Author Archives: Colleen Davis

When Hospice Hurts

Over the past few months, our home care situation has shifted. My mother is now very frail. Lifting her with two people is difficult. I could not have survived autumn without the help of our home #hospice aides from Compassionate Care. But what happens when families are supposed to receive hospice services that don’t materialize?  When hospice hurts, we need to take action.

when hospice hurts

When Hospice Hurts

If you’ve reached the point where hospice services are appropriate for your loved one do some research on providers first. Look for evidence of client satisfaction before you sign anything. First, try a quick Internet search. Modern consumers rate everything from refrigerators to paint. You should be able to find provider rankings online. Ask potential providers if they employ many aides near your home who’ll be available to provide you with adequate support. Request references from families who’ve received their services. If they offer nothing, maybe they have nothing to offer.

A recent article by JoNel Aleccia and Melissa Bailey in the Huffington Post describes devastating situations when hospices hurt families. Patricia Martin, for example, lived in an Alaskan village and desperately needed help. She repeatedly called her hospice provider seeking drugs to ease her husband’s accelerating pain. Mat-Su Regional Home Health & Hospice had promised 24 hour crisis care. But the hospice doctor and nurse both failed to show up for six days, leaving Ms. Martin on her own. Her husband died shortly afterward.

What if Hospice Fails you?

Ms. Martin’s story is just one of many such tragedies occurring in the wake of tremendous growth in the hospice industry. The same #HuffPost article states that hospice is a “booming industry that served about 1.4 million Medicare patients in the U.S. in 2015.” That number includes a third of Americans who died that year. Hospice providers are both “licensed by state health agencies and subject to oversight by federal Medicare officials.” Any service regulated by these entities can also be reported for failure to respond or other forms of negligence. Step one is to call your state’s office for Adult Protective Services. You can also contact the State Medicaid Fraud Control unit and file a complaint.

Research suggests that there are many instances when families are deprived of required #hospice services. According to law, hospice providers must deliver routine care and respite care (to give family caregivers a break). In addition, they must provide two levels of crisis care for patients with acute suffering. Yet the HuffPost article states that according to the Centers For Medicaid and Medicare Services (CMS), “21 percent of hospices …  failed to provide either form of crisis care in 2015.”

If you are considering the use of #hospice services, you can learn much more about the industry online. You will find studies and consumer facts on the website for Kaiser Health News. This news site is a publication of Kaiser Health Foundation, a non-profit organization focusing on national health issues. More information can help you make better choices about how to help your loved one and meet your own needs as a #caregiver.

Caregiver Memories

Caregiver memories include a lifetime of our own experiences, plus the things we remember for our loved ones. Many of us keep photos around to remind them of who they were and what they did before #dementia struck. Autumn makes me nostalgic about these moments from the past. Is it the beauty of changing leaves or the fact that Fall signals the end of something?

caregiver memories

Today I took my camera and drove to one of my favorite spots. Weissport Canal lies at the southern end of a 22-mile trail along the Lehigh River. The Canal, which is part of the #D&L Trail, is a short ride from my house. Many bikers, walkers, and families exercise along the canal path which is bordered by water on both sides. One bank faces the canal, which is home to a flock of well-fed ducks, some tortoises, fish, and lots of water fowl. The opposite side faces the rushing waters of the Lehigh. The end of the path offers beautiful views of the surrounding mountains.

Caregiver Memories: make more now!

I always find beauty at the Weissport Canal. Sometimes it’s in the shape of the trees or their reflections on the water. Whatever I see is enhanced by memories of strolling along that path with my mother when #dementia first struck. She attended a program in a town near Weissport. Sometimes I’d pick her up at the end of the day and stop at the canal on our way home. The ducks swim all around the canal and many parents bring their children to see them. They delighted my mother most when they were quacking up a lot of noise. She loved to watch the adult birds teach their little ducklings how to swim. Once in a while, I’d remember to bring some bird food so she could feed them. That made her especially happy.

When you begin taking care of someone with #dementia, you never expect events from those early scary days to become cherished memories. The sudden arrival of symptoms fills you with dread as you struggle to get a diagnosis. Every day you fear that the absolute worst is about to occur. But if I could give any advice to a new #caregiver, it would be to focus on the simple activities that a dementia patient can still enjoy. Take those walks by the canal, or in your local park. Notice the changing leaves or any beauty you can still share. When nostalgia strikes in the future, it will help you a lot to have good memories on file.