Hopin to find support for my brother who had a brain aneurysm a little over 4 years ago. Wife and family members notice increased in agitated behavior and was wondering if anyone else or their loved one experienced this and if so what suggestions might you have to help him.
Welcome to Ben’s Friends.
‘agitated behaviour’ Ohh, no, not me. As my wife rolls her eyes at me. I didn’t see it as agitation. I was frustrated, I was annoyed that I couldn’t get back to ‘normal’, but I didn’t see it as agitated. When others identified it for me… …OHH yea, that agitated me and only served to increase my annoyance. I couldn’t reach my own expectations. I didn’t voice my frustration as my frustration was/is with self and I (metaphorically) beat myself up about it all. I didn’t want to accept ‘This’. I kept pushing my limits, convincing myself I was building stamina, but the fact was the more I pushed myself, the more my body pushed back. I was on a bit of a seesaw of symptoms up, down, up, down… I was driving myself into the ground. I couldn’t see what I was doing to myself, it was actually my wife who identified it and told me straight ‘Just stop it’.
One of the biggest hurdles for me was acceptance. I had a profession, I had a life and I wanted it ALL back. The reality that it had all vanished and was never going to return was one of the ugliest things I’ve ever had to face. Now what? And even many years later I still battle with that acceptance. I don’t want to be HERE, but the reality of it is that I really have no choice.
For me, I’ve found I have to keep myself occupied, doing something, anything to stop my mind taking me to some of those deep dark holes. In the times when I able to do physical activity that’s not too difficult, but when I’m in agony I have this constant reminder banging away in my head (headache), in these times I have a few differing ‘tools’ I use. I start with a change of activity, change what I’m doing. A change in environment can help. For example, if I’m outside, bright light can affect me. So I’ll go inside, away from the light. I have a few medications, some lesser strength, which is usually where I start and if they don’t improve things, then I have some stronger meds. If those don’t work, sometimes I need a dark quiet room. I’ve also found at these times that music can help distract me from the constant pounding. It gives my mind something else to concentrate on.
These are some of the ‘tools’ I use to better manage and it has taken years to work out what works best for me. Some people may profess to have all of the answers, but from my experience nobody has ALL of the answers. What may work wonders for one person, maybe of very little benefit to another. It really can be a case of trial and error to figure out what works best for that individual person.
Merl from the Modsupport Team
Welocme again! Agitation is quite common I think with those of us who ruptured. Did his brain aneurysm rupture or was it an incidental find and repaired?
I’m 7 years and four months out from my SAH. There are times when I get a bit agitated and they don’t make sense as it may have been something I just did the day before. It doesn’t last long as I’ve learned to remove myself and take a breathing space without much interaction from others. Sometimes I still get easily overwhelmed and also need to remove myself or I might say something I regret. It’s due to frustration I believe.
Some of us have physical impairments that are easily seen. Most do not however and expectations rise from others exponentially when a person cannot see impairments.
I’ve learned over the years that if something new is happening or something is increasing, I need to be seen by one of my doctors to rule out medical issues. I either start with my PCP or my Neurologist. He may need to see his doctor and if he has a Neurologist, that would be a good place to start.
It may have taken me three or four years to be able to have enough of my brain working that I could finally deal with not being able to be employed any longer. It can be hard to accept the differences in our brain functioning prior to a SAH and how we our now. It can improve, but we need to learn to be kind to ourselves.
He may still be having migraines. The pain of these can be of such a level that we snap easily. He may not want to accept there are things he cannot do right now that he was able to before. I couldn’t drive more than a couple of miles for years. For someone who hauled a horse trailer from PA to SoCal except for the 12 miles my Mom drove on a driver’s permit it was a difficult curve. We have to learn to look at what we can do and not what we were able to do.
More importantly, he may not be able to talk about it as Merl suggested. Perhaps meeting with a Neuropsychologist or a Cognitive Behavioral Therapsit specializing in TBI or Stroke can help. We often have to turn to TBI and ischemic stroke professionals as there just isn’t many trained in SAH.
