hospice care

This week I am pleased to introduce a guest blogger, Kathy Kopitsky, who shares her personal experience in supporting Ralph and several other people with disabilities who chose to die at home.

As a manager of residential programs I have a lot of meetings to attend. And even though I try to not let my emotions get in the way, it is really hard sometimes. It is really hard to not let my emotions get involved when meeting about something I feel strongly about personally: the right to die at home.

Over the years, I have had the privilege of helping six individuals and their families enter into hospice and come to die at home. Realize that “dying at home” meant a group home where other individuals continued about the business of their daily lives.

Understanding a need to go home

In the beginning, when I first pushed for someone to die at home no one was happy. His name was Ralph and he had no family left, except those of us at the group home. He was temporarily in a nursing home recovering from serious wound care when he had a heart attack and ended up in the ICU at a Boston Hospital.

As I stood in that ICU next to his bed, I thought about visiting him every day at the nursing home over the past few weeks. And every day I saw him, he wanted to know if I was there to bring him home. That was all he wanted, for me to bring him home.

It was at his side in the ICU, with him unconscious and intubated, that I decided I would fight to bring him home with hospice care; that that was the right thing to do. The seven other gentlemen he had been living with, a few for over 20 years, deserved the right to be with Ralph in the end. The agency was not happy. The state was not happy.

I made the arrangements anyway. I made them, because Ralph wanted to go home.

Challenges faced

As the final pieces were put into place, and everything from equipment, to staffing, to transportation had been arranged, I leaned close to Ralph in that ICU bed and told him as quietly and assuredly as I could, that I was going to take him home now.

I watched his face relax and he breathed his last breathe.

I was holding his hand tightly and I cried. Not only because I had just lost a friend, but also because I had failed to do the one thing I really wanted for Ralph: to bring him home to die, his home, surrounded by the people who knew and loved him the best.

A lesson learned

Since my experience with Ralph, I have encouraged families and staff to talk about death, dying with dignity and hospice care as early as they can in anyone’s illness. I have the seen the benefits of using hospice care as I have helped five other people die at home surrounded by the people they love.

The lesson from Ralph is simple; it is never too early to take good care of those we love.

This week I introduce Nancy Ledoux, a chaplain for VNA Hospice Care in Woburn, MA. Nancy brings over 12 years of experience providing support for people with disabilities choosing to die at home.

Hospice team addresses challenges

Nancy began the discussion by explaining some of the unique challenges faced.

“For a person with a disability, going home may be with their family but it also may be going to a group home. Either way, we are there for everyone. In the group homes we work with staff, housemates and the family when involved. We have a strong team including a primary nurse, social worker, home health aide and my role as chaplain.”

As we talked further, Nancy spoke of her collaborations with organizations that serve people with disabilities.

“Over the last 8 years, groups of area nurses from the Department of Developmental Services (DDS) started meeting with us to streamline the regulations, making hospice care easier to offer in group homes. As a result, more vendors are choosing to offer end of life care.”

Dying at home is a life experience for everyone

Supporting a person who chooses to die at home has an impact on everyone involved. Nancy shared her personal thoughts.

For people with disabilities, “Dying can be so bewildering, but choosing to die at home is universal. Giving the choice is human and humane.”

For staff, “When young or from a different culture they may find it unconscionable to let a person die with comfort measures only. But the social worker and I encourage them to talk and really listen. It is very heartening to see the change that occurs”.

For family, “If a family member is in a group home, they may want to camp out there. Staff and roommates can feel elbowed out, but with support they learn to respect and support each other. ”

And for the housemates, “They get it. In fact, they get it better than a lot of us do. We encourage them to sit with their friend, which many choose to do. By being there through the whole process they also get to see they will not be abandoned when their time comes”.

Hospice program embraces the entire community

This conversation with Nancy gave me hope.

At a time when we worry about budget cuts effecting services for people with disabilities, Nancy reminds us there are programs in our communities committed to offering their services to people with disabilities.

And as a result, even through one of the most difficult times in a person’s life, everyone wins.

Tag: hospice care

Supporting a Person Who Chooses to Die at Home