Hi everyone! Thank you so much for welcoming me. I would like to know if anyone has had the recovery that my mother currently is going through.
On June 27th my mom had a SAH while she was at the dentist. She was unconscious when she was transported to the nearest hospital. She had a drain put in her head before she was airlifted to Barrow. She had a craniotomy the next day to clip her aneurysm. She was on a ventilator for a week and a half. She was already waking up and trying to communicate with us after a few days of her 1st surgery. During that time she did code due to respiratory failure. After having CPR performed on her for 20 minutes they brought her back.
She had an angiogram a few days later to find that she had another small aneurysm.
A week and 1/2 later she had another surgery to clip this aneurysm. Since this second surgery it seems like her recovery has stalled. Prior to this surgery she was starting to eat via her mouth. After her the second surgery she has had a real hard time coming off of the feeding tube.
She was in ICU for 6 weeks before being moved to a regular room. She was then transported to a rehab center for two weeks before she was discharged due to her slow progress. She is currently in a group home with hospice help.
She has good days where she is awake for a few hours before needing to fall asleep. On days she sleeps all day and you cannot wake her up. She can move her right side of her body, but her left is still really weak. She can also talk in both English and Spanish, but is starting to speak more Spanish (which is understandable). She has been bed bound since her rupture.
If anyone could give me any advice on my momās recovery that would be great. We are all so worried for her, but know that she needs time for her brain to recover. Thanks so much!
Your mom has been through a lot! Iām pretty sure based on BHās experience, you are going through a lot as well.
No one person goes through exactly the same thing when we rupture so thereās no cookie cutter answer and thatās one of the many problems with a rupture. Between where your mom is now and I was after my rupture, sheās having a rough road. It may have a lot to do with age seeing thatās she is 77. She has also experienced a lot more than I did with her rupture.
Is your mom in palliative care or hospice? Having dealt with both, there is a difference. I used to think they were the same, just different words.
I hope other members with closer experience and better knowledge than I have respond. I will keep you and your family in my thoughts.
Hey Carmen,
Welcome to Benās Friends.
Having one incident is an assault on the system, having 2 doesnāt simply add to the assault, it multiplies it. The location of the initial SAH and smaller aneurysm also plays a large role in any recovery, so trying to compare can be near on impossible, but in saying that the body has an amazing ability recover.
You say about your mother sleeping a lot. This is not always a bad thing, the body uses sleep to relax, rejuvenate and recharge. She may also find her ānewā interactions absolutely exhausting. I have required a few neurosurgeries over the years and I have found re-orientating myself post surgery an absolute marathon. Some days I have minimal issues, some days those issues overwhelm me. And itās never just one thing that impacts. Some days it may be the lack of ānormalā sleep the previous night. Sometimes it can be light, both too much, like bright sunlight and/or not enough light, like an eye strain. Some days it can be sound/noise that affects me, usually loud noise. But I also found that when I walked I had a whooshing sound, like wearing wet sports shoes. This adds to my exhaustion. Sometimes it can be diet, if Iāve skipped a meal I can be come symptomatic. Sometimes the weather has an impact, I often say I can predict the weather better than a barometer. Temperature has an impact, my bodyās thermometer has been all screwed up, when itās hot my whole system goes haywire, when itās cold, I sweat, cooling myself even further. It can all be a real balancing act and ohhh, speaking of balance, thatās another thing thatās a mess. I go to stand up, I see stars, get dizzy, then find myself on the floor. On a bad day I can have all of these āsymptomsā hit me all at once.
Now, these are just some of the oddball symptoms Iāve personally had. Iāve spoken to drās of every kind and get these looks like āYouāre joking? Right?ā but Iām not. Theyāve made out that Iām the only one, but coming on here, reading other peopleās stories Iāve found some of these oddball things arenāt that oddball at all. Reading through other peoples experiences one thing I have found and as Moltroub above states āNo one person goes through exactly the same thingā some people seem to bounce back relatively unaffected and yet for others it can be life changing.
We all know this because we live it too, so come talk to us.
