Receiving an ALS diagnosis is a devastating blow. In an instant an individual’s world is turned upside-down, and feelings of helplessness are quick to follow. The truth of the matter is that patients with ALS still have some power legally and financially, and it is important to manage those decisions as quickly as possible.
What is ALS?
Amyotrophic Lateral Sclerosis is a degenerative disease in which the brain loses the ability to communicate with the body’s muscles. Also called Lou Gehrig’s disease or motor neuron disease, ALS gradually paralyzes those afflicted until they are no longer able to talk, walk, eat, or breathe. There is no cure.
Taking Action After an ALS Diagnosis
If you are reading this, you have already taken the first crucial step after receiving an ALS diagnosis: educate yourself. Learn everything you can about the disease, how it will affect your life, and what you can do to be prepared. Another critical choice you will need to make is to accept help. Don’t be afraid to ask for help or to be honest when those you trust ask how you are. Let others reach out to you with compassion.
Logistically, there are other steps you can take to approach a diagnosis as prepared as possible:
Join a Support Group
An ALS diagnosis is the beginning of a different way of life. There will be many changes you need to make to adapt, and you will need to relearn many of the basics. During each challenge, it is important to remember that you are not alone. A support group can help you connect with other people who understand exactly what you are going through
A support group should serve as a safe haven. There you can meet people who are in various stages of the disease. You can learn from those who have already faced what you are going through and be a help to those for whom the disease is not so far along. It is a venue to collaboratively share practical advice
Establish an Incapacity Plan
While you still have your faculties about you, your top priority should be to make sure you have an incapacity plan in place. This plan allows you to authorize someone you trust implicitly to manage your legal and financial affairs (within limits set by you) when you are no longer able to do so. This person may be a spouse, sibling, close friend, or adult child.
This durable power of attorney is detailed in your incapacity plan, as is the durable power of attorney for healthcare. The latter is exactly what it sounds like, one person is chosen by you to make medical decisions on your behalf when you are unable to do so. The incapacity plan should also include a living will, in which you state your wishes concerning end-of-life care. Find a medical team which supports your medical treatment decisions and will walk alongside you.
If you already have an incapacity plan in place, receiving an ALS diagnosis is a good opportunity to review it and ensure it is up-to-date.
Update Your Estate Plan
The right estate planning attorney can help you make a plan for your loved ones and for yourself after receiving an ALS diagnosis. Updating your estate plan can help you determine how your property is titled. Reviewing property titles and making simple adjustments while you are still able will take a burden off of your loved ones and make the process much more streamlined.
Unfortunately, gifting your assets is not always a straightforward process. An experienced and trusted attorney can help you make those decisions in a way that protects your loved ones and property. You will also need to make sure that your plan fits with the financial and long-term care planning you are likely to do in light of your diagnosis.
ALS is a progressive disease, and unfortunately there is no cure. This means that your condition will only worsen as time goes on, and with major losses in functionality and mobility, professional full-time care is usually the best treatment option.
Long-term care is available in varying degrees of attentiveness. Assisted living facilities and nursing homes offer a place for residents to go to receive regular care. Hospice is specifically designed to provide companionship and support during the last few months of a patient’s life. It can be administered at home or in a dedicated medical facility.
A contract and care plan will be established upon entering a nursing home. These will spell out current medical, psychological, and social needs. The plan is legally binding, so it is a good idea to consult legal counsel before signing the contract.
Paying for Care
Developing ALS is an enormous financial burden. Exact expenses are dependent on what kind of long-term care patients receive, how long they are in care facilities, and other medical tests and treatments they receive. One thing is certain, though, most people can’t afford to pay for long-term care out-of-pocket. If you do not want to completely deplete your resources, take advantage of available financial aid. Meeting with a financial planner can open up new opportunities so you make the best plans for those left behind.
After you receive an ALS diagnosis, check your health insurance to see if ALS is covered. Adhere to the kinds of treatment options covered in your policy, and stay current with your premiums. Unfortunately, if you do not have long-term insurance at the time of diagnosis, the disease will likely disqualify you from coverage.
Medicare is a federal financial system set in place to cover a number of medical treatments. Unfortunately Medicare does not cover extended stays in long-term care facilities. Medicaid offers more treatment coverage and is still part of a joint federal-state program.