This has been a rough several weeks for us. Brian’s blisters on his leg popped, but the scabs that started forming looked a little infected so we took him to see the family doctor. The doctor put him on an antibiotic and told Steve to use Neosporin. When Steve used it, the blisters started to weep. I am assuming that this is the infection being leached out. Anyway, we have been sort of house bound as Steve does not want to take him out anywhere with it open in case of an infection. He does have stuff to bind it, if necessary but the doctor suggested we keep it open as much as possible. Brian has not been able to do any of his leg therapy or ride his stim bike, which has not made him happy, as well as having more spasms. I had rescheduled his MRI for Thursday but Steve doesn’t want to take him into the hospital and a possible source or MRSA or other germs, and I agreed. I have rescheduled his MRI now for the end of June, after Steve has his surgery.
Our caseworker has been working for two weeks trying to find us someone to come in and help with Brian while Steve is recuperating for the first 2-3 weeks. She has not been able to find someone, so now we are looking into nursing agencies, hoping that we can submit it to the insurance. It has made me very nervous for Brian’s future. Because of the level of care that he needs, agency aides are not able to provide the care with their skill set. The caseworker said Brian would have to go to a nursing facility. I said to her that she needed to look into this for the future because this house was built for Brian and it was not sensible to send him to a nursing facility. I am very worried about all of this and am trying to be proactive. My niece, who works with elderly and disability placements is trying to help me. She was able to find a nurse who can come twice on the day of Steve’s surgery just to help with Brian. Scott is going to stay with him that day to feed him and be here, but Scott can’t do his care. I am very frustrated with the system that would put my vibrant son into a nursing facility because of his needs, which can be handled at home. As usual, it is based on money. Medicaid and Medicare do not pay for the quality of care that people may need. If anyone knows of any solutions to look into, please let me know.
Please pray that we can find the help we need so that Steve can have his surgery and not worry about Brian. Also, please pray that science, medicine, and God can restore Brian’s function enough that he can look after himself in the future. Our policy makers need to explore other options for adults who have special needs so they are not treated like nuisances, put out of sight, out of mind.
Prayers for your family’s needs!
Dawn, a possible solution is using several staff for shooter times. What are his specific care needs? One barrier may be proximity from caregivers. I suspect they may come from Harrisburg or York. I’m familiar with a few providers, but not sure how close they might be. I’d be happy to connect with all of them once I can tell them the needs. Another resource of talent might be a VA center, who through their independent living outreach often trains caregivers in similar needs as Brian. Barrier may be their hesitance to share… but worth a try. I’ll think some more and also teach to people I know to see who might work the area.
Best to all of you!
Your frustrations are valid, Dawn. We pray that Brian’s blisters heal so he can get back to his therapy, that Steve can have his surgery without worrying about Brian’s care, and that a permanent, workable solution , which you feel good about , can be secured for the future.
Hugs to everyone,
VA centers may not be able to share. By law, they exist to serve the military and not all veterans are getting the needed care. Since funded by tax dollars and in existence due to law, employees must justify, verify, and report. Tax dollar funding means constant public scrutiny. Consequences for not serving the veterans are severe. Think of this. If someone would try to bend the rules and the media got wind of this (there are military media outlets), the fallout would be devastating. I wouldn’t go this route for Brian.
Dawn, I know you have been working hard to find a ‘replacement’ for Steve. Have you tried any of the trainers at a gym? You might even get a lead there.
Oh, no! I am so sorry to hear this. May I share this with friends who are involved in pt and other rehab activities? I won’t share without permission, but I just have a feeling that I know someone who can help. Thoughts and prayers with you all.
Hi Dawn, you all are always on my heart and in our prayers. We pray for miracles for Brian. God is the same yesterday, today and forever. The healing power He showed when He walked the earth are equally available today. I beseech God on behalf of my brother, Brian, to HEAL him from the top of his head to the soles of his feet. In the powerful Name of Jesus!!!!! amen. Shalom ( literally means “As God wills it”)