Merl from the Modsupport Team
I think currently my mom is in palliative care. She was moved to a group home/hospice due to insurance issues. I am hoping that once she is more established in her new home that we can start PT. My dad mentioned that my mom was going to be given medication to wake her up to possibly help with her eating again. She has a long road ahead of her. I am trying to find out as much as possible about recovery from this injury to help my brother and dad cope with my momās slow progression.
Thanks for clarifying the type of care sheās in, with Palliative care thereās an expectation the person will live beyond six months and just needs continued medical treatment. The focus is all on the patient for the most part, though really good medical personnel will help the family, it usually falls on the RNs. Iāve known several people whoāve had palliative care and have lived for years, some decades.
Merl with @ModSupport really explained symptoms well that we all share and a lot of doctors and the worse one, āDr. Googleā under emphasize I think. For me, the anesthesia made my neurological symptoms worsen to the point my neurosurgeon used the lowest amount possible and still do what she wanted. After my rupture, sheād do an angiogram usually six months out and then the next week another to keep trying to fix the little bugger. The rupture gifted me with unbelievable migraines, nothing near the thunderclap that came when I ruptured, stutter and tremor, aphasia, memory loss, lack of emotions (think robot), etc. And talking, I canāt shut up! I used to be very quiet and weighed my words carefully. We never know what is going to come out of my mouth as there isnāt much of a filter, in the beginning, I had no filter at all. The pain in NSICU was really high and like the fool I am, I quickly told them not to give me any more morphine. They wonāt start it back up, unfortunately. I erroneously thought the morphine was causing my muddled brain. My abdomen looked like someone took a baseball bat to it because of the heparin shots, my arms were the same due to all the IVs and then they decided to put in a central line in my neck and the a line in my wrist. Both were painful and bruised. I basically stayed confused for three or four years after my rupture.
My second coiling procedure gifted me with an increased stutter and tremor and Foreign Accent Syndrome.
The first time I was aware of the FAS, I was in for my overnight stay after the coiling procedure and one of the CCU MDs who had been there in NSICU for my 26 day stay came in to check me. He said I was talking to the Filipina RNs too much and started to sound like themš.
Growing up in Southern California, having friends and coworkers who were from Mexico or spoke Spanish because their family members were from Mexico was quite common and I could speak a little, understood more than I spoke and could read more than I could write in Spanish. I also had babysitters from Tijuana, Germany and Russia. Although I took Spanish and German in school, I was never fluent in either, it took me a long time to learn my English words again due to aphasia. I can certainly understand why your mom is speaking Spanish and little English! I imagine itās just easier. Her brain really needs to make things easier for her.
I think the best way to help your family to understand what is going on with your mom is what Iāve read Merl write for yearsā¦this isnāt like a broken bone where one gets a cast and itās off in six weeks, quickly over and done with. A rupture takes years to heal from in my experience. I will be 9 years out come November and I still continue to have improvements and backslides. I liken the brain damage to roadways that become blocked. Say you drive the same way to work, school, grocery store etc and all of a sudden unbeknownst to you, theyāve decided to do road repair and blocked your normal route. But you know the area and can quickly reroute yourself.
The brain has neural transmitters that are like a road. Normally they take the same pathway all the time to give you information that can be processed. With a rupture, those pathways are stopped in its tracks and the brain has to find a new route. Fortunately, they now know that different parts of the brain can be called to action, like a road crew doing the repairs or adding new bridges, freeways,etc. It just takes time and a lot of it. It also takes a lot of consistent work and effort to find a different way of doing things once we become aware of where the road block has been set up.
Thank you so much for sharing your experiences! My mom had a really hard time coming out of the anesthesia. It seemed to have taken days before she would come to. She also didnāt have much pain meds. I think she was on the lowest dose. She was always really sensitive to meds.
Now that she has been moved to a group home, my dad has been playing catch up with making arrangements with the care takers. We are hoping once my mom is on a schedule she will start to improve. It is just really hard to see her this way. She has always been a very active, strong minded person and now seeing her not being able to tell people what to do or telling us what is on her mind is upsetting. The positive is that she is still with us and we can see her and she can see us. Her friends are making arrangements to see her and we hope that will help her.
