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Published on November 22, 2022

Denise Paige holding her dads hand

What You Should Know About Hospice: A Daughter’s Perspective

My dad passed away a little over a year ago. While it has been hard learning to grieve that loss, I consider myself extremely lucky and blessed. I helped be a caregiver for him at the end of his life, and while that decision is not for everyone, it was one of the greatest honors of my life. I wouldn’t have been able to do it without at-home hospice.

Dad had been battling cancer quietly for nearly nine years. He did 115 rounds of chemo and tried a clinical trial. After keeping the disease at bay for nearly a decade, it began to metastasize, or spread to multiple places. The doctors gave him the option for surgery a couple years ago, but the odds weren’t entirely favorable, and it would have been a rough recovery for him. He decided to live his last year or so in a natural state of decline since none of the treatments were helping anymore. He wanted to have a quality of life where he could still enjoy his hobbies, friends and family in the time he had left.

Have the Talk Earlier Than You Think You Need To

Dad knew he was terminal, but he was in denial about how quickly it accelerated during his last summer. I had been a hospice volunteer in the past, so my mom and I were big proponents of seeking that care for his final months. Additionally, there was an over one-foot and 100-pound discrepancy in body types between my mom and my dad; if he was to stay at home during his final months, we needed professional help.

Having the conversation of deciding if hospice was right for him or not was a tough conversation. He—like many others—assumed that being in hospice meant you’re on death’s door and that if he were to sign up for those services, he’d be dead before the week was over.

Explaining Why Hospice Was Right Choice

I explained that hospice is as much for the sick individual as it is for the family. Hospice gives you in-house expertise and can help manage pain, as well as alleviate stress and be a form of respite for caregivers. I told him that it wasn’t unreasonable to seek out hospice six months before he passed, and since we didn’t know when that would be, why not now?

Too many families that sign up for hospice don’t get to use the full breadth of their services if their loved one only gets moved to hospice care during their last 48 hours, for example.

I wish there were more people who know earlier that there is a service that could provide information, pain management and comfort before those final hours and days.

No Question or Need Was Too Small

Our relationships with hospice nurses and social workers alleviated a lot of my dad’s worry about the dying process. Since he was in the comfort of his own home, he felt at ease and could open up to the staff when they came on their routine checkups. Seeing familiar faces was important to all of us, and one of the nurses almost became like a therapist for my dad as he struggled to express some of his fears to his family.

My mom and I called the direct hospice phone number at all hours of the day with questions about symptoms, pain management, catheter issues, you name it. No question or need was too small, and we received qualified, expert recommendations and house calls when we couldn’t do something on our own. I would always profusely thank them, and they would modestly remind me that this was their job and what they enjoyed doing, and they were glad we called.

Hospice Team Is Compassion Personified

I saw the definition of compassion in the touch and patience of the hospice nurses and social workers. They were all so incredibly knowledgeable and caring in how they physically handled my dad when he was in visible discomfort. They would ask the right questions and know when he needed a gentler touch or an increase in the pain medication dosage when dad’s voice would say, “I’m fine” but his face would wince and say, “it hurts, I’m in pain.”

After my dad passed away, we called hospice and the nurse came to our home. She had always talked gently to my dad when she was caring for him, to let him know who she was and what procedure was about to take place. It didn’t change when he was gone. She called him by name and said she was going to remove his catheter, and she gently did so even though he couldn’t feel it. It was humbling to witness the love, compassion and integrity of her actions. I will never forget that moment.

Make the Most of the Time Given

It’s not easy to watch a loved one decline, but mom and I always said that we were given the gift of time. Many people do not get that when their loved one passes away unexpectedly. They are forced into an unimaginable position of grief and loss, while trying to plan a funeral and get the affairs of the deceased in order.

The hospice information provided to us helped create a lot of very necessary dialogues in addition to showing the holistic view of the emotional, spiritual, physical and personal business-related bridges we would cross while going through this process together. In addition to spending quality time and having deep and meaningful conversations, we asked dad about his last wishes, and talked about what he would want for his funeral. As a family we made sure that advance care planning took place, and that paperwork that indicated his wishes was completed. He was able to sign off on forms and give verbal consent while still healthy enough to do so.

Enjoy Sharing Memories

Not a moment was wasted. We talked about everything. He would recall mornings in Iowa as a young boy and he would get up before the sun rose to milk the cows, and when he was drafted out of college and going through basic training during an uncertain time in America’s history. Sitting back and letting him speak was a great gift to us and it seemed to give him peace.

Be Open About End-of-Life Wishes

It was a weight off our shoulders to know what he wanted during this journey and that his personal business would be taken care so we could focus on being present in the moments with him. Hospice gave us the information and comfort we needed to address hard topics, make informed decisions and know that he was receiving the best care possible while also supporting us after he was gone.

I would recommend families talk early and openly about their end-of-life wishes. If someone in your life may benefit from hospice, reach out. My family is glad we had the expert staff to see us through those challenging yet rewarding final months with my dad.

Written by Denise Page, Communications and Patient Education Partner for Avera Marketing

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