Update - frustrated with lack of support

My mom got pneumonia and a blood clot in her leg at 9 weeks. She was on a ventilator and they were able to get her off it. She stayed in the hospital for a week. She went back to the nursing home, and then a few days later she was rushed back to the hospital for breathing difficulties. We saw her in the ER, and things were looking very bleak. We had decided not to place her on a ventilator again, so she was only receiving fluid and oxygen. She had that heavy, mouth-wide-open breathing, and her oxygen kept dropping below 90. We were prepared for her to not make it through the night. One doctor even suggested that maybe damage from her aneurysm was causing her body to not want to breathe correctly (didn’t really make sense to me since she was okay the first three weeks at the SNF). The doctor who made this comment was NOT a neurologist. She made it through the night, and the following morning she suddenly was alert and talking some. She had really only said yes, no, and hello up until this point. But she was saying more and answering our questions. She actually said two sentences to me. She was able to recognize and communicate she had something stuck in her mouth, and she was able to recognize and communicate that I had her on too many video chats and she wanted to get off the phone. I saw HER there, cognitively and personality-wise. She knew who we were, and she responded to us in ways she would have prior to the aneurysm. It was completely unexpected but amazing. I know it’s not a huge step in the grand scheme of things, but we weren’t sure if she’d ever communicate with us again. She was also able to say all of this despite not having speech therapy for several weeks. She was also doing fine with her breathing - she was not even on oxygen after that first night and she was doing really well all week. The doctors could not even find a cause for her breathing issue, though one speculated that maybe something from her feeding tube got stuck in her airway and she got better after it resolved. She was at the hospital for six days. She was technically ready to leave after four days, but we had an issue with the nursing home (a separate long story). Anyway, she went to a new nursing home. The following week, after she had been there for six days, I had a plan of care meeting with them. This was, of course, via phone due to COVID. The PT told me she was barely doing her therapies. They have heard her say very little. Others described her as lethargic and doing nothing. I am so perplexed after she had five consecutive days at the hospital where she was talking and responding to everything. I do not understand what is going on. Perhaps a result of a new medication? She just simply doesn’t want to talk to them? She’s depressed? Could she really have five consecutive days of small progress and then go back to nothing days after leaving the hospital? I am so very frustrated with this whole process. I feel like she has been pushed from one place to another without anyone really caring about or understanding her brain injury. I do not believe she is going to get better in the nursing home. They do not have the time, specialty, or staff to provide her what she needs. But I do not know what else to do. How can I bring her home when she cannot even do basic things like getting out of bed or getting to the bathroom? How do I get someone to meet with us to go over her brain scan and explain it to us? We NEVER got an explanation of her injury or what her prognosis might be. I only had two conversations with the neurosurgeon. The first was the night of her aneurysm. We were able to talk to him in the ER and he explained the procedure he was going to do to put the drain in her brain. The second was maybe a week later, where he said that things were stable and no one really knows what the effects will be. He never indicated she couldn’t recover from it. I need someone to pull up her scan, sit me down and say - see this? This is X part of her brain, which is responsible for X. The neurosurgeon who did her clipping was out of state since she was flown there. I need to find someone here (Georgia). Who do I talk to - a neurosurgeon, a neurologist… some other type?? If I were to bring her home, how do I find a home care company that specializes in brain injuries? I did find one local, but they do not work Medicare, so they are not an option. Maybe I am just being stubborn, but I just don’t believe that she cannot get any better than where she is right now, especially after she was talking to us so recently. But I worry if I don’t get her the right kind of help, I will be dooming her to a life of nothing…

Good Morning Mrsm

I can sure see why you are frustrated, you and your mom have been through it. Is your mom still in TN or was the hospital able to find a place in GA? Perhaps you can get her on a list closer to home.

I would check to see if one of the neurosurgeons at Emory could look over her scans and explain it. You will need to request her images to be sent to the Neurosurgeon. I would have all of the brain scans at all the places sent. Give them a call and ask. We have a friend who has a rare brain disorder and Emory has done wonders for him. They’ve moved to CA and then to AL and he still goes for his check ups at Emory.

You may be correct that your mother is suffering some type of depression, it wouldn’t be unusual. I really don’t know why she was responsive in the hospital and is not doing anything now at the new facility. It could be that she received more individual care, but that’s just a guess. Perhaps just asking her may help. Explain that she has to be mobile and able to do some basic care for herself before She can come home and that y’all really want her home.

I’ve never heard of Medicare providing round the clock care. Doesn’t mean they don’t, I’m just not aware of anyone who has had it. My parents had some rehab at their home, speech, occupational, PT but were ambulatory and could verbally interact. My Dad had a heart problem following numerous ischemic strokes over the years. The day the specialist at the cardiologist told him he shouldn’t walk more than 20 ft, he returned to the facility with those orders and the PTA walked him 65 feet. I was livid. He had to walk the 65 feet to come home. It would allow him to get out of the house in case of a fire. He ended up in ICU that night.

Please keep in touch and let us know how the call to Emory goes.

She is back in GA now, thankfully. The new nursing home is very close to me as well. I will look at Emory, but it’s not exactly close to the nursing home and there might be logistical issues with getting her there. I agree they are top notch of course!

Regarding the home care, I should have been more clear. As I understand it, she’d have to move to Medicaid to get care with activities of daily living. The company I talked to only works with private insurance companies.

I’m glad your mom is back in GA, better for you and your sister I imagine.

Just use Emory for a second opinion from her scans. Don’t worry about the logistics right now. Wait until the Neurosurgeons or Neuro Radiologists respond with their recommendation. At least you will get a top notch facility looking them over and perhaps have better skills in explaining what they see.

The local private company here Is the same way and when I looked at getting help for my parents, the cost was in the thousands for a month of service and they would lose their PCP. There is an Adult Day Care that works on what the patient earns as opposed to the household earning so that was a feasible plan and they provide transportation. I think for my parents it was under $30/ month for both. We didn’t get the opportunity to use it.

Call your local Medicare/ Medicaid program or send the state an email inquiry if you haven’t already. Best information is from those who do the job and they’re the ones who may have different suggestions.

Hope this storm hasn’t been a headache for y’all. Stay safe!