Having been where your Dad is now with my parents, I can tell you itās exhausting work. Depending on the facility she is in, he may be able to connect with the Social Worker or the Nurse Administrator. If either fail him, he can always go to the Director of the facility. Being that she may be on Medicare, they may have team meetings he can and should attend. Theyāre short maybe 15 minute meetings so he needs to have a list ready to address with the team.
Medicare has ombudsman for every area, if thereās any problems with the care she receives, that would be the person to call. Their number has to be posted in an easy to read area and is usually in English and Spanish and near the main entrance. The facility my Mom was at, had it in Hmong as well.
Since your mom isnāt up and walking make sure you or your Dad check her for decubitus ulcers (bed sores or pressure sores). Facilities will often refuse to admit a patient because of these ulcers and they always make a note both from the hospital or facility sending and the one receiving the patient, itās that serious. Iād just tell Mom I was putting lotion on her, so as not to embarrass her.
The sores commonly occur on bony areas that are rubbing on the bed or wheelchair so make sure to look on her buttocks, heels, ankles, spine, shoulders (I may be missing an area) which is why applying lotion isnāt a bad thing and can be much needed. Theyāre an indication that the patient isnāt being properly cared for by turning on a regular basis and keeping pillows or often rolled up towels to alleviate the pressure.
If you see any pink areas, let the staff know, if itās gone to red tell the Charge Nurse immediately as the facility can be fined and possibly lose their Medicare funding. If itās worse than that, tell the Nursing Director, and contact the ombudsman as well as the State Health and Human Services Department, just sending an email and a picture of the ulcer to the State is all Iāve found was needed.
When the staff realize your family is checking your Mom on a regular basis, they up their care. When a patient is visited at different times not habitual times, they up their care. Good facilities donāt need to up their care, and donāt mind the visits, not so good ones get nervous and provide the level of care their supposed to.
I am unruptured brain aneurysm, but I was in kind of similar with vegetative state with my eyes opened, could not eat etc
Every one has different their challenging life story, but donāt be discouraged.
I felt like being sedated for almost 4 years, now I started to fell I am back now
I mean, donāt feel what it has to be happened overnight.
My doc told me that my brain has a lot of employee, the one made me sick already died, now a new employee is taking over
There is time to heal
Right after she was transferred the RN found a developing sore, but they nipped it in the bud. My Dad told me that it was healing. We also got her a wedge pillow to keep her off her bum. I havenāt seen my Mom in over a week due to the distance. My Dad said she isnāt progressing, but isnāt getting any worse. I am just afraid she is going to be bed bound for a long time. We canāt get her on any therapy due to insurance. It is just so frustrating.
Oftentimes, we do stall in our healing from a rupture. Insurance companies do not like to pay out when a patient isnāt progressing, they donāt see the need. Whilst I understand the business aspect of those decisions, I donāt always agree with it on the personal level. It often falls to the poor CNA or CMA to do the work and they usually have a lot of patients to care for in a convalescent care facility. Things like range of motion is limited to a few minutes for instance. I recall back in the late ā70ās I worked at such a facility. I had 18 patients during day shift as did my coworker that shared the floor with me. We often sped things up by working as a team. Second shift had even more patients per person and there was only two CNAs and for the entire facility on 3rd shift!
If your Dad can develop a good relationship with the staff, your mom may get a few extra minutes. Some Charge Nurses would let us spend some of our break times with patients so we could help them regain very limited speech or another skill. Many, many times we never met the families of patients as no one came to visit. With those patients, we would just sit and talk to them as if they were members of our own family for a few minutes.
That is just so sad that families donāt visit their love ones. We made sure my mom had a visitor every day when she was in ICU and then on the regular floor. Even when she was in the rehab center we always had someone there to visit. I think there has only been a handful of times that we were just not able to visit. Now that she is at a group home, my momās friends are starting to visit from Tucson. Because she is so close to my dad and brother she always has someone nearby.
The group home she is in has only four patients including my mom. There is one caretaker. She does have an Hospice RN or CNA that will come and check on her. My Dad is becoming more on top of the Hospice people to make sure my mom is getting good care.
I would like my mom to have therapy, but maybe it is just too soon and she just needs rest. Sometimes I forget that I need to be patient and that she is just not going to heal overnight.
