Feeling hopeless tonight

My mom’s aneurysm was one month ago. She had the worst kind - subarachnoid aneurysm. She had to have a trach and was transferred to a long-term care place after 2 weeks. I was just told that she hasn’t made a single bit of progress since she arrived. She doesn’t respond when they talk to her or ask her to do things. She responds to pain and moves her body some, but he called those things reflexes and nothing more. She is off the vent during the day but is receiving some oxygen at night. He told me her prognosis is bad. He said we are not at “that point” yet where there’s no chance, but he says we are nearing that point. I do not know if he even ever really believed she had a chance at getting better, and it feels like to me they have done the bare minimum with her. I’m terrified she will not come out of this.

Mrsm, I’m sorry to hear about your mother’s condition, I too had an SAH, many of our members have. There’s no definitive reason why some of us come out and some do not. Although the doctors know a lot about the brain, they have just scratched the surface.

See if the staff will help you talk to her via the phone speaker. It may help. I was in ICU for 26 days with a Fischer Level III bleed, they didn’t know if I would make it and that’s what they told my BH every day until the last couple of days.

When we rupture, the odds are not with us for the first two years. I know this doesn’t sound good, but I also do not believe in false hope. That being said, I strongly believe in hope.

Some things you can do is ask what her Fischer level was when she ruptured and research it. The other thing is to find out her Hunt and Hess score. If you are a religious person, do those things that your beliefs taught you And go to the Prayer Requests to ask others to assist through intercession prayer. If your not, you can rely on the scientific information that the neurosurgeons have found, be careful on what/where you research.

I will keep you and yours in my thoughts. Please keep in contact, we are here for you!

Thank you. They never once told us her score or level. I’m certain she would at the worst levels though. They never discussed chance of survival and recovery. All I know is that it was very large (giant rating from what I’ve read). How she’s even alive after that, I do not know. As far as I know, other than pneumonia and the trach, she hasn’t had any further complications. She just hasn’t gotten better. The night of her aneurysm, she had a drain added. Later that night, I called the ICU and they were actually surprised at how well she was doing. She was responding to them for several days after and then just started doing it less and less. I have a video from one week after where he eyes are wide open and she’s blinking and really seems to be looking. I don’t understand how she could be doing so much less now.

You or the responsible family member, the one with Medical Power of Attorney, can ask about her levels and grades, either the facility she is at will know. If she doesn’t have a Medical PoA, her spouse would be the logical person. The facility should also be having team meetings. They’re required, with C-19, ask if they will do one where family members can be on a teleconference. The meetings are fast 15 min or less so have just a few questions for them. Other than that call the Facility’s Social Worker

A hospital can only do so much. There are guidelines they follow in keeping a patient and releasing one. If a patient is released to a rehab facility or other type, they are also guided by insurance and health care rules.

I’m going to guess the tube was a shunt to relieve the fluid in her brain, it’s called hydrocephalus. It is fairly common with any serious head injury and it can be dangerous which is why the doctors put in a tube to drain it.

When we have a SAH, the blood enters the subarachnoid space which basically puts pressure on the brain. The blood mixes with the CSF and our bodies have to filter it out. The CSF is there to help protect and nourish our brain and spine. The blood in the CSF is not fun, it can cause some of our brain, neck and back pain.

There are four levels to a Fischer Grade. A Level III is more than 1 mm of blood in the subarachnoid space. This explains it and there’s links towards the bottom for the other scales. https://radiopaedia.org/articles/fisher-scale?lang=us

As to why your mom isn’t responding well, I don’t know. I vasospasmed for 21 days, some doctors insist that couldn’t have happened and me still be here. But I have the medical records to prove it and I didn’t read the book is what I usually tell them. When a person vasospasms, it shuts off blood supply to that area of the brain and can lead to ischemic stroke. This is all very, very basic you can read up on it to learn more by doing a web search. For me, I had vasospasms a few times after my first coiling. They can check for vasospasms with an ultrasound machine, just like they use to check a fetus. It’s a Doppler imaging technique.

Who in your Mom’s family is the authorized person to talk to the medical staff?

Unfortunately she doen’t have a POA. I have been the contact person for authorizing her procedures. I just put in a request for the medical records from the hospital but I have no idea if they will provide them to me. She was flown to a hospital she’d never been to and obviously couldn’t fill out the release of information form. I feel like we were kept in the dark about so much while she was in the hospital. No one really told us anything. They did several CTs and TCDs while she was there. Everything was stable. I have not been told that she’s had any vasospasms or seizures since the initial day. The Dr at the LTC place is sending her for an MRI, probably just to appease me and for no other reason. He said he was checking to see if she had a stroke. Her blood ammonia is high right now. One dr told me that could be the cause for her non-responsiveness. But the Dr from yesterday said he didn’t feel like that was the cause. Thanks for the link about the Fischer scale. I think she would be grade iii. I also think she’s most likely level 4 on Hunt and Hess scale.

