Investing in Home Healthcare Will Support Patients, Caregivers

The tightness creeps up in my lungs just as I’m about to make up the bed with a second clean sheet. I pause to catch my breath and wonder how unfolding a piece of fabric can make me feel like I just sprinted up a flight of stairs.

Making the bed. Taking a shower. Shopping for groceries. These are just a few of the daily activities I sometimes find are more challenging because of pulmonary hypertension (PH). While living with PH for the past five years has required some adjustments and forced me to slow down, I’m still able to pursue my professional goals and get through each day — good and bad — with a little help from my partner, friends, and family. 

I manage my PH with oral medications and oxygen therapy, which help me maintain an active life. Yet I find myself thinking a lot about the future. PH is a rare disease, and its symptoms — shortness of breath, fatigue, and dizziness — can worsen as the disease progresses. So, I am keenly aware that if my symptoms grow more severe, I would likely be unable to do as much, and could require additional assistance to maintain a consistent level of care. If I’m unable to shower or dress myself, or keep my living space clean because of my chronic illness, having an in-home health aide would help get me through the day. 

Funding needed for home, community healthcare

Over the last year, #CareCantWait and #CareIsEssential hashtags have appeared on social media to advocate for more federal funding to expand access to home- and community-based services that many disabled, chronically ill people and older Americans depend on to live with dignity and a sustained quality of life.

Recommended Reading

November 16, 2021 Columns by Mike Naple

A Doctor’s Departure Reminds Me of the Importance of Self-advocacy

An estimated 8 million Americans need assistance with their daily activities, such as the ones that can cause people with PH to become short of breath. New investments in home- and community-based services would offer flexibility to people who would prefer to receive care in their home, instead of in a facility or other institution. Advocates are also pushing for better pay and more resources for the home healthcare workers who provide this essential care.

Finding dependable home care for loved ones can be difficult because of the challenges facing the current home care system. A shortage of home care workers, lengthy waiting lists to quality for services, and other challenges are keeping care out of reach. It’s estimated that by 2028, the U.S. will need to fill roughly 4.4 million home care jobs. 

The COVID-19 pandemic has shone a spotlight on this crisis, as well as its effect on the 48 million family caregivers and the people across the country who have left the workforce to provide care to an adult family member, despite the financial hardship or emotional toll it puts on them.

Caregivers are an important part of the PH community. They play an invaluable role in the lives of many people living with a disease that can wreak havoc at a moment’s notice. As a patient, I try to put myself in the shoes of my partner whose help makes it possible for me to focus on things like my job and writing this column. Just like those of us with PH, caregivers can also experience their own breaking points with the disease. 

Investing resources to establish a more robust home health system would go a long way to ensure people get the care they need in their homes, while also providing relief for family caregivers.

Build Back Better

The U.S. House of Representatives recently passed a once-in-a-generation human infrastructure package that would allocate $150 billion for home healthcare. While this amount is less than what President Joe Biden and 40 senators originally proposed, it would still make a difference for people who have waited too long for home care assistance. The full $1.75 trillion domestic spending bill, called the Build Back Better Act, still faces an uncertain future in the Senate.

Caregiving exists on a spectrum. We all need care at some point in our lives, and it’s likely we will provide care for a loved one during our time on this planet. I might not need a home care worker now, but others certainly do. I’m grateful for the advocates who understand the value of making investments to strengthen the home care system now, and the elected leaders who are taking action to help more seniors and people with disabilities have a better quality of life.

Follow Mike on Twitter: @mnaple.

***

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.