Seniors and People with Disabilities
Caregivers Coalition :: Hope and Heart: Personal Stories
Caregiving for Many: Carmela Slivinski
Meet Arlene and Her Dad, Shep
Meet Frank, and His Daughter, Maria
Caregiving: The Perspective of a Grandson
Caregiving for Many: Carmela Slivinski
Excerpts from remarks made at United Way's Annual Meeting
When did you realize that what you were doing actually had a title? "Caregiver..."
For me that memory is etched forever in my mind. It hit me when I was helping my mom get out of bed one day and she looked into my eyes and said "thank you!" I never forgot that look on her face, the intensity of her gaze, and the sincerity in her voice for helping her. My mom struggled with cancer for 5 years, and until the very end ensured all of us that she was going to get better. We lost my mom last year at the age of 66. Along with my dad, I was her caregiver.
In 1991, my husband and I thought our lives could not be more perfect. We had a beautiful little boy who was smart, charming, and the apple of everyone's eye. Then, 5 days before Christmas, our little girl was born. What more could we ask for?
Francesca was a pretty little girl with a beautiful name to match. It was the most wonderful Holiday season of our lives. Yet, everything changed when Francesca began experiencing grand mal seizures.
At first, no one could explain to us what was happening. No one used the word "seizure disorder" for the first few months. We had no idea what to do, where to turn, what kind of help we needed, or even what questions to ask.
There are over 44 million caregivers nationwide, (and over 50,000 in Morris county) and most have a similar experience – when you are thrown into a situation and you have no idea where to turn. You are in un-chartered territory and the systems in place are not user-friendly, especially for those with no experience.
Our lives became a series of doctors visits, evaluations, meetings with therapists, psychologists etc., to get Francesca the help she needed. Who we were as a family was centered on what Francesca needed. My son, Tommy, learned to deal with driving thousands of miles over the course of many years to see the professionals that could hopefully help. No one was exempt from the task at hand. Get some answers, get the best help, and work with the educational system to try to avoid delays in development.
None of us make a conscious decision to become caregivers, regardless of whom we are caring for: parents, siblings, children, spouses; it is an unavoidable situation that we all encounter.
Caregiving defines you. It is who you are. For me, I will be Francesca's caregiver for her entire life as long as I live.
It took me over 7 years of caregiving to understand how things work, to feel comfortable with my understanding of the system. When I decided to go back to work, I wanted to share my experiences so maybe other families could have an easier time of it.
I walked into the offices of DAWN Center for Independent living in 1999 and applied for a part-time position providing information and referral. It became apparent to me very quickly that the philosophy that DAWN and all other Centers live by is inline with my core beliefs and values.
As I began my adventure raising Francesca, I could not understand why people with disabilities were treated differently, why others had such low expectations when talking about the potential and future of an individual with a disability, why is it acceptable that an individual can't access a service simply because they are in a wheelchair, why employers believe that by hiring a person with a disability, they will need to lower expectations.
Each day Centers for Independent Living across the country advocate to overcome these obstacles to inclusion. The goal of all Centers is to assure the full integration of persons with disabilities into the mainstream of society to the greatest extent possible, based on each individual's abilities and wishes.
Two years later, I took on the role of Executive Director at DAWN. My parents actually moved to live with us and help provide the support Francesca needed so I could take on this new position.
Shortly after I took the position, my mom was diagnosed with cancer. So their move to be closer to us to offer us support was a blessing in disguise; it actually allowed me to be very involved in my mom's care. For 5 years, we supported each other though all of the highs and lows. When my mom passed away, I was at peace that I was able to give her and my dad the support they needed.
During that time, Francesca hit a major set back. Her seizures, which had been controlled with medications, came back with a vengeance and in spite of all the treatments, and research into potential surgeries, we are still unable to gain control.
Because of this, Francesca lost many milestones and is so heavily medicated that the happy go lucky little girl she was is trapped inside. Everyday is a challenge but we continue to try new treatments in the hopes that we can get our little girl (who is now a young lady) back.
And so, when United Way's Caregivers Coalition began, I became involved because I was impressed by what they were doing. I knew this group of people could relate to me and I wanted to be a part of this wonderful initiative.