Also, we were told that we were going to have weekly meetings, but that simply isn’t happening. I only spoke with a dr yesterday because we asked repeatedly for days to talk to a doctor. I assume we are not having meetings because there is nothing to report and they do not expect her to recover.

I’m so sorry to hear about your Mom. Demand meetings, and answers. You have to be an advocate for your Mom. It’s is so right about who comes out and who doesn’t. I had an SAH, and realize, some of us are doing better/worse than others. Foreign matter in the brain is a tricky thing. I pray all goes well for you and your family.:pray:t4::heart:

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Remember the different grading scales are given when we rupture. So for me, I would have been graded by my local hospital, but I think the one I was flown to also graded me. I will ask my Neurosurgeon when I see her via telemedicine in November.

Here is GA’s patient bill of rights https://dch.georgia.gov/document/regulatory/111-8-50-final-rule-february-2013-updated-041913/download

For me, I was already appointed as my parents MPoA if one could not act for the other as well as their PoA. It is so important that we have these documents as unfortunately you are discovering. If I had not had the legal right I would have gone to our Magistrate and secured the legal right. Temporary guardianship may be easier to obtain, I’m unsure. You may want to call yours and explain the situation.I found something on this for GA https://www.georgialegalaid.org/resource/what-should-i-know-about-guardianship-and-alternatives-for-adults?ref=PEji9. It has suggestions on who to call with questions.

Has your mother been transferred to Medicare or is she under private pay insurance? In the states I have resided, private pay will drop a patient after so many days and the patient will go to Medicare. If she is under Medicare, there should be an ombudsman that is assigned to her facility. The number should be provided by the facility (it’s supposed to be posted where anyone entering can see it) They may be a good place to start with various questions. Although it appears your state has a division suggested in the above link.

Call the facility’s director and ask about the meetings. They are the ultimate person in charge, not the doctor. The doctor is there to provide medical care, they have guidelines they must follow, but they don’t control the meetings. The meetings have to be held regardless of your mom’s condition.

When requesting medical records for a family member from any facility, they can fall back to HIPPA rules. So some form of legal right to access may be required. You may also want to ask your relative that’s a nurse, exactly which records you really need. When my Neurologist received my records from WFBH it filled two of the boxes the reams of paper come in. He said most of it wasn’t really needed and he wasn’t going to go through all of it. It’s probably better to ask if they can be supplied on a disc so you aren’t overwhelmed with all the paper. Before you ask for the disc, make sure your computer system can view it.

So I wasn’t with her right after the rupture happened, but I do know she was conscious and talking. She was able to communicate. She started seizing after she was at the first hospital, and they had to give her medicine to sedate her. After she arrived via helicopter at the new hospital, they told us she was non-responsive and the bleed was bigger than they thought. It sounded to us like she might not even make it through the night. Hours later, the neurologist came to talk to us. He told us he was going to do the drain in her brain. It was about 10:30 or so that night that the drain was completed. She was still out. I called to check in on her at about 11:30. The nurse told me they were surprised at how much better she was doing than when she arrived. She was even able to verbally confirm her name. So at what point during the night would have been the time for them to do the grading of the aneurysm?? She was responding to them for several days after. That’s why I am just confused about why she isn’t responding now. :frowning:

Thank you for all of the resources, you are a wealth of information. I did have a conversation with an attorney, and she told me I could apply for guardianship/conservatorship. But it is an expensive process and takes a while. You have to have evidence and essentially have a mini-trial. There is further complication in that we are in GA but she was flown to TN.

