Planning for the end of life is always challenging and emotional, with or without ALS. Having ALS often makes a pALS and their loved ones more conscious of the time we have left together. In order to relieve some of the stress, many pALS plan for how they want to address medical care needs and end-of-life plans. This can provide a sense of control and comfort for some people, ensuring that they are taking care of things for their families.
My father (pALS) and step-mother (cancer) passed away 11 months apart. They both chose not to undergo any medical treatment. They also let us know they wanted to live out their final days in the home they both shared for many years. We sat down as a family, and my parents shared exactly what they wanted in regards to medical care, funeral arrangements, financial planning, and their will, and all of the legal documents were prepared. Although the conversation was not easy, I respected and appreciated that they cared enough about themselves and our family to ensure that we knew exactly how to carry out their wishes.
If you are a pALS or a caregiver, have you made your loved ones aware of how you would like things handled? At what point do you address end-of-life medical care? What are your thoughts?