Life as a Caregiver for a Person With Paralysis

Caring for a person living with paralysis is one of the most rewarding things you will ever do — but it comes with its challenges. You must remember to take appropriate care of yourself to be emotionally and physically well enough to care for them. 

If you are new to your role as a caregiver, you likely have many questions about what that entails and what the experience will be like. Or, perhaps you have been a caregiver for some time and need reminders of how to stay healthy. No matter what stage you are at in your caregiver journey, read on to learn more about this valuable and vital role you will play caring for someone with paralysis. 

Being a Caregiver

The majority of those caring for people with paralysis are family members, which means if you are acting as a caregiver, it is most likely for a loved one. This role as their caregiver can be incredibly fulfilling, but unfortunately, it also sometimes comes at a cost. 

According to a study, caregivers are as much as 4 times as likely to experience depression and 3 times as likely to suffer from anxiety.  So what can you do to take good care of yourself mentally and physically, so you are best equipped to care for the person you love? 

Tips for Caregivers

Learn as Much as You Can

As a caregiver, you are an essential part of your person’s healthcare team. Staying as informed as possible will help you feel empowered to competently and confidently care for them. By learning all that you can about their disease, you will feel better able to make crucial decisions that affect them and act as their champion as you interact with their medical team. 

This also includes preparing yourself as best you can to be your loved one’s advocate in the following ways.

• Compile their medical history and have it with you at their appointments. 
• Plan for the future through financial planning, including estate or probate arrangements. 
• Decide about long-term care options if your loved one needs or will need to be placed in a nursing home. 

Seek Support 

Feeling like you have to go through caregiving alone will only increase your chances of becoming depressed or anxious. It is important to look for ways to connect to other caregivers and share resources and support. If you cannot find a caregiver group that meets online or in person, counseling is another beneficial service that provides a safe place for you to share your feelings and regain your emotional strength. 

Invest in Self-Care

Even if weeklong vacations away are not feasible, there are other ways you can intentionally unwind and give you the time you need to care for yourself. Scheduling these times may involve engaging the services of a home healthcare worker or asking another family member or friend to fill in for you, but do not let that be a reason to neglect yourself. The healthier you are, the more you will be able to care for your loved one. 

Take Advantage of Available Resources

There are numerous resources available for those living with paralysis and their caregivers. One such resource is the Christopher and Dana Reeve Foundation website and its Paralysis Resource Center (PRC), which provides free comprehensive information regarding grants and advocacy to improve the life quality of those with paralysis. 

Be Gentle With Yourself

Perhaps one of the most important things to do as a caregiver is acknowledging and understanding that you deal with a significant amount of stress daily. As a result, you are at greater risk of burning out than most people, particularly if you also balance any combination of work, marriage, parenting, or running a household. Paying special attention to yourself and taking the necessary steps to practice effective self-care will 

MYOLYN Is Your Partner Through Paralysis

At MYOLYN, we are passionate about improving lives and empowering movement for those with paralysis. So, whether you are a person living with paralysis or their caregiver, we are here to help. Check out our MYOBLOG for the latest news regarding FES exercise and living with paralysis, and contact us if we can serve you in any way. As a caregiver, you are an essential part of the journey — take care of yourself.