My mom has Medicare but she also thankfully has the Medigap coverage. We have been communicating with the case manager there, and she originally told us we would probably have weekly meetings on Thursdays. When I called the Wednesday the first week she arrived, I asked if our meeting was going to be that day. She informed me that the dr who has been treating her would not be in and the dr who would be there wouldn’t know anything about her. So we did not have a meeting. I asked her when we could talk to the doctor, and she kept saying she would ask the doctor but we never heard from one. This week, my sister called the case manager. We heard back from her on Thursday morning. She said the doctor would be calling. He finally did like 6-7 hours later. He seemed annoyed to have to call me and indicated that he was busy and that he was spending his time talking to families who patients who were sick or dying. He had no compassion and I took from our discussion that we were not receiving updates because she was literally in the exact same condition as when she arrived. He told me there was nothing they could do to check her brain activity/damage. He told me her high ammonia levels almost certainly were not the cause of her non-responsiveness. I know my mom had TCDs and CTs at the hospital, but I do not know if she had an MRI done. He is sending her for one, probably just to appease me. What would the MRI tell them that could change anything? He said it was to check to see if she had a stroke. Well, if she did, then that probably means there is no hope in recovering, right? Why wouldn’t they have done an MRI sooner? She has not been seen by a neurologist since she left the hospital 2 weeks ago. He told me it was not necessary. In the medical records request I sent, I just asked for everything. There was an option to have the electronic medical records emailed to me. I have not received a response. We were not provided ANYTHING in print - no admission papers, no test results, no discharge papers. It was all done electronically since we couldn’t be there, and I gave approval for things via phone. But they didn’t send us anything electronically. We are operating in an environment with VERY little actual information. How can we make decisions for her based on a limited number of conversations with Drs and no documentation of her condition?

Sounds like she lives in NW GA, it’s beautiful there. I’m guessing she was flown to maybe Vanderbilt? They’re supposed to have a really good Neurosurgery Department.

The grading is done at the very beginning, not after the procedure. It is based on the amount of blood in the subarachnoid space for Fischer, and the patient’s level of consciousness for the Hunt and Hess. They could have used other grading systems, but those seem to be the more popular ones. The surgeon might have re-evaluated the Fischer score; however, they usually use the CTA.

I would contact the hospital she had the surgery at. Perhaps the surgeon would be a good place to start. Their office support could suggest where to get that information other than the Records department If you explain you have already contacted them but would like to know a bit faster.

For Records, I’m surprised they are willing to email them. COVID has really changed the way the medical field operates. A call to the Records department on how long it will take would be good. Remember to be nice and try not to show your frustration.

I did a quick search and it seems TN’s Gov. Lee reopened LTC facilities if they meet certain guidelines for visitors, one of which is having an appointment.

If your Mom is a resident of GA, see if Medicare will pay for the ambulance trip to a facility closer to you. Some other things I would suggest is to have just one person calling the facility for updates. LTC facilities have many patients, are historically understaffed and I’m guessing the pandemic has made it even more difficult to have working staff.

If they are not having the required meetings, you need to call the Medicare ombudsman. Here’s a link. I opened some sections that may help, but I don’t know if you will get the page that way. https://www.tn.gov/aging/our-programs/long-term-care-ombudsman.html

Medicare is Federally funded with federal rules that each state must follow. Each State oversees Medicare for that state. The doctor cannot order an MRI-A to appease you, there must be a medical necessity. It appears from some quick internet searching, he wants to see if your mother is having another brain bleed. If you haven’t researched causes of high ammonia in the blood, I would suggest you do so. Here’s a place to start. https://www.healthgrades.com/right-care/kidneys-and-the-urinary-system/elevated-blood-ammonia-level

Here is a TN brochure on LTC’s, who plays what role and their titles. It also provides a number to call for questions. https://www.thca.org/files/2019/06/guide-to-long-term-care.pdf

In TN guardianship is called conservatorship. Here is a link to Elder law. https://www.elderlawetn.com/conservatorships/

There may be a way to get emergency conservatorship which doesn’t last but a few months, I’m not sure on TN laws.

Regarding the records, there was an option that said release electronic records. It may not be via email - they may just give you access via their electronic medical records program. I’m not really sure.

Yes, I saw that too about TN LTC facilities - but that was allowed even before she arrived, and we were told at admission that no visitors were allowed. I think it is just too hard to meet the state’s requirements, particularly for my mom who is not conscious.

We tried to get her in at a LTC place in GA. She was rejected from one, one was having COVID issues, and the hospital was having issues getting replies from others. We were still waiting on a couple of replies but we were told that she had to move and we basically had to send her to the one in TN. We only call the LTC place once per day and we always arrange who is calling that day. I just cannot handle being the only person to call.

Understood regarding the MRI. He specifically said he was checking for a stroke. I am just wondering why it has taken four weeks to do an MRI. Yes, I have read a lot about the ammonia levels. He doesn’t know what is causing it. It has been high since August 17. It was not coming down with the first medicine, so they added an antibiotic. Last I heard it had dropped a good bit, though it is still outside of the normal range. He said her liver function is perfect, so that is not the cause.

It’s good news that her liver is functioning properly.

