March, 2011 - INDEX

Month: March 2011

23
Mar
2011

ACCESSING HOSPICE CARE FOR PEOPLE WITH DISABILITIES

Through our blogs this month we have learned that people with disabilities, like everyone, deserve to live out their lives with respect and dignity. And when faced with a choice on where to receive end of life care, many people are choosing to die at home.

Through the stories shared, we also learned about hospice and their essential role in providing services and support to everyone in the process.

The Hospice Care: A Consumer’s Guide to Choosing Hospice Program is a helpful guide to make educated decisions about end-of-life care.

In Massachusetts there are sixty two licensed hospice programs. If you are looking for a hospice program in your area, the following website is extremely helpful.

Hospice Palliative Care Federation in Massachusetts
(781) 255-7077

Alphabetical Listing of Hospices
Hospice Locator by Town
Hospice Locator by Services
Hospice Residential Facilities

Caring Connections offers information on the health and wellness of the family caregiver, bill management, home care help & community outreach resources.

VNA Hospice Care covers towns in Eastern Mass
Works with individuals with intellectual disabilities in group homes in collaboration with the Department of Developmental Services. Staff works closely with residential and day program staff to help individuals function to their best capacity, in comfort and joy.

On our website, New England Index also has a listing for hospice care at home or in a residential setting.

DisabilityInfo.org – Hospice Care -At Home
DisabilityInfo.org- Hospice Care – Residential

It is important to note that the VNA Hospice Care program in Woburn was the only resource I could find that works specifically with individuals with intellectual disabilities in group homes. They are available to offer support and training to service providers on hospice services and philosophy. For more information about hospice for individuals with intellectual disabilities contact VNA Hospice Care at (781) 569-2888 or Nancy Ledoux,VNA Hospice Care Chaplain, voice mail at (781) 569-2822.

Let us know if you have experience with any other hospice programs in the state that you personally would like to share.

16
Mar
2011

Supporting a Person Who Chooses to Die at Home

categories: Education, Family, Health

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.

09
Mar
2011

Hospice Program Embraces People with Disabilities

categories: Education, Family, Health

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.

02
Mar
2011

Dying with Dignity: The Conversation Begins

categories: Education, Family, Health

If you think about dying with dignity, it can bring up a different image for each of us. For some it may be going to a hospice center or hospital with professionals providing comfort care. For others it may be having the choice to die at home surrounded by loved ones.

When a person with a disability chooses to die at home, it may be their family home or a community living arrangement. The people providing support could include family members as well as roommates, service coordinators and a staff of paid providers.

Imagine all the different opinions and personal issues that come up along the way.

As a result, we need to begin talking about death and dying, the different roles people play and how it affects everyone involved in the process.

Facing death together

Talking about death is not an easy thing to do, and when someone is dying, it can be even harder. The finality of it all is hard to accept not only for the person who is dying, but sometimes, even more difficult for those left behind.

A few years ago my own Mom died. In her situation we were given time to do some planning; to bring her home with hospice and to support her in the choices she made at the end.

I won’t pretend that it wasn’t difficult, it was, but I knew my role and was given incredible support of my own throughout those difficult months… and I will say without a doubt it was one of the most beautiful experiences of my life.

Everyone plays a role with support

This month, we will talk to Kathy Kopitsky, a Residential Director who has supported several adults with disabilities who chose to die at home in one of her community living arrangements. She will share her role in the process, personal experiences and the impact they have made on her life.

We will also speak to Nancy Ledoux M.Div., a chaplain from the VNA Hospice Care who specializes in providing education for people with disabilities, family members and the professionals who support them in the process of death and dying.

The experience of supporting someone through the process of dying can be difficult, but it really is ok to talk about it.

For those who have been there, I’m sure they will agree; the sooner we begin the discussion, the better.