Home Care for ALS
Receiving an ALS diagnosis can be overwhelming, accompanied by a long list of tasks to handle. At some stage, the majority of families living with ALS find themselves in need of home care services including medical care, palliative care, or hospice care.
Home Care & Home Health Care
Receiving an ALS diagnosis can be overwhelming, accompanied by a long list of tasks to handle. At some stage, the majority of families living with ALS find themselves in need of home care services. However, the costs linked to such care can accumulate rapidly. While public insurance programs like Medicare and Medicaid, as well as private insurance, may offer partial coverage for medically based home healthcare, the primary financial responsibility typically falls on the family for the day-to-day assistance.
Home Care (Non-medical)
What do they do?
Home care services are supportive services that can be arranged for any amount of time needed, up to 24 hours a day, 7 days a week. They can be used on a regular schedule or on a temporary basis for respite.
They can include:
- Bathing and dressing assistance
- Toileting assistance
- Transfer and ambulation assistance
- Medication reminders
- Nutrition management
- Light housekeeping
- Laundry and lines assistance
- Transportation to appointments and errands
- Companionship
- Peace of mind and safety
Who pays?
Home Care is usually paid for out–of-pocket. Some long-term care insurance policies will cover home care, but it is not a benefit of Medicare or most private health insurance plans. Medicaid does have a benefit for home care that you can apply for if you qualify. Veteran’s programs also cover home care.
Home Health Care (Medical)
What do they do?
Home health services are skilled services provided on an intermittent basis, with scheduled home visits to homebound clients only, under a plan of treatment ordered by a physician. You must have a skilled need (i.e. need a nurse) to qualify.
Services can include:
- Nursing Care
- Occupational Therapy
- Physical Therapy
- Speech Therapy
- Respiratory Therapy
- Medical Social Worker
- Following a specific plan of care, and under the supervision of a skilled discipline such as a nurse or a therapist, a certified home health aide may provide personal care for a limited time.
Who pays?
Home health care services are covered by Medicare, Medicaid and private insurance.
Understanding Palliative Care
Palliative Care is a specialized medicine focusing on symptom management with people who have a terminal or chronic illness. Palliative care is available to a person at any stage of an illness, like ALS, when symptoms require more regular intervention than a typical doctor’s appointment. Symptoms managed may be pain, anxiety, shortness of breath, fatigue, constipation, nausea and any symptom causing distress. This specific type of care is available at someone’s home where the team comes to the patient. The philosophy allows for symptoms to be managed at home, with the care and recommendations being available without having to leave the home. This can provide security of knowing a medical professional is available for evaluation and management of that person’s medical condition. The team explores your goals for care, helping you and your medical team understand your wishes to improve your quality of life.
Palliative care is different than hospice care. While on palliative care a person my still access all medical treatments they wish while when on hospice care, the focus is on comfort and certain medical treatments are not pursued.
Palliative Care Goals:
- Optimize Symptom Control
- Enhance quality of life for the patient and family
- Optimize functional status when appropriate
- Help with challenging care decisions
- Educate patients and families to promote understanding of disease process and expected further course of the illness
- Promote a system of care the fosters timely access to Palliative Care Services
Questions to consider when contemplating Palliative Care:
- What kind of training does the Palliative Care staff have?
- Is there a cost involved for me?
- How often will I get visits and/or contact?
- How do you communicate with my other providers?
Palliative Care should be considered when you or a family member have:
- Recommendation from physician
- Have a serious or life limiting illness
- Progressively declining health
- Frequent hospitalizations
- Decreased ability to perform regular activities of daily living
Definition
Palliative Care: An interdisciplinary consult service which focuses on providing care for patients with serious illness. Services can be provided at the same time as curative/life-prolonging care if desired.
Hospice Care: An interdisciplinary approach to providing care for patients at the end of life that focus on pain and symptom management. Comfort is the primary goal.
Eligibility
Palliative Care:
- Physician order
- Diagnosis of serious illness at any state of the disease
- Ideally early in the course of an illness.
Hospice Care:
- Physician order
- Diagnosis of a terminal illness
- Certification by a physician of prognosis likely to be 6 months or less.
Goals of Care:
Palliative Care:
- Disease education and assistance with deciding on treatment options
- Pain and other symptom management
- Assistance to cope with the stressors of living with an illness
Hospice Care:
- Pain and other symptom management
- Improved quality of life
- Support the natural process of dying
Scope of Services:
Palliative Care: Interdisciplinary team includes a nurse practitioner, social work, and care coordinator. The nurse practitioner makes visits according to their assessment. A social worker is available and a care coordinator offers telephone support as needed. All care is coordinated with the patient’s regular doctor.
Hospice Care: Interdisciplinary team including doctor, nurse, nurse aide, social worker, chaplain, and volunteers. The patient’s regular doctor can continue as the hospice doctor. The nurse makes visits at least weekly. There is the availability of an on-call nurse 24 hours a day for crisis. Bereavement support is available to family for 13 months after the death.
Location Services are provided:
Palliative Care:
- Home
- Skilled Nursing Facility
- Assisted Living Facility
- Hospital
Hospice Care:
- Home
- Home Skilled Nursing/Assisted Living Facility
- If patient requires inpatient level of hospice care, needs to be in a contracted facility with 24hr. registered nurse coverage until symptoms are manage
- Hospital
Payer Source:
Palliative Care: As with any consult service, insurance will be billed the physician’s services. Medicare Part B will pay 80% of these charges; the remainder is billed to either a secondary insurance or to the patient.
