Having a communication disorder like aphasia is hard, but so is watching a loved one struggle to communicate. Caregivers come in many shapes and forms – mothers, fathers, husbands, wives, children, brothers and sisters, and aides. Your patience and perseverance never ceases to amaze us. This post is dedicated to you.
We’ve come up with five tips that might just further fuel your amazing dedication and help.
- Have Hope – this can be intensely difficult when you’ve come home from work after a long day, only to find that your loved one has not left the couch. But know that even though medical professionals may tell you that your loved one has passed that mythical “one year” time frame and will never improve again, there is still potential for improvement. Studies have shown that improvement from Aphasia, for example, is possible for many, many years post-stroke. People with language-learning disorders continue to improve with therapy. Even persons with degenerative diseases have potential to improve using compensatory strategies. Know that your loved one ALWAYS has the potential to improve – by keeping that mentality, you can help to inspire your loved one.
- Know Your Cues – many times there are a few simple tricks you can use to help your loved one find the word they need, though you’ll want to talk with your loved one to find the balance of when they do and don’t want help, and when they are too frustrated to try. For some people, giving them the first sound of the word they’re looking for can help (example: trying to help your loved one find the word for “chips”? Just give them “ch”… add one more sound at a time until they get it). For others, describing characteristics of the word they’re looking for can help (i.e. it’s green, it grows on the ground, and it makes me sneeze when it’s freshly cut). You can also use gestural cues (i.e. pretending to cut if you’re thinking of a knife), and encourage your loved one to do this too. By helping your loved one to find the word they’re looking for, you’re not only rebuilding the pathway in the brain to that word, but you’re also giving them a feeling of accomplishment – although they needed a few hints, they still DID find that word.
- Support Independence – this is a really hard balance. As caregivers, of course your first priority is the safety and well being of your loved one. But whenever possible, provide some independence. If your loved one can’t drive, help them to learn the nearby bus routes or find places they can safely walk to. If there are things around the house you need help with, ask if they can lend a hand. Not only does this give a feeling of purpose, but it also helps you!
- Take Time for You – you deserve a break. You really, really do. It’s hard not to feel like you should be doing x, y, and z for your loved one, but you’ve got to take care of yourself to be able to take care of others. Go to book club this week. Fit in that round of golf. Take a luxurious bubble bath. Read a favorite book in a quiet corner. Go out for coffee or dinner with a friend. You deserve it!
- Find Community – there is nothing more powerful than being able to talk to and exchange advice with someone who knows what you’re going through. I always encourage clients to find support groups, and there are great support groups out there for caregivers, too. For example, Boston University has a great group that meets once a month that starts with people with aphasia and caregivers together and then splits into two groups, one for people with aphasia and one for caregivers. The Internet is a powerful tool as well. There are discussion groups on Facebook, Pinterest boards, and blogs to find for your loved one’s specific communication disorder.
Any tips and ideas that we’ve missed? Share your best advice for other caregivers on our Facebook page.