hospital.
But, from the time of the stroke and her hospitalization, my daughter and I had to put our lives and jobs on hold and attend to my sister’s personal and business affairs. I became her temporary power of attorney, we had to clear out and clean her townhouse apartment within the month of January in order to save her from additional rental charges.
We dealt with her job, application for social security disability and all the paperwork requirements for Medicaid, food stamps, social security and indigence assistance (pending Medicaid required by the hospitals). Satisfying the requirements of all these agencies and doing the employment history search was time and resource intensive.
We also had to visit my sister, bring supplies to the hospitals, and provide all the immediate financial means to clean and clear out her home, take care of outstanding bills, open a storage bin location for her belongings and prepare our home for her when she was released from the hospital. It took all our savings and my quarterly taxes to address her emergency needs.
The emergency services did not start until March, 2009, and social security disability started in May 2009. When the social security disability started the food stamps were discontinued. We felt overwhelmed once more because the rehabilitation hospital forced us to take my sister into our home and were unsuccessful in helping us search for the appropriate medical bed and equipment needed, but the pending Medicaid helped eventually. The first night that she was in my home, she fell out of the recliner we utilized as a make-shift bed. We had to get her primary care doctor to send a certificate of medical necessity to get the bed within a month of her coming home. She also came home with a list of about twenty medications and some were too expensive for us to afford and Medicaid Pending did not cover all of them.
It forced me to make some hard decisions after calling her seven doctors, trying to balance our money against her medical costs. Our main concern was that my sister came to my home with the doctors specifying that she have around the clock care due to her low-vision and cognitive impairment. She could not cook, drive or perform her daily living activities without our assistance, monitoring and guidance. Her Medicaid did pay for a home health care aid and provided a three dollar co-pay for the long list of constantly adjusted medications.
The blessing we try to remember is that we had the skills to take care of my sister. Previously, my entire family including the sister who had the stroke, 3 more of my sisters, two of my brothers, my daughter and I provided home-based and hospice care for my mother and she had a good quality of life and a peaceful death.
We also had the advantage of my being a psychotherapist, my sister who had the stroke was a certified occupational therapy assistant and my daughter has an extensive medical training background from her aunts, uncles and study of medical care information. We used this extensive knowledge and experience to help my sister and all of us cope. The emergency room doctor asked me if my sister was clinically depressed and I told him that in my opinion she was suffering from long-term depression and needed medication. This did help with elevating her moods.
She had suffered several major stressful events in the past 3 years including the death of her only child, two herniated disc in her back, being fired from her job and being robbed while she was at work. Now my sister lives in assisted living and is doing well regaining her independence and allowing us to resume our lives and jobs. I still accompany her for procedural doctor appointments, surgeries, continue to manage her financial affairs, participate in providing a significant portion of her transportation services and provide medication, health and supportive care on a daily, weekly and monthly basis.
This is what my mother would want, to provide support to a family member. Hopefully, we are doing what is in my sister’s best interest for her to have a satisfying and independent lifestyle and reclaim her life.
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