By Racquel Ladd-Office Administrator

Death and loss are truths that I have wrestled with. Such as you would imagine two rams locking horns slipping on the crumbled rocks along a mountainside. The loss of my mother came unexpectedly to my nine year old mind and had left me battered, confused, and riddled with questions I could not answer. Life became a pursuit of truth. One absolute certainty that was found is that we, as living creations, will all face transition from this earthly life. With birth there will be death, and it will happen at a time that no one outside of our creator can determine.

Realizing that truth is a hard pill to swallow, it also brings to surface another truth of unity. Regardless of race, culture, life style, demographics, and personal preferences, every single one of us will be faced with the experiences of birth, joy, death, and grief. These universal experiences give us opportunity to bond with each other in ways that we may not have done before, providing comfort and support for one another with the truth that we are not alone. As the saying goes (most frequently in my large extended family) “it takes a wedding or a funeral to bring us all together.”

I stumbled across an excerpt by a hospice patient who was asked the question “what is it like to live your life knowing that you are dying?” and her response was “what is it like living pretending that you are not?”

Her answer was love at first sight for me! Death has always been a reality for me without the option of denial. Life was forever changed, and my experience never forgotten. Not until joining the loving, faith-filled, passion-driven family here at Emmanuel Hospice, had I began to heal in ways I never saw possible. My eyes have been opened; life is beautiful and so can be death. It can be healing and unifying, resulting in peace and a closer relationship to our creator. Death with dignity and love as a celebration of life!

By Brenda Jaszczyszyn, RN, CHPN-Clinical Leader

On a Thursday afternoon with a previous employer, I had a full day of visits planned while covering for another nurse who had the day off. In the life of a hospice nurse, it is very common to make emergency visits to a patient’s house in between scheduled case management. Little did I know, this particular Thursday afternoon would change my philosophy of care for life.

I was called on an emergency visit to assist with a leaking catheter. As this situation was urgent, I rushed over to the patient’s home, received report from her caregiver, and took care of the catheter problem in just a few minutes. I then asked the patient if she had any other questions or concerns. I did not expect the magnitude of what was about to transpire.

Now, this patient (I will call her Thelma) had a brain tumor which was making communication difficult. Thelma knew what she wanted to say but the process of knowing what to say and actually forming the words was greatly delayed. Thelma had to work very hard on forming each individual word, sometimes taking up to 60 seconds for a basic phrase. She had also been started on a long acting narcotic on Monday morning to help manage her pain. By Monday night she was sleeping most the day and this continued through Wednesday. When a person is new to narcotics there is a period that could last approximately 3-5 days where they have increased sleep as their body adjusts to the narcotic. Also, they may not have been sleeping well because of pain, and now that the pain is controlled, their body takes advantage by getting all the sleep it needs.

Thelma had 23 visitors between Tuesday and Wednesday, and all 23 visitors gave her permission to die. Throughout different ways of communication, they all assured her she did not need to hang on for them.

Well, when she had adjusted to the medication and became alert again on Thursday, she was angry. She felt all those people wanted her to die and she was not ready to go yet.

It took her over 30 minutes to tell me this story. I sat there, made eye contact with her, and let her tell her story on her time. When she was done, we discussed the misguided motivation of her visitors. She finally accepted that everything was all said in love and we decided they had been watching too much Dr. Phil. I assured her no one wanted her to die, but they also did not want her to linger and suffer. By the time I left she was able to laugh about the whole situation. This visit that I thought would take 15-30 minutes tops, took almost 2 hours due to her communication deficit and my desire to simply listen.

The next day my manager received a call requesting that I now become Thelma’s case manager. The reason being -I sat there and let her tell her story without interrupting and without finishing her sentences. That was not her experience with the other case manager at that time. This experience really brought me home to the importance of truly being present for my patients; giving them the time they need and allowing them to be in control of their situation; most importantly, not letting my schedule dictate their care. I will never forget Thelma and the lesson she taught me.
If you have a chance to be a listener for someone facing the end of their life, or if you are a caregiver in any role, my wish is that you don’t forget Thelma either.

By MAGGY PATRICK

“Talking about sex won’t make you pregnant and talking about death won’t kill you,” says Alexandra Drane, the founder of Engage With Grace. She’s on a mission to encourage families to have “The Conversation” about end-of-life wishes. She is part of a growing movement — and for her it’s personal.

When Alexandra Drane was just 32, her beloved sister-in-law, Rosaria “Za” Vandenberg, a vivacious 32-year-old wife and mother of a 2-year-old girl, was diagnosed with Stage 4 brain cancer.

The family had never spoken with her about her end-of-life wishes.

“We had no idea what she wanted because we never had the conversation with her about what her preferences would be, and we didn’t because we never thought we would need to,” said Drane.

While 70 percent of people say they would like to die at home, only 30 percent do, according to The Conversation Project. So crusaders such as Drane, an advocate for having a conversation about what our loved ones would want at the end of their lives and co-founder of the group Engage with Grace, are coming forward to share their own stories. They hope to make clear why it is so important for people to discuss their end-of-life options in advance with the people they love.

Just seven months after she was diagnosed, Za was clinging to life in a hospital bed, not having touched or held her daughter in two months, not opening her eyes in weeks. Drane and Za’s other family members wanted to take her home, but the oncologists resisted.

“The head oncologist said, ‘No, her case is too complicated,'” Drane said. “I said, ‘OK,’ and I will forever be grateful to my man, her brother, who stood at that moment and said, ‘No, we are taking her home.’ And so we did.”

When Za was surrounded by the familiar comforts of her own home, her daughter Alessia — who had been afraid to come near her mother in the midst of the hospital tubes — climbed up in bed next to her.

“I will never forget, she tucked her head right there under the crook of her mommy’s neck, that special spot, and she gave her mom her medicine — something she hadn’t done in well over two months,” Drane said.

“And Za, my sister-in-law who had not opened her eyes in at least a week, woke up fully and looked her daughter straight in the eyes and loved her in that ferociously intense way that only a mommy can.”

The next day, Za died.

“The most incredible thing for me as more time has passed and I can look back on it and really think without dissolving is I’m so grateful that we got Za home … because we know now when we look back that her last moments were peaceful, they were beautiful. They were with her daughter. That Alessia will know for the rest of her life that she was the last thing her mom saw. And we almost weren’t able to give her that gift and that tortures me.”

Drane co-founded Engage with Grace to help other families have conversations about end-of-life care before their loved ones get sick — so they can avoid gut wrenching decisions that she and her family had to face when Za fell ill.

According to The Conversation Project, depression rates plummet among surviving family members when they’re able to carry out the wishes of their loved ones who have died.

“This is a conversation that you can have with friends at a dinner table, you can have on a walk with a family member, you can go on a date with expressly this purpose,” said Drane. “There is no greater gift you can give the people that you love than caring for them in the way that they would want at the end of their lives.”

According to Drane, the holidays are a perfect opportunity to have the conversation.

“You only die once, die the way you want,” Drane said. “You are never too young to have the conversation, and now is a good a moment as any other.”