Support for Caregivers
Caregivers encounter many challenges in supporting their loved one with ALS, some of which include the new experience of understanding how to aid those with physical limitations, swallowing, speaking, and breathing.
An ALS diagnosis impacts every aspect of caregivers’ lives as they adjust their efforts to meet ongoing work, family, personal and financial obligations, which change as the disease progresses.
The first step to receiving help is to identify whether you are a family caregiver. Not everyone considers the care they provide to their loved one as 'caregiving.' However, you are indeed a family caregiver if you provide care to an ill family member such as assisting with areas of personal care, emotional support and companionship, finances, and maintaining the household.
It is important to communicate your needs and desires with your loved one, the person you are providing care for. If you believe that you might like to pursue respite care services, it is essential to discuss this with your loved one. In doing so, you may discover that your loved one is very supportive of the idea. You may also find that having such a conversation opens doors for even more communication and intimacy.
Respite care can take different forms. In-home respite care usually involves a trained professional (often from a home health agency) who comes into the home to provide necessary care during a period when the caregiver is away. In some communities, there may be a church, volunteer agency or group that provides respite care by a volunteer. (The level of training the care provider should have will depend on the level of care needed by your loved one.)
Another way to partake in respite care services is through a facility or residence that employs trained health care staff on-site. This type of respite would allow your loved one to stay at such a residence on a short-term basis (as determined by you and your loved one) and entitle him or her to receive whatever cares he or she needs. This kind of service may be available through a local long term care residence, hospital or assisted living facility.
A less formal way of way of receiving respite care assistance is by utilizing family and friends who are eager to be helpful. The next time a friend or family member asks you how they can help, consider responding by telling them that giving you a break for the day or an evening, or even for a few hours might be the nicest gift they can give you.
The ALS Association Greater New York Chapter understands the financial burden that a diagnosis of ALS can cause and we are pleased to be able to offer a limited number of financial grants of UP TO $2,000 for patients diagnosed with ALS who are registered with the Chapter and whose primary residence is within the Chapter’s territory.
Grants will be distributed during two periods annually:
- July 15th deadline with receipts dated between January 16th – July 15th
- January 15th deadline with receipts dated between July 16th – January 15th
Applicants are encouraged to discuss the grant program with their Chapter Care Coordinator prior to submitting paperwork.
If you have any questions about any of the materials or requirements, please contact:
Care Services Administrative Coordinator
firstname.lastname@example.org or (212) 720-3059.
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.
- 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.
- 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 providing 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. Visit our calendar of events to find a caregivers support group.
- Utilize Assistance Programs
Take advantage of local, state and federal programs that support and assist caregivers. Some states and local agencies provide financial support in the form of vouchers or cash for services and equipment.
o Some states offer tax credits and deductions for family caregivers.
o Employed caregivers may want to apply for unpaid Family and Medical Leave under the Federal program.