Hospice Care: Patients elect their hospice Medicare/insurance benefit; the majority of hospice services are paid at 100%, including medical equipment and some medications. There may be out of pocket expenses for room and board charges at a facility.
Restrictions:
Palliative Care:
- No restrictions, patients may continue to receive curative/life-prolonging treatment.
Hospice Care:
- May not receive curative/life-prolonging treatment at the same time as hospice care.
- May be unable to use Medicare skilled days for payment of long-term care.
Professional Caregiving for an Individual with ALS
If you are a paid caregiver or home health aide who is or will be caring for a client living with ALS, this guide is for you. Caring for a person living with ALS is rewarding and challenging work that requires an understanding of the disease and the specific needs of your client.
This guide will help you:
- Understand ALS
- Assist with activities of daily living
- Partner with your client and family
- Learn about medical devices and equipment
- Get the answers and support you need
Your work will not only improve your client’s quality of life, it will provide a much-needed break for family caregivers. As you care for your client, be sure to take care of your own mental and physical health as well. Thank you in advance for your time, energy, care, and dedication.
Understanding ALS
ALS is considered a rare disease, which means that even experienced caregivers may have never worked with a client who has ALS.
Here are a few facts:
- Average life expectancy is roughly 3-5 years after diagnosis, though 10% of people with ALS will live ten years or longer.
- ALS can affect adults at any age, though it often begins in the mid-to-late 50s and older.
- For about 90% of people, the cause of ALS is unknown. Up to 10% of cases are genetic.
- ALS is not contagious.
- A few medications can help slow the disease, but only by months.
ALS is a progressive disease, so the needs of your client will continue to change. ALS affects everyone differently. For many, it begins by weakening muscles in the arms and legs. For others, it begins by affecting the ability to speak and swallow. For some, it affects their breathing first. However ALS begins, it will eventually affect the whole body.
Some people with ALS may experience subtle changes in thinking and behavior over time. A small percentage will experience the more noticeable symptoms of frontotemporal dementia (FTD) such as inappropriate behavior, irritability, impulsivity, and impaired social skills.
Caring for ALS Is Different
Caring for a person living with ALS can be more demanding than other types of care. It will require the physical strength to support and assist with safe transfers as well as the stamina to address many different needs throughout the day.
Caring for someone living with ALS can also be emotionally challenging. Your client will continue to lose the ability to do things like walk, eat, talk, and breathe. You will be working with someone whose physical decline will sooner or later lead to death.
If you feel that you are up to the challenge, this caregiver guide and website—along with the support of ALS professionals—can help you provide the best possible care for your client.
Partnering with Your Client and Family
Supporting a family impacted by ALS is about more than care and logistics. It is also about establishing trust, developing a meaningful relationship, and communicating clearly.
It is important to understand your family’s routines, preferences, and expectations. Don’t be afraid to ask your client and family members how they would like to communicate with you, if they would like privacy in certain parts of the house, etc.
Here are some other suggestions that may help:
- Get to know your client’s daily routine—and know that it will change over time.
- Get to know your client’s personal preferences for big and small things.
- Ask for help if you don’t know how to do something.
- Offer choices and promote independence when possible.
- Observe changes and anticipate adjustments.
- When you have free time, ask what else you can do to help.
Remember that every day will be different for a person living with ALS. Each time you arrive, it is important to understand how your client is doing and what has been happening since your last visit. Try to ask specific questions like:
- Has anything changed since I last saw you?
- How have your last 24 hours been?
- Did you sleep well last night?
- How is your energy level?
- How is your mood?
- Have you fallen since I last saw you?
It can also be helpful to ask family members how things have been and if there is anything you should know.
Try to keep in mind that living with ALS and not being able to do everyday things is incredibly frustrating. Your client may cycle through strong emotions like frustration, anger, and sadness. They may also be chronically short on sleep. So if your client isn’t always kind and takes some emotions out on you, do your best to keep a positive attitude and not take things personally.
Learning How to Use Equipment
As the disease progresses, people living with ALS need to use many different types of medical equipment and devices. Your client and family may ask you to help operate some or all of them.
Before using medical equipment, it is important to find out which devices you are and are not permitted to use according to your certification. You can ask your home health care agency, check your state’s laws, or reach out to a local ALS organization. Once you know what you are and are not permitted to do, communicate that with your family.
If you have permission to operate a certain device but do not have experience with it, ask for training from your client, family caregiver, agency, or medical equipment professionals. Your client’s safety must be the number one priority, so you need to know how to operate each device before using it.
Asking for the Support You Need
Whenever you don’t know something or feel like you need answers or additional support, it is important to be proactive and ask questions. It’s okay if you don’t know how to do something or are struggling with a certain situation.
Your client and family caregiver should be able to answer many of your questions about how to do specific things. But if you feel you need additional training or support, reach out to your home health care agency or the professionals who are already supporting your client.
Many patients attend an ALS clinic and work with a team of medical professionals like physical therapists, occupational therapists, nurses, and social workers. Your client may also be registered with a local ALS organization that has professionals who can support you.
Your family may have home health professionals like nurses or physical or occupational therapists who come into their home to provide specific, short-term care. And there may be others who visit to help fix or adjust respiratory, mobility, and communication devices.
If you ask, your family may be able to connect you with professionals who can either answer your questions over the phone or help train you in person.
If you would like to further understand your client’s needs, ask if you can accompany your client on an ALS clinic visit or attend an ALS support group.