Support for Caregivers and Families

Caring for someone with ALS is hard work and more than a full time job. But there are resources and volunteer support to help you care for your loved one with ALS.

ALS Northwest is here to offer direct support like financial assistance for in-home caregiving, as well as emotional support, advice in dealing with practical issues and access to community resources.

To talk about proactive ways to manage the care of your loved one with ALS, please reach out to your local care services coordinator or contact CareServices@alsoregon.org or 503.238.5559 ext 100.

Resources for Children and Adolescents coping with a loved one's diagnosis of ALS

The impact of an ALS diagnosis is profound. It’s not uncommon for daily tasks, such as meals, laundry, and children’s activities, to be less of a priority when providing care for a loved one with the disease. Caregivers may feel defeated by the growing list of tasks they are no longer able to manage.

It’s often hard to know when and how to ask friends and neighbors for help. And for those who want to offer a helping hand, it’s difficult to know just what is needed and how to make a difference.

Helping Hands

Helping Hands matches trained volunteers with families impacted by ALS. Volunteers can help with all sorts of tasks including (but not limited to): pet care, yard work, errands, companionship, and hobbies. You can request a pair of helping hands here. Reach out to volunteer coordinator Annie Teer with any questions at annie.teer@alsoregon.org. Learn more about our volunteer programs.

Asking for Help

Asking for help from family and friends can be difficult. Often well-meaning friends and family members also are not sure how to assist or when to offer support. Having a professional assist with these conversations can often be helpful in navigating how to start. Many families impacted by ALS often hear, “how can I help?” Tools for creating and managing online calendars and tasks help organize volunteers and community members that want to help out with tasks designated specifically by you and your family. There are a variety of tools that exist to help manage care, below are several options:

Hiring Care

Making the decision to hire caregiving support is a very personal one. Most individuals begin hiring care giving assistance by deciding to either pursue a home care worker through a home care agency or an independent care provider. There are many things to consider when making this decision, and we highly recommend speaking with your Care Services Coordinator for support and guidance. 

  • Hiring Care through an agency: Caregiving agencies have different intake processes, minimum hours required, and fee schedules. Some important things to keep in mind when beginning a home care search include:
    • Understanding the Company:
      • How long has the company been in business?
      • Is the company bonded and insured?
      • Are the caregivers’ employees of the agency and covered by insurance, or are they working as independent contractors?
      • How are caregivers recruited?
      • Does the agency conduct background checks?
      • How are caregivers trained and evaluated?
      • What happens if I don’t like the caregiver I’ve been assigned?
      • Who is my point of contact if a caregiver ‘no shows’?
      • What is the backup plan should my caregiver have to call out of work?
      • What is the minimum number of hours per shift?
      • How often do you bill, and whether you accept Medicaid or Long-Term care insurance?
    • Care Support Offered:
      • What care can caregivers provide?
      • Are there areas of caregiving that a caregiver is not able to perform?
      • Are caregivers able to dispense medications?
      • Are caregivers able to assist with respiratory equipment treatments, Feeding tube cleaning/administration, medication management, or invasive ventilation support?
  • Hiring Independent Caregivers: There are many ways to go about hiring an independent caregiver/provider. It is important to research your options thoroughly and recognize that Legal and financial considerations exist for all employers. We recommend consulting with a tax or accounting professional around issues including payroll, taxes and more.
    • Speaking with friends and family for personal referrals
    • ALS Guide for Paid Caregivers
    • Using websites that allow you to browse for qualified caregivers and/or create an advertisement:
      • Care.com- This website will allow you to browse for caregivers that fit the criteria you are looking for. They include companion care and personal care
      • Carelinx.com- This website will allow you to browse for caregivers that fit the criteria you are looking for. They include companion care and personal care
      • Caregiver Connection of Portland- Their caregivers service Multnomah, Clackamas, and Washington Counties in Oregon and Clark County/Vancouver in Washington State. They are open Monday through Friday from 9-6 and Saturday and Sunday from 10-6. They have 150 caregivers that are screened and insured. In their model, Consumer Directed Care, clients and caregivers determine details of arrangements together, including duties and compensation.
      • Northwest Senior and Disability Services- Information and referral specialist can help identify local resources and can send a list of local private caregivers (503) 304-3420 or toll free 866-206-4799
      • Oregon Caregiver Registry- This is a searchable database of in-home caregiver who are registered with the state as part of their in-home care program. These workers can also be hired as private pay providers.

Respite Care

Respite care is short-term care, with the primary purpose of offering a break to primary caregivers, whether through family members, friends, or professional caregivers. Respite care can involve one or potentially a combination of the following:

  • Friends and Family: Short term support from family members and friends
  • Hiring Professional Care
  • Respite Care Facilities: Some long-term care and rehabilitation facilities provide short term respite stay. Be sure to enquire about this when contacting care facilities.
  • Funding Options for Respite:
    • Respite Care Grants: Some county and local non-profit agencies offer respite care support to Family Caregivers. Ask your care coordinator about resources available in your area. Some hospice agencies also provide respite care funds.
  •  
  • Connect with a mentor
    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 Cassy Adams with any questions: Cassy.adams@alsoregon.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.

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. See different topics to help you better navigate caregiving.

