Partners or spouses may be the main caregiver for adults with spinal muscular atrophy (SMA). Partners may need to help with daily tasks and giving medicines. Caregiver experiences vary greatly depending on many personal factors.
Caregiving can strengthen your relationship with your partner. However, it can also add stress and lead to frustration and resentment. Take steps to reduce stress and manage your own health. Communicate often with your partner about how to support each other.
What care may I need to give for my partner/spouse?
Some adults with SMA receive care from their partner or spouse. Adults with less severe types of SMA are usually more independent with movement and daily tasks. They often need less support from their main caregiver.1
According to one study, people with type 3 SMA receive about 3 hours of care per day from their main caregiver. Most of this time is spent helping with:1
- Moving around the house
- Giving medicines and other treatments
- Getting dressed and feeding
Most adults with SMA are diagnosed during childhood. However, the needs of adults with SMA may vary over time. For example, adults with type 3 SMA sometimes lose the ability to walk when they are older. This can affect how much support they need with daily tasks. Other new complications or symptoms may arise or worsen over time.2
How does my partner/spouse having SMA affect me?
Every relationship and person with SMA are different. How SMA affects the partner depends on many things. This may include severity of symptoms, time of diagnosis, socioeconomic status, and other personal factors. For many couples, SMA can have a positive impact on the relationship. But negative effects are common, including:3
- Difficult decisions about having children
- Concerns about intimacy
- Disappointment about activities you may not be able to do
- Grief seeing your partner struggle
- Stress-related to balancing caregiving duties and your personal life
- Frustration and social isolation
- Fear of the future
If you are deciding whether to have children, talk to a genetic counselor with your partner. They can test your SMA status and explain the benefits and risks of different options.
It is common to feel guilty about having negative emotions about your partner’s SMA. But frustrations and stress are completely normal. Acknowledging your feelings is important to figure out ways to cope with them.
How can I cope with the stress of caregiving?
People with SMA have intimate and fulfilling relationships with their partners. People often report that caring for their partner strengthens their emotional connection. But it is common for caregivers to feel stressed, angry, and overwhelmed. This can worsen your mental and physical health.3,4
Balancing your roles as a spouse and a caregiver can be complicated. The role of caregiver can cause emotional, social, and financial stress. This sometimes can interfere with your relationship.5
Overcoming these challenges involves managing stress and nurturing your relationship. Make sure to communicate often about what you both can do to support each other. Ignoring problems can cause resentment to build.3,5
Other ways to cope with the stress of caregiving for a partner with SMA include:3,5
- Prepare ahead of time for changes in your relationship and typical roles
- Avoid trying to do everything, and let your partner do tasks independently
- Talk about your challenges to friends and family
- Ask friends and family for help
- Join a support group for caregivers
- Talk to a therapist or counselor to discuss ways to cope
- Spend time on your own hobbies and interests
Most caregivers work outside of the home. This can contribute to feeling overwhelmed. If you need to take leave from your job for a period of time, talk to your employer. Employees covered under the Family and Medical Leave Act can take 12 weeks of unpaid leave every year to care for relatives.6
