The decision to place a loved one in a care facility is heart wrenching no matter the circumstances. When the time comes, we are filled with uncertainty, apprehension, and an overwhelming sense of guilt. They took care of us; how can we not do the same? What will people think? Does this make me a bad daughter/son/husband/wife?
The Critical Role of Managing Care
I think it’s so important for caregivers to understand that placing a loved one is in no way synonymous with failure. Dementia is a long, agonizing road, and not everyone is equipped to care for a family member at home. Sometimes the decision to seek assistance makes you a better caregiver in the long run.
When you place a loved one your role will change, but you will remain the most essential member of the care team. Now you will oversee their care and act as their most staunch advocate. With daily care left to a team of experienced caregivers, you can be the daughter/son/husband/wife again. You can focus on their wellbeing, creating moments of joy, and just loving them. I can’t think of a more crucial role.
But with all of that said, what resources are available to provide help when needed?
The Long-Term Care Ombudsman Program
As a nurse, Jan Larsen-Fendt spent more than 20 years working with the elderly in various settings including rehab, long-term care, and hospice. When she retired, she wanted to continue her work with the elderly in some capacity, so she trained to become an Ombudsman.
What is the definition of a Long-Term Care Ombudsman? According to the Administration on Aging:
Long-Term Care Ombudsmen are advocates for residents of nursing homes, board and care homes, assisted living facilities and similar adult care facilities. They work to resolve problems of individual residents and to bring about changes at the local, state and national levels that will improve residents’ care and quality of life.
When she completed her training and became certified, Jan said, “I felt as though I should have a cape and a shirt with a big “O” on it!! I could finally DO something about people’s complaints/concerns.”
She wants caregivers to know there are places to turn for help when issues arise in care facilities. “The Ombudsman program is a government program and works side by side with the Department of Health,” Jan explains. “If you have concerns that are not being addressed by the facility your loved one is in, contact your local Ombudsman.”
Facilities are required by law to display posters bearing Long-Term Care Ombudsman contact information. You can also consult The National Consumer Voice for Quality Long-Term Care to find the Ombudsman in your area.
Thoughts on Hospice
Jan highly recommends engaging hospice sooner than later. Unmanageable staff-to-resident ratios can and often do lead to issues in long-term care facilities. While the staff may want to do more for a resident, the workload simply might not allow it.
As a hospice nurse, Jan explains, she was charged with overseeing care and serving as a patient advocate. Hospice typically does not operate under the same staffing constraints that impede LTC facilities so they are able to provide an extra sets of eyes and ears.”
“Don’t ever hesitate to ask for a referral to hospice. Don’t let a nurse just say, ‘No, he’s not ready for that.’ It’s up to the doctor. There are many ways to get a person on hospice,” says Jan. “Hospice does not always mean imminent death. We have even had people ‘graduate’ from the program.”
Don’t Go It Alone
The bottom line is this. Even if a loved one is not under your direct, 24×7 care, your role as his or her care manager is vital. But remember, you aren’t alone. There are agencies and services you can call on for assistance. Your local Office on Aging is a great place to start; don’t hesitate to reach out to them for guidance.
During my mom’s illness, I enlisted the help of the LTC Ombudsman. The office could not have been more supportive. I was immediately struck by their passion and dedication to ensuring our loved ones are being properly cared for.
We also utilized hospice services and found the extra support to be a godsend. Mom was on hospice for a relatively short period, but during that time, the caring compassion shown to us as a family was incredible.
Please don’t wait to reach out for support; this is a journey that doesn’t have to be traveled alone.