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!
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
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.
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.
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.
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.
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.
Thank you, Kellie! This was a scheduled procedure. I’m not certain if the clipping of this aneurysm was a good idea for her. Her short and long term memory are severely impacted! This is and has been very difficult since after her surgery on 12/3/21 to cope with everyday- for both her & myself.
I’m not certain if my sister & I can financially afford to continue to pay caregivers for when I’m at work- we took out a $15,000 loan for her. We are both working a ton of overtime & we want nothing more than for her, our dear mom, to stay at home & not have to go to a nursing home.
I pray she will continue to heal & be able to love an independent life again! As for now, someone has to be with her 24/7.
Jessica, Maybe you and your sister can look into this Adult Day Centers
Also check with her doctor, perhaps she or he can suggest something with Medicare in home services. He may just have to write a letter saying she is home bound. I just reread your original post and see she has some services. Reach out to them and see what else they suggest.
Another alternative would perhaps reach out to her church members if she attends services somewhere. My old neighbor, who happens to be elderly attends church in which they help out other congregates. There’s a dozen or so and though they can’t do any heavy lifting due to their age, it gets them out of the house and helping others. No one person stays all day but rather takes certain days and certain hours that fit their own schedules.
If it helps ease your mind on the decision that was made, as a survivor of a ruptured aneurysm I would have made the same choice as your Mom did regardless. Best wishes for continued healing for your Mom and that you and your sister can be relieved of some of the pressure.
My Aunt had a stroke a few years ago. I found her, she didn’t answer her phone and her mom, who I was caring for called me at work, she’d had made coffee so I was sure it happened within a couple hours, she was total out of it ambulance took her to the hospital and she’d had a stroke they had to repair. She was there for over a month. Not being herself she refused to take speech therapy. So I had to try and help her too! She came home, I basically had to talk her into taking her meds! I took her to appointments, as her mom too! She refused to let doctors do things like take blood, she never spoke over 2-3 words so I learned to read her- it was extremely hard at first than got better- she basically used her hands to help me understand. After her mom passed, it was just me taking care of her. I also had a young daughter who was just starting in the first grade. She wouldn’t live with us so I’d stayed with her- she had to also have dialysis because she started having kidney issues. I finally had to hire a nurse to help 3 days a week! It’s hard to totally watch & care for someone when you have many other responsibilities, I worked slso. But it all worked out. She did great for years, just didn’t never get her speech back/ she refused to go to therapy. She called me the night before she passed, she for the first time said, I’m going tomorrow! I told her no- we don’t have appointments tomorrow, she smiled big for the first time in a while and said yes, I love you don’t worry, I received a call from the nurse at 5 am, she passed& I realized what she was saying! I myself had a few brain tumors, they are benign thanks to God! I had a cranial surgery to remove 3, it’s how the dr tested them. I have an indentation above my right eye, it took me about 2 months to just get my strength back and I still have a few memories that come! It takes time after brain surgery! Especially her age I’m sure, just take day by day, and learn to try and relax and just be there , if you have any one that’s available to help- even just a little- let them! You’ll need your rest!!
Welcome Ms. Sandra! Those few memories that come back are exhilarating aren’t they? Even now, when someone is talking and a memory pops up I thank them profusely!
Thank you so much for sharing your story about your Aunt, rest is what every Caretaker needs as the work they do is exhausting and stressful. I hope every Caretaker (Carer in other parts of the world) heed your wisdom. Thanks again for posting.
Let us know how it goes Ms. Jessica. And as @Sandra said, make sure both you and your sister rest and take time for yourselves. I know from what BH has told me that fear often runs rampant with caregivers on all the what ifs, but please take a few hours a week to have fun.