Few people ever anticipate becoming a caregiver to a spouse, child, parent, sibling. Yet, every year millions of individuals fall victim to stroke or traumatic brain injury, and aphasia. Many of those who acquire aphasia go on to recover within a few months. However, others will experience impairments that can last significantly longer – for years or even for the remainder of their lives.
For caregivers whose loved ones continue to experience moderate to severe aphasia, the impact on their own lives can be far-reaching. Over 63% of aphasia caregivers spend as much as one third of their waking day providing care and helping with activities like communication assistance, transportation, food preparation, providing medication, and much more. The sudden amount of dependence your loved one has on you can be overwhelming. Here are some strategies that can help you to cope.
Know That What You Are Feeling is Normal
Many people are suddenly and unexpectedly thrust into the role of caregiver. This can lead to feelings like anxiety, fear, and grief. But even those who spend years as part-time or full-time caregivers can experience those same emotions on top of other feelings like anger, ambivalence, embarrassment, depression, frustration, and more.
Know that whatever you are feeling at any point in your journey is completely normal, valid, and important. Bottling your feelings up may lead to increased stress and anxiety, loss of sleep, or much worse. So consider reaching out to others who may have similar experiences, or consider making an appointment with a professional counselor.
Know the Difference Between Helping and Enabling
It’s not easy to know when you should jump in to help your loved as opposed to allowing them to fend for themselves. However, it’s an important decision that all caregivers need to make at some point. For example, if your loved one is capable of communicating with others without your intervention, you may be doing them a disservice by not allowing them to communicate independently. Moreover, you may inadvertently increase their dependence on you.
This isn’t a simple thing to gauge with a disorder like aphasia which can vary from day to day and setting to setting. However, when in doubt, encourage your loved one to communicate as best as he or she can. Some days this will go well, and other days you may have to intervene. But the important thing is that you give them the opportunity to hone their communication skills.
Make Sure Your Loved One Follows Treatment Recommendations
Perhaps it goes without saying, but the healthier your loved one is, the less likely they are to be dependent on you. This means helping your loved one to follow recommendations from your healthcare team, particularly around medication and nutrition following a hospital stay.
Additionally, it’s important to note that the incidence of stroke recurrence tends to be highest during the first year after the initial stroke. This makes it all the more critical to follow guidelines on preventing a future stroke. The more you can mitigate certain risk factors, the greater chance you have of keeping your loved one’s condition from worsening and increasing their dependence on you.
Help Your Loved One Stay Social
After an aphasia diagnosis, many caregivers see their relationships with others change. For example, over 50% report worsening relationships with friends since their loved one acquired aphasia. Many note contributing factors such as friends not being able to come to terms with the illness and the general lack of awareness around aphasia. The deterioration of relationships you’d come to depend on can have an isolating effect on both you and your loved one.
For this reason, we recommend joining an aphasia support group. There are dozens of support groups throughout the United States as well as a bevy of online support groups you can join from the comfort of your home. Many caregivers and their loved ones develop new lifelong friendships with people who are living through similar experiences.
Adjusting to your role as a caregiver is journey that can take any number of twists and turns. But, by acknowledging your thoughts and needs while enabling your loved one to succeed and keeping them healthy and social, you can lessen the burden you might otherwise have to shoulder.
To learn more about common challenges caregivers face and what you can do about it, download the 2020 Aphasia Caregiver Report.