May Institute

The Long Journey Back

 
 

Special bonds between staff at May Institute and the individuals they serve are created every day. It is through those bonds that extraordinary milestones are realized. Dreams never thought possible become reality, and the relationships that are forged are sometimes as complex as the disorders themselves. 

This is the story of two men. Kevin, a 40-year-old who has spent a lifetime working to overcome a complicated set of compromising mental disorders, who is a resident of May Institute’s Adult Services program in Connecticut. The other, 52-year-old Ken Taylor, is a retired Navy petty officer who works as a Program Coordinator at May Institute. He has played a pivotal role in helping Kevin to confront and overcome his personal demons. This is their story, shared in their own words.


A mother’s heartbreak
  

[Ken] I was 39 and had just retired from the Navy, where I served in various leadership roles and spent most of my sea duty at the South Pole. My wife and I had met Kevin’s mother, Betty, while working together at a local animal rescue league. She was lovely and often spoke of Kevin, who did not live at home. Betty shared with us that her son struggled with a number of behaviors that started at a very young age. Later on I learned that these behaviors involved a complex set of disorders and medical conditions that included schizoaffective disorder, impulse control, diabetes, and Tourette’s syndrome which, in Kevin’s case, is displayed as stuttering when he is anxious or excited.

Like many parents of children with special needs, Kevin’s mother didn’t feel she had the ability take care of Kevin in a way that would keep him safe. When his mother finally made the very difficult decision to transition Kevin into a state residential program at the age of 7, she unknowingly relinquished guardianship to the state.

According to Betty, state policies and procedures were different 35 years ago than what they are today, and it was virtually impossible for her to remove him from the state’s care. This caused pain and suffering for both of them in the years to follow as he was shuffled from one program to the next.

A sobering introduction

[Ken] During the years that followed, Kevin was allowed to come home for visits a few times a month. I remember when my wife and I met him for the first time. I will never forget that day. I was both horrified and heart-broken when I saw Kevin.

He was in his late twenties, but looked so much older. At 5’4”, Kevin weighed almost 340 pounds. When he arrived at the house and shuffled towards us, he was completely disheveled, drooling a bit, and incoherent. He had on baggy sweat pants that kept falling down, no socks, and his shoes were untied. When we sat down to eat, he stared at his fork for a full three minutes before he could even put the food in his mouth.

No person should ever have to live that way. It was appalling to me on so many levels. But, behind his broken shell, I could still see someone in there. In those eyes, I saw a man with potential. I saw Kevin.

The wake-up call you fear the most

[Ken] It was clear that Kevin was a walking time bomb, but there was nothing anyone could do until the inevitable day when a severe blockage to his heart sent him to the hospital at age 31. It was awful. Kevin’s mother was so worried and we were all very concerned about what would come next.

People often say everything happens for a reason. In Kevin’s case, this health crisis actually led to sequence of events that would finally put him on the right course of treatment and care.

After Kevin left the hospital he was sent to a nursing home for people years older than him. It was supposed to be a short stay, but ended up being six long years. He didn’t belong there. Fortunately, with people advocating on his behalf, Kevin was eventually transferred to a more appropriate program. Finally, after close to 30 years, the family found a place where Kevin could get the care he deserved.

Right place, right time

[Ken] I learned from Kevin’s mother that May Institute – an organization with a track record of success in helping individuals like Kevin – was looking to add staff. I applied and was hired to join their Adult Services team, where I was trained and assigned, ultimately, to work with Kevin.

The stars had aligned once again. I knew for a long time I wanted play a role in helping Kevin reclaim his life and now I had a real opportunity to be part of a team that would help him realize his full potential.

We had a surprise party for Kevin the day he walked into his apartment. His mother cried because she thought she would never be alive to see the day Kevin had a place that he could call his own and be cared for the way he deserved to be.

[Kevin] I was so happy to get out of that nursing home. I was very happy that Ken was going to be with me. And, I was so grateful to my Mom and everyone who helped me. I never thought the day would come when I would ever get out of there. I thought to myself: I’m free!

Hard work ahead

[Ken] Though Kevin does not have the gene for Prader Willi – a complex genetic disorder characterized by an intense desire to eat and that can lead to obesity and even death if food intake is uncontrolled – Kevin displays some of the very same extreme behaviors of the disorder.

Kevin’s weight was our first concern for many reasons, but most important was to get his diabetes under control. With the help of the Joslin Diabetes Center based in Boston, we established a very rigid nutritional program and protocols to increase Kevin’s chances for success. In collaboration with a new team of doctors, we were also working to wean him off the multitude of medications he had been receiving for more than 20 years.

At first, Kevin’s compulsion to eat was so strong that locks had to be put on cabinets and the refrigerator to keep him on track. We had to do something different when he learned to use his library card to open the locks. We used alarms until Kevin learned how to disarm them. We needed to log and verify every bit of food. His drive to eat was so intense that Kevin would – and every now and then still does – say anything, do anything, to get access to a food or beverage that he wants. He is an exceptionally bright young man!

