One of the benefits of volunteering with our local hospital is getting familiar with the various services offered by our local medical community. One of those services is hospice care, which my family has used multiple times.
When my mom was about 95 years old, I mentioned hospice to her as something she might consider for “down the road, when you need it.” She was still somewhat independent at the time, at home, but no longer able to drive or do housework. Lucky for her, she had children who helped her out around the house, took her to doctor appointments, did grocery shopping and performed other tasks that enabled her to remain in her home.
My mom was receptive to my conversations about hospice care. During one visit, I asked her if she would want me to find a hospice provider where she lived and if she would like to talk to them about the process of securing their services “when you need them.” She was agreeable, and I made a few calls after getting references from relatives and friends who had used hospice in the past.
Soon, my mom and I were sitting at her kitchen table with a hospice coordinator and nurse, learning about the services they would be able to provide my mom “down the road.” They were learning about my mom, too. This was important because they would be coordinating her care, her medications, her pain, and supporting her family when the time came.
While my mom was far from death at this time, the hospice program was happy to meet her and share information about their program with our family. Over the next several months, the hospice coordinator called and stopped by to visit and check in with my mom. She became comfortable with them, and while she was not yet a hospice patient, in my mind, they were already part of my mom’s care team.
The appropriate time came sooner than later as my mom fell in her kitchen, broke her hip (the second time), and ended up in surgery for a hip replacement. After spending a week in the hospital and a month in a rehabilitation center, it was clear that my mom would not walk again. Our family decided to bring her home, and while we did not know how long she would live, we called hospice for their support and services. In our minds, it was time, and we needed help.
Unfortunately, many families wait too long before securing hospice services for their loved ones. Calling hospice is frequently associated with giving up or believing the person is days away from dying. Perhaps a better way to view hospice care is to consider it as another layer of services and support for your loved one and your family. And why would you not want more services and support for your loved one and your family during this difficult time?
My mom received hospice services for 10 months. Did we call too early? Not in my opinion. I’m so glad we didn’t wait, because those were 10 long months for our mom and our family. The extra support and care from hospice made a tremendous difference.
Recently, we moved my mother-in-law from Virginia to our hometown of Westminster to live in a local assisted living facility, about 3 miles from our house. We requested hospice care the day she moved. We quickly received additional nursing attention, extra help with bathing and daily care, and gained emotional and spiritual support for our family.
We wanted her to have all the services and support we could provide. For us, that meant reaching out to our local hospice provider for their assistance. Seven weeks later, Mom passed away, and we are very thankful for the support from our hospice team. It made a significant difference in her care and comfort, and provided us, her family, with a support system. For us, the fact that a hospice nurse was just a phone call away to answer our questions was priceless.
If I may offer one piece of advice to my fellow elderly friends and loved ones, it would be this: Don’t wait too long to consult with a hospice provider for yourself or a loved one. Again, think of it as another layer of support for your loved one and yourself.
We all want our loved ones to die peacefully and as painlessly as possible. Hospice can help with that. We all want help in supporting our loved ones during their final months, weeks, days, and hours. Hospice services can help provide support for your loved ones and their family caregivers.
If there is one consistent message I hear from folks who requested and received assistance from a hospice provider, it is that they wish they had asked for their services sooner. And when I sit at hospital meetings and listen to hospice providers, they say that they wish family members would call them sooner.
It reminds me of folks talking about putting off making their bathroom accessible until “when I need it.” Of course, by the time “they need it,” it is already too late.
In addition to hospice, people may request palliative care, which is provided by many hospice providers today. With palliative care, the patient may still be receiving treatment for their disease or condition, and can help manage symptoms of, for example, cancer treatments. Hospice is usually provided when curative treatments are no longer recommended. Like hospice, palliative care may be provided in hospitals, nursing homes, other post-hospital centers or in the person’s home.
One message I hear from hospice doctors and nurses, however, is that too many people don’t make the transition from palliative care to hospice care soon enough. Consult with your medical provider, and remember, talking to a hospice provider is free. So, check what they can do for you and your loved ones, and make an informed decision.
To find a quality hospice provider, ask your medical provider or friends who may have used one, and check their references. Importantly, gather the information you need before you need it.
Finally, if you and your loved ones are dealing with a family member or friend who is dying, I wish you peace and love. Caregiving is physically and psychologically difficult, no matter how much you love the person in need of care. Be easy on yourself, take care of yourself and try to secure the support you need as soon as possible.
Please don’t be afraid to ask for help.
Tom Zirpoli is the Laurence J. Adams Distinguished Chair in Special Education Emeritus at McDaniel College. He writes from Westminster. His columns appear on Wednesdays. Email him at tzirpoli@mcdaniel.edu.
