Caregiving is a marathon, not a sprint. Equipping yourself for the long term is essential. Just as you would never participate in a marathon without proper preparation, you shouldn’t start your caregiving journey without planning and the right supports.
To ensure a smooth journey, here are some key resources and professionals to engage:
#1 Elder Law Attorney
Having your legal paperwork in order is vital. An elder law attorney specializes in the complex issues surrounding dementia and end of life planning. They will help you:
- identify the most effective person(s) to make health care and financial decisions on your behalf when you are no longer able to make your own decisions.
- think through important end of life decisions such as, will you want heroic measures (such as a feeding tube, ventilator, or even CPR to save your life when the end of your life is near)?
- navigate complicated family dynamics that come with dementia caregiving.
#2 Aging Life Care Professional®
Aging Life Care Professionals® (aka Geriatric Care Managers) work with individuals living with dementia and other issues, and their families. We are experts in navigating care options, can help you evaluate all your choices, and guide you to the best decision based on your own finances, preferences, and family dynamics. We know what is needed to stay at home, what to keep in mind if you are considering a retirement community and provide you with expert guidance when it is time to make a move. This knowledge will help bring clarity and confidence to the decisions that you need to make.
Aging Life Care Professionals are creative problem-solvers. One of our superpowers is overcoming resistance to help. After building a relationship, we can often talk people that have been resistant to help into accepting this much needed assistance. We can often predict what challenges will come next and plant seeds about topics you should be thinking about. We can help you shift from putting out fires (sometimes literally!) to being proactive.
With our support, there will be few surprises along the way. You can even outsource your caregiving “to do” list to an Aging Life Care Professional. Having this outside guide and unbiased expert is often the missing piece of the puzzle to move from crisis to action.
#3 Financial Advisor
The cost of care for individuals living with dementia continues to increase. A financial advisor can work with you, your elder law attorney, and Aging Life Care Professional to help create care plans that are realistic and sustainable given your unique financial situation. They can also make sure you are properly insured and have all your financial documents in order.
#4 Professional Fiduciary
Just as an Aging Life Care Professional can help take tasks off your plate related to medical coordination and oversight of care, a professional fiduciary can help simplify your financial life. They can assist with bill paying, organizing financial details (insurance payments, medical bills, and long-term care insurance reimbursements), and support you in your role as financial power of attorney.
Some fiduciaries can even serve as a power of attorney for finances or as an executor of an estate. Outsourcing these financial tasks to a professional can often save you significant time and money. Having help on the financial side will free up some time and energy to focus on the other demands of caregiving or create some much-needed time for self-care!
#5 Effective Medical Provider
Not all doctors are created equal, and not all doctors have an expertise with dementia. As the disease progresses, many doctors struggle to have solutions for the complexities and challenges that often come with Alzheimer’s disease and other dementias. Having a doctor with experience and a strong foundation with dementia is essential.
If you feel that your doctor is lacking creativity and tools to manage difficult behaviors, keep looking! A geriatrician is an ideal doctor to work with but can often be hard to find. We can often provide recommendations for effective medical providers. An informed and patient healthcare professional is an essential part of your team.
#6 Dementia Society of America
The Dementia Society of America (DSA) is an invaluable resource. Programs bring much-needed education, local resources, and life enrichment to individuals and families impacted by dementia. DSA provides an information request hotline (1-800-DEMENTIA®), many online resources, and an easy-to-use, web-based locator, which can help families and individuals find valuable support near them.
You can find the Dementia Society of American at www.dementiasociety.org
#7 Support group
Being a caregiver can be isolating, especially if friends and family visit less as your caregiving responsibilities increase. Being part of a community of people who are in a similar situation can be surprisingly comforting. It can be difficult for those who are not in the middle of caregiving to understand your perspective and to know how to help. Support group members get it. They understand. There is a shared knowing. Their collective wisdom will become invaluable.
Although taking the first step of joining a support group can be intimidating, I encourage you to take a leap of faith and dip your toe in the water. I think you will be pleasantly surprised. You are not alone!
#8 Caregiver respite and self-care
The caregivers I know give 110% to their caregiving role and frequently neglect themselves in the process. Most slowly give up their hobbies and feel selfish if they find themselves craving some time alone. It is not realistic or feasible to be on duty 24/7; it isn’t sustainable.
Dementia caregiving can be overwhelming. If you do not make yourself a priority, your own health and mental health will suffer. Being a caregiver requires that you are your best self and that is not possible without exercise, sleep, and time spent away from caregiving.
Getting a break for a few hours 1-2 x/week is essential (at a minimum!). There are many options for getting a break: utilizing family or friends, hiring a professional caregiver, or taking advantage of a local adult day program.
#9 Creative Engagement
The experience of being a caregiver can be far more gratifying if you know your loved one is having moments of joy in their life. Many communities are starting to develop more programs for individuals living with dementia:
- Alzheimer’s and Memory Cafés where individuals living with dementia and their caregivers can spend time in local restaurants and coffee shops with other people experiencing similar journeys.
- The Frye Art Museum has several dementia-friendly art engagement programs.
- Another great resource for engagement is an adult day program. These are programs that typically run for 4-6 hours/day to provide meals, activities, and respite for family members.
- Aging Wisdom has a Creative Engagement program where trained specialists support clients through personally tailored engagement focused on enhancing quality of life and well-being.
#10 Your local library and senior center
Knowledge is power. The more information you have about dementia and your role as a caregiver, the more empowered you will feel. There are many books available on caregiving, managing difficult family dynamics, or tips for difficult behaviors.
Your local librarian and senior center social worker are wonderful resources for finding just what you need. They might even be able to find you a book to dive into for pleasure reading as you start to expand your self-care time. The easiest way to find your local public library or senior center is through a Google search.
You can check out the Aging Wisdom blog and our Wisdom Wednesday podcast for guidance in navigating the journey as well.
If you have these 10 keys supports as part of your caregiving journey, you will feel far less alone and will be better equipped for the marathon ahead. You’ve got this!
Not sure where to start? Aging Wisdom can help! As your trusted advisor, we can assess your family’s current situation and help you navigate the best options. Schedule a free, get-acquainted call today to get the conversation started.