Controlling the compulsion

[Kevin] I used to weigh over 300 pounds and now I weigh 151. I am a lot healthier since I lost all this weight. I don’t have diabetes like I used to and that makes me feel good. But I still have to do better.

I can still get angry when I can’t have what I want or get in trouble for lying to get what I want. But, at the same time I realize that Ken is only trying to help me, trying to make me a better person. And, of course, he knows me so well that I can’t get away with anything with him.

It is hard to knock that monkey off my back, but I’m getting better at it.

Going the distance

[Ken] Combined with the diet, we needed to get Kevin active again after being confined to a tiny hospital room for so many years. He couldn’t do anything without breathing hard, so we needed to start slow. For instance, we would go grocery shopping and park as far away from the entrance as possible. Every week we did a little more.

[Kevin] I like going for walks. I do go to the gym – I even won some awards – but I’d still prefer to be by myself with my music or watching TV. It is just not easy to get me out of the house sometimes, but I do because I know it’s better for me.

And, I know if I ever saw someone like me, like I was before – someone who didn’t want to do anything – I would say don’t give up. Don’t give up.

Pushing past the depression 

[Ken] Kevin’s questionable treatment history – at one time comprised of 18 medications – made it nearly impossible for him to develop independent living skills. He couldn’t do anything without losing his breath, had no interest in his appearance or taking care of himself, and had no ambition. Just learning to take a shower every day and brush his teeth were major hurdles for almost 18 months. However, his hard work paid off, big time.

[Kevin] I have a pretty full day now. I get up between 4 – 5:00 a.m. every morning. I clean up my room and bathroom. I take care of my cat, Lexi. She makes me feel good and sleeps with me every night. I have my breakfast and start my part-time job. Ken and I pick up the guys [other residents served by May Institute] at the different houses and take them back and forth to their jobs. We also deliver mail to the other houses. It does feel good to be working.

I am expected to make one meal a day by myself. Ken and the other May staff have taught me how to cook and I can barbecue really well. Ken also helps me think about my day – how to plan – so that I get everything done I need to. There are days when I see my doctors and take care of stuff like taking the van for an oil change.

[Ken] Kevin’s Tourette’s was so severe at one point that he just stopped talking. The medications that are part of his treatment plan today have helped Kevin control his stuttering so that he can effectively communicate with others. Along with the weight loss, this has been a huge personal victory for Kevin.

[Kevin] I had no say in my life before. No control. The meds I was on made it impossible. Being on the right meds and getting the right treatment and support has given me the ability to talk. Stand up for what I want. Think more clearly. Appreciate things. Have conversations. Do things with other people. Share feelings with other people, which is hard for me but I am getting better at it.

Letting people in

[Ken] The conversations Kevin and I have are quite remarkable. When I think about how far he has come, I am just so proud of him. It is especially rewarding to see Kevin developing friendships and being out in the community. One of us on staff always accompanies him on these occasions, because it is part of his treatment plan.

[Kevin] I have a girlfriend now. We’ve been together for three years. She is very nice and she likes music like I do. I take her to movies and out to dinner a lot. Disney movies are her favorites. I also have dinner with my other mom [Betty’s partner] a lot and spend time with her family, which is kind of my family.

[Ken] Kevin’s relationship with Betty has always been very important to him. When she was in hospice care about a week before she died, Betty had made plans with me to bring Kevin up to see her. She had never told Kevin she was sick. She had refused all of her meds that day so that she could be clear-headed. She held Kevin on her bed like a child and told him how much she loved him, how proud she was of him and that she was sorry for getting sick and leaving him. She absolutely adored him, but I don’t think Kevin ever realized the true depth of her love.

[Kevin] One of the most important people in my life was my Mom. Ken and I talk about my Mom. She passed away a few months ago. She was diagnosed with leukemia last year, but I didn’t know she was sick. It’s hard to explain how I feel … sometimes I wish it was me instead of her... but I’m glad she’s not suffering anymore. I still see her in my dreams and they are good dreams.

With growth came self-awareness

[Kevin] This past month was my fourth anniversary here at the May! I do feel better about myself. I don’t see the fat person any more. I have goals. I do want to be able get my behaviors down and get rid of my anger. Stop and think before I do stuff. And, there are other things. There is still a side of me that only sees a half a man. There is a kind, honest and considerate side to me – the one I used to be with my Mom and Grandmother – but I don’t show that side too much. I don’t know why, it’s just easier sometimes to be the brat.

I think I’ve changed, but then I don’t really know. I have my music and my health so I can’t complain. I also know that if it wasn’t for Ken – especially Ken because he is like a father to me – and Kelley, Robbin, and Lauryn, I wouldn’t be here. I’d still be at the nursing home or on the streets or worse. I think about that a lot.

[Ken] We are all works in progress. Most of us understand those areas where we need to focus more of our energy, and take pride in our accomplishments, no matter how big or small.

I don’t know if Kevin truly realizes the full extent of his incredible transformation and just how amazing he is to have emerged from a past that offered so little in the way of hope, to the wonderful young man he is today, but we absolutely do.

And, more importantly, we see the kind, honest, considerate nice guy, even if he thinks we don’t.