November is National Caregiver Awareness Month, and here at Lingraphica, we know the important role that caregivers play in the lives of those who have had a stroke. To honor their efforts and labors of love, we offer some insights into what a "good caregiver" looks like to some already in the aphasia caregiving role. Please share this post with the caregivers of your clients who may benefit from it.
Whether someone has been a caregiver for one day or 10,000 days, most likely he/she wants to be a good one. When caregiving for someone with aphasia, that role becomes more difficult, as communication barriers add a level of complexity to meeting the needs of a loved one. Sometimes, the words don't/won't come out. Sometimes, the person with aphasia is sad or depressed and refuses to engage with the world. Sometimes, the caregiver is flat out TIRED. Sometimes, the caregiver wonders if she is up to the task, if he is doing a good job, if she is ENOUGH.
So, what does a "good" caregiver look like? What are the qualities that make up such a person? We asked the caregivers who attend Lingraphica's User Group in Princeton those questions...and here's what they had to say.
Qualities of a Good Caregiver
Patience - This one seems to top the list for most of the caregivers in our group. Being able to remain calm and use tempered language when in the midst of a difficult time or stressful situation go a long way in diffusing the frustration for the person with aphasia.
Sense of Humor - Being able to laugh at yourself or an awkward/challenging situation helps to keep things in perspective. You won't always get everything right, and when things go wrong, sometimes the best thing to do is step back and have a good laugh. Laughter releases stress hormones and endorphins, and it leads to a stronger immune system. So go ahead and giggle from time to time.
Taking Care of Yourself - You may have heard the saying, "You can't pour from an empty cup." This definitely holds true for caregivers. If you are drained, tired, and emotionally spent, caregiving will be a real challenge. Be sure to take time for yourself--have a 15-minute coffee break, go for a walk in nature, and get a good night's sleep. When you are refreshed, you have energy to give to your loved one.
Fostering a Sense of Independence for your Loved One - It's tempting for many caregivers to do (or want to do) everything for their loved one. But encouraging the person with aphasia to try to do things for himself/herself helps to establish some independence. It also creates confidence, which may have been shaken with the onset of aphasia. When appropriate, encourage your loved one to do tasks, answer questions (by speaking, by using a whiteboard, or by using a communication device), and run errands.
Organization - If you are not a planner by nature, a new routine of doctor visits and therapy sessions, in addition to day-to-day tasks, may have you a bit overwhelmed. Putting appointments in a smart phone with alerts or on a paper calendar can help you keep things in order and avoid missing important dates.
Becoming Educated about Your Situation - If you are a new caregiver of a stroke survivor, you may never have heard of aphasia until recently. Our group members recommend reading what you can about aphasia online and finding a support group with members who have already walked in your shoes. Knowledge is power, and the more you learn, the better equipped you'll be in your role as caregiver.
Avoiding Comparing Yourself/Your Loved One to Others - As you find other caregivers of stroke survivors and share your stories, be careful to avoid comparing yourself or your loved one with others. Every situation is different--stroke severity, the damage done in the brain, economic levels, motivation of person with aphasia to improve his/her communication, and availability of speech therapy are all factors that vary from person to person. Your situation is unique to you. Keep that in mind if you begin to wonder why another's situation seems less or more stressful than yours.
Providing Motivation for Loved One - If your loved one seems to lack the initiative to improve his/her communication, you can be a source of external inspiration by gently encouraging him/her to practice speaking or using his/her communication device. Regaining the ability to communicate after a stroke takes a lot of motivation, and some of that motivation may need to come from you.
Good Communicator/Listener - Remember that you are the one who can communicate fully. So when your loved one struggles to get his/her words out, listen intently, repeat back what you think you hear or write it down on a whiteboard/piece of paper, and ask him/her to confirm if you understood. Your willingness to take some extra effort will mean a lot to your loved one, and you'll likely get to the message he/she wishes to convey to you.
Having Compassion/Understanding Needs of Loved One - Putting yourself in your loved one's shoes helps you to really understand the struggle and frustration he/she must feel when trying to get the words out. Having compassion and empathy also leads to patience. When all else fails, give your loved one time to communicate on his/her terms and be ready to help facilitate the conversation. Your loved one may be frustrated often at his/her inability to communicate as he/she did before the stroke. At times, your loved one will likely become angry or frustrated if you cannot understand what is being said. While it may be hard, try not to take this frustration personally.
Attentiveness - There will be times when you have more tasks to accomplish than there are hours in the day. Take some deep breaths and give some attention to your loved one. If you are a spouse of a someone with aphasia, it's good to step back now and again to remember that you are a spouse first and a caregiver second.
Maintaining Normalcy - Your lives after a stroke have no doubt changed, most likely in major ways. To the extent possible, try to maintain a life that looks similar to your lives before the stroke. Go to see family and friends, eat out at your favorite restaurant, participate in your favorite hobbies (or make new ones), and take vacations (if you enjoy those). Life is definitely different with aphasia, but it can still be full and rewarding.
As professionals working with people who have aphasia, you likely know many caregivers who may benefit from this post or the eBook below. Please feel free to share it with them.
For more information on caregiving, download our free Caregiver eBook.