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Why you need an action plan for the early onset of neurological disorders

by Amanda Lambert | Contributor
May 15, 2020


Managing a neurological disorder can be challenging and stressful. With committed planning and open communication, you can find a positive path forward.

The diagnosis and onset of a neurological disorder for you or a family member can be frightening and overwhelming. There are several neurological disorders that can affect someone as they age. The most common are Alzheimer’s (or related dementias), Parkinson’s disease, stroke and multiple sclerosis. Whether you are dealing with one of these or some other disorder it will be necessary to plan for a decline and possible disability. Focus on managing symptoms, and talking openly with family members. Preparing for the future will lessen stress and help everyone cope as time goes on.

Know what you are dealing with

Getting as much information about a condition is crucial to making decisions. The shock of a diagnosis can be upsetting and disorienting. Educating yourself will be empowering. It will also inform your decision making later. Here are ways to become better informed.

  • Ask questions. Your health care provider is there to answer your questions. Plan these questions before your appointments. If you are a family member of the patient, offer to help draft these questions ahead of time. It is your right to seek a second opinion if you are not satisfied with your health care professional.
  • Prognosis is critical. This may be an intimidating question to ask, but the most important. Ask about the likely trajectory of the disease process and the worst-case scenario. It doesn’t mean that the worst-case scenario will happen, but prepare just in case.
  • Use reliable websites for information. Avoid sites that promise cures or other questionable treatments. Look to the National Multiple Sclerosis Society or The American Stroke Association for great information. Other reliable web sites are: WebMD, Mayo Clinic and Healthline.
  • Treatment options and quality of life concerns. At times we focus so much on curative options that we forget about quality of life. Some neurological conditions are progressive in nature. Symptom management may include a healthy diet, exercise and stress management techniques.

Planning for the future

It is never too early to plan. Some neurological disorders may result in incapacity. Facing this sobering fact will open discussions about your family member’s wishes for their future while they still have the capacity to express those needs. It will also allow for the expression of personal desires to “live in the moment.” Let’s take a look at what needs to happen now to plan for the future.

  1. Get your legal and financial affairs in order. This should be priority number one. If you or your family member doesn’t have an estate plan, now is the time to arrange one. This includes health care and financial power of attorney. These legal designations can take effect immediately or upon incapacity. Other considerations include bill paying, increased care needs or housing options. Establish advance directives. If advance directives are already in place, revisit those in light of this new diagnosis. Discuss end-of-life wishes. Designate a family member as the primary decision maker in case of incapacity.
  2. Communicate with your loved one and other members of the family. Involve everyone in decision making. This will avoid misunderstandings and conflicts later. Assign tasks and responsibilities to various family members who are willing to take those on. Ask your newly diagnosed family member what their immediate and long-term wishes are. Expect that these may change over time.
  3. Anticipate care needs. Expect that care needs will increase. Planning for the costs associated with those needs should be part of any estate plan. This includes the following:
    • Evaluate medical insurance. Depending on the insurance your loved one has, there could be significant costs associated with increased care. Insurance may not cover these costs.
    • Who will provide caregiving? If family is unable to provide much of the care needed, who will do it? Private duty agencies charge around $30 an hour depending on the state where you live. The tasks that privately hired caregivers can do may be very restricted. Unless you have long-term care insurance, those costs will be out of pocket. If there are medical nursing needs not covered by insurance, those too could be an out-of-pocket cost.
    • What if your loved one is unable to continue living at home? There may come a time when the cost of privately paid caregivers exceeds that of assisted living. Or, your family member’s care needs are greater than what can safely be provided at home. To get an idea of assisted living or nursing home care in your state, refer to the annual Genworth Cost of Care Study. The yearly costs can be staggering. Although many people can live long lives at home, it is best to prepare for the possibility that this may not be feasible.

Keeping hope alive

Hope is what gives us the faith to keep moving forward. It is not only possible but preferable to be pragmatic and hopeful at the same time. Here are some ways to stay positive whether you are a caregiver, or the person recently diagnosed.

    Father and son caring for one another
  • Prioritize your values. What may have been important before your diagnosis may not be so important now. Examine what is of value to you. It could be family, faith or something you have always wanted to do but deferred.
  • Practice self-care. Be compassionate toward yourself and others. Take care of your physical, emotional and spiritual needs.
  • Connect with others. There are support groups everywhere. Even if you don’t have the ability to access these groups in person, there are online communities to offer support and education. Knowing you are not alone is a powerful message of reassurance.
  • Have a fighting attitude. This is not the same as having unrealistic expectations. It does, however, mean that each and every day has something positive to offer. Fight for your own quality of life, whatever that means for you. Take an active role in learning about and responding to your illness.

Alliance America can help

Alliance America is an insurance and financial services company. Our financial planners and retirement income certified professionals can assist you in maximizing your retirement resources and help you to achieve your future goals. We have access to an array of products and services, all focused on helping you enjoy the retirement lifestyle you want and deserve. You can request a no-cost, no-obligation consultation by calling (833) 219-6884 today.

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