Spinal Muscular Atrophy: Self-Care Tips for Caregivers

Spinal muscular atrophy (SMA) is a lifelong condition.¹ SMA is most commonly diagnosed at birth or during early childhood. The symptoms of SMA depend on which type a person has. But most people with SMA will need lifelong care and support.^1,2

Caring for the caregiver

Parents and caregivers of people with SMA give a lot of love, energy, and time to support their loved ones. This can lead to stress, loneliness, and damaged relationships.

Many caregivers also neglect their personal health. They can experience sleep deprivation and eat poorly. Many do not make time to exercise or seek out healthcare when they themselves are sick.

In order to provide the best care and be there for your loved one, it is also important to take care of yourself along the way.^3-5

4 tips for caring for yourself when you are a caregiver

1. Set aside time for your personal health

First and foremost, make sure you eat a well-balanced diet and drink plenty of water each day. Make sure to incorporate exercise into your week – at least 3 days per week, if possible.

Taking a short walk, gardening, or even household chores can count as exercise. If time is a problem, break it up into shorter increments throughout the day.^3-5

Remember to take care of yourself! A balanced diet and exercise can keep you fit and healthy. They also can lead to better sleep and reduce depression and anxiety – which are common among caregivers.

And do not forget to keep up with your own doctor’s appointments. You cannot take care of your loved one if you are not healthy yourself.^3-5

2. Make time for relationships

Caring for a loved one can often keep you separated from the other people in your life. But it is important to make time for others who care about you.

Take a moment to make a phone call to an old friend, send a text to another family member, or invite someone over for a cup of coffee. Whatever you can do to stay connected with others will only strengthen you.³

3. Seek support

You may find that friends and family offer to help, but you never accept. Or your loved one’s doctor asks if you need additional support, but you shrug it off.

It is ok to say yes! And it is even ok to ask for help without it being offered.^3-5

Let your friends or other family members help with chores around the house, or accept the offer of a hot meal. Perhaps you could give a list to a friend for a grocery run. Whatever shortens your own to-do list is great.^3-5

Feel free to look outside your own social circle, too. Ask your loved one’s doctor for sources of support. Join a support group of other caregivers. Ask your own doctor for a referral to a personal therapist if you need an ear and good advice.

Help can come from all sorts of places – friends, family, the community, or even professionals.^3-5

4. Reduce stress

Stress is a huge burden for caregivers. In fact, 1 study found that 75% of caregivers had higher stress levels than the general population does. Stress can look different in different people.

You might feel mentally or physically exhausted. You may feel burnt out. You could suffer from low self-esteem, negativity, or lack of concern for yourself.^3-5

It is not easy, but it is important to take time for yourself and your own needs. The tips above can help with stress, but there are other things you can do as well. Some ideas include:^3-5

• Meditate. Listen to guided relaxation or relaxing music, or just sit and breathe. Even 5 minutes helps.
• Try and take small breaks throughout the day in-between activities.
• Set realistic limits for what you can get done in a day.
• Make time for a hobby. Even just a couple of times a week, try and find time to do something you enjoy.
• Take a break if it is possible, whether you can afford outside help or friends or family have offered to step in. Take some time for yourself.