I haven’t posted in a bit. My mom is at 8 weeks now. The last time I posted, I’d just had a very hopeless-sounding conversation with the doctor at the LTAC. He told me her prognosis was bad, that she hadn’t made any progress, that she’d never be off the vent or have her trach removed. He didn’t expect her to wake up or do much of anything. This was at about 4 weeks. A lot has happened since then. The following week, she started waking up more, trying to mouth words, smiling, saying a couple of words… little things. She got off the vent. By that Friday, at around 5 weeks, they were able to remove the trach. That was unexpected because we thought it would be a while before that happened. She moved to a SNF for rehab at 6 weeks. She’s been there two weeks. Two days after she arrived, the PT was able to get her to sit on the edge of the bed. But then she didn’t do much with PT the following week. They said she was only having short bursts of alertness and that the PT was having to do everything because she wasn’t participating and doing things when they asked. This week, she did a little more and seemed to be more awake. I was able to see her from afar yesterday. She was fully awake for the 30 minutes we saw her. She was sitting up in the chair. She reached for her brother, who’s also at the same place. They held hands. I saw her move her hands to the table and try to prop herself up. She seemed to recognize us, smiled a few times, nodded, said a few words in response. To me, she had improved greatly since the last time I saw her - then she was laying in bed, not responding at all, and didn’t wake up or acknowledge me. So I thought what she was doing yesterday was good. But the PT said she hasn’t made any progress and that she doesn’t expect her to ever go home. I feel like it’s too soon to say that and that it was wrong of the PT. I never expected her to go home anytime soon, but I don’t see how she can claim she will never go home after trying PT for only two weeks. Unfortunately this means that Medicare will not pay for her PT now.
Thanks for the update Mrsm. Medicare has some strict guidelines, that’s for sure. You may want to talk with the Medicare Ombudsman. I don’t know if it will help, but it’s worth a shot. I’m glad you finally got to see her. The first months up to two years after rupture are a very critical time for those that rupture. I wish her and you all the best.
Should she be doing more at 8 weeks out?
Oh mrsm, I wish I had a magic ball, but alas I don’t. Everyone responds differently and no one, not even the doctors can say. What happens when we have a SAH, is the blood stains areas of the brain, blood flow doesn’t get to parts and causes damage. I know that for all the days, save the last two in ICU, they didn’t know what would happen and even told my BH I could die but they weren’t sure. Every time I was coiled, I had to start the two year wait and see if you will live regime all over again. Many, many things can happen.
Having been a CNA working my way through college, your mom’s CNA should be doing range of motion (ROM) every day so her muscles don’t atrophy. I would still try to talk to her everyday. When my dad was in a rehab facility, we got him a burner phone from Walmart and talked to him that way as the facility didn’t have phones in each room. They had a line but the cost for us to have a land phone in the room was ridiculously expensive. We also got him one of those picture frames that you can download family pictures to and he could watch it. We or his staff, would ask my Dad who was in the picture. I realize you said your mom is unresponsive. But sometimes music or photos or voice can help. If she isn’t opening her eyes, then stick with music or voice. An old IPod or something similar might could help Your uncle being there sounds like a big help to her as well.
I am sorry that I don’t have the time to read your prior post, but I think that I see what is happening with your mom. I am so sorry that you are all having to manage this crisis. You being 30 or so probably sets your mom around 65-70. That is important to know as we read and provide input or support.
I am an attorney and work with a lot of families where loved ones end up in a nursing facility after a rehab stint. What I would say first is that if you think that your mother has not gotten a fair try at PT, then appeal the discharge from Medicare. Facilities may have a conflict of interest in that once the patient is off Medicare, tehy are a privately paying patient, meaning higher revenue. Unfortunately, not knowing all the details and your mother not being in Massachusetts, I can’t give solid advice. I can state that a nursing home/rehab is not as diligent in the provision of care as a real rehab hospital. Has she received three hours of PT/OT/ST a day? What is the facility doing to keep her alert and engaged? If you don’t think they are doing what they should be doing, you need to advocate for her.
Obviously, every patient is going to respond to treatment after a rupture differently. As you’ve seen, doctors can make educated guess’, but sometime the brain responds in ways they cannot understand. Doctors said that I was supposed to be in the hospital for months, I was released home after three weeks with at home therapy and then out patient therapy for another eight months. That said, I was not a typical case. I guess what I am saying is in the early stages of recovery, patience is critical. There may come a time when therapy really isn’t showing improvement, but your mom needs encouragement and advocacy and it goes without saying (but I will anyways) lots of love and prayers. God bless you all.
Brian, this is really good information, thank you. Would you mind sharing how to effectively advocate for someone in a convalescent hospital? Besides learning the Medicare rules and talking to the Ombudsman when needed, what else can a family member do and how do they go about it? I think sometimes our family members just don’t know how to navigate the facilities and the insurance companies rules.
Thank you, very helpful info.
Thanks, as always.