It seems in our world that communication is the root to all; whether it be good or bad. However, communication with an individual who is unable to communicate their needs is surely the most frustrating situation for all concerned. Let's just imagine being paralyzed and having an itch on our lower back. Not only can we not ask for help, we cannot even show the person what is the bother and worse yet, we very possibly cannot get their attention. This is many times how the world works for not only those paralyzed; and also for stroke and dementia patients as well.
There are tools which have been developed for individuals who are totally aware of what is necessary and still have the ability to learn a new task (these range from a conversation board to a task board, sometimes a puffer activated computer). However, what do we use when the illness has wiped out the ability to learn a new task and possible much of our memory.
At this point many patients are so overwhelmed with frustration and lack of self-esteem, there is no answer. This is when we need the professional Occupation Therapist, Physical Therapist Music Therapy and Speech Therapist. When working together these specialists have the ability to help supply some answers. This is a referral (from medical doctor to the specialist and many times having to be approved by the health insurance) which is especially important to happen at the first opportunity in an illness which robs the individual of the ability to communicate. If we can catch the problem before the patient is completely frustrated the help can come faster and usually the learning curve is faster. www.aota.org or SpeechPathology.com
As friends and family this entire process is very frustrating and has the same effect on us. This means we need to recognize the need for a break and then take the break. We need to have someone on call to help us when the steam is rising to the top, not after it is at the top. For a productive adult to find it necessary to relearn all the basic lessons to maintain independence is a situation which requires more than learning the task. It also requires counseling and therapy. And for some this is only one more hurdle in the process of coming back to a close replica of themselves. We the well ones, must recognize the tremendous effort and all of the pitfalls which will create question and lack of self-esteem. We also need counseling to help us help our friend or family member.