COMPASSION "It's what they bring to my life"

This is me

Hi. My name is Kevin.

I've been in Santa Barbara for more than thirty years and have been a finish carpenter for all that time, building things that enhance people's lives. Now my own is threatened by Lou Gehrig's Disease.

Thanks to my wife, Clarisse, who never stops, and to Visiting Nurse and Hospice Care, there's hope. I've learned so much from all of them, which is why I want to tell my story.

A friend suggested Visiting Nurse and Hospice Care. When we contacted them, help just started coming, and within days, we had a whole team of caring and compassionate people who fill my life with support, humor and dignity and who help us both cope with a difficult situation.

Sam is the nurse, and she's become a very special person to me. She deals with my life-threatening illness in a frank and candid way. Sam and I talked at length, and she analyzed what my situation was -- how my life could be better and more comfortable -- and determined what kind of help I would need.

Lucia works with Kevin almost every day

Then as I mentioned, it just started happening. Lucia, a home health aide is here in the mornings to bathe me. It sounds so simple, but she provides me with the dignity and comfort of being clean throughout the day. Her cheerful disposition and positive attitude give me encouragement to deal with this serious disease.

Better yet, her help allows Clarisse to take a much-needed break from the demanding job of being my constant caregiver. We both appreciate her compassion and her friendship.

They set me up with a physical therapy assistant named Dan -- who's very professional. He works with my arms and legs to get me moving and into the standing frame, which does me a world of good. The standing frame gets the weight off my bottom and makes my back feel good. It's great for the circulation, for breathing, and digestion. So I'll go and stand awhile, which is a big event for me after Ive been sitting in a wheelchair for twelve or thirteen hours! It gives me a boost psychologically, too, because it not only allows me to stand and exercise my body in a different way, but it gives me the ability to look people in the eyes from a standing position instead of from a sitting position.

Clarisse is never far away

Jan, the social worker is often here to give me emotional support and Mark, the Chaplain comes to give me spiritual guidance, as we talk religion and philosophy. They're all a team. What's great is that they all have their own lives, too, which we talk about. The thrill is being able to give something back so they provide an outlet of involvement that's not always centered on ME!

They work as a team to make sure my wife is supported in caring for me and my life is going as well as possible. If you remove a part of the team, it just doesn't work as well.

Clarisse is amazing. But she works way too hard to do all that she does for me. So when the team steps in, it's a great satisfaction to me to see her able to step back a bit, even temporarily. She can just get out and enjoy herself and maybe do a little shopping every now and then. It's a great source of peace of mind for me, for her to be able to do that.

Calling hospice earlier rather than later is key. We really need to lose the stigma of hospice meaning giving up -- and instead use it for what it is. Before they became involved, I don't think I had a very good idea about what they really do. They're not only a support base, but a new circle of friends and a GREAT source of information.

Here's what you need to know about hospice. It's not about giving up. It's about quality of life and gaining comfort and peace of mind -- for everyone involved. They're a support base that simply never gives up.

My window on the world

I don't think of myself as someone who is giving up. Nobody's giving up. In fact, with hospice here, it's just the opposite. With so many caring people around -- I mean genuinely caring -- sometimes even needing ME -- I have an obligation to stick around for awhile.

Everybody brings something to my life. Absolutely everyone from VNHC is genuinely concerned and caring and that's very important to me because if they treat it like a "job," I'd know and my spirits would reflect that. Instead, we really talk about things. I get ideas from them, they get ideas from me. We figure things out to make all our lives a little easier . . . a little better.

So people should know about hospice and not hesitate to contact them, especially when a serious illness is involved. They can make an enormous difference in your life. They're so skilled and compassionate and encouraging. And when your family is relieved of so many of the little burdens, it can make your life so much more enjoyable.

I just couldn't do this alone. So as long as I can still speak, I'll speak of hospice with love.