In a previous post I said that I would be talking to other families about their visions of the future for their child with developmental disabilities. I spoke with Bryan’s Mom last week about the future of her twenty-nine year old son.
On a scale from one to ten, with ten being total care and one being “I’m OK Mom, I can take care of myself.”, what is the level of care that Bryan will need? “He is definitely a ten”
Do you have a plan in place for Bryan when you are no longer able to provide care for him? “No”
What are your primary concerns for Bryan’s future? Bryan has extensive and complicated medical problems and his Mom is concerned about who will be able to provide not only the hands on care but the management of all of his needs when she no longer can.
Where would you like Bryan to live when he can no longer live with you? If he could receive the appropriate level of care, Bryan’s Mom thinks that a group home may be appropriate. But, she would like to be able to oversee his care there at least initially in order to make sure he is well taken care of, but she worries that by the time he could get a placement in a group home she may be either dead or too ill to do that.
Is there someone to oversee Bryan’s care when you no longer can? Bryan’s sisters could participate in making sure Bryan received the care he needs but she would not want them to take his care on full time. “They have families too.”
What is your best hope for Bryan’s future? Bryan’s Mom would like to keep him home as long as possible but he would need more funding so that she could get additional help to take care of him. When that is no longer doable a group home that could meet his medical needs would work and his sisters could watch over him.
Bryan's Mom went on to say that she is trying to meet all of Bryan's needs, work part-time, and help out with her grandchildren. Bryan attends a day program a few days a week but is not up to being there for five full days. His medical needs require medication, treatments, diet, and other physical interventions which take hours every day. Bryan's Mom is concerned about the effects of the unending stress and life limitations that are taking a toll on her own well-being. Like many other mothers of children with severe disabilities, she finds that there are days when she thinks she just can not "do this anymore".
Thank you to Bryan's Mom to sharing her fears and hopes about her son's future.