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Information Guides

Questions to Ask When Evaluating a Caregiver Agency

Does your agency have experience working with ALS patients? 

Do you have caregivers who have specific experience with ALS patients? 

Do your caregivers understand that ALS symptoms manifest uniquely for each patient? 

Do your caregivers understand that ALS symptoms change and worsen over time? That the patient becomes less and less mobile and requires more and more assistance as time progresses?

Do your caregivers understand the purpose of a POLST? (Physician Orders for Life-Sustaining Treatment) Do they understand what to do with the POLST when 911 is called or an ambulance arrives or an accident occurs in public? 

Are your caregivers trained in the following:

  • Heimlich maneuver
  • Proper use of a gait belt
  • Proper use of a cough assist machine? 
  • Proper use of a suction machine? 
  • Proper use of leg compression boots? 
  • Proper use of thickening agent for liquids (drinks or soups)? 

Are your caregivers comfortable with performing all necessary ADLs (activities of daily living) for the ALS patient? This includes: 

  • Bathing all body parts
  • Toilet assistance 
  • Brushing and flossing teeth
  • Getting dressed
  • Feeding and drinking
  • Blowing and picking nose

Here Are Some Additional Resources

Acasa

Kantor & Kantor

ALS Association

Advocating for the ALS Patient with Your Doctor

What should we expect regarding a timeline and how my symptoms might manifest? 

What are the major decisions I’ll have to make regarding my treatment as my symptoms evolve? 

  • Medication
  • Wheelchair 
  • Wheelchair van 
  • Feeding tube
  • Tracheostomy + ventilator

Since this disease impacts all areas of life, I would like to talk with the following practitioners: 

  • Respiratory therapist
  • Speech therapist
  • Occupational therapist
  • Physical therapist
  • Nutritionist
  • Psychologist 
  • Social worker

What is the schedule for my treatment plan? How often will I see the practitioners listed above? 

What are the things I can do, or we can do as a family, to improve my quality of life? 

What is available to me for community support? 

What is hospice and when should we engage with a hospice agency? 

If I’m interested in Medical Aid in Dying, where do I get information? 

Does your clinic support assisting ALS patients with Medical Aid in Dying, if we are interested? If so, do you have additional parameters outside of the law that I need to be made aware of or do you follow the law precisely?

 

Questions to Ask When Evaluating a Hospice Agency

What does hospice mean and when should we engage with hospice? 

What are the services and service frequency your hospice organization offers? 

Do you have experience with caring for ALS patients? 

What services do you provide for the ALS patient? What services do you provide for the family? 

Do you offer counseling? 

Do you have a chaplain, a death doula, or a spiritual component within your services? 

Do you facilitate or participate with the Academy for Medical Aid in Dying?

 If yes, how? If not, what is the protocol for engaging with the Academy while under your hospice care?

 

Roadmap - Immediately After Receiving a Diagnosis

Doctor’s Diagnosis: Do you have a doctor’s note excusing you from work permanently? If no, get one immediately. 

FMLA Benefit: Immediately apply for FMLA. Your primary caregiver can also apply for FMLA – recommend choosing the timing of when your caregiver goes on FMLA.  

STD and LTD Benefits: Do you have short-term disability or long-term disability through your employer? If yes, initiate short-term disability. 

SSDI Benefit: Apply for SSDI benefits immediately. This usually takes the longest to get started. 

VA Benefits: Are you a veteran? If you have 90 days of active duty sometime in your life, and then an ALS diagnosis, you are likely eligible for 100% service-rated connection. Please contact the VA immediately as this will be your largest pool of benefits made available to you and your household. 

Life Insurance: Do you have a life insurance policy, either through your employment or private? If so, initiate the following inquiries: 

  • Waiver of Premium Rider or Disability Waiver of Premium
    • Ask provider “Given this diagnosis, do I qualify for Waiver of Premium?”
  • Accelerated Death Benefit or Terminal Illness Rider
    • Ask provider “Do I qualify for an accelerated death benefit, and what medical paperwork is needed?”

Long-Term Care: Do you have a long-term care insurance policy?