Being a care giver is an awesome responsibility. As baby boomers, many of us are faced with the challenge of dealing with family dynamics that can run the gamut of possibilities. Each family has its own personality and distinct individuals. My grandmother, Ophelia Young Wallace, was the matriarch of the Wallace Clan. She was born in South Carolina. Her mother, a freed chattel slave, died when grandma was eight years old. Grandma’s elder brother, Uncle William, brought her to Florida and raised her. Grandma had four children. My mother Juanita Wallace Watts, was the eldest and last survivor of her siblings. My grandmother retired several times but remained active until her illness at age 85. My mom took care of her even though she was ill.
Mommy was diagnosed with M.S. in 1976 after ten years of physical deteriorating complications. Her leg would give away when she walked up the street or boarding the bus. She had trouble controlling her bladder. Her vision worsened. Her first serious hospitalization took place in 1976. Being the eldest, it fell on my shoulders to monitor mommy’s progress. Visiting hospitals, doctors, clinics, that responsibility was on me. When the diagnosis was finally made, it was decided that she should resign from her employment. She could no longer stand for extended periods of time.
The next step was to investigate how to secure an income and medical coverage. Social Security Disability was our first venture. She is a widow of a deceased veteran, so she is entitled to a benefit which is the grand total of $53.00 monthly. She has not received one cost of living increase in all this time. We next needed medical coverage. She had received H.I.P. coverage while she was employed; to maintain that we had to apply to New York City Medicaid. Documentation was submitted and yearly these same papers must be resubmitted for reauthorisation. Although she received Medicaid, she was not eligible for food stamps. She earned too much money.
As mother’s disability progressed, it became extremely difficult for her to travel. During the early years she ventured out on the bus to complete needed responsibilities. As mommy’s condition worsened, we were provided home attendant services. My mother has been known in our community as Ma Watts and she has nurtured so many young people. Home attendants have changed. Services were cut because of budgetary constraints. To get Medicaid one cannot own any property, have extensive bank accounts, nor insurance policies.
Although mom was disabled, she still was faithful working at Bridge Street. Daily she went and volunteered in the office. She was at Bridge Street from 1:00 P.M. until the church closes. I would take her to church on Sunday mornings at 8:30 A.M. and mommy would bring a cake, brew the coffee and prepare the office for the financial committee to tally the church’s receipts for the week. When she was unable to make it to church because of complications, many days she brought much of her work home. Our dining room table was filled with members’ church envelopes and she prepared statements that went out quarterly. My mother did this by hand until computerization. Mom worked with several ministers.
Juanita Berry has been a member of Bridge Street for well over 60 years. She is a native of Chicago and came to New York to study music at Julliard. She is a master pianist and musician. Her love is organization and young people. She is responsible for mentoring and training hundreds of youth who needed guidance and direction because they were victims of unfair treatment in their schools. Many like myself were told we were not college material and she encouraged us to aim high, dream and reach for the stars. Juanita Berry is a family member and has provided care for any and all who are in need. If anyone was in need she could call any number of church members, ministers or politicians to get something done.
Juanita Berry was quite loquacious, my mother didn’t say much, she was a silent worker bee. These two women orchestrated and worked with several organizations at Bridge Street. Their friendship has stood the test of time. Through working with Ms. Berry, I also worked with the leadership of Bridge Street, trustees, stewards, ministerial staff, auxiliary staff, lay members and with the children, we had big fun. When I married in 1972, I needed a place to live. Through Ms. Berry and Theresa King, I met my second mother, Mrs. Doris Jones. I told her she was my second mother. She had one son and I became the daughter she never had. Doris became ill and had surgery in 2005. She was placed in a nursing home and I monitored her until the Lord called her home. Her husband, Saunders, died in November 1983. Doris and Saunders bought that house in January 1972, the same month I got married. My husband and I moved in the next month and I resided there for 35 years. Any time Doris entertained, my mother and Juanita Berry were there. During the drug epidemic my youngest brother was a substance abuser and Doris was afraid to allow me to stay in her home. Juanita Berry and Mrs. King spoke on my behalf and Doris allowed me to keep my apartment. I loved that woman and we shared so much through the years.
When Juanita Berry became ill and needed surgery, she waited until we returned from vacation. That Monday, my mother accompanied her to Methodist Hospital for her surgery and she came to our house to heal. Mommy made sure she had nutritious meals, took her medicine and made all needed doctor visits. My mother made sure Ms. Berry was well cared for. These independent women don’t like to depend on anyone. Their pride is so strong they don’t allow many people to know just how they are feeling. Ms. Berry resided with us for several weeks until she got tired of my mother giving her orders; one day she said she was going home. Even then we went to the doctor with her on several occasions.
