Post-clipping of cerebral aneurysm: Posterior Communicating Artery. Profound confusion, memory difficulties

On December 3, 2021, my mother had clipping of a 12mm cerebral aneurysm. Post-surgery, she is now experiencing profound dementia and Alzheimer’s/post-stroke like symptoms. We have physical, occupational and speech therapy as well as a nurse coming to our home. Other than these individuals and the therapy they are instructing me to do, I do not know how to help her. I am mentally drained myself.

My mother, who is 74 years old, has always been highly independent, lived by herself and has done everything any individual would do on a daily basis. She has never had dementia or any cognitive deficits.

Does anyone have any thoughts or advice, please? I am extremely desperate and am so grateful I found this website.

Any and all communication would be wholeheartedly appreciated!

God bless,
Jessica

Hey Jessica,
Welcome to Ben’s Friends.
20 days post surgery? I have to say here, your mother is still in recovery and although improvement may seem slow, with a brain injury this is not uncommon. The superfine neurocircuitries have been damaged and this takes time to recover from. With brain injuries there is no set time for recovery. Some things may return relatively unaffected, but other aspects may never return to ‘normal’.

You have services in place, coming to your home. That’s a bonus. You are following through with the advice and therapy, and in all honesty that’s about as much as you can do. The last thing you want to do is overload your mother, sending her progression backwards. Sometimes with dementia/Alzheimer’s, where memories can be affected, a process of repetition can help. For example looking through photographs, identifying individuals, activities, places and times can help trigger memories. There are also things like brain games. A site I have used in the past is Luminosity.com, it has brain games. The processes involved in identifying times and places can also trigger other memories and other mental processes. These processes can be VERY tiring, so start slowly.

I know this can be a very confronting situation for all involved (including your mother). It can be VERY difficult to accept that the skills/knowledge and abilities she once had have vanished. The word ‘Frustration’ does not come anywhere near close to explaining where your mother is at and that’s from your viewpoint. Multiply that by 1000 for your Mom. Patience is going to be key, you may find she tires easily, you may find her frustration showing more rapidly than usual. These are all adjustments that need to be made along this journey. Things she maybe able to do one day, maybe all too much and overwhelming the next day, so having flexible expectations will save you a lot of stress and the less stress, the better/easier things will be for all involved.

Now, looking after your mother is important BUT do not forget to look after you too. Burnout in the caring role is VERY common and that’s never good. Burn yourself out and there will be no one to care for your Mom. You must not forget to also look after YOU.

We are always here if you need to chat.
Merl from the Modsupport Team

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Welcome @JessicaM! I wholeheartedly concur with Merl. 20 days post rupture, I was still in NSICU. Bear in mind healing does take years, not days or months though your mom will have some really good days whilst healing and then there will be some not so good days and some down right frustrating days for you both. Encourage her to do as much as she can for herself and not to give up.

Some things that help is to keep stimuli like noise or lights at a minimum. We often experience things that hurt our brains and these are two of the culprits. Even now, seven years after the fact, sunlight that goes through the trees is painful and effects or escalates many neurological issues I still have. Sunglasses and hats are a must have for me. Remember everyone is different, there is no cookie cutter fix. One of the things that doesn’t seem to be mentioned much is the need to stay hydrated and an increase in protein which is paramount to helping our brains heal. Speak to her surgeon or a RDN if she has one.

Above all the worrying and exhaustion, you really need to take time for yourself. A set evening where you’re able to go out for dinner and a movie, enjoy a hobby, etc. It will help both of you if you can pick a day of the week and a time and stick to it. Your mom will eventually learn that the day and time are for you and she will be grateful as well. I really didn’t need to be around my mom when she had all the home health people coming in and it was great for both of us.

Ben’s Friends also has an online community just for caregivers. Here’s the link https://caregiversupportcommunity.org/

My BH had a really difficult time of it when I “popped my pipe” as I like to refer to my rupture. Still does, truth be told, anytime I have a set back, and yes it still happens. It was difficult for us to get into a rhythm where I could gain some independence. My parents had to watch me when BH went to work. They would ignore the fact that I had issues on doing simple things to the point my Neurosurgeon grounded me from going to their house for three weeks😂

Remember to pace yourself as again healing takes years for many of us.

All the best,
Moltroub

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Ohh yea, this neuro recovery is NOT a straight line of improvement, in fact far, far from it. I still, years later, have a seesaw of symptoms. Some days, everything is fine. Some days, everything is NOT and I never really know what today will present. I have found that if I do too much today, I’ll be paying for it tomorrow, so pacing my activity has become a priority and I hate it. It used to be I had 2 speeds, full tilt and stopped. I could go all day. Now, ohh, I’m lucky to get to 1/2 my former pace and more than 2-3hrs of physical work and I’ll be paying for it in agony.

I also find bright light and flashing light has an impact, noise has an impact, heat has an impact. Some people also report the moon phases and tides having an influence. Also diet and some food additives can affect both frequency and duration. Because all of these are variable trying to pinpoint a cause/effect can be very difficult, so again, patience, lots of patience, is needed. Sometimes (actually LOTS) I do wonder how/why my wife puts up with me as I know I wear at her patience something terrible.

The first 6mths post surgery were awful. I am NOT a nice patient at the best of times, add a BAD headache and I’m simply intolerable. If I’m having a BAD day, the best advice ‘Stay away’. I need a dark, silent bed at these times and medicated to the eyeballs.

I just have to be prepared for whatever ‘Today’ decides to throw at me. If I can feel my symptoms increasing, first I’ll change what I’m doing, change my activity. If that doesn’t help, then I’ll medicate. Give it 1/2hour to an hour for the meds to work. Still no improvement. Laydown in a darkened room. If still I’m bad I’ve got some heavier opiates I can take. If there’s still no improvement, I need medical attention. Now, these are my signs and ‘usually’ I can manage, but there has been occasions when medical attention has been required.

ABSOLUTELY!!!

Merl from the Modsupport Team

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I had forgotten about my three rules that would send us to the Emergency Department immediately! For me, they were a stiff neck, really bad headache, and nausea or vomiting.

Last month, I went to a friends wedding that was supposed to be outside but moved inside after the vows due to weather conditions. The wedding date was just shy of my seven year survival anniversary. It was too loud, three photographers plus the folks that didn’t abide by the no picture rule and the noise. I am still trying to recover.

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Hello and welcome Jessica. Was this a scheduled surgery or the result of a rupture? Either way, it is still pretty early in terms of brain recovery time. I had a rupture, but what I do remember is the surgeon telling me that the brain does a great deal of healing in the first year following . I can say that in terms of abilities and memories improvements did not end at the one year mark either. I wish there was a timeline on what improves and when or even what never does but it seems to be different for everyone. One day at a time and wait and see is all I know.

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