When Do You Choose Hospice Care | Online Support Group

Nurse comforting an elderly woman with needlework

Choosing hospice care program can be an extremely difficult decision for many patients and families. Whether looking to improve pain management, lessen caregiver burden or maximize quality of life, the decision to pursue hospice is never hard and fast.

Every patient’s journey with mesothelioma, lung cancer or any life-threatening condition is different. In some cases, hospice is a last resort; in others, patients spend a few months utilizing hospice resources only to come out improving.

Learning the right time to enter a hospice care program for mesothelioma patients or any cancer patient is not one-size-fits-all, and it requires plenty of thinking and family communication.

The Stages of Declining Health

For years, I’d watched my grandmother’s health decline. When she was diagnosed with dementia, I knew we had a long and painful road ahead of us. Her emotions ranged from angry to sad with bright spots of clarity. No one thinks they will become mentally incapacitated.

That’s one of the hardest parts of dementia. Everything looks okay. For an 80 year old woman, my grandmother easily passed as 60. However, we could see her mind fall apart piece by piece. She did amazingly well for many years, but eventually, the dementia completely consumed her.

  • First: Mentally. Besides the obvious forgetfulness, she lost her ability to reason. It became impossible to think logically and rationally. For my grandmother, a woman who valued her thoughts, voice and confidence, it was horrible.
  • Second: Physically. As time went on, she couldn’t physically get around the same. She couldn’t pick up her feet to walk. She shuffled from room to room, risking a potentially lethal fall with every crack and crevice.
  • Third: Agency. After the first two pieces fell, she could no longer support herself. It became unsafe to live at home alone. For many senior citizens, it is losing independence that hits the hardest. It feels like giving up.

Because mesothelioma is an aggressive cancer, the health of some people diagnosed with the disease may decline more rapidly than others who are ill.

Leaving Home and Entering Hospice Care

We tried to keep her at her home for as long as possible. She thrived for months between home care aides and family caregivers, but soon, managing her health and the cost to keep her safe was too great. Our family could no longer keep her at home.

She moved first to an assisted living facility, then to a nursing home. At this point, she deteriorated quickly. She was in constant pain. We soon realized she deserved something better. It took only two days to move her into a hospice house.

It was a godsend. The hospice team worked hard to establish a plan for pain management. Finally, after weeks of pain and anxiety, she was comfortable. At the hospice house, my grandmother had round-the-clock care. She never had to be alone — her biggest fear.

For Mom, hospice made it possible to be together. With a large room and a spare guest bed, my mom could be by her side all the time. Rather than flying across the country every weekend, my mother was able to spend the last few weeks with her mom. This was different than the weekends spent caring for my grandmother at home.

Rather than administering medications, forcing her to eat and helping her around the house, my mom became her daughter again. Time was spent sharing memories and creating new ones. Time my mother will cherish forever.

Eventually, fate took its course, and with my mom by her side, my grandmother passed away.

Putting Myself in Her Shoes

While my grandmother’s passing is one of the most difficult losses I’ve faced, I knew we were able to give her the best final two weeks with days filled with relaxation and spending time together. Those two weeks were better than the months before filled with tears and pain.

We regret only one decision: We didn’t consider hospice care sooner.

It seems like an odd regret, but for my grandmother, her last few months had been filled with pain and confusion. We spent so much time hoping she would get better despite knowing it was impossible. It’s hard to understand whether we waited on hospice for her or for us.

Were we too scared to face what was happening? Did we think that hospice meant giving up?

Either way, we made decisions that prolonged her suffering. We forgot the importance of focusing on her quality of life. I know we were scared, but we can’t even imagine how she must have been feeling.

Nobody enjoys making these difficult decisions. It never gets easier. But the most important thing to remember is to put yourself in their shoes.

What would you want?

Cara joined The Mesothelioma Center as Social Media Specialist in July 2015 to continue her mission of making a difference in world. Every day, Cara speaks with survivors, caregivers and their loved ones in the online mesothelioma community to answer questions and offer emotional support. If you have a story idea for Cara or you'’d like to learn more about social media, please email her at ctompot@asbestos.com.

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