He may have photophobia in which case, low lighting helps tremendously as do sunglasses and a hat when outside or in the vehicle.
I think for me, the best advice was one my wonderful neurosurgeon told me - when did you eat last and how much have you had to drink today? Three things I find extremely helpful is to hydrate, eat protein and exercise in some form be it stretching, a walk around the yard, anything physical…
Hello to you and thank you for sharing! His brain aneurysm ruptured, and the first emergency visit was treating for a migraine as he had a long history of migraines. Once discovered there was a 5 hour surgery with left side impairment to extremities. During recovery he suffered a stage 4 bedsore to buttocks, went to the bone, slowing any therapy to begin. I am a sister looking from the outside in but feel there is anger in his situation both on him and his wife. I feel the Cognitive Behavior therapist may be a good start. I know he can be very sharp at times but also get very confused at times. I don’t know if his functionality can improve to his left side at this late time. I kind of suspect that there is and was an attitude of this is how it is and it’s not going to get better. Now it’s to the point thet words in anger on both sides are so hurtful, just not a healthy environment. I have a question about driving. Did you just get back in the driver’s seat? He wants to drive so bad and has a valid driver’s license, they just renewed it when it expired, it’s now good until 2023 and has no restrictions on it?
Hello and thank you for sharing your story. Although he has never reveiled his hurdles, I can imagine they are the same as your’s. He too had his own business. The music idea is a real good one, he played the organ at one time in his life and sang in the choir. He gets angy and feels everyone tells him what he can and can not do.
For sure i agree that Agitation can many times be mistaken for frustration. I have had 2 seperate craniotomy 's the first one in 2008 actually ruptured and then they found another one in August of 2021 and i had to wait through the process till Jan 14,2022 to have it repaired because it went from 4x4 mm to 8mm during the time i was waiting for them to decide if they were going to operate or not. The common thing after both surgeries was me trying to be big brave , im fine, no i dont need help and everyone around me thinking they know whats best for me always telling me what i can or cannot do is EXTREMELY frustrating for a independent person. I actually found adult coloring books very helpful . For one thing its good practice staying inside the lines and i get to decide what colors go where. Simple but effective. I would suggest trying to show him you still have faith in his capabilities and allow him to decide things sometimes.
Ahh yes. Me neither. I tried to hide it all, but it seems I’m not very good at hiding it. My wife can read me like a book. She knows my signs. I had what I call the ‘Caveman mentality’ ie “I man, I strong. I can do all of this on my own”, (Only I couldn’t) and that was frustrating in itself. I used to be the helper, so to now be the one needing help OHH HELL NO!!! I didn’t want to accept THAT. The reality was I had no choice, but the acceptance of that was a very bitter pill to swallow. It takes time to accept. Even today, years later, some days my acceptance is OK (not great but OK), some days I fight against it.
Well, it’s certainly one that assists me. If I sit down and think about it all, my mind can take me down some awful black holes and when there’s nothing to distract/divert my thinking I tend to roll the same incessant thoughts over and over and ov… Music can help break that cycle, divert my thinking from that repetitive train of thought.
OHHH YEEAAA, it was one of my pet peeves (and still is to a point). I found all of my ‘usual’ limits had changed. My stamina had changed, things that were simple to achieve I now have to plan out and I hated it. It all added to my frustration, which added to my stress. Then to be told what I can and can’t do… and I could go from peace to rage in a heartbeat. I know others were trying to help but I needed to do things for myself. My wife/family and I made an agreement (of sorts), if I need help, I’ll ask.
This is not easy for anybody involved, we know this because we live it too, so come talk to us.
Merl from the Modsupport Team
Hey Holly! It sounds as if he may have had an ischemic stroke as well as the hemorrhagic stroke, I’m not sure. Hopefully he has had Physical Therapy, if not, it would be helpful to him because he could get out of the house and develop a positive relationship with someone who didn’t know him as he once was. If he has had PT, he has to keep doing what they taught him. He may be able to get a refresher course. He really needs to keep exercising as it in part helps our neural pathways reconnect no matter how far out from our rupture we are.
