Alzheimer Patient Meets Karen In NYC

They call me Karen, and I take care  for my 47-year-old husband Ben Taffer. Ben was diagnosed eight years ago with Mild Alzheimers at the age of 38. Based on this new information, I found myself as the caregiver and advocate for this disease.

My husband Ben also has some dementia. This means it must run in his family’s blood-line because his grandmother suffer from the same illness. He lost his dad and sister to this illness nine years ago. My brother-in-law was 72 when he died from the same illness in June of 2014.

The horrible genetics of this illness has pushed me to raise awareness of the crippling effects and tell my story to the world. Because this illness starts with people over 55, not enough is done by the government or universities as far as research and funding. The average person does not know that this illness can also touch younger people as well.

My ex-husband, Jerry,  is an amazing man and great father. Unfortunately, he is in the early stages of this illness. This means he can’t do many things for himself and I need to help him. It’s a good thing we’ve been blessed with five fantastic aides that care for him night, days, and on the weekends. This allows me toI can get errands done and spend time with my children.

My kids were 5 and 11 when Jerry was first diagnosed. Telling them was one of the toughest days of my life. Even though my ex knew what was going to happen to him, upon diagnosis, he was only concerned with how things would affect me and the kids. He never whined or had the “poor me” attitude. He is the most unselfish person I know.

Our five wonderful children are “co-caregivers.” They know Jerry’s schedule and his needs as much as I do. They are now 16 and 22 years old and have grown into wonderful and smart people. My daughter is doing very well in her honors program in high school, and my son will graduate from tenth grade next year. While this illness has created havoc for the entire family, our story is proof that love can prevail.

We first told the kids as much as they could handle for their ages. We explained that Dad had an illness in the brain and nervous system, and that if he said or did something that wasn’t right, it was the illness causing him do it. We tried to help them understand better by saying that if someone had n illness that affected their arms, they would shake hands in a weird way.

We have gone through a lot over the past seven years with Jerry. He was hospitalized for eight weeks in 2014 for his anger and stress. Since then, he has been rushed to the hospital ten more times for various medical things, like: infected gallbladder filled with gallstones; dehydration; pulmonary embolism and DVT; and most recently, he almost drowned. My children know the staff at the local hospital very well.

We have told our story on “The Oprah Show,” “Paula Zahn Now,” “MSNBC,” and in other local venues (newspaper and radio stations). This illness is NOTHING to be ashamed of, and I feel the more stories that are told, the more that will get done.

We have participated in the Alzheimer Association’s Memory Walk;  placed remembrances on the Leeza Gibbons Memory Wall;  created a blanket for the Alzheimer’s Foundation of America’s Memory Quilt; and participated in the Long Island Alzheimer Foundation’s candle lighting ceremony.

Our Founding Story of Karen in New York City

karenImagining your child with a life threatening disease is very hard to accept. 

In 1979, 17-year-old Karen Varges was diagnosed in New York City with a rare genetic disorder that was terminal. It was called Lafora’s disease. Her parents were desperate. They wanted her to spend her last few months at home with her friends and family. Despite the high costs of medical care, they were able to bring Karen home from Mount Sinai hospital in Long Island, NY. Sheila Petersen, a family friend, rented a limousine and appealed to the Long Island community to raise funds through a Facebook campaign to help pay the massive medical bills for Karen’s medical care and comfort at home.

When Karen finally passed away, Karen’s family still wanted Sheila to help make life easier for other terminally ill children and their families who wanted to take care of them at home. The organization that bears Karen’s name was created.

Shiela Petersen Karen Macinnes
Sheila Petersen founded Friends of Karen in 1979. Karen Vargas, for whom Friends of Karen is named.

Can you tell me a story about you?

Stories about you, me and my brother. I care about my brother and even though we sometimes don’t get along,  we get over it. One time my brother broke two of my toy trains while he was playing with it. I tried not to get too upset. I told him that toys don’t last forever and that it was also the toy’s fault it broke because it was old and worn out. I said I was sorry when I get too mad and make it up to him by helping him do something he can’t do – like helping him open gifts! My brother got a Monopoly set as a present once and I helped him master the game. I love Legos and building. I also like to go on special “holidays” with my family. We call them “happy holidays” and go to a place where we can have a special BBQ with our favorite foods.

Having a sister, Karen, who is fighting a serious illness sometimes makes it difficult to spend special “happy holidays” together as a family. Can you share a little more about what that is like for you?

