You Have Parkinson’s…Now What?
BY A Neuro Challenge CARE ADVISOR
Parkinson’s disease is a neurodegenerative, progressive disease, meaning it gets worse over time. As with all cases of PD, each individual’s rate of progression and symptom severity will be different and unique to the person. A PD diagnosis brings on a host of varying emotions, stressors and fears. This disease not only affects the individual, but an entire family.
One of the first questions people often ask is “What will my future look like with Parkinson’s?” The question is, a difficult one to answer; much like an individual, the disease pattern is different for everyone. Some people with PD progress slowly and others, depending on age, lifestyle and severity of symptoms can progress much faster. It is truly a question that has no foreseen answer.
Rather than focusing on the future “what if ’s,” people with PD and their families are encouraged to focus on the “right now’s,” the things they can do to empower themselves and prepare for their long term well-being and care.
The following action steps may offer a guide to begin planning and having the conversations NOW with your spouse and loved ones about how you want to be cared for as you continue to age and deal with the progression of Parkinson’s disease.
Education and sharing educational materials with family and friends on Parkinson’s disease must be continuous. It is important to stay abreast of the latest treatments and clinical research and make sure that your closest family members fully understand the diagnosis and long-term effects. This is particularly important for families that have children or relatives that live out of state and are not present for the daily challenges that can occur with PD. It is important to remain open and honest with family and accept help when it is offered. You may not need the help now, but there may come a time when you will and the ability to reach out for and accept help is extremely important.
It is important to complete Advanced Directives while a person is competent and able to make future health care decisions. This allows family and health care professionals to know what forms of care you would like or refuse in certain medical situations. These are legal documents that may include your wishes related to financial or medical decisions and having a designated individual(s) to serve as your advocate in case you are no longer able to do it for yourself. These documents should also include your wishes for end-of-life care, DNR, palliative care or hospice. Be sure that once the Advanced Directives are completed, you sit down with your family and have a discussion about your decisions. Designate a place where everyone knows how to access the Advanced Directives and provide a copy to your designees.
Speak to a Financial Advisor
It is important to discuss with your planner what your long-term wishes are now that you have Parkinson’s. Will you be able to afford to stay in your home with help or move to an Assisted Living Community if the need for more care arises? Having a realistic understanding of what your assets are and your ability to afford a higher level of care will ease the burden of having to make these decisions in the future. Find out your insurance benefits, particularly a Long-Term Care insurance plan: Long-term care insurance provides respite and in-home assistance like non-medical companion caregivers. Typically, you will pay for these services outright and then be reimbursed for the cost of services. Every plan is different — be sure to investigate what your plan benefits are so when the time comes, you will know exactly how to access those benefits.