When Doris Jones’ health began to fail she worried about bills being paid. Doris was from the old school, taking the bus to downtown Brooklyn to pay her bills. When she retired from her first job she couldn’t sit home and didn’t want to go to any senior citizens center. She was actively involved in the block association and worked for the New York City Board of Education in the lunchroom for several years and retired a second time. I made sure that her pension and social security check was sent to her bank through direct deposit. Her son, Saunders Jr., was also ill. He didn’t want to visit his mother when she was in a nursing home, so I kept him informed of her progress. Doris passed May 2006 and her son died 6 weeks later while I was in Aruba. Before I left for Aruba I made sure he was admitted to hospice care. San was separated from his wife for years. She came to be with him during those final weeks.
My mother did well until she fell and broke her hip September 2006. While in Aruba I noticed mommy wasn’t moving very well and I made an appointment to take her to see her doctor. Although we had a home attendant she still cooked and cleaned for herself. This cool September morning she took out the garbage, fell and broke her hip. Things changed. I was home and at 7:30 a.m. I received the call that mommy had to be taken to the hospital. We were in the emergency room for almost 18 hours before she was admitted into a room. A nurse on staff was a minister at Bridge Street and she monitored mommy’s progress while she was hospitalized. Ms. Berry sent another angle to help me navigate and negotiate the needed forms to certify that she was eligible to enter a nursing home and the city would cover the cost. She had surgery and needed rehabilitation and therapy. When she was discharged she was admitted to Bishop Hughley’s Nursing Home.
I had to get power of attorney, take over her finances and handle all her bills. Senior citizens are prey to unscrupulous banks, contractors and businesses. I have had to monitor and take charge of her finances. Years ago, I arranged for us to have a joint checking account which she handled until I noticed checks were bouncing. She had a credit card that was charging 29% interest and I interceded and paid off several thousand dollars to clear up her accounts. We have gone to doctors only to be informed that we did not get approval from HIP. That is so frustrating. We have waited in medical offices for services for hours because medical staff from the HIP Center did not complete the documentation needed for her to receive services of the orthopedic surgeon, neurologist, podiatrist, etc.
Mommy had had two primary doctors during the last 40 years. I am the primary caregiver. My youngest sister, Vicki, returned from North Carolina to assist me once she was released from the nursing home. Thank God for my husband Tyrone who is at our side for every appointment mommy has.
The Bridge Street family has been quite supportive. Every time mommy attends service she is treated royally. She uses either a walker or the wheelchair. She is well-loved and respected at Bridge Street. Anytime she attends mutual love and respect is shown.
Frustration levels are high on the caregiver when you watch mistreatment of staff in government agencies or medical facilities. Long hours are spent in doctors’ offices without explanation or apologies. This is with medical coverage. Those without any coverage I shudder to think how they are mistreated. Any time your loved one is hospitalized or in a nursing home you must monitor everything and everybody. During mommy’s first stay in the nursing home she fell and broke her wrist. It took six hours before she could be transferred to Methodist Hospital, again another 15 hours in the waiting area before a bed could be available for admission. A cast was placed on her arm. A moving sensor was placed on my mother’s bed so nurses could be notified if she arose during the night.
Many of my friends and colleagues have served as caregivers for various relatives. We have been supportive to and for each other. We share information, strategies and tools to cope. Most importantly, the caregiver needs tender love and care provided to them. Your life is no longer your own. The demands of the person you are assisting are many and if we are not careful we will be overwhelmed and stressed out. I had to tell my husband recently, give me a break because you don’t want me to have an adjoining hospital bed next to my mom and he understands the stress. One mother can raise 10 children, but sometimes the responsibility generally falls on one person. My brother John lives in California and has sent a check to mommy to help with expenses for years and I am ever so grateful. Families need to communicate and work together to determine the best care and treatment for their loved one. Sharing the care is the best solution, but at times stress causes friction in the family. Instead of turning to each other we may turn on each other. Prayer and extended family comes in handy. Others can offer a word of prayer, a kind word, a trip to the spa or some activity that will ease the pressure. My mom is 85. We had a birthday party when she turned 80. I am so glad we did that. Mom fell a few weeks ago and is in a nursing home for rehabilitation. I hope to bring her back home in a few days and she will be attending the Adult Day Care for physical and rehabilitation therapy. Caring for the sick and/or elderly is a challenge, it is a labor of love.