The hints were more about avoidance of the inevitable, in my opinion. Generally, the practical advice I received from my professional helpers did little more than encourage me to institutionalize Tom. Incontinence is not a reason to institutionalize. For one thing, the first problems with toileting begin while your person is still able to be a viable part of their world and yours. For another, incontinence care is doable even when they are bed-ridden.
Countless families maintain their people in their homes until they die.
Whether or not the person can identify their surroundings has nothing to do with the care tasks of any terminal illness. However, incontinence care is more complicated with this disease group than others because of the inability of our people to give us permission to do what has to be done. This makes crossing the barrier to privacy more difficult for our caregivers, but it doesn t make it impossible. Christopher Reeve had no more choice in his care needs then did Tom and like Mr. Reeve, Tom s adjustment had more to do with the attitudes of those who tended him than anything else. The problems of dealing with hygiene are also impacted by every change in functioning this disease throws at our people.