Start looking into what county programs or even insurance programs that could help financially then the next step is to find a good personal care attendant. This person typically comes into the home to help care for your son. Many times a relative or friend can become that PCA but the personal care provider has others if you do not have anyone in mind. THESE services are a God send. They keep the elderly and disabled in their homes but cared for and as independent as possible. Look in the yellow pages. I was first a PCA for my mom and worked through a company like this. When mom passed away in July I begged them to hire me in their office, I love this company and believe so much in what they are doing. My mom was able to live at home, eventually die at home and all the while I could care for her. I had the support of a great company and also could help make ends meet at home. Typically, a county nurse needs to evaluate the client to know how much care the person needs. It sounds intimidating but isn't too bad and if you find a great company you son will have the best of care!
An independent living center can also assist in finding caregivers, services, and technology. ILCs assist people with a wide range of disabilities to help them live as independently as possible. They may offer benefits assistance, job training, caregiver management, and other services. They should also be aware of accessible housing options in the area. The Office on Aging may be able to refer you or call 211 to speak with an information and referral specialist.
Have you checked the website for the Muscular Dystrophy organization? It says it offers info on finding resources for caregiving; go to http://mda.org/services/caregivers Also, contact your local Office or Dept. of Aging. If your son is legally disabled, there may be state programs that can provide financial aid for caregiving. My handicapped sister now benefits from such a program; it covers her caregiving costs 24/7. Best wishes to you in your search.
I would start by contacting your local, county, and state social services agencies. Perhaps they can help, or refer you to someone that can help. Also, talk to your son's doctor. The more people you talk to about this, the more likely you will be to find an answer. Good luck to you.
It's good you are thinking of these things now so you can prepare for the future. What does he want? I don't know anything about MD, so not sure how it progresses.
Also, contact your local Office or Dept. of Aging. If your son is legally disabled, there may be state programs that can provide financial aid for caregiving. My handicapped sister now benefits from such a program; it covers her caregiving costs 24/7. Best wishes to you in your search.
My thoughts are with you.