Get in the Lifeboat: But Don’t Float Alone! Key Supports You’ll Want in Your Boat
Being a caregiver can be lonely. Over time, friends and family may start to fade away and your world begins to feel very small. As you encounter tricky situations, you might struggle with how to navigate them gracefully. This caregiving race is a marathon, not a sprint. Equipping yourself for the long haul is essential. Just as you would never head out to sea alone, you shouldn’t start this caregiving journey alone.
As you get into your lifeboat, you don’t have to float alone. Here are some key players you’ll want with you to ensure a smooth ride:
#1 Elder Law Attorney Having your legal paperwork in order is essential as a caregiver. 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. They will also help you 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)? If your family is not on the same page about how to provide care for your family member with dementia or ways to spend the money for care, an elder law attorney can be a helpful resource to navigate complicated family dynamics.
You can find an elder law attorney at the National Academy of Elder Law Attorneys: www.naela.org
#2 Aging Life Care Professional™ Aging Life Care Professionals are consultations who work with individuals with dementia and their families. They are experts in navigating care options, can help you evaluate all your choices, and guide you to the best decisions based on your own finances, preferences, and family dynamics. They know what is needed to stay at home, what to keep in mind if you are considering a retirement community and provide you with insight when it is time to make a move. This knowledge will bring clarity and confidence to the decisions that you need to make.
Aging Life Care Professionals are creative problem-solvers. One of their superpowers is overcoming resistance to help. After building a relationship, they can often talk people that have been resistant to help into accepting this much needed support. Aging Life Care Professionals can often predict what challenges will come next and prepare you on topics you should be thinking about. They can help you shift from putting out fires (sometimes literally!) to being proactive. With their support, there will be fewer 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.
You can find an Aging Life Care professional at www.aginglifecare.org
#3 Financial Advisor The cost of care for individuals with dementia continues to skyrocket. A financial advisor can work with 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.
You can find a financial advisor at www.cfp.net
#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!
You can find a professional fiduciary at www.aadmm.com
#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 provide solutions for the complexities and challenges that often come with Alzheimer’s disease. Having a doctor with experience and a strong foundation in 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. Aging Life Care Professionals and the Alzheimer’s Association can often provide recommendations for effective medical providers. An informed and patient doctor is an essential part of your team.
#6 Alzheimer’s Association The Alzheimer’s Association is an invaluable resource. They can connect you to local resources, provide education about the disease and what to expect as the disease progresses, and offer tips about navigating challenging behaviors. They also have caregiver support specialists who can help problem-solve challenges, without a cost.
You can find the Alzheimer’s Association at www.alz.org
#7 Support Group Being a caregiver can be isolating, especially as friends and family visit less frequently as the disease progresses. 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 can find a support group at www.alz.org
#8 Professional Caregiver The family 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 is not sustainable. If you do not make yourself a priority, your own physical 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.
You can find a professional caregiver at www.hcaoa.org
#9 Creative Engagement The experience of being a caregiver can be far more gratifying if you know your loved one with dementia is having moments of joy in their life. Many cities around the country are starting to develop more and more programs for individuals with dementia. Here in Seattle, organizations have created Alzheimer’s Cafés for individuals and their caregivers to spend socially engaging time in local restaurants and coffee shops with others on a similar journey. The COVID-19 pandemic has put many of these programs on hold, but see the paragraph below for options.
One local Seattle art museum, the Frye Art Museum, has many art engagement programs focused on dementia. Even during the COVID-19 pandemic they have found ways to support visitors creatively with online programs. The Greenwood Senior Center is offering virtual memory loss programs and support groups during the pandemic as well. Our practice has Creative Engagement Specialists on staff who work one-on-one with clients, tailoring activities and engagement to personal preferences and strengths. Even during COVID-19, we are finding amazing ways to enrich clients’ lives. Your local Alzheimer’s Association or Aging Life Care professional can refer you to similar programs in your area. Another great resource for engagement is an adult day program (many are temporarily closed due to COVID-19). These are programs that typically run for 4-6 hours/day and provide meals, activities, and respite for family members.
You can find an adult day program at the National Adult Day Services Association: www.nadsa.org
#10 Your local librarian 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, self-care, or tips for difficult behaviors. Your local librarian is a wonderful resource for finding just the book you need. They might even be able to find you a pleasure book to dive into as you start to expand your self-care time.
The easiest way to find your local public library is through a Google search.
You Are Not Alone! If you have these ten key supports in your lifeboat, you will feel far less alone and better equipped to face the rough seas ahead. You’ve got this!
Still not sure what to do next? Aging Wisdom® is prepared to help. Contact us and one of our Aging Life Care Professionals can provide expert consultation and care management. Call 206.456.5155 or schedule a consultation online here.