Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, resulting in muscle weakness, difficulty speaking, and difficulty breathing. As a terminal illness, it is important for ALS patients to plan for the end of their life and consider the following steps to ensure their comfort and dignity during this time. This is why we are sharing this list of 10 things to do if you have ALS.
Pain and symptom management
As the disease progresses, patients may experience pain, shortness of breath, and other symptoms that can be managed with medication. It’s important to talk to your doctor about what options are available to manage these symptoms.
Advance care planning & ALS
This includes making decisions about medical treatment, such as whether to continue with aggressive treatment or to focus on comfort care. It also includes designating a healthcare proxy who can make medical decisions on your behalf if you become unable to do so. One way to do this is through an end-of-life planning service like Myend.com an advanced care plan. Other Myend features include an e-will, funeral planning, and a last goodbye service.
Emotional support
Living with a terminal illness can be emotionally taxing, and it’s important to have a support system in place. This can include family, friends, and professional counselors.
Hospice and palliative care
As the end of life approaches, patients may want to consider hospice and palliative care. Hospice care provides comfort and support for individuals with a terminal illness, and palliative care focuses on managing symptoms and improving quality of life.
Legal and financial planning
It’s important to plan for the future and make sure your wishes are carried out. This can include creating a will, naming a power of attorney, and planning for end-of-life expenses. Myend.com offers a last will, which allows you to create a legal will online and store it securely.
End-of-life rituals and ceremonies
Some people find comfort in religious or spiritual rituals, while others may prefer a more secular approach. It is important to have a conversation with loved ones and healthcare providers to make sure your end-of-life wishes are respected.
Maintaining independence
As the disease progresses, patients may lose the ability to move, speak, and breathe on their own. Assistive devices such as wheelchairs, communication devices, and ventilators can help maintain independence and improve quality of life. Myend.com can help you plan and organize the necessary devices and equipment needed to help you maintain independence.
Maintaining connections
ALS can be isolating, but it’s important to maintain connections with loved ones, friends, and the community. This can include regular visits, phone calls, and video chats. Myend.com can help you plan and organize regular visits and communication with loved ones, friends and community.
Final arrangements
Planning for final arrangements can be difficult, but it’s important to make your wishes known. This can include funeral and cremation plans, as well as final disposition of the body. Myend.com offers a funeral planning service to help you plan a meaningful ceremony or ritual that reflects your wishes.
Legacy planning
Leaving a legacy is an important part of end-of-life planning. This can include charitable donations, creating a trust, or writing a letter to loved ones. Myend.com can help you plan and organize legacy planning, so that your memory and values will be passed onto future generations. How? With our detailed Memory Lane feature that allows you to create your life’s timeline.
Final Thoughts
This has been our list of 10 things to do if you have ALS. In summary, ALS patients nearing the end of their life should consider advance care planning, pain and symptom management, emotional support, hospice and palliative care, legal and financial planning, and end-of-life rituals and ceremonies to ensure comfort and dignity during this time.
One way to accomplish this is through the use of an end-of-life planning service such as Myend.com. After all we offer an array of features: an e-will, funeral planning, and a last goodbye service. These are all going to help you plan and organize your important matters. Sign up today for free and see for yourself.
