Celebrating National Family Caregivers Month:
Candid Thoughts from Maryland Caregivers
Family caregivers in Maryland provide more than 710 million hours of support each year—an essential contribution to the state’s economic outlook. Those who are early in the process don’t always recognize themselves as caregivers until they begin to struggle in their new role, while others who have been at it longer can experience financial, emotional, and even physical stress. Despite these challenges, many of us will be caregivers at some point in our lives, providing essential support that can also be deeply rewarding. No matter where you fall on the caregiving spectrum, there are always new questions to ask and resources to explore. MDOA invited caregivers from across Maryland to share their thoughts with us. Here’s what some of them had to say.
Vivian from Calvert County writes, “I am new to this. My husband showed signs of dementia for years but would not get diagnosed. Finally got a diagnosis, which helps, but there isn’t a place to find out what to do now. Where is the how-to manual? I need a list of all the things I need to do, and the order I need to do them in. Does one exist?”
Early diagnosis is important.
Many things can mimic dementia that can be treated. And while there is no cure for Alzheimer’s Disease, early treatment has been shown to lead to better outcomes for all involved. The AD:8 Dementia Assessment Tool can help individuals and their caregivers evaluate cognitive health concerns, leading to earlier and more effective treatment plans.
Once diagnosed, there’s a lot to consider for both the patient and the caregiver.
Maryland Department of Aging is partnering with Johns Hopkins University and the Maryland Information Network to develop an innovative screening tool to help caregivers identify their needs and guide those important next steps. The Johns Hopkins Memory Care Family Checklist will evaluate the health and wellness of both patient and caregiver, and turn it into an actionable recommendations report with prioritized information, direction, and resources. The checklist is currently undergoing pilot testing and will be available to the public around the first of the year.
Brenda from Montgomery County writes, “The challenging part for me was making decisions for another person without knowing the medical system and Medicare. Feeling very anxious about making mistakes.”
Implementing a health care plan and understanding coverage options are tremendous responsibilities for caregivers.
They aren’t typically medical experts, but making uninformed decisions about what plans and programs are best for their loved ones’ complicated medical needs can have huge consequences. Connecting with their local SHIP office can help caregivers make high-stakes health care decisions, including deciphering Medicare benefits, coordinating providers, working with hospital case managers, and contacting insurance providers on their behalf for assistance or clarification. The service is free and unbiased.
Caregivers can also benefit from creating an advance directive, which provides a clear legal framework to ensure the patient’s wishes are followed. An advance directive designates a health care agent and specifies treatment preferences, which allows caregivers to act with confidence in their loved one’s best interests without the emotional strain of guessing what they would have wanted.
Nita from Prince George’s County shares, “As an only child, caring for my mom with dementia has been a heartbreaking, soul-stretching journey. I became her memory, her voice, her warrior, while battling a system full of red tape and unreachable resources. The cost of care is overwhelming, and the emotional toll is constant.”
Caregiving doesn’t fall into one category.
There are financial burdens, health care questions, daily needs, and transportation demands that can be overwhelming for a single person to manage on their own. Maryland Access Point (MAP) can help. Trained MAP counselors can schedule an Options Counseling session to review your needs and help connect you to services, programs, and benefits that can help you save money, offer a much-needed break, and improve the quality of care you provide your loved one.
Other Family Caregiver Resources
- Respite Care provides short-term periodic and temporary care of individuals with developmental or functional disabilities in order to temporarily relieve the family or informal caregiver.
- Medical and Adult Day Care are structured group programs that provide health, social, and related support services to functionally disabled adults, age 16 and older in a community-based setting.
- Caregiver Webinar Series are 10-evidence-based training sessions intended to implement caregiver support, education, and resources to caregivers in targeted populations.
- Maryland Kinship Care 101 connects family caregivers of children who are not their own with resources that can help.
- Family Caregiver Alliance provides a range of caregiving supports and resources for caregivers.
- VA Maryland Health Care System provides support for Veterans, their families, and caregivers.
- NIH Caregiver Worksheets can help caregivers coordinate care and keep track of their caregiving responsibilities and needs.
- AARP Family Caregiving Guides help caregivers navigate the process of caregiving in several languages.
