Need advice on my mother's recovery

Thanks for the update! Medicare is a dual edge sword isn’t it? They have very specific guidelines and it’s good to learn them. https://www.medicare.gov/ Knowledge does give us power! They do follow State and Federal guidelines which means Arizona may be different than where I live. So you need to research that as well. It can be exhausting work! Depending what if any supplemental Medicare can greatly effect what we can receive from the insurance company.

Dehydration can have a really negative outcome on our brains. Hopefully the caregiver will be able to encourage her to drink more.

I hope the best for your mother and for your family.

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Thank you for the support. I really appreciate it!! My mom still has a feeding tube so the caretakers are providing her with hydration that way. She currently had edema so two of her limbs are swollen, but my dad said the swelling is going down. Her family in Panama are very concerned with her health, so I am trying to explain her situation. It is really hard to explain what is happening and at this time the only choice right now is hospice, because my mom’s health is so precarious. I want to also let them know that we are trying everything we can to get her better. My mom’s latest health scare threw us a curve ball because we were going to have evaluation for therapy. I just feel that my mom can get better. She just needs time to repair her brain. She went through such a traumatic event. She needs all the rest she can get.

I’m really glad to read the caretaker is keeping your mom hydrated through the feeding tube! Your Dad, brother and your Mom’s friends that visit may want to learn the signs of dehydration so they can tell the RN right away. Dehydration - Symptoms and causes - Mayo Clinic Since your Mom may still be on a catheter urine bag, it would probably be the easiest way to tell. Maybe @oct20 could provide better insight.

I believe trying to tell family about an issue no one can control or fix is really difficult. Stick with the truth and when you don’t know, tell them you don’t know. You can offer to write their questions down and ask if needed. It’s not really something you can initially send an email but you can tell them emails may be better after your initial conversation. You might could set a day of the week that you will update them which may make it easier for you. I know when I ruptured, BH was getting more exhausted by the day. Luckily, family and a few friends started taking over the updates so just a handful had to be called and of course my parents who were still living and taking care of our old Labrador. For some reason though, family would often say that I had a brain aneurysm, which is true, they just left out the ruptured part which I feel is a lot more serious​:crazy_face::rofl:. So a bit of explaining and education is needed. BH tells me that the best calls that were answered, came from friends who didn’t ask about me, but about how BH was doing. Please make sure you focus on yourself and your family does the same. Everyone needs a break.

Whilst I don’t care for “false hope”. I do believe in miracles, they happen all the time fi we just keep our eyes and hearts open to them. I feel as long as a person is still alive, there is hope that they can pull through a rupture.

@Moltroub @mellalight
When someone is on a feeding tube and has a urine catheter, the caretaker is supposed to have a chart for fluid intake and fluid outtake. A person should never be on minus. If this person has a fever the loss of fluid will be higher due to perspiration. A salt imbalance can also create a lot of problems. A UTI can really mess up a fragile older person, with dementia like symptoms and even hallucinations. Let’s hope for the best and that your mother has the best care possible.

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You’re the best! Thank you so much. Once again I learn from you!

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@Moltroub :health_worker:t3::wink:just some basic nursing stuff
My husband told the staff at the NICU that I felt like home amongst them , I remember vaguely asking how the staffing situation was, how long their shifts were, how often they worked etc……:crazy_face: I also tried to check my own beeping monitors :roll_eyes:
My judgement was altered I have to say. I have never cared for someone with a brain bleed and I had no clue what I was doing……

I th8nk that’s hilarious! With no medical background except at a convalescent hospital working my way through college, I still tried to read my monitors. In fact I would ask what they were showing in one room because they had the machine to far behind me. Seems Residents we’re always pushing it further back. The RNs did allow me to use one of the outlets on it to charge my phone once they allowed me to ignore the rule of “no cell phones allowed”. Given enough time, I learned which beep went to what. The really high pitched beep I landed my monster as it hurt my head something fierce.

