An Often-Overlooked Challenge for People Who Cannot Speak: Families and Caregivers Who Hold Them Back
People who cannot speak face significant challenges.
First, there’s the inescapable fact of their condition. Once upon a time—prior to the stroke, the brain injury, or the onset of the condition that has robbed them of their ability to speak—they were able to communicate as well as anyone else.
Now, that ability to fluently communicate through speech has been taken away, whether temporarily or long-term. Obviously, this change in their condition can lead to deep sadness, even depression.
And don’t forget the feelings of isolation that many people who cannot speak feel when their ability to socialize with friends and co-workers is diminished.
But the challenges don’t stop there. The difficulty of communication for those who can’t speak can also lead to feelings of frustration with their families and caregivers as they struggle to communicate their most basic needs. What once took mere seconds often becomes a long-drawn-out process.
And all of this would be challenging enough if it weren’t for…
The Unexpected Challenge
All of the challenges listed above—sadness at your loss of speech, isolation due to diminished social interaction, and frustration due to the difficulty of communicating your needs to your caregivers—are to be expected.
But there’s an unexpected challenge that blind-sides many adults who are nonverbal: their families and caregivers often do less to help them regain their independence than they would like.
This lack of support might take the form of not being as attentive to your needs as you would like. Or it might be just the opposite—they might be so fawning that they don’t let you do anything for yourself, which just makes you feel even more helpless…
Or they might be so over-protective that they smother you and keep you from seeking other social connections, making your feelings of isolation worse…
Or they aren’t as helpful as you’d like in helping you find the tools that could make your life easier…
Why do they act this way?
Well, there are a number of reasons that could explain the situation, so let’s dig into it a little bit.
Why Don’t My Family Members and Caregivers Do More to Help Me?
Surprisingly, it’s not uncommon for families and caregivers to provide less than the ideal amount of support. And it’s understandable that people who cannot speak would feel frustrated by this lack of support.
But the first thing you need to understand is that it’s not you—it’s them! They often have one or more inadequacies or psychological hang-ups that are contributing to their less-than-stellar level of support.
Here are a few of the more common issues they might be struggling with, along with some ideas about what you might do about it:
Problem #1: Lack of Knowledge or Skills—It’s quite likely that your family members and other caregivers have never had to interact daily with someone who cannot speak. As a result, they simply don’t know what to do.
Solution: You may need to take the initiative and research sources where they can find the necessary training to become more skilled as a caregiver. There are a number of organizations that offer such training through their websites. Additionally, you can research tools that you could use to increase your independence and call these tools to their attention (more on this at the end of this post).
Problem #2: Lack of Understanding—Sometimes family members or caregivers think they know what you need, so they don’t take the time to check with you. As a result, they may make inaccurate assumptions.
Solution: You need to sit them down and communicate through writing or in whatever way works best for you exactly what you need help with and what you don’t need help with. Ease them into the conversation by first thanking them for all they’ve done for you to this point and telling them what’s been helpful. Then transition into your list of needs that haven’t been met and some suggestions for how things would work better for you. This conversation is likely to be an eye-opener for them, but in the end, it should make a huge difference.
Problem #3: Dependence—Some family members/caregivers like to feel needed, so they may actually do too much for you. In addition, they may actively discourage you from connecting/reconnecting with others outside of the home because that might make them feel like they aren’t providing for all of your needs.
Solution: It’s challenging enough to have your inability to speak holding you back, you certainly don’t need your caregivers doing so, as well. If they don’t understand that you need to connect with others socially beyond just them, you’ll have to have a sit-down to explain that being smothered is keeping you from regaining your independence.
Problem #4: Disengaged—This is the opposite of Problem #3, above. Why might they shy away from helping you as much as you need? Believe it or not, this is a pretty common situation, where the person is thinking something along the lines of, “I don’t like seeing my loved one in this state. I wish things could go back to how they were before.” This feeling of discomfort may cause them to actively avoid you and be less helpful than they could be.
Solution: If you find yourself in this situation, where not all of your needs are being taken care of, you need to have a talk with your family member or caregiver and explain that, while seeing you in a reduced state compared to the past may make them feel uncomfortable or sad, that doesn’t change the fact that you need their help with a few things. Simply pointing this out and giving them a list of the ways they could help (and nothing beyond that) could go a long way toward getting them to see, “Hey, this isn’t so bad. I can do this.” Which will hopefully lead them to stop avoiding you.
Problem #5: Resentful—This is a tough one. Oftentimes, family members/caregivers have to make sacrifices in their own lives in order to meet your needs. This might take the form of missing out on some of their kids’ games, events, and performances, all the way up to having to forego promotions or even quit their jobs in order to help out. In such a situation, it’s only natural that they might feel some resentment—not to you per se, but towards the situation itself.
Solution: If you find yourself in a situation where your family members/caregivers clearly feel some resentment because of the demands of the situation on their time, be proactive and do everything you can to be as independent as possible. The more you can do for yourself, the less they have to do for you. This may help them regain some of the time they’ve lost, which should improve their situation (and attitude).
Bottom line, while you’re the one who has lost your ability to speak, your situation impacts your family members and caregivers, as well. Be patient and understanding of how your situation impacts them.
That said, you need to stand up for yourself and push them to work through their hang-ups so they can give you the help you need to design your best life given the situation.
Speech Assistance Apps–The Pathway to Regaining Independence
The very best thing you can do to both improve your own situation and to lighten the load on your family members and caregivers is to work to become as independent as possible.
And the most powerful tool for regaining your independence is a speech assistance app that includes both text to speech and picture to speech capabilities. Such apps for nonverbal communication allow you to type in some text and have it spoken out loud by your device or, alternatively, allow you to touch a pre-set photo or a photo you’ve uploaded into the app and have your device vocalize a pre-recorded word or phrase.
APP2Speak is one such speech assistance app that allows you to quickly communicate with your family members and caregivers in your home, as well as with others at work or in any social setting.
To learn more about all the capabilities of APP2Speak and how it can be a game-changer for you, check out our How it Works and FAQ pages.