It angers me to hear that he had such poor care in which he developed a Stage 4 decubitus ulcer (bed sore). Someone wasn’t doing their job. I hope they reported it to the insurance company and to the State Health Dept. I learned whilst my parents were alive and in hospital that Medicare would stop paying the facility and there’s all types of other fines. A patient cannot be transferred from the hospital to a rehab with a DU is what one of the RNs told me when one of my parents were being transferred to rehab. I know the wonderful RNs I had in NSICU came in and turned me about every minute…ok it was really every 20-30 minutes. Pillows are a high commodity in any ICU, there are never enough.
The relationship between partners changes after any type of brain injury. Sometimes existing issues just increase. The caregiver is scared and can put limitations on the other. We become frustrated with all the rules. Arguing when someone is agitated, frustrated, etc is really, really bad as it leads to even more agitation, which then can lead to a full force blow out and rather quickly at times. It’s much more effective to stay calm and non argumentative.
BH often says the hardest thing to learn was to let me try to do something. There was probably some control issues that developed with both of us. Perhaps your SIL would benefit from a Caregiver Support Group. She may find one for TBI or Stroke that would be helpful in her area, there may even be one for brain aneurysms if she lives in a big city, for your brother as well as they would be different groups hopefully.
After I ruptured I had a lot of rules and it seems the list became longer rather than shorter - no power tools, no cooking unsupervised and no driving if I couldn’t be comfortable as a passenger, etc. The rules were set by my Neurosurgeon and other specialists that would report to her. But the no driving rule was from the day I was released from NSICU. Some areas don’t allow driving after a rupture or a stroke for a set time period, NC has no limitations.
It took me awhile to be comfortable as a passenger. I lived in a small populated area of about 5,000. I couldn’t drive but to my parents home which was under two miles from our home and I could drive to the Outpatient Rehab by taking back roads so about 3 miles. After my second procedure, I drove my Dad to the service provider so he could pay the cable bill and had a very difficult time, that city is our largest populated city with maybe 35,000 people and it was lunch time. It was a lot for my brain to drive due to the overstimulation coupled with my Dad wanting to have a conversation. It took a few years for me to be able to listen to the radio and drive. I cannot drive well in the rain or snow due to the overstimulation. By choice, I don’t drive when the school buses are on the road.
We have to learn our own limitations, not always having someone tell us. However, that being said, we need to take self responsibility to not put ourselves or others in harms way. Before my last procedure, even if I had to take one or both of the dogs to our Vet, I had to text BH when I left, pull over numerous times if it was raining so my brain could function and then when I left the Vet’s office, I sent another text to BH, and then another when I arrived home as well as call the Vet’s office.
My brain does best when it’s overcast. Sunlight can cause my brain to not function correctly. I can always tell because my right eye is affected first. Sometimes I can close that eye and my brain reboots so to speak, sometimes I have to pull over and park. If he hasn’t driven yet and the doctor hasn’t told him not to drive, he could benefit from a short drive around the block or to the store. I would suggest he have a passenger. Someone encouraging would be more helpful than someone whose going to argue because they’re scared. Think of it as when you first learn to drive and who is more helpful as a teacher.
I am abosutely agreeing what you are saying. Do not see as agitated. Probably a little one is not getting used with his new situation, so he gets frustated easily and have temper tantrum. Probably try to accept a new situation and making a turning point.
Yes, my dear mother experienced agitation- specifically starting around 4pm. Doctor termed this “organic sundowners.” As she didn’t experience these symptoms until after clipping of her aneurysm. She is 74yrs young. Neurologist started her on Xyprexa- smallest dose, once daily & prn, if needed. (So 2 pills a day if warranted). This med has done wonders for her as well as us, her family & nursing aides we have hired!
Hope this helps!