Caregivers are often the forgotten ones. Typically, a caregiver is so focused on the person they are caring for that they forget about themselves. Their health declines, their sense of being is skewed...they need to be connected to others that are experiencing the same challenges. The Coalition is helping.
I am very proud to be a part of the incredible work the Coalition is doing. I hope you will all support the Caregivers Coalition of Morris County, which is making strong strides in reaching and supporting those who care.
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Meet Arlene and Her Dad, Shep
Arlene Nussbaum: Excerpts of remarks made to Caregivers Coalition of Morris County
My Dad, 88, is Solomon, but everyone calls him Shep. He is the last remaining of seven sisters and brothers, and the father of four, grandfather of eight, and great-grandfather of seven. I never thought of myself as his caregiver until April, 2004, when I was invited to join a monthly caregiver's support group. Until then, I thought I was just being a daughter, doing what daughters do.
I helped Dad take care of my Mom from 1982 to 1989, when she was dealing with all the surgeries, treatments, emotions, and devastation that go along with cancer. She had always been the rock, the family glue. When she passed away, our journey with Dad began.
At that time, he lived in his own home, drove, shopped and cooked, took the bus to Atlantic City, and visited our home on his own and often. He did a pretty good job with the daily tasks of living, but had few social interactions, other than his weekly trips to the bank to have interest posted.
In his day, he had been the breadwinner, an accomplished artist, an inventor, an electrician…a most talented and skilled man. He was my Dad.
The deterioration became obvious when he became lost coming to my house, wasn't eating properly, had a series of fender benders, and stopped taking his meds regularly.
"Caregiving" in the mid 1990's meant trying to convince him to sell the house, and to stop driving. We did the one hour round trip several times a week to go food shopping, take him to doctors, organize his medications for the week, leave helpful notes all over the house. We made reminder calls all during the day, and worried a lot.
Today, Dad lives on his own in a "55 and over" building nearer to us. While the geography is easier, his needs are infinitely greater: emotionally, financially, medically, and simple day-to-day care. He may live with independence and dignity, but the "behind the scenes" care is huge. We shop, provide transportation, manage piles of paperwork, pay bills, help with breakfast and dinner, dispense pills, do laundry, trouble shoot, advocate. We are available 24/7. I sleep with my cell phone next to me.
Dad attends day care five days a week where he enjoys a variety of activities, and is surrounded by very special people. He tells everyone that he designed the center and did all the wiring. (Of course, he could have in the past.) He is mostly unaware of things that are behind closed doors or in drawers, prefers to eat tea and cookies around the clock, has a thing about lampshades, and major issues concerning fantasy and reality.
People meeting him think he is in his 70's and are not aware of his dementure issues.
They say, "It takes a village to raise a child." I say, "It takes an army to support a senior." I guess I'm like the general in charge of the battle plan. The troops, whether recruited or volunteers help win the battles of daily living. The patience and understanding they bring into combat influence the many small victories. Like any war, you never know how long it will last, what you will face tomorrow, or how it will end.
Unlike most generals, I do not want medals. I am proud to fight the fight to keep Dad safe and happy. I am thankful for all the help I've received and the generosity and understanding of so many people.
The saddest thing for me right now is that Dad lives only in the moment. You cannot tell him anything in advance, and he has virtually no recall. Prompting only agitates him. He cannot look forward to family events or have any notice that we're coming to pick him up. He thrives on routine. When asked how he feels he says "great," and when asked him about his life, he says he is happy.
One thing he can do is make choices, simple as they may be. I think it is empowering for him to be consulted as to whether he wants meatloaf or turkey, pancakes or waffles, to wear this beige shirt or THIS beige shirt. I know that if he had a choice, he would not choose this affliction.
Learning to be a caregiver is not easy. I don't want to be his mother and he doesn't want to be treated like a child. After all, this is the man who taught me how to drive, how to bait a hook, row a boat, spackle a wall. He was my role model in choosing a husband.
