Hi. My name is Joanna Snyder and I am in Dallas, Texas. I read your story on the Internet under the web site Caregiver Network, Inc. I too am a caregiver. I have kind of a unique situation, although I'm finding out that every situation is different. I am 38 years old and the only child to two elderly parents who are 76 (mom) and 77 (dad). I am married to a wonderful man who is like a big kid himself and we do not have any children. Caregiving for my family has always been my role because it is not my husband's forte.

I guess what I have been needing is to find a website and a group of people like this. I have wanted someone to talk to someone and no one seems to want to listen, or the ones who have either don't know what to say or are tired of hearing about it.

My role as caregiver began in 1994 when my mother & father moved into my home. My father's health problems began when he had open-heart surgery in 1987 and had to retire. He was a truck driver and he did not take care of himself. He was diagnosed with diabetes shortly after surgery. But my dad can be and is very stubborn and he refused to take insulin until approximately 1992. Well by then the damage had already been done to his nerves in his eyes and he was slowly losing his eyesight. It finally took him hardly being able to see at all and backing into a woman in the grocery store parking lot to convince him that he needed my help. At the time I did not consult with a doctor or social services so consequently the option of assisted living never came up. My mother does not drive and is like a child herself, so I did not want to have to drive across town every single day for them. I took charge and thought it best to have them come and live with me. My husband went along with it but he was not thrilled. He and my parents are two different sets of people. But yet we all managed to live together until they went into a nursing home in October, 1998.

During the time my parents lived with me, my dad's condition declined and my mother's osteoporosis steadily got worse. My dad had 3 strokes, one of them really severe that left his right side weakened and one that affected his swallowing. He was in the hospital for 3 months recuperating and he had to be fitted with a stomach feeding tube because he would not eat. I am the only child, so all of the care is left to me. However, I did try to contact his brother and two sisters during that time. His brother has been very supportive but his two sisters have not even bothered to write a card or give him a phone call. It has only been recently that one of his sisters did finally come out and visit him in the nursing home. My mother is the last one to survive in her family out of her 4 brothers and sisters.

During the time that my parents lived with me,I received a whole new education. I learned to work with home health care and had a stream of people coming in & out of my house all the time. It was helpful most of the time. However, I still had to do some of the medical things myself, like overseeing medicines and doing the tube feedings because Medicare would not pay for the agency to come out but once a day. This meant that I had to be home every evening by a certain time or hire someone to come in. I could not just do something at the spur of the moment. Both my mom & dad received help with their baths but my mom's was not always covered by Medicare and sometimes had to be paid for directly because she was not sick or disabled enough. We also received information about public transportation for the handicapped, but that was a fiasco because at the time my father asked for it, he was only partially blind and not handicapped enough. So some things were helpful and others were not.

I can relate to everyone's pain and anguish bearing the burden of taking care of your loved one. When you have children, at least you can ask someone to help you or hire a babysitter. When you are a caregiver, you can't ask your friends or your well-meaning churchgoing family to help you because they don't want to get involved. They are afraid someone will fall or die on them and the caregiver will sue them. Sometimes, you really are the only one that can care for your loved ones. You can hire people, and I did, but it really costs a lot of money.

My father has become a different person since he entered the nursing home. He fell a couple of weeks ago and fractured two vertebrae in his back. Since then he has refused to eat and refuses to cooperate with the staff to go to therapy or to take a bath. He becomes combative and tries to hit them or curses at them. He also repeats himself and forgets what you just said 10 minutes later. They tell me he does not have Alzheimer's although the doctors have tried several antidepressants. Their solution is to throw a pill at the problem. His brother says he is acting just like their father did when he was in a nursing home before he died. My dad can be so stubborn. Sometimes I just want to throw my hands up in the air.

My mother, on the other hand, has benefited greatly from being there. She is getting more services now since she is on Medicaid. She has a new wheelchair, new glasses and a hearing aid and she likes to go to activities such as bingo and church services. It also helps that she still has her mind and that she is easier for me to take out than my dad is. I am going to have to hire someone to help me take him out because he is so heavy and difficult to move.

Even now with my family in the nursing home, I still have to call the staff daily to make sure things get done or they won't. Thatís part of the reason my dad fell, because I was not watchful enough about his shoes. The day to day has become easier for me, essentially because I don't have it to deal with anymore. However, your caregiving truly never stops until they die because no one cares about your family the way that you do.

Again,I just want to say thanks for your web site. I have found someone else who feels as I do. Thanks for letting me share.

Sincerely, Joanna Snyder, Dallas, Texas USA

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