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I just want to give an update on my mom. She is still in a group home with hospice providing her medical care. The new hospice company has been great with communication on how my mom is doing. Since my mother’s UTI she has been vomiting on and off for the past month. She was also experiencing pain. Hospice put her on Gabapentin to help with nerve pain. Prior to her being put on this meds it looked like my mom was becoming more responsive and starting to talk a bit more. She would have moments of clarity before withdrawing. My father has been providing updates and it seems my mom has a good day and then bad. Her group home informed us that now my mom is expressing discomfort when being provided personal care. Hospice wanted to put her on Tramadol, but I am just not comfortable with that. So it looks like she will have Tylenol increased. My dad also said my mom is really weak. It has been 4 months since my mom’s aneurysm. I will see her this weekend. I have been hoping that she would improve so we can get her out of Hospice, but I am now starting to doubt we will ever get her out and into therapy. Thanks for listening.

Thanks for the update! I’m glad to read that the new folks are communicating better with y’all,

I’ve taken Gabapentin for nerve pain due to issues with my spine for several years now, as with any medication there’s an adjustment period. Prior to the Gabapentin I was on tramadol daily but I started feeling nauseous and sweating like a horse that just ran a race, so I have to save it for the really bad days. With the new opioid laws, I no longer am able to get 30 on a prescription, just five days worth. If I need it I will take one at night to help me get through it. For me, it seems oils and salves based in mint help a lot. I generally use CVS’s muscle balm rather than bio freeze as it helps me more. Your family might try that approach. If your Mom is on acetaminophen, make sure they’re doing blood work on her liver. I hope your Dad is getting some rest, I imagine this is very taxing for me as it is for you and your brother.

Thank you for your response. I really appreciate it. We received a message from the Hospice nurse that my mom was clear and lucid today and did speak a few words. The nurse did inform me that my mom wants pain medication. Not sure what to do at this point. I am really torn about Tramadol v. Tylenol (if the Tylenol isn’t working). They have been trying to get blood work done on my mom, but they have been unsuccessful in drawing anything out of her. Hoping she will have a good day when I see her this weekend.

I hope so too! Wouldn’t that be a wonderful gift for the both of you!

If you don’t mind my asking, why are you opposed to tramadol? I realize they are now saying it’s an opioid when it was considered an opioid like drug before I ruptured. I do know the possible horrendous side effects as well. Maybe asking the Hospice team how long she will be on it will help your decision. Laying in a bed for so long can really cause a lot of pain. One of my Mom’s doctors gave her prescriptions and said it was due to her age that she could have so much as there wasn’t anything else he could do for her besides the shots in her spine. I was concerned about it as well. He’d give her three months worth at a time which equated to 270 pills and she always had them filled. When she passed away at 84, we found she’d been stockpiling the stuff😂

You might want to inquire about Gabapentin depending on what’s causing her pain. Tramadol can be quicker to give relief than Gabapentin though and at very rare times I need that extra pain relief.

I recall one of my favorite Neurologists, Dr. Yapundich, telling me not to take ibuprofen or naproxen more than three times a week as they can cause secondary headaches. He knew I wouldn’t take Tylenol because of my history with it. Migraines ruled my life back then,

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I think it has to do with the list of side effects that my mom has always been so sensitive about. I spoke with my Dad and he got clarification of when she would be given the Tramadol. It would be as needed basis. I let him know that I was okay with her being given Tramadol. I don’t think they know what is causing her pain. Hospice is probably assuming it has to do with nerve pain along with her laying in bed for so long. My Dad is now chewing on the idea of getting her out of Hospice and into Homecare. His neighbors, who had family members have given him that advice, which I am all for her out of Hospice.