Today, my Dad knows who I am. Our dialogue is limited and predictable. He tells me he loves me all the time and I get to say, "I love you, too!" He always says, "Thanks, Arl" when I leave, and I always say, "Don't mention it, Dad." When I say, "Dad, do you want to go for a ride?" he says, "sure thing" and I say, "how soon can you be ready" and he says, "five minutes" and I say, "See you then" and he says, "Right-o!"
When my brother from Tucson calls Dad, just five minutes after my son has left after giving him breakfast and taking him for a drive, Dad says nobody has been there yet today.
But then he says he feels great and everything is fine.
It my situation, there is one important reality. It will never be better or easier than it is today. Having my Dad is a responsibility and a joy. It means I am still someone's daughter. It means he is My Dad!
– Arlene Nussbaum
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Meet Frank, and His Daughter, Maria
Our life changing moment came on March 2nd, 1998, when Maria was struck by a vehicle and sustained a severe brain injury. In an instant Maria went from a soon to be teenager full of promise to a young girl facing a possible loss of life and a life full of the challenges of needing the support of others to accomplish simple tasks.
The medical issues lasted a little over two years. Once medically stable the issue was how to maximize Maria's potential.
As a young person with disabilities we learned Maria was entitled to educational supports under IDEA: Individuals with Disabilities Education Act. All persons with disabilities are entitled to a Free Appropriate Public Education.
We learned that, by law, in addition to a specific and individualized education plan for an extended school year, Maria could have a one on one aide. Additionally, Maria was entitled to necessary therapies such as speech, physical, and occupational therapy in order to be successful as a student.
It was not a slam dunk but knowing the obligations the public school system has to persons who are born with a disability or who become disabled prior to graduating from high school was a tremendous benefit. It allowed us to advocate for Maria and go to mediation if necessary for Maria to receive a Free and Appropriate Public Education.
The school systems obligations to Maria ended at the end of the school day. We had the option of having Maria being placed in a residential facility but we believed and still believe "there is no place like home."
To have Maria home we realized quickly we needed help. We registered Maria with the Division of Developmental Disabilities (DDD) and applied for every program which could assist the family meet Maria's need for assistance with personal care, safety, and supervision and, more importantly, assist Maria in her recovery.
Because of Maria's 24/7 care needs, we made a decision many families are forced to make...either mom or dad had to drop out of the labor force. Even with a parent at home there was a need for Maria to receive specialized services and supports as well as assistance with personal care.
All persons who are born with disabilities or who become disabled prior to age 21 who require assistance to remain independent may be eligible to receive support services throughout their life from DDD. In addition to programs and services available through DDD we searched out activities for Maria to participate in and enjoy. It was very important that the isolation Maria and the family faced because of her injury did not overwhelm Maria or the family.
We turned to support from family, friends and neighbors as well as our church. We joined an online support group for both information and support. We joined the major disability service organizations to become aware of recreational opportunities as well as programs, services and advocacy issues. The main organizations we joined in addition to The Brain Injury Association are UCP, The ARC, and DAWN, the local center for Independent Living.
We also started our own non-profit to work on advocacy issues as well as to reach out to others and provide an outlet for Maria to use her creative talents.
It was not easy and the challenges are always with us but today Maria is in her own apartment through a DDD program called Real Life Choices. The staff she needs to live independently comes from The Real Life Choices program as well as from Medicaid and a state program called PASP.
There are still many gaps in services and empty spaces in Maria's schedule that are being filled by Mom and Dad. But Mom and Dad will not be around forever.
We therefore continue to network, continue to advocate, continue to work towards the goal of Maria living the life she chooses in her home and the community. It is a struggle and a challenge all parents with a child with a disability who will need supports throughout his or her entire life face daily.
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Caregiving: The Perspective of a Grandson
David Cramer: Excerpts of remarks made to Caregivers Coalition of Morris County
My name is David, I am 18 years old, a senior in high school, and I am a caregiver for my grandmother. I come from a large family, with many cousins, aunts, and uncles (one of my great grandfathers was one of 18 children.) We live next door to my Uncle Bill and my grandmother, whom we call Nana. She is my dad's mom.
