A Safe Home and Dignity for Cerebral Palsy Couple
Don protégé
My parents, Alfred and Judy Cimaglia are two of the strongest people you will ever know. Please allow me to explain their story, and the difficulties they have faced and continue to face.
My father Alfred was born with cerebral palsy. He used crutches to get around but after several experimental brain surgeries’ around the age of 16, and a hip that was troublesome, he became wheelchair bond for life. My mother Judy was also born with cerebral palsy. She was able to walk with a gait until she was 52 years old. At that point, she suffered a spinal cord injury and needed neck and spinal cord surgery which left her wheelchair bound and unable to care for herself. Their story is one of love and triumph against all odds. In the 1940’s, medical and social understanding were not where they are today. My grandparents were given minimal hope for the quality and length of their children’s lives. Despite the odds, they persevered to make a life for themselves. They met at a United Cerebral Palsy dance and their courtship began. They dated, got married, against even their own family’s wishes. They obtained driver’s licenses, raised three children, and celebrated 9 grand-children. This August, they will celebrate their 52nd Wedding Anniversary. Their lives have been one long up-hill battle and they have reached the respective ages of 77 and 72. It is safe to say that my parents have proved many doubters wrong.
Growing up on-lookers would have sympathy for my parents, but they never wanted sympathy. What they wanted was for others to respect them enough to listen to them and realize that they were physically limited but mentally capable of all of life’s situations. I can remember them taking me to doctor’s appointments or going to parent teacher conferences, where the professional would address me and not them, often speaking louder when speaking to them. From the outside, it would appear that they were struggling to survive, but if you were to speak to my parents, they would tell you their lives have been a blessing. They have what all of us want- love, family and friends. I’ve always believed that their disability has made them able to truly appreciate what is important in life.
Life was never easy, they raised us on federal and state funded disability, housing, and food assistance which added together was still below the poverty level. This was no small feat, it meant shopping only sales, cutting coupons, buying slightly out of date and damaged goods and most importantly sticking to a strict budget. My parents ensured we were clean, our clothes were ironed, our shoes were polished, and we went to church every Sunday. Mom and Dad never complained that there wasn’t enough. And when possible they were even able to assist others in need. We were taught the value of hard work and respect. Looking back, we had all we needed, and they did the best they could.
Nineteen years ago my mother was rendered wheelchair bound due to a spinal cord compression. This was difficult to accept for someone that against all odds managed to care for and raise a family. She was now dependent on home health care.
About 13 years ago, I moved my parents into the first floor of my home so my wife and I can assist them and they get to see and enjoy their grandchildren. I renovated the first floor of the home to make it accessible to my parents needs, at that time. Unfortunately, those renovations no longer meet their needs. Their wheelchairs are larger and the doorways are too narrow to accommodate them without continued damage. The bathroom is too small to turn around making transfers to the toilet and the shower is extremely difficult and dangerous because of the risk of slipping and falling.
During this time my dad’s cerebral palsy has taken a toll on his body, especially his right leg, causing debilitating pain. His femur is out of the hip socket and grinding out a new unusable socket. Due to spasticity related to his cerebral palsy, a hip replacement is not an option. In November, he was diagnosed with stage 3 esophageal cancer and was hospitalized and then sent to a rehab facility for about 5 months from November to the end of April. For years, the agency that is assigned to help my parents treats their cases as a single unit, though they are individuals with separate care needs. We have previously expressed our frustration with this, but nothing ever came of it. Ultimately, they were given 7 hours a day each for a total of 14 hours. In most cases the home health aides assigned, cared for both of their needs during that time. My father remained fairly independent so it made it easier on them. He also struggled with giving up his independence and additionally was too proud and embarrassed to have a female attendant care for him personal needs. The agencies do not allow a male aide alone in the home with a female patient, and they won’t allow two aides in the home at the same time, so there was never a solution to this problem. When my father went into the hospital they put my mother’s hours down to 7 hours daily, which ensued a battle for us to fight for more hours as she could not care for herself the other 17 hours a day. During the time my dad was out of the home, my mother fell on two occasions and on another was trapped in her bed railing while trying to use the bathroom during the night. Her screams of pain awoke me and I rushed to free her from the railing. She was admitted into the hospital for an infection in her leg caused by an open wound from falling.
During my father’s rigorous chemo and radiation treatment, we hoped and prayed for a positive outcome. Our prayers were answered and on his last scan, it appears that the cancer is in remission. Getting him home was our next challenge. The home is just not set up for long term care. Even as he has swallowed his pride and allows for care, there is not enough space to help him transfer safely and he is forced to use a diaper when I am not available. The shower is not an option either unless I climb into the shower and transfer him.
Recently, there have been social workers and therapists that have visited the home and have expressed their need for a safer environment. The therapists agree that they could continue to live in a home that was setup and equipped for their disabilities. There is just not enough funds or know how, for us to make this happen. I am hoping to get an experienced contractor that is familiar with building a safe and accessible bathroom, kitchen and bedrooms for them.
Asking for this help is difficult because my parents have always taught me that hard work, effort and commitment can get you all of the things you need. I know that I could try to make their lives better in small increments but it would take too much time, and I just do not have the experience to provide what they need. With all of the struggles and challenges that they over came to make life possible for me, I want to help them in any way I can and I worry everyday about their safety. They can no longer overcome these challenges on their own and my love for them makes it difficult to watch them struggle. I am asking for your help to make this possible. Please help me to allow them to remain together, in their home, safe and with their dignity intact.
