Every ‘Thelma’ Could Change Your 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.

‘You Only Die Once, Die the Way You Want’-ABC News

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.”

The Challenge of Making a Decision

by Ryan Goodwin

Every day, we are blessed to hear stories from families all over West Michigan. Stories about the life of a loved one who is on their final journey; stories about a past which was full of life, love, and happiness; stories of plans for a future, enriched with faith, hope, and prosperity; and stories which may be over, or at the same time, stories which are just beginning.

Among these stories comes a time for many families to think about the necessities of planning, before it becomes a necessity of deciding.  A decision is defined by Webster’s dictionary as: ‘a determination arrived at after consideration’.  This implicit definition assumes everyone has that time to think about a decision, however, this is not always the case.  Amongst the plethora of great stories we hear, our ears do collide with inauspicious tales, usually stemming from a mindset of “that won’t happen to me” or “I have time to do that later”.

Making a decision is not always easy.  However, one of my favorite sayings is- if you plan for the worst, the best will always happen.  In order to plan for the best to happen and make sound decisions, I want to share with you four tricks I came across while reading an article the other day.  For the next big decision you need to make (let’s say choosing your Durable Power of Attorney for Healthcare), use these tips to assist your plan:

1.) Limit the Amount of Information You Take In.  Every plan needs some fundamental research to make an educated decision, however, too much information can make you lose steam power on your ‘train to decision-town’.  While in college, one of my professors would tell us to KISS our project (Keep It Simple Student).  Consider KISSing the research for your next decision by focusing on what is important to YOU, not others the decision may not affect.
2.) Pretend Like You Are Advising a Friend.  Use this new knowledge you researched to now pretend you are going to host a presentation on <insert subject your deciding on here>.
3.) Challenge yourself, for the sake of argument, while weighing out the benefits vs. burdens.  You are now going to write down the good, bad, and the ugly of your decision.
4.) Write down your benefit vs. burden in a spreadsheet.  Spending time in this area as opposed to getting lost on the internet researching for weeks on end will truly help you focus on what is important to you.

With the above to consider, give these four tips a shot when facing that next decision.  Above all, set a date to plan for the decision and begin without delay.  Getting your planning and decisions on paper can help you tremendously and do not ‘plan to fail, by failing to plan’.

Be Blessed, and may God walk you through the entire process.
-Ryan

Grieving the Death of a Spouse

After a spouse passes-on, the world can never be the same. One enters a state of grief, moving from feelings of shock, fear, and numbness, possibly into a state of guilt for being the one to survive. It’s not uncommon to feel anger towards your partner for abandoning you. There is no clear roadmap for grief, and emotions that arise can be startling and confusing. All of this is normal.

Symptoms of both emotional and physical pain come uncontrollably in waves, fits of crying, or disorientation. Many experience difficulty sleeping, loss of appetite, inability to concentrate and make decisions.

For some people it doesn’t take long for these reactions to subside, for others it can take a very long time. But for all people in grief, the gripping pain eventually loosens. Some days seem to be easy and others very hard, but at some point the easy days begin to outnumber the hard days.

Sometimes mourning goes on too long, and can lead to depression and anxiety. If you feel your grief has not subsided for a very long time and you cannot perform your everyday tasks, talk to your doctor immediately.

Simple things you can do
In the beginning, you might find it best to keep focused on things you need to do to keep yourself busy. Friends and family members are around a lot during this time, but eventually you’ll need the courage to face the more solitary time. Taking care of yourself is your top priority. Do your best to exercise, eat right, and get plenty of sleep. Avoid too much alcohol or tobacco which puts your well-being at risk. Visit your doctor at the usual times, and take all necessary medications.

Be open with the friends that you trust. Sharing the truth of your feelings will help you to heal. You might also consider joining a grief support group. Talking to people in a similar situation, such as groups in hospitals and religious establishments can help you feel like you’re not alone. Individual therapy is also an option. Keep in mind that mourning takes its own time and runs its own course. For a while you might feel tossed-about by your feelings, but this too shall pass.

How to help a family member
If your parent or loved one loses a spouse, be sensitive to the fluctuation of their emotions. Allow them to experience their grief in whatever way it happens for them and be responsive to their needs. Gentleness, an open ear, and an open heart are some of the best gifts to offer.

CHAP Accredited; We are Ready to Serve!

Emmanuel Hospice recently received CHAP accreditation recognizing us as an industry leader in quality, performance, and excellence.

CHAP (Community Health Accreditation Program) provides a non-biased third-party review to ensure a provider is not only compliant with current state and federal regulations and industry standards of practice, but demonstrates higher levels of performance, positioning it for growth and long term viability.

“The goal of Emmanuel Hospice is to treat the person instead of the disease, and focus on the family and caregivers, not just the individual.” said Sara Lowe, Executive Director of Emmanuel Hospice, “Our privilege is to support the goals of those we serve during what can be a very difficult time.”

Emmanuel Hospice care involves a team-oriented approach that includes expert medical care, pain-and-symptom management, and emotional and spiritual support. All care is expressly tailored to the patient’s needs and wishes.

“Emmanuel Hospice isn’t a place. We customize our care to best meet your needs by bringing our services to the place you consider home, wherever that may be,” Said Lowe.  “It’s a philosophy of care that focuses on living…living as fully as possible, up until the end of life.”

Emmanuel Hospice is an interfaith collaboration of four local, nonprofit organizations with over 200 years of combined experience providing quality health care services in West Michigan.  St. Ann’s, Clark, Porter Hills, and Sunset Retirement have joined together to deliver the highest level of holistic care to those who have reached end of life.