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As needed or often written prn, is a better way of taking opioids in my opinion. If the doctor and the insurance she has will let her, in home care worked really well for my Mom. When she was in rehab/convalescent care she wasn’t getting ideal care and one day had fallen. She hit her head on the toilet and couldn’t reach the call button. It was a couple of hours laying on the floor until a visitor heard her crying out for help. She wanted to come home but the facility didn’t want to release her. It had to do with the number of days Medicare/Medicaid would pay which I think was 21 days but don’t quote me on that. Fortunately for my Mom, the facility doctor hadn’t put in the expected stay which I think has to be done in 24 hours, it might be 72, and they hadn’t had any family meeting as outlined. A simple threat of reporting the facility was all I needed to do and Mom was home with in home care. Her in home care was just PT and OT. Mom at that time was able to do many things on her own - getting dressed, hygiene, and could cook some. We took over the heavy cleaning and helping her in the kitchen. It was when she started to teach me how to cook again! She had great stories of when I was about 3 or 4 and would climb up in a chair to help her in the kitchen😂

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@mellalight
Regarding your mother, make sure your mother doesn’t get constipated that’s a common side effect of taking opioids. Perhaps she is already constipated ? It’s very common to be constipated when we are bedridden, and it can be a part of her pain.

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She seems to have normal bowel movements. When I saw her this past weekend, she expressed pain when I stretched out her hand. Once I got the fingers and hand moving she didn’t express anymore discomfort. The same happened when I moved her left leg. Once it got moving she was able to apply pressure to my hand when I asked her to, though it would take a few prompts before she resisted movement.

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Range of motion exercises can be quite painful as we aren’t using our muscles for much laying in a bed. Is the staff rolling up wash clothes, etc to put in the palm of her hands? I imagine @oct20 can suggest a bunch more things than I can. She’s really knowledgable about such things.

We give her stress balls to hold on to. She seems to be stable. Not getting better, but not getting any worse. A therapist is coming to see her this weekend. Fingers crossed he can help her. I think she is depressed with her situation and has expressed not wanting to continue on, which is just heartbreaking.

Stress balls are a brilliant idea, good for you! Depression is common, unfortunately.
Age may play a factor as well. Talking about daily things going on in your life both the good and bad might help. What type of therapist is coming?

@mellalight I’ve been reading your thread for some time and have felt bad I have nothing to offer. Today I saw a music post, which comes up from time to time, and it made me think of your mother. Have you tried music as therapy for her? Meaning, to help her relax when stressed, maybe something with a little more energy if you’re trying to get her to be more responsive?

I can think of two cautions - my Mom was in assisted living years ago recovering from a back fracture. The first time she went to hear music from the “good old days”, she loved singing along and tapping her feet and it brought back memories. After a while, it would actually bring her down - it takes you back to when you were young enough to jump out of your chair and dance with people that are no longer with you. Definite downer so we stopped taking her. You might not want to pick music from her particular heyday. Second, watch for sensory overload, or “flooding” - it’s when there is too much occurring around a brain injury patient. It will raise her anxiety. Meaning people in her room chattering, the door is open and there’s noise in the hall, something electronic (even a phone) is going off — adding music to that is unlikely to help. In fact, eliminating some of that will go a long way in helping her, so maybe that’s step one if it’s an issue where she is.

The object with the music is to find something soothing (not jolting or jarring) without being depressing. For me Andrea Bocelli would be calming background music after I had a stroke. You’ll need to see what can work for her. When I’m trying to calm down, I also use YouTube sounds of rushing streams. I spent my summer vacations as a kid in the mountains, playing by the side of a stream on our property; those sounds calm me pronto.

Along the same lines, do you think she is ready to handle any type of art therapy? I’ve heard a good art therapist can be wonderful (they are typically trained therapists). It gets other areas of the brain firing and may encourage her to use her weak hand more.

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My mom enjoys classical music and Spanish music. When I come to visit I usually have classic music on. She reacted really strongly music from the Nutcracker and this was way before the holiday season. Before she had her UTI she was singing out loud. It is just unfortunate that the UTI really set her back. I think the therapist that saw her was a speech therapist. She had her first session yesterday. I saw her afterwards and she was knocked out. But then she also watched tv until 10 pm the previous night. She does seem to follow what is going on, but just can’t respond verbally.

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