Caregiver Support

Connect with a Caregiver Mentor through ALS Northwest Volunteer Program
Caregivers can be matched with a mentor who has "been there" through our mentor support program. New or current caregivers will be connected with a former caregiver who has already lost a loved one that can share experiences and support. Your mentor may not have all the answers, but they can undoubtedly relate to the challenges of supporting a person diagnosed with ALS. Request a mentor here. Reach out to Annie Teer with any questions: annie.teer@alsnorthwest.org.

Take Care of Yourself
Caregivers often do not get adequate personal time. It is important to take care of yourself both physically and emotionally. Taking time for yourself is not selfish and will improve your capacity to care for your loved one. Make your needs known and create time to do the things that are important to you personally. Continue relationships and activities that are important to you. Read A Caregiver's Bill of Rights. 

Ask for Help
Caregivers may not ask for the help they need to provide care for their loved one and to take care of themselves. Have a "wish list" available when people ask what they can do to help you. Most people want to help, but do not know what to do. Accept help when it is offered.  Recognize the limits of your own endurance and strength and help your loved one accept care from others. A good resource for building a circle of help and care is Share the Care.

Be Aware of Depression
Depression can strike anyone and caregivers are especially vulnerable - it is the most common healthcare condition reported by family caregivers. Be aware of the early signs of depression and see your healthcare professional if you think you are becoming depressed. You do not have to live with depression.

Value Yourself
Caregivers do amazing work in caring for their loved ones. Recognize the important and good job you are doing and realize how valuable you are. Caregiving is a never-ending job and perfection is an unrealistic goal. Do not allow the normal feelings of guilt and anger keep you from seeing the value of your daily caregiving.

Manage Your Stress
Caregivers can strengthen their coping and stress management skills by communicating their feelings and needs, setting limits and making decisions to do things for themselves. Identify one or two people with whom you can speak freely about your needs and feelings. Professional counseling can be very beneficial for caregivers who are trying to not lose their own sense of self in the role as caregiver. It is appropriate to set limits and expectations with your loved one, family and friends. Physical exercise, creative activities, humor and social/family events are effective strategies for countering caregiver stress.

Educate Yourself
Knowledge is empowering. Get as much information about ALS and caregiving as you can. The more you know, the better prepared you will be in proving care and support. Ask friends and relatives to help gather information and resources. Become an advocate for your loved one and for yourself.

Know You Are More Than a Caregiver
In becoming a caregiver, some people experience a loss of the roles and relationships they had with their loved one before the illness. It is easy to see yourself as more a caregiver than wife/husband/parent or child. Identify ways to keep your personal and family roles and relationships alive. Talk about family events and news about children and grandchildren. Look at family photos together. Change the daily routines periodically like adding candles to the dinner table or putting on your favorite music. Making the effort to retain the relationship you have had with your loved one - aside from your role as caregiver will help you in coping with the multitude of changes family caregiving poses.

Talk to Other Caregivers
Caregivers who share resources and their own personal experiences report less stress and fewer problems. Establish networks and support systems with other caregivers to share solutions to common problems and to talk with people who can understand first-hand what you are experiencing. Consider joining an ALS Family Caregiver Support Group. You can also talk to other caregivers via online forums such as www.thefamilycaregiver.org and www.caregiver.com.

Utilize Assistance Programs
Take advantage of local, state and federal programs that support and assist caregivers.

• Oregon State Family Caregiver Program
  • Learn about resources available to help pay for care- Aging and Disability Resource Connection
  • Family Caregiver Handbook- Oregon Department of Human Services
• Washington State Family Caregiver Program
  • Medicaid Alternative Care and Tailored Supports for Older Adults
  • Learn about resources available to help pay for care- Area Agency on Aging & Disabilities
• Military Veteran Caregiver Support Program
• For help finding caregivers:
  • Aging and Disability Resource Connection of Oregon
  • Oregon Home Care Commission
  • Area Agency on Aging and Disabilities of Southwest Washington
  • Family Caregiver Alliance
  • Oregon Care Partners
  • National Alliance of Caregiving
  • Caregiver Action Network
•  

The role of caregiving can be rewarding but also fraught with emotional and physical challenges. Many caregivers face increased levels of psychological stress and burnout. Caring.com provides various informational resources to help caregivers and their loved ones get the support that they need.

It is very important to remember to take care of yourself. Caregiving is hard! Caregivers often feel guilty for taking care of their own needs, but taking time for yourself will allow you to be a better caregiver for your loved one. ​This is not being selfish. If you become exhausted, develop health issues, or grow resentful, it will not benefit anyone.

Here are some things you can do for yourself:

• Eat well.
• Get enough sleep.
• Exercise on a regular basis.
• Try stress-reducing activities like yoga, meditation, or going on walks.
• Carve out time for fun and leisure.
• Meet up with friends.
• Plan outings with your loved one.
• Talk about your challenges with close family and friends.
• Attend an ALS caregiver support group.

“Caregiving is a selfless act, but it can also take a heavy toll on you. As a caregiver, you want to support your loved one as much as possible. Part of that support means taking care of yourself, too. Caregiver burnout can lead to emotional and physical problems that, over time, can affect your outlook and your own quality of life.”