Being a caregiver of someone with ALS is a very important role. It usually involves a number of tasks that can be very time consuming and can require a great deal of effort. If we do not learn to recognize that certain tasks and expectations can take their toll on us, regardless of what role(s) we play in life, we may find ourselves headed down the path of burnout. Burnout can be defined as exhaustion of physical or emotional strength or motivation, usually as a result of prolonged stress. Burnout may also be as subtle as simply no longer feeling "connected" to what it is we are doing. This can apply to a number of situations, such as the workplace, with family, or activities with a group we belong to. A key to guarding against burnout is to be willing to take a close look at our lives, in order to become more conscious of our thoughts and behaviors. Some practical questions to ask ourselves are, "What causes burnout?", "How do I know if I am burning out?" and "What can I do to prevent burnout?". We will attempt to answer these three very important questions below:

Common Causes of Burnout

Perfectionism: 
A perfectionist continually focuses on what needs to be improved, rather than what has been accomplished. When this becomes our focus, we may never feel that we have succeeded at anything.

Never-ending tasks:
Never-ending tasks describe work that appears to lack both a beginning and end. This can lead us to feel as if we have no closure, and therefore have not completed anything.

Work overload:
Work overload is when we have more work to do than we can complete in a given amount of time. When we operate this way, we set ourselves up for failure.

Impossible tasks:
Impossible tasks suggest that we are physically unable to do something we may feel we should be able to do. If we believe that we should be able to do something that we cannot do, we automatically feel like we have failed. It is a no-win situation.

Multiple roles:
Many of us play a number of important roles in our lives, such as wife/husband, mother/father, caregiver, and breadwinner. It is easy to feel overwhelmed when we are trying to play multiple roles in our lives.

Self-sacrifice:
Self-sacrifice occurs when we agree to take on certain tasks despite our true desire to complete them. When we continually agree to things that we would rather not do, we inevitably become resentful.

Unspoken feelings:
Any emotion that is unexpressed creates "blocks" in our ability to complete tasks and to function in relationships. If we do not speak about how we are truly feeling in a situation, those emotions surface in other, unproductive ways such as being chronically late, frequently forgetting things, or reacting in ways that are inappropriate to the situation. 

Common Symptoms of Burnout

It is important to remember that we are not alone in our experiences with burnout. At some point in time, it is likely that most of us will experience one or more of the following symptoms:

"Negative" emotions:
"Negative" emotions are the feelings that are often the least comfortable to feel.  One symptom of burnout is consistent "negative" feelings such as anger, anxiety, dissatisfaction and guilt.

Interpersonal problems:
We might experience conflict with others in the form of emotional outbursts, overreacting, hostility and withdrawal.

Health Problems:
Some common health problems associated with burnout are frequent insomnia, fatigue, headaches, backaches, lethargy and high blood pressure.

Poor performance:
We may become less productive due to boredom, lack of enthusiasm, feelings of fear or an inability to concentrate.

Substance abuse:
Another symptom of burnout is a marked increase in the consumption of alcohol and/or other drugs, cigarette smoking, caffeine and food.

Workaholism: 
We might be inclined to work more hours due to feelings of inadequacy, believing that the more we work, the better we will feel.

Depression:
Depression is the suppression of emotions. We may be depressed if we notice an overall feeling of hopelessness and meaninglessness. 

Loss of self-esteem:
Simply stated, the loss of self-esteem equals a decrease in self-confidence.

Solutions in Dealing with Burnout

Once we become more aware of why we experience burnout, and the various ways burnout manifests itself, we can begin to focus on ways to guard against it. It is time to develop a plan of action!

Take care of yourself: 

  • Regularly feed your body nutritious foods
  • Get sufficient rest
  • Exercise routinely
  • Pay attention to your body's signals of stress 

Practice stress-reducing strategies: 

  • Breathing exercises
  • Yoga
  • Progressive relaxation techniques
  • Massage
  • Meditation
  • Tai chi 

Develop a strong support system: 

  • Surround yourself with friends/family by whom you feel supported.
  • Attend a support group where you can share your concerns & feelings.
  • Create a support /discussion group at work where you can share your concerns, while being willing to talk about your part in the problem and the solution.
  • Utilize your company's Employee Assistance Program (EAP) to receive support/counseling or referrals for services that can assist you.
  • See a counselor or therapist if you are in need of more extensive mental health support. 

Create a fulfilling life: 

  • Make conscious decisions about how you want to spend your time.
  • Say "yes" to what you want to say "yes" to and say "no" to what you want to say "no" to.
  • Acknowledge your priorities and actively build your life around them. 

The key to avoiding burnout is to continually seek balance in our lives. The more informed we are about our own issues with burnout, the better armed we will be to take care of ourselves. Consequently, the better job we do of taking care of our own needs, the more we can be physically, mentally, and emotionally available to those around us.

Support Lines: Peer Support Lines and Crisis Resources

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 and Fourth Wednesday of every month from 2 p.m. - 3 p.m. PST
Hosted by Oregon Health Sciences University.
To attend and for questions, please contact:
Cassy Adams at 503-512-5141 or Cassy.Adams@alsoregon.org

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

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

Portland Family Caregiver Support Group
Third Tuesday of every month from 4 p.m. - 5:30 p.m. 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@alsoregon.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@alsoregon.org

Southern Oregon Family Caregiver Support Group
Meets quarterly on the second Wednesday of the month from 2 p.m. - 3:30 p.m. 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@alsoregon.org

SW Washington Family Caregiver Group
Third Tuesday of every month from 4 p.m - 5:30 p.m. 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@alsoregon.org

See our calendar for monthly support group dates.