Parents of children with spinal muscular atrophy (SMA) are usually their child’s main caregivers. With support from doctors, parents become the experts on their child. They know the best ways to help their child according to the family’s beliefs.
However, adjusting to the life changes that come with caregiving can be difficult. You may have to spend most of your day helping your child with daily activities. You may make hard choices about your child’s care.
These and other caregiving stressors can hurt your mental and physical health. Managing your own stress can help keep you and your child healthy.
What care will I need to give my child?
If you are the main caregiver for your child, you may spend most of your day providing care. According to one study, children with type 1 or 2 SMA receive about 8 hours of care per day from their main caregiver. Other caregivers typically give another 3 to 6 hours of care per day. Children with more severe types of SMA usually need more support from caregivers.1,2
As the main caregiver, most of your daily caregiving time may be spent helping with basic daily activities. This includes:1
- Dressing or changing
- Feeding
- Bathing or showering
- Helping with movement
You may also have to help with daily activities related to SMA management. This includes:
- Cooking and preparing special meals
- Giving medicines
- Helping with treatments, like respiratory support and physical therapy
Caregiving also includes other duties related to healthcare. These may not be daily tasks, such as:
- Coordinating healthcare in clinics and hospitals
- Staying informed about clinical trials
- Managing accommodations in schools
- Advocacy
What decisions will I have to make about my child’s care?
Children with type 1 or 2 SMA often have problems with breathing and swallowing. Treatments that support breathing and feeding are important for children with SMA to stay healthy. Many treatment options can support your child. They range from less invasive to more invasive.3
Choosing what care to give can be difficult. These decisions should be made with support from your doctor. They should also be based on your beliefs and priorities. Talk to your doctors openly about all treatment approaches. Some possible decisions include:3
- How to improve your child’s quality of life and comfort throughout life (palliative care)
- When to use non-invasive breathing support
- What to do when non-invasive ventilation is not enough to support breathing
- When to use a feeding tube
People often wrongly assume that palliative care means “end-of-life” care. It actually includes all methods of improving comfort throughout life.
Decisions about palliative care should begin at the time of diagnosis. Doctors who specialize in palliative care can help you make decisions and goals related to quality of life.3
How can I cope with the stress of caregiving?
Parents report that caregiving can be rewarding and have positive impacts on life. This includes improving emotional qualities like compassion and patience. Caregiving often brings families closer together as well.2,4,5
However, caregiving can cause significant stress. Some ways that caring for your child with SMA can affect mental health include:2,4,5
- Fatigue due to loss of sleep and time spent providing care
- Uncertainty and helplessness
- Heartbreak seeing your child struggle
- Grief related to death
- Isolation because of limited social opportunities
- Financial stress
Parents are often so focused on their child that they do not realize their own health is suffering. Some signs you may be feeling caregiver stress include:6
- Feeling overwhelmed or constantly worried
- Feeling tired often
- Becoming easily irritated or angry
- Losing interest in activities you enjoy
- Having frequent headaches or pain
Too much stress can cause depression and anxiety. Lack of sleep or exercise can increase your risk of health problems. Managing stress can help you stay healthy and give the best care possible to your child. Here are some ways to handle the stress of caregiving:6
- Accept help from family members, especially with overnight care
- Focus only on things you can control
- Set realistic goals for yourself
- Talk to a therapist or counselor, especially in relation to grief
- Practice self-care with healthy habits and hobbies
- Maintain a healthy diet and exercise routine
- Schedule social activities or participate in support groups
- Reach out to an SMA organization, social worker, or your doctor about financial concerns