- Dr. Terry Heiman-Patterson, ALS neurologist

Asking for Help

The demands of caregiving on top of everyday tasks can feel overwhelming. As your caregiving needs increase, trying to do everything on your own can be difficult. It is important to learn to ask for help when you need it.

Finding the time to take care of yourself may mean scheduling respite care, which is any type of short-term caregiving assistance that provides rest and relief for you.

​Respite care could mean a few hours out of the house each day or week to exercise, schedule your own appointments, run errands, or go to lunch with a friend. Or it could mean a few days away to simply relax and recharge. Respite care can be provided by professional caregivers, healthcare professionals, family, friends, or volunteers.

​It is important to make sure that whoever is caring for your loved one has the skills and training to provide the level of care needed. You will also want to explain important care details so that you feel comfortable leaving.

If you feel uncomfortable asking for help or prefer not to coordinate all the details, you can ask a family member or friend to help you coordinate caregiving coverage for you. There are online calendars and tools like Lotsa Helping Hands, CaringBridge, and The ALS Association's Care Connection that can make it easier.

Finding greater balance and personal time may also mean asking for assistance with chores, meals, or other tasks. People often want to help but don’t know how. Think about ways others might be able to help you and your family. Could you use help with household chores like grocery shopping, yard work, or walking the dog?

If you are hesitant to schedule caregiving help because you feel guilty, it is important to continue to remind yourself that you are not being selfish. To be a better caregiver, you need and deserve to recharge so you can be in good physical, mental, and emotional health.

If your loved one is resistant to caregivers other than you, it is important to talk about it and explain that you want to help—and that you also need help. If your loved one is still resistant, you can ask the social worker or another professional at your ALS clinic or at ALS Northwest for advice. They might even be able to speak directly with your loved one to explain how important it is for you to have time to recharge.

Your Mental and Emotional Health

ALS caregivers often feel overwhelmed and experience a wide range of emotions. Whenever you feel you could use some extra support, try reaching out and connecting with others, whether a family member, close friend, doctor, social worker, counselor, religious or spiritual figure, or fellow ALS caregiver. It can be very helpful to talk with others.

When your loved one is diagnosed with ALS, it is normal to worry about what will happen to your loved one, your family, your finances, and other aspects of your life. However, if you begin to experience symptoms of depression or anxiety that are affecting your daily life, it is important to discuss these symptoms with a therapist, social worker, doctor, or member of your ALS clinic team or organization.

Your primary care doctor or mental health professional may suggest counseling and/or taking medication that can help ease your symptoms. If you decide to take medication, do so under the guidance of your doctor or mental health professional. It may take some adjusting to find the right medication and dosage that works for you.

“We can only give the best when we are at our best, so please take care of yourself.”

- Dolly, former ALS caregiver

© Your ALS Guide 2025-2027

ALS/FTD (Frontotemporal dementia) Family Caregiver Support Group (Open to family caregivers with a loved one with ALS & Frontotemporal dementia)
Virtual: Meetings occur the Second Thursday of every month from 4 - 5 pm PST
To attend and for questions, please contact:
Amber Smith at 503-966-1141 or amber.smith@alsnorthwest.org

Central Oregon Family Caregiver Support Group
Virtual: Fourth Tuesday of each month from at 1 - 2:30 pm PST
To attend and for questions, please contact:
Christina Riddock at 541-977-7502 or christina.riddock@alsnorthwest.org

Oregon Statewide Family Caregiver Support Group
Virtual: Second Tuesday of each month from 5 - 6:30 pm PST
To attend and for questions, please contact:
Christina Riddock at 541-977-7502 or christina.riddock@alsnorthwest.org

Portland Family Caregiver Support Group
Third Tuesday of every month from 4 - 5:30 pm PST
The Redwood Room
6650 SW Redwood Lane, Portland, OR 97223
To attend and for questions, please contact: 
Amber Smith at 503-966-1141 or amber.smith@alsnorthwest.org

Salem Family Caregiver Support Group
First Wednesday of every month from 5- 6:30 p.m. PST
Broadway Commons, Second Floor Conference Room
1300 Broadway St NE #100, Salem, OR 97301
To attend and for questions, please contact:
Mary Rebar at 541-990-1246 or mary.rebar@alsnorthwest.org

Southern Oregon Family Caregiver Support Group
Meets quarterly on the second Wednesday of the month from 2 - 3:30 pm PST
United Way of Jackson County
60 Hawthorne St, Medford, OR 97504
2024 Schedule: February 14, May 8, August 14, November 13
To attend and for questions, please contact:
Laura Geilenfeldt at 541-292-8775 or laura.geilenfeldt@alsnorthwest.org

SW Washington Family Caregiver Group
Third Tuesday of every month from 4 - 5:30 pm PST
St. Luke's Episcopal Church
E 4th Plain Blvd, Vancouver, WA 98663
To attend and for questions, please contact:
Susan Pennock at 503-776-0900 or susan.pennock@alsnorthwest.org

See our calendar for monthly support group dates.

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 first symptoms, 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.

To learn more about the disease, visit What is ALS?

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 us at ALS Northwest. 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 ALS Northwest, which 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.

Visit The ALS Home And Daily Living Guide

​You may be able to find answers to many of your questions in Your ALS Guide's ALS Home and Daily Living Guide. This free, online caregiving guide has tips and information from ALS experts on topics like bathing, toileting, mobility, transferring, grooming, and dressing.

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