Iāll bet your mom sure feels the love from all her friends and family! Itās really nice to read when an individual has such support. It sounds like she is in a nice quiet setting. For me quiet and rest, a lot of it, was paramount when I was released from hospital. It sounds like your Dad is really on top of her care, good for him! Perhaps the caregiver can show him and everyone else that visit how to help her do her range of motion exercises.
It seems like my mom is just not improving and actually declining. She can no longer swallow on her own and full on feeding tube. She had been doing so well two weeks ago. What happened? She is now been given a medication that will help her stay awake during the day. She doesnāt respond to commands anymore. Is this because all she does is lay in bed all day? My Dad spoke with my Momās case worker and he has the option of either letting her go or try and get her some help. We may have a Hail Mary happen this weekend with a family friend who is going to evaluate her. I just think it is too soon to give up on her.
Iām not sure itās the laying in bed that has caused her decline and I canāt give a definitive reason for it as Iām no medical expert. Sometimes our brain takes an enormous beating just from the rupture and then I think you said your mom also had an ischemic stroke. The two types, hemorrhagic and ischemic are really, really hard on the brain and itās ability to function.
I have been where your Dad is on being given choices that are really difficult, it sucks. Do you know what type of help the caseworker is speaking about if your Dad decides to go that way?
Iām glad your family friend is able to evaluate her. Hopefully you can be there this weekend and hear what is said.
My mom had a SAH and then a second surgery to prevent another rupture. It was the second surgery that seemed to set her back a lot. After her first surgery to clip the ruptured aneurysm she was able to eat (not on her own) but was no longer dependent on a feeding tube. After the second surgery she just doesnāt seem to be able to recover. Or when she does seem to progress then she goes back ten steps like not being able to swallow now. I am really not sure if my Dad has an understanding how hospice would provide to help my mom to pass. I am just hoping that she needs therapy, lots of it. I donāt think she really has had a chance to get any type of therapy.
Progress after a rupture is all over the board, youāre absolutely spot on with [quote=āmellalight, post:15, topic:16164ā]
when she does seem to progress then she goes back ten steps
[/quote]. It seems to happen to many of us.
Thank you for correcting me on whatās happened with your Mom, I really appreciate it! Did her second surgery require another craniotomy? Iāve never had a craniotomy, always endovascular repairs. Every time I and one, I had to start the two year count back over again.
We have other members that know a whole lot more about craniotomies than I and I hope they can add their knowledge here. About the only things I know is that they are more invasive and usually used when an aneurysm canāt be repaired through the endovascular method or itās just the surgeonās preference.
I think you may have a better understanding of whatās going on if you ask your Dad to give his permission for the Caseworker to speak to you. HIPPA may require his permission and youād need to get their phone number. If you can speak to the person, you may be able to help your Dad understand. Have a list of questions ready and write down the answers or ask permission to record.
Yes she needed another craniotomy for the unruptured aneurysm. The aneurysm was in a more sensitive spot of the brain. When we saw her 3 weeks ago she was improving. We saw her yesterday and she had deteriorated so much that we will need her to get medical intervention to find out what happened to her. We think she either had another stroke, bleeding in the brain or something else. We just want to make sure we have done everything for her before we can say good-bye.
I truly understand the need to do as much as possible for a loved one. I hadnāt ruptured when my brother was at Loma Linda VA and reminded them several times about their mission statement which they were failing at meeting, discussions with the team about giving false hope and not being forthright with the family and my brother. I may have threatened the powers there with a call to one of the Senators in California, but after that, they were on the ballš It was a trial run for when my parents were in hospital and rehab. Hang in there, support each other and reach out to whomever you have. Itās a frustrating heart breaking ride yāall are onā¦I will continue to keep you and your family in my thoughts.
Just checking in to see how you and your family are doingā¦
Well after a really rough last week where we thought we were going to lose our mom, she is now back in her group home. She was taken to the hospital last week. She was treated for a UTI, high sodium, and dehydration. Even in one day in the hospital my mom looked so much better.
She is now in care of a new hospice. I really did try to get her in home care, but Medicare rules my momās health decisions. We are hoping that with this new care she will start to get better and eventually get out of hospice and into home care.