Pictured above at the Caregiver Support Convening are participants Irene Self and Eli Smith.
By Chris Askin, President, and CEO Community Foundation of Western Nevada
If we’re lucky, we will all live t be old. At some point, we will care for someone older than us and we unless we get hit by a bus, we will depend upon someone to help care for us. This is an issue that affects all of us.
The Community Foundation of Western Nevada is launching the Caregiver Support Initiative. We are learning where our community stands in providing support (financial, physical, emotional, and medical) for us when dealing with the challenges of caring for a loved family member.
Forty-six caregivers gave us an earful on September 10, at our first public convening. I was dismayed to learn that there are so many issues and weaknesses in our support system that destroy lives and families. But, there are also ideas and solutions. This is one of those looming HUGE issues that nobody is talking about but affects thousands of our friends in neighbors in Washoe County, many without the help that they desperately need.
Here is a quick recap of the Caregiver statistics in case you missed the June article.
There are 91,000 residents in Washoe County over age 60. 9%, or 8,200, of seniors, are serving as an unpaid family caregiver. Two out of three caregivers are women.
Supporting caregivers is a need that is growing, and will continue to grow. Every month hundreds of residents find themselves becoming a full-time caregiver to a family member, many of them with absolutely no warning. There is a good chance this will happen to all of us. Through public convenings, we gather people together who are taking care of family members and community service providers, to learn from each other and discover ways we can make the situation better. Our goal is to find solutions to the myriad of problems facing caregivers throughout our region.
Below is a sampling of issues discussed at the first public senior caregiver convening, sponsored by the Community Foundation of Western Nevada:
Financial hardships and challenges.
For example, under Nevada Law, a spouse cannot be paid to be a caregiver. Can you imagine how that impacts a family when the spouse has to give up their full-time job? The shock must be devastating. At the convening, we learned about the very high cost of providing care. If you are a caregiver, and you can’t work to make the mortgage payment, how can you deal with the cost of services for medical care for your family member? Cost may also tie to quality.
Caregivers also spoke about the need for making Medicaid paid training available to all caregivers. Because so many caregivers work, employee leave and flex-time for people in this situation are needed, with the overriding theme being that a caregiver can’t suddenly drop everything including their job to become a full-time caregiver. Currently, this is a too common situation, and families are frequently devastated.
Insurance and long-term care.
Preparation and education are needed. Coverage for providing support for critical house modifications will help many stay in their homes. It was suggested that we could revise SB86 to address legislative shortcomings, and look at the California coverage for long-term care. Many Nevada residents need to go there for services that aren’t provided, and in some cases aren’t covered by insurance, here in our home state.
Centralized Resource Referral System and Education
Not knowing what resources are available frustrated many caregivers. We need to develop a centralized information source and be sure everyone has access. It will be important to work with our local health organizations for expanded patient advocacy after discharge. We often become caregivers much earlier and younger than we expected and are caught completely unprepared.
Caregiver mental health and emotional issues
Personal stories were poignantly and prominently discussed at the meeting. Family members are not trained to deal with the stress and emotional issues brought up by their responsibilities. These issues and the impact on family relationships and marriages can be profound. It may be too late for particular types of planning. This is a particularly acute area of need in our community not just for caregivers, but for those receiving care. Support groups can be of significant help, but caregivers may not be available to leave their loved one, so respite care and transportation are also needed.
Legal issues and other planning
Complicated planning and difficult decisions have a sense of urgency that didn’t exist before. They involve working with an attorney about will and trust provisions. Other professionals relating to long-term care facilities, insurance, guardianships, powers of attorney, and family disagreements, all of these considerations, on top of the emotional, financial, health, and time challenges. It is clear to see why caregiving can bring on overwhelming stress, depression, and confusion.
Saftey and Security
Considerations include learning what home modifications are needed for the bathroom, car, hallways, and other spaces and then paying for them. Predators and scammers are a problem for those under stress who may be more vulnerable. Paid caregivers and care attendants who may steal or have undue influence were mentioned as a real problem because trusting those who take care of your loved one is a top priority. Caregivers talked about the importance of efficient and compassionate emergency respondents. Clearly none of us can be ready for this without help, regardless of how aware we are and of the time we have to prepare.
Medicare and Medicaid
Caregivers said that Medicare and Medicaid have many shortcomings such as not covering long-term chronic illness. They reported that people truly don’t understand the healthcare system and the way insurance works. This rose to the top as one of the most critical needs. The Caregiver Support Initiative will focus on helping the community in this area.
About 100 people attended the first convening September 10. Additional public convenings will be scheduled. At the bottom of this article is a contact number you can call if you want to participate. You may be the person with the ideas, knowledge, or connections that help us make some breakthroughs. The Caregiver Support Initiative action for support will include centralized resources, support groups, respite care, better communication with healthcare professionals, caregiver training, and assistance with financial and legal issues. Improving caregiving for the community, now and in the future, will take a village. Together, I believe we can make a measurable improvement in thousands of lives.
Convening participants commented that we needed more elected officials in the room. Two did attend, but this is a wide-spread issue that warrants the attention of our elected representatives.
From the first convening, we have learned so much. Thanks, Chris and Connie McMullen, Publishers of Senior Spectrum for helping us engage the community in this important work. The Caregiver Support Initiative is moving quickly to make a difference. Our approach isn’t to develop a study or report, but rather to make changes, literally every month, to improve access to local resources and services. Some needed actions, including legislation, may take longer, but we are committed to the endeavor and ask you to join us in our work. Please contact Nick Tscheekar, Director of Community Leadership at 775-333-5499 to learn how you can help.
The Community Foundation of Western Nevada connects people who care with causes that matter. This matters to each and every one of us.