Karen Mintz starts Web site after losing father.
By: Sarah Winkelman
LAMBERTVILLE The loneliness and isolation can be overwhelming for people caring for a dying friend or relative.
Many times friends don’t understand the stress and emotional pain.
That’s where CaringRoad.org comes in.
The Web site and online network, founded by Lambertville resident Karen Mintz as a tribute to her father, allows people to search a database to find other caregivers and people going through the loss of a loved one.
Each relationship and illness is different and produces different emotions and problems so people can search by their relationship to the patient, be it a parent taking care of a sick child to an elderly woman taking care of her husband or by type of illness or geography.
The site is devoted to helping the 54 million Americans who provide care for a loved one at home. Ms. Mintz hopes to build a large network people can refer to in a time of need. She decided to start the Web site support system after doctors were unable to diagnose her father’s illness.
The Web site was launched on what would have been his 75th birthday, Nov. 17, 2001.
Putting the site together helped her deal with her grief, and she hopes it will be beneficial for others.
"Since doctors were not able to diagnose his illness, we couldn’t go to a support group," she said. "We missed out on meeting other people going through the same thing we were going through. We missed out on forming that bond."
She said it is imperative to build a network of friends when going through a loss. The network of people you have created a bond with will make it easier to deal with the loss, she said.
"No one can have too many friends," Ms. Mintz said. "The more friends you have at a time like this, the better. The support groups allow people to share tips, inspiring stories and how to manage the day-to-day existence of caring for someone who is ill."
This is what Ms. Mintz is hoping to accomplish with her online network.
"I feel like this is putting the Internet to its best use," she said. "You can reach out to people all over the country."
Ms Mintz said when her father first became sick there was very little information on caregiving on the Internet. She did manage to find some corporate sites, but they tended to be limited in their information and did not "speak to her." Many of these sites also required a password and log-on information she thought some people might not want to disclose. She wanted to provide free information to people who might be scared or confused about what their loved one is going through and needed information quickly.
She also wanted to make the Web site easy to navigate while providing just enough information to get people started thinking about the road ahead.
Her father, Ira Mintz, died in 1999 and had been bedridden since 1996. He started showing signs of illness in 1993, beginning with memory problems and a loss of balance and coordination, which got progressively worse as time passed. To this day, doctors still are not sure what he died of. Ms. Mintz’s mother, Nancy Mintz, was the primary caregiver, but Ms. Mintz’s brother and sister also were involved.
While coping with her grief, Ms. Mintz decided to put together the Web site as a way to channel her energy into something positive. She had amassed a large quantity of information over the years when she was caring for her father, who had been a psychiatrist before his illness.
"He was so used to taking care of people that I know this Web site, which is aimed at helping people, would have made him happy," she said.
There are a lot of things that are involved in caring for a sick person she did not know about.
"You need to be aware of every possible consequence of every decision that is made," she said. "Every decision affects all the family members as well as the patient. It is imperative that these are taken into consideration, which is hard to do when you are trying to deal with the roller coaster of emotions that dealing with a loss entails."
Ms. Mintz stressed how important it is to be well-informed about decisions and the treatment being provided. She said she was not prepared for the decisions she was expected to make regarding her father’s declining health and found the task of negotiating the maze of legal, ethical and medical options traumatic.
"It is the doctor’s goal to present all the options to family members but not necessarily to offer opinions on what might be best," she said. "A lot of times family members are so overcome with grief that they do not ask the right questions and are not prepared to accept all the information given to them."
It also is important to prepare for what’s down the road, she said. Know what options will be available and what you want to do so when the time comes, you are well-informed and feel good about your decisions. This will take some of the pressure off, she said.
"If you have the time to think them through, it makes things a lot easier," Ms. Mintz said. "Sometimes the circumstances under which decisions are made can make you feel at peace if they are done when you are relaxed and not when you are grief-stricken."
On her Web site, there are questions to ask your doctor so you can get the most information possible and have a better understanding about what’s going on. She recommends asking a lot of questions, especially the difficult ones.
There also is a legal section that explains living wills, among other things, in layman’s terms.
"It is important to have a ‘Do Not Resuscitate’ order if the patient wants it, because a lot of times there are family members with there own agendas," Ms. Mintz said. "It is good to sort everything out beforehand so feelings don’t get in the way later."
Ms. Mintz wanted to have as much information as possible on her Web site for people who might not have time to do the necessary research elsewhere.
"People who are dying are on their own time schedule," Ms. Mintz said. "Their loved ones might not have time to do research into the illness or prepare themselves for its consequences. Once the illness starts, it’s like a roller coaster ride and everything is going too quickly. You might not be ready to deal with it when the time comes, but that’s the problem; there is never enough time."
During the course of her caregiving, Ms. Mintz found the experience was teaching her to value life more.
"It was a real eye-opener into reality," she said. "I re-evaluated my priorities, and I don’t take as much for granted. What is really important stands out at the top."
She also realized time with your loved one is of the essence.
"When someone you love is ill, you want to do what is important and not deal with the daily crises," she said. "You want to be able to sit and talk to them, spend time with them and just make the best use of the short amount of time you have with them."
That is why making important decisions when you are in the right frame of mind can help immensely.
"If all the decisions can be made ahead of time you can be more relaxed and present with the person," she said. "You know they are taken care of, and everything is set out."
The nurses that came once a week to help her father were integral in the formation of the Web site. They provided helpful tips on how to move a person from a bed to a wheelchair and other things that make in-home care more comfortable for the patient and family.
Ms. Mintz hopes to add video demonstrations to the Web site on how to make a bed with a person in it, give a sponge bath in bed and move a person larger than you from a bed to a wheelchair. She believes had her mother known these simple tricks she could have moved him herself.
There also is a section of the site that features yoga tips and other relaxation techniques to help relieve stress and tension.
"How can you help other people if you are burned out yourself?" Ms. Mintz said.
The Web site took about a year to put together, she said, and is still a work in progress. There is a lot she wants to add, like the videos. With her background in editing, producing and writing documentaries, educational programs and commercials, making the videos should not be a problem. She has won two Emmy awards for her work.
She would love to receive e-mails with suggestions on how to make the Web site better and also caregiving experiences that she can post as inspiration to others.
The Web site address is www.CaringRoad.org.