Reverend Joe Green, Director of Spiritual Care and Bereavement
Unity Hospice and Palliative Care
It is my very special privilege to introduce to you a tool that we believe can be very helpful to you and yours who are living life with ALS.
One of the most significant obstacles any face battling ALS is “not knowing what you do not know.” That being a trite statement, it can also be very profound. We have experienced time and again the joy and relief when one is given an option they did not know exists. Anticipation and timing can be everything. For instance, we have made it possible for the provision of mobility devices such as a power wheelchair or communication device while funding was available. There are those who chose to have a feeding tube surgically inserted while they were able to tolerate anesthesia. Maybe it is very important to provide means to accompany that beloved doggy friend on her daily stroll!
Informed by tens of years of experience, The ALS Values Assessment Guide was developed by an interdisciplinary team at Unity Hospice and Palliative Care. We have been involved with numerous cases of those dealing with ALS and their care partners as well as the staff with ALS United. To one degree or another there are always questions around what to expect and what options may be available. Often these questions were asked too late to benefit from the many resources and interventions that would be accessible. We developed this assessment tool to offer every opportunity and not overlook any possibility to improve the quality of life for patients and families.
Those with ALS and your care partners will have questions regarding the “What If’s” as the disease progresses.
- What if I need assistance to do the things that are most important to me?
- What if I need assistance to use my arms
- and legs?
- What if I need assistance with my ability to speak and communicate?
- What if I need assistance with my daily needs?
- What if I experience changes in my emotional state and/or in my ability to remember and
- think clearly?
- What if it becomes more difficult to swallow?
- What if my breathing becomes more difficult?
- What if an emergency occurs?
- What if I don’t want to live like this anymore?
The assessment starts with what you value about your life, what you would like to sustain and what might be improved. Most importantly, we want you to know there are answers that can give you hope that not all is lost when dealing with this disease. Hope that you will be able to make choices as you determine. The Guide is more than a checklist. It is seen as a “gateway” to the many options for you in the vast world of the ALS community. You are never alone.
There are many excellent and extensive resources available to all that provide depth and detail for the information you seek. The Guide is a unique and concise tool that will give you confidence that you can address your needs and desires in a timely manner. Information is golden and may be the best medicine. There is no reason to “live in the dark.” Don’t take for granted you have run out of options. It may be too late if you wait. Download your free copy of the The ALS Values Assessment Guide: unityhospice.com/als-values-assessment-guide-helps-patients-improve-quality-of-life.