Today, I am speaking to you about my role as a caregiver from the perspective of a grandchild, because I am sure there are many grandchildren around Morris County who also assist their families in the role of caregiver. We grandchildren play a very important role in helping give care to our elderly and disabled relatives.
Let me begin at the beginning. My grandmother has always lived next door to us, in a home she has lived in for 50 years. So, she knew me and helped my parents care for me from the day I arrived in this world.
I remember her babysitting me, my brother, and sister, and even remember her driving us to day care when we were small. Whenever I was in the car with her, she called me her "co-pilot." She is an excellent cook, with specialty meals of roast leg of lamb, and a special cucumber salad we have named "Cucumbers Anastasia" after her. She used to take us to annual family picnics in West Orange to connect with 30 others cousins. Her nickname for me was "Skippy."
We always had fun when I was young, but Nana could also embarrass us. I remember one time, especially, when she came to school on "Grandparents Day." When we got home, my brother, who was in 8th grade at the time, was so angry because Nana had gone into his class and said, "You are all such wonderful and nice children." Then she went around and gave every child in the class a kiss. Boy, my brother was embarrassed.
I remember Nana always being there for us, attending school concerts, sporting events, and our science fairs. She volunteered at the Morristown Rehabilitation Center and I remember going with her to do patient visitations. I remember her marching in the Veterans Day parades, dressed in her Navy Auxiliary uniform.
In 1979, Nana was hit, as a pedestrian, by a car going 50 miles per hour. She was in a coma, broke 11 bones, and was hospitalized for over seven months. She had a number of permanent injuries.
As a result of the coma, she now suffers from vascular dementia. She has also developed thyroid and heart problems. She has a steel bar in her left arm, and a pacemaker.
I have always known my Nana as feisty, active, independent, and involved in many activities. In recent years she began to have a series of mini-strokes, falls, and infections that landed her in the hospital 16 times in the last four years. The police and ambulance workers know her on a first name basis.
It has been rough to see her health fail. I know that she used to be very involved in her church, town organizations, and veterans organizations. Now, she not only is NOT involved, she doesn't even remember she WAS involved. It is sad that she has been on vacations with our family, her friends, and my uncle and she remembers none of it. It is sad to see this, but I feel good that I am so involved in helping her.
My caregiving began with my uncle asking us to baby-sit Nana for a while. She could not be left alone. Because of severe osteoporosis, she cannot walk alone AND because of the dementia and strokes on the right side of her brain, she cannot REMEMBER that she cannot walk alone. Thus, someone must be with her at all times.
When we eat out, and she used to go with us, we would sit on either side to cut her food, help her put her food on her fork, and hold her glass to drink. We would always help her walk, one on each side of her.
The amount of caregiving I and everyone in our family gives has increased greatly over the past year. One time, when the ambulance was called for her first stroke, I assisted my uncle in laying her on the floor, assisted the paramedics in holding her IV, and kept talking to her to reassure her everything would be alright. I regularly help bring her upstairs, feed her, and help her to the bathroom. I sit with her, having a conversation (only one way at times), tell her funny stories, and try to get her to laugh. I ask her to be my "Snooper-visor" while I mow the lawn. I sit her on her chair in the backyard and she watches me. I feel that things like that make her feel important and that she is still involved in family activities.
Why I caregive is because my grandparents are family, and family is important. I have seen what my uncle and father do for their mother, and what my mother does for her parents. My brother, sister, and I have learned from their example. I caregive because it is the right thing to do. I learned this from my family, my school, and my church. Not only does our family help, but so do the neighbors, the church choir members, and the veterans organizations. Other seniors help, and so do Nana's friends from school. What this has taught me is that my Nana has always been a giving and caring person, and now many people are giving and caring back.
I feel that caregiving is important because it helps a person live a longer, happier, and better quality life. My Nana has had a better quality of life during these past four years because we have been so involved in helping her. I am proud of that.
I would like everyone to know that, from my perspective, it is important to teach children the importance of caring for others. My father and uncle helped Nana take care of her mother, my great grandmother. We are helping my father and uncle care for my grandmother. Caregiving is something anyone can do, and it has become a regular part of my life.
Thank you very much for allowing me to speak with you today.
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