It was time to decide. Kay was suffering from Alzheimer’s disease and just a week before, her husband Peter had had open-heart surgery, suddenly impacting their ability to live independently. Although they had been married 56 years, they had never faced a decision like this. They needed to make a decision about long term care services and settings.
Should they stay at home with the extra assistance of home health aides? Could they afford assisted living? Should they move closer to their daughter?
Whatever they decided, it would have a profound effect on their daughter Catharine, who drove them to appointments and would have to help them move.
The situation of Catharine and her parents is not unique. Forty percent of Veterans are over 65 years old. Often, long term care planning is not a priority and is something that families have to talk about when someone ends up in the hospital.
Peter and Kay ended up moving to three different facilities, each time with the assistance of their daughter and other family members. Today, Catharine looks back on those years as both physically and emotionally exhausting.
“Aging parents affect the whole family, “says Catharine, “My parents had so many needs. Helping them out was a full time job that greatly affected my siblings and me. Long term care conversations are so important to have early on. Not just in the moment of crisis. It would have been much easier if my parents had a game plan for aging.”
In response to the needs of the growing number of aging Veterans, VA developed an online Guide to Long Term Care, which includes decision aids — the Shared Decision Making Worksheet for Veterans and the Caregiver Self-Assessment — to help Veterans and their family members consider long term care options.
The Guide was developed by a team of health educators and geriatric specialists, led by Dr. Sheri Reder, and reviewed by older Veterans and their caregivers. “We are excited about the Guide to Long Term Care’s newly enhanced section on Shared Decision Making,” Reder says, “It ensures that Veterans and their caregivers have a clear process for making long term care choices, and decision aids to guide them through that process.”
VA social workers are already using the Guide and decision aids to help Veterans make more informed decisions about long term care. “I encourage Veterans to complete the Shared Decision Making Worksheet,” says Jennifer Perfect, LSW of the Puget Sound Health Care System, American Lake Division. “It is a great tool for facilitating dialogue between the Veteran and his or her loved ones regarding their long term care needs.”
Long term care conversations are so important to have early on.
These decision aids are worksheets that Veterans and their caregivers fill out to identify their needs, preferences and options. They can help Veterans weigh the pros and cons of long term care choices such as increasing help at home or moving to a nursing home. If they’re unsure what a specific long term care service entails, Veterans can use the Guide to get more information about services like adult day health and hospice care.
Veterans and caregivers can then use the completed decision aids to talk with the Veteran’s doctor to make an informed decision. “If previous research is correct, this should help Veterans feel less confused about which long term care services and settings are best for them, and lead to greater satisfaction with their decisions,” says Dr. Reder.
Social worker Jennifer Perfect spends most of her time working with older Veterans and those who need extra assistance. “Many people can become overwhelmed by the very concept of long term care and having a decision aid that breaks down care needs and care options in such a simple manner has been very helpful,” says Perfect.
Unfortunately, the Guide to Long Term Care was not available when Catharine was helping her aging parents. “Have discussions as soon as possible about your parents’ wants and needs,” said Catharine when asked what advice she would give other caregivers. “Revisit the conversation often and check out all the available resources.”
If you are a Veteran considering long term care options, or someone who cares for a Veteran, visit the Guide to Long Term Care to learn more about shared decision making and long term care options at www.va.gov/geriatrics/guide.