Thank you in advance, and may God Bless You.
My father Alfred was born with cerebral palsy. He used crutches to get around but after several experimental brain surgeries’ around the age of 16, and a hip that was troublesome, he became wheelchair bond for life. My mother Judy was also born with cerebral palsy. She was able to walk with a gait until she was 52 years old. At that point, she suffered a spinal cord injury and needed neck and spinal cord surgery which left her wheelchair bound and unable to care for herself. Their story is one of love and triumph against all odds. In the 1940’s, medical and social understanding were not where they are today. My grandparents were given minimal hope for the quality and length of their children’s lives. Despite the odds, they persevered to make a life for themselves. They met at a United Cerebral Palsy dance and their courtship began. They dated, got married, against even their own family’s wishes. They obtained driver’s licenses, raised three children, and celebrated 9 grand-children. This August, they will celebrate their 52nd Wedding Anniversary. Their lives have been one long up-hill battle and they have reached the respective ages of 77 and 72. It is safe to say that my parents have proved many doubters wrong.
Growing up on-lookers would have sympathy for my parents, but they never wanted sympathy. What they wanted was for others to respect them enough to listen to them and realize that they were physically limited but mentally capable of all of life’s situations. I can remember them taking me to doctor’s appointments or going to parent teacher conferences, where the professional would address me and not them, often speaking louder when speaking to them. From the outside, it would appear that they were struggling to survive, but if you were to speak to my parents, they would tell you their lives have been a blessing. They have what all of us want- love, family and friends. I’ve always believed that their disability has made them able to truly appreciate what is important in life.
Life was never easy, they raised us on federal and state funded disability, housing, and food assistance which added together was still below the poverty level. This was no small feat, it meant shopping only sales, cutting coupons, buying slightly out of date and damaged goods and most importantly sticking to a strict budget. My parents ensured we were clean, our clothes were ironed, our shoes were polished, and we went to church every Sunday. Mom and Dad never complained that there wasn’t enough. And when possible they were even able to assist others in need. We were taught the value of hard work and respect. Looking back, we had all we needed, and they did the best they could.
Nineteen years ago my mother was rendered wheelchair bound due to a spinal cord compression. This was difficult to accept for someone that against all odds managed to care for and raise a family. She was now dependent on home health care.
About 13 years ago, I moved my parents into the first floor of my home so my wife and I can assist them and they get to see and enjoy their grandchildren. I renovated the first floor of the home to make it accessible to my parents needs, at that time. Unfortunately, those renovations no longer meet their needs. Their wheelchairs are larger and the doorways are too narrow to accommodate them without continued damage. The bathroom is too small to turn around making transfers to the toilet and the shower is extremely difficult and dangerous because of the risk of slipping and falling.
During this time my dad’s cerebral palsy has taken a toll on his body, especially his right leg, causing debilitating pain. His femur is out of the hip socket and grinding out a new unusable socket. Due to spasticity related to his cerebral palsy, a hip replacement is not an option. In November, he was diagnosed with stage 3 esophageal cancer and was hospitalized and then sent to a rehab facility for about 5 months from November to the end of April. For years, the agency that is assigned to help my parents treats their cases as a single unit, though they are individuals with separate care needs. We have previously expressed our frustration with this, but nothing ever came of it. Ultimately, they were given 7 hours a day each for a total of 14 hours. In most cases the home health aides assigned, cared for both of their needs during that time. My father remained fairly independent so it made it easier on them. He also struggled with giving up his independence and additionally was too proud and embarrassed to have a female attendant care for him personal needs. The agencies do not allow a male aide alone in the home with a female patient, and they won’t allow two aides in the home at the same time, so there was never a solution to this problem. When my father went into the hospital they put my mother’s hours down to 7 hours daily, which ensued a battle for us to fight for more hours as she could not care for herself the other 17 hours a day. During the time my dad was out of the home, my mother fell on two occasions and on another was trapped in her bed railing while trying to use the bathroom during the night. Her screams of pain awoke me and I rushed to free her from the railing. She was admitted into the hospital for an infection in her leg caused by an open wound from falling.
During my father’s rigorous chemo and radiation treatment, we hoped and prayed for a positive outcome. Our prayers were answered and on his last scan, it appears that the cancer is in remission. Getting him home was our next challenge. The home is just not set up for long term care. Even as he has swallowed his pride and allows for care, there is not enough space to help him transfer safely and he is forced to use a diaper when I am not available. The shower is not an option either unless I climb into the shower and transfer him.
Recently, there have been social workers and therapists that have visited the home and have expressed their need for a safer environment. The therapists agree that they could continue to live in a home that was setup and equipped for their disabilities. There is just not enough funds or know how, for us to make this happen. I am hoping to get an experienced contractor that is familiar with building a safe and accessible bathroom, kitchen and bedrooms for them.
Asking for this help is difficult because my parents have always taught me that hard work, effort and commitment can get you all of the things you need. I know that I could try to make their lives better in small increments but it would take too much time, and I just do not have the experience to provide what they need. With all of the struggles and challenges that they over came to make life possible for me, I want to help them in any way I can and I worry everyday about their safety. They can no longer overcome these challenges on their own and my love for them makes it difficult to watch them struggle. I am asking for your help to make this possible. Please help me to allow them to remain together, in their home, safe and with their dignity intact.
Thank you in advance, and may God Bless You.
Organisateur
Eugene Cimaglia
Organisateur
Westbury, NY