I seem to recall the guidelines TN Gov put out for LTC’s. They can’t allow visitors until everyone including staff has been tested and some other rules that I don’t remember. This may sound hurtful, it’s not meant to be, just realistic on facilities. It’s not about your mom, it’s what the facility has or has not done. I apologize but there are some memory issues I experience. I might remember tomorrow, one never knows. But you or your sister can look up the facility on the Tan State site and see if they’ve completed all the requirements or have COVID-19 cases.

I completely understand how daunting, exhausting and stressful it can be to have a parent with serious medical issues and going into a facility. I went through it with both my parents. It became so difficult for me that I had to stop moderating on this site. I was very lucky to have Seenie and TJ’s support and empathy. My remaining siblings don’t reside in NC so I couldn’t get help from them in dealing with all the stuff.

When my father had to be released from hospital to a LTC, I called some that I knew were good places. Two had no rooms available. One that I really wanted, the admitting person was on vacation. He had to be placed in a facility that had a really bad reputation. When the one I wanted finally called with an open room, he wouldn’t go. Their going into facilities and their declining health compelled me to learn the Medicare rules and why I strongly suggest y’all do the same.

While my parents were both cognizant, (able to understand and verbalize) they would make statements and I would look up the rules. Things like Dad complained about the food being cold, Mom wanted out of rehab to be home for Mother’s Day. I realize you and your sister don’t have that right now with your mother and it makes things more difficult. Medicare has very strict rules on just about everything. If a facility is operating under Medicare and fails to meet Medicare standards, they can lose their Medicare funding.

This is my other suggestion, yes I’m full of them…Get with your sister and write down the things you want to know. Make a list, number them in order of importance. Then figure out who the person is that can answer those questions, the Facility Director, the Social Worker, the State. If you don’t know who to ask, come here and I will try to help or perhaps some of our other members can help out.

For me, I would want to know how the facility is managing the meetings if they aren’t allowing family members to come in to the building. That would be a question for the Director. You know they are having them since the Doctor said he had a lot of family meetings. If the Director says we do it without the family present ask if you can be put on a conference call. If he, or she, says no then call the State.

The other thing I would look into and it may mean contacting the State of GA, is to see if your mother can be transferred to GA. Understand she may have to be placed on a waiting list and they are first come, first served for the level of care she requires. You might be able to get an answer from a facility that’s close to y’all, call their admittance officer. A good admitting person can give you loads of information.

Also be prepared that should your mom exceed the limit of days Medicare will pay, they will go after her finances. If she owns a home, y’all may be forced to sell it and give the proceeds to the State. That happened to a friend of ours whose mother suffered an ischemic stroke and was put in LTC. The state made them sell the house at a fair price. They couldn’t sell it to one of the family members for $100, they couldn’t Quick Claim it, the sell went through some special type of real estate agent. The State also took all the money in her savings and checking as well as made the family sell all her belongings which they took the proceeds. Staying in a LTC is astronomically expensive with all the special nursing care it requires. While I don’t blame the states for wanting to recoup the money, it’s very hard on the family. The only thing that can stop this is a will set up as a family trust. We know your mom doesn’t have one because in a trust, you appoint all the powers of attorney to a person. I would suggest you and your sister go to your mom’s home and get any family heirlooms if you haven’t already done so. When Rick’s mom was in LTC, they didn’t do it. After the 100 days or so the state sent a person who took inventory of everything, the family got pictures and that was it. Do not wait on this. The day count started the first day she entered the LTC.

As for the Doctor saying he wanted to see if your mom had a stroke, there are three types. Ischemic where the blood supply is stopped due to a blockage of some type. Ischemic strokes are the most common and the one that most folks know. TIA’s commonly referred to as a mini stroke. Hemorrhagic stroke where the blood has burst through the artery, like your mom and I had. Doctors use the term “stroke“ to cover all three so we need to ask.

I want to share another thing for our members if you don’t mind. Never, ever sign your name to have a loved one admitted into a hospital or a facility! Years ago, one of my bosses signed their adult son into a hospital. They ended up paying the hospital bill to the local hospital, the air life flight to the other hospital, both hospital bills, all the radiology bills, etc. and the son had insurance. Insurance refused to pay because the parents signed their name on the admittance form. I don’t know if the rules have changed, but the way I was taught as a Social Worker was to sign your name for and then you put the responsible person’s name. So it looks something like this: “John Doe for Jane Smith“. As a Social Worker, the hospital didn’t blink as this was the norm. When I did it for a family member, they got a bit peeved, but there was nothing they could do. It took the financial liability from me and put it on the person needing medical care.