Caregiving can be a fulfilling experience that improves your relationship with loved ones. However, it is often a full-time responsibility that affects other parts of your life. Stress and fatigue are common among caregivers. It is important to take care of your own mental health while caring for a loved one.
Caregivers of people with spinal muscular atrophy (SMA) can have very different experiences. For example, caregiving may be different if you are caring for your child, sibling, or spouse. It also depends on the severity of SMA, socioeconomic status, and other factors.
Caregiving for children with SMA
Children with type 1 or 2 SMA often need full-time care for life. Parents are usually their main caregivers. The best way to support parents is to provide them with information early and often. Parents are the experts on their child. They want clear information about symptoms, test results, and treatments. They want help learning the specific skills they need to provide care. And they want help prioritizing and organizing care for their child.1
On average, children with type 1 and 2 SMA receive about 7 to 8 hours of care per day from their parents (or another main caregiver). This varies depending on severity and other factors. For example, children who need non-invasive ventilation usually need more support. Most of parents’ time is spent helping with daily activities or SMA-related activities, including:2
- Hygiene and dressing
- Feeding
- Bathing and showering
- Helping with movement
- Preparing special meals
- Giving medicines and supportive treatments
Parents may also spend time doing other tasks related to healthcare. This includes:
- Staying informed about clinical trials
- Managing accommodations in school
- Advocacy
- Coordinating healthcare in clinics and hospitals
Caregiving for siblings with SMA
Siblings and other family members may help provide care for people with SMA. In some families, parents may be the main caregivers, with siblings helping out with daily tasks. Sometimes siblings become the main caregiver if parents cannot provide care.3
As new treatments improve life expectancy, people with SMA may be more likely to outlive their parents. In these cases, caregiver duties often fall to siblings. Caregiving as a sibling includes many of the same tasks.
Many siblings feel that caregiving improves their quality of life. But siblings take on a large burden as caregivers.
Some siblings choose to take on the main caregiver duties. Others may feel pressured or expected to care for siblings if other family members are unable to.
It can be stressful to provide care while developing your own professional and personal relationships. These feelings are common, and you should not feel guilty for experiencing them.3
Caregiving for partners with SMA
Some people with SMA receive care from their partner or spouse. Adults with less severe types of SMA are usually more independent. They may need less support from a caregiver. For example, people with type 3 SMA receive about 3 hours of care per day from their main caregiver. Most of the caregiver’s time is spent helping with movement or giving medicines.2
Balancing your role as a spouse and a caregiver can be complicated. People with SMA have intimate and fulfilling relationships with their partners. But the role of caregiver can cause emotional, social, and financial stress. This can interfere with your relationship.
Make sure to communicate often so you can both support each other’s needs. All couples support each other in different ways that work well for them.4
Coping as a caregiver
Caregivers take on a large burden. Caregiving can sometimes be a rewarding experience that brings families together. But it is often stressful, tiring, and emotionally painful. Caregiving affects mental health in many ways, including:5-7
- Stress related to time spent providing care
- Fatigue and loss of sleep
- Uncertainty and helplessness
- Grief seeing a loved one struggle
- Grief related to death
- Frustration and isolation because of limited social opportunities
- Stress related to difficult decisions about care, especially ventilation
- Pressure on family finances because of medical care and equipment
These factors combine to worsen quality of life for many caregivers. Caregivers benefit from support from their families, doctors, and other caregivers. Ways to cope with the struggles of caregiving include:8
- Ask family members for help with overnight care
- 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