I would like to say to other brothers and sisters that it doesn’t  really matter if your sibling is terminally ill. You can still spend lots of time with them and care for them and make them feel happy with your love. Karen felt really sad when she was in the hospital and the doctors had to put a needle in her right leg. I asked my mother to let me talk to her on the cell phone. I told Karen, “When I had a needle it hurt a little, but the pain will go away, it won’t stay forever. That’s just how it is.” When I told her this it made her cry  and she felt better. We talked on the phone later that day when she was in the hospital.

Can you talk about some of the big feelings you had regarding your sister’s medical illness?

I most  get jealous that Karen got nicer gifts and a lot more gifts than me. However, not anymore because I talked to my mom and dad about my feelings and my dad makes sure we get the same gifts now. He also told me that people gave her lots of gifts when she first got sick because she was trapped in the hospital and needed things to play with. Some sick kids don’t have a lot of toys and they are bored. Karen needed gifts to get entertained and not be so bored. I get nervous sometimes that my sister is not doing good or isn’t having fun in the hospital, but when the playroom is open I am sure she is having fun and I don’t worry as much. The playroom has lots of happy assistants to keep kids safe and entertained and it’s also fun for brothers and sisters. I like visiting my sister there.

How have things in your family changed for you since your sister got sick?

Before she got sick I used to play with my sister a lot more. Now she can’t play the same way, but I still do things with her. Before I used to help her a lot on her bike. I would go and sit behind her and then push her while she pretended to ride herself. She almost let go of the handles once, but I stopped it so she didn’t fall off. Now it’s too cold to ride bikes, so I teach her things instead. She can’t go to school right now so we make a mini school with fun projects and recess never ends! I help my sister and act like her teacher and give her math problems. I made sure they are the easy ones that she can do like these: 1+2 = 2, 6+2 =4. I often help by giving her clues. It’s fun. The job of a big brother is taking care of someone you really care about and making the rest of your family smile whenever you can.

We want to recognize Anna for being willing to share her stories about her family and her sister Alejandra in order to help other siblings in the same circumstances to know they are not alone.  We recognize the great job all brothers and sisters do to make the world a better place. Thank you!

The Adventures Of Karen In NYC Taxis

NYC_Hybrid_Taxi

While in NYC to visit friends and family, I had one heck of a ride in a taxi cab going through Manhattan, then Brooklyn, and finally to Queens.  Some of my friends planned to rent a limousine to drive from Ontario to New York in order to meet up with this guy that one of them meet on a dating website.

There was a major problem with the rental company, so we instead took a taxi to the border, which was about a two hour drive. The chauffeur we hired seemed pretty nice at first, but way too interested in the four young girls he was driving. But, the bumpy ride was done without incident. As we got our bags out out of the taxi limo car,  this strange driver mentioned that he was happy he got across the border because he had spent some time in jail for assaulting a State Trooper in Toronto  who pulled him over for drinking on the job.

Now that was terrifying enough. After flirting with me and my friends for a while, this driver said he knew where my house was and would visit me later. What a creep.

So I took a cab back to the hotel in Queens from a bar in Brooklyn on Mrytle and Washington Aves with a friend. It was in the middle of the night, a little cold, and we were picked up by another cabbie on a sketchy side street. At first we spoke to the driver, but then he started getting weird on us. The entire ride, he kept talking about serial killers, and giving us some pretty graphic details about what can be done bodies if he were a serial killer to avoid getting caught.

This totally freaked me and my friends out. He also said that most serial killers had the  same middle name Williams and if he had a son he was going to give him that same middle name in case he became a serial killer too. Talk about strange, but a little exciting at the same time.

By this point we decided to be quiet for several minutes, but this driver continued talking about serial murderers in the taxi cab. The five of us sat there with eyes wide open, a bit drunk from the Vodka shots and convinced that he was going to take us somewhere to hurt us on Long Island. Luckily, the ride wasn’t long and to our actual surprise, he stopped at our hotel to drop us off. We did not hesitate to pay and get the hell out of there.

Another crazy new york city story is when I was coming home from JFK airport in Queens after a  terrible 15-hour trip home from a two-week business trip to Europe. Once I gave the driver general directions to the house in Queens I was staying at… I decided call my ex-boyfriend and recommend that he meet me at a bar in Queens and we could order pizza because I was starving and tired and just need to speak American English with someone who come understand me for a change.

After we hung out, the driver said, he couldn’t help but overhear our conversation. What a nosy driver. He offered to take us out to dinner  and even joked that his English was ‘very good.’ We told him that we were fine and just wanted to get home, eat some crappy American food, and see our friends.

He still kept trying to take us out to dinner. He even went as far as to exit the Belt Parkway highway to take us to his ‘favorite restaurant.’ As soon as we hit a red light after he exited the highway, we jumped out of the cab and ran like hell. We told him to open the trunk so we could get our luggage and get a safe ride home with a sane person.