Advice on Ruptured Aneurysm Recovery

Hello! I am a 20-year-old only child and my mom (49 y/o) was diagnosed with a ruptured aneurysm on 4/8/21. She was in the ICU for over a month, step down for 3 days, and now a rehabilitation facility.

My mom is finally being discharged from the rehab center on 5/25 and I am so excited for her to come home. However, I know that I am going to have to switch roles from her child to her caretaker. She is very impulsive and quick on her feet, but her balance is off. She does not have the insight that safety is a concern and her short-term memory is a bit off, therefore I know I will have to constantly monitor her 24/7.

It definitely has not sunk in yet that this is going to be a whole new journey in my life. This will be the first time in my life where I am not thinking of myself, rather, another person.

I know I have a lot of support from my father and uncle, but I was wondering if you guys had any advice on how to transition into this new life? What has worked in your experience of recovery? Or any general comments regarding my situation? :heart:

I love my mother so much and want the best for her. And I thank God for her extraordinary recovery and that she is alive.

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Hey D,
My name is Merl, I’m a member of the modsupport team here on Ben’s Friends. I, like your mom, am a neuro patient (Often without much patience for my own predicament). Prior to my neuro situation I spent 20yrs working with people with disabilities, which is a bit ironic when I think about it all, being that now I’m the one with the disability, but it has given me a bit of experience from both sides, both as the carer and as the patient.

Switching roles is NOT easy… …and that’s for all of you. It’s ALL very foreign. You are going to need LOTS of patience. LOTS. At times you’ll need to care for your mom, but at times you’ll need to back off and allow her to fulfil her own needs. In professional terms, you have a ‘Duty of Care’ for your mom, to look after her to the best of your ability BUT on the opposite side to your duty of care, your mom also needs to have ‘Dignity of risk’, she has the right to take certain risks, to be able to learn her new limits, to learn from her own mistakes. Trying to keep the balance between these two opposing arguments is NEVER easy and being family, trying to separate the risks vs care can be extremely difficult. The easiest thing to do is to take over and do it all yourself BUT that minimises your mom even further and will burn you out at lightning speed.

My best advice is that you have a meeting with EVERYBODY involved, including your mom, about who can do what to assist, but ONLY with your mom’s agreement. Yes, your roles have changed but coming at it from an authoritative position is only going to alienate. Your mom has gone from being house manager, a very important role, to nothing. And that is not easy. Try to involve her in every decision, every discussion, just as you would have before, but especially in regard to her own care.

There are community services out there, some will assist with things like personal care. For example, If your mom doesn’t feel comfortable with you assisting with personal hygiene (being her child), then external services can also help. There are many different types of services, so investigate them all. They are there to assist. Use them. You can try to do it all on your own, but you will burn yourself out very quickly and then you’ll be of no use to your mom at all. Use those services to your advantage. I know in the UK there’s a service called ‘Citizen’s Advice Bureau’ where information regarding local services is available, but in the U.S. I’m unsure, sometimes the hospitals have social workers who would know local services. There is also organisations such as this:
Support Resources | National Institute of Neurological Disorders and Stroke (nih.gov)

This whole journey is going to be a learning for EVERYBODY
BUT
You MUST look after you too. Don’t forget that, don’t forget about yourself. You will still need time for you. Burn out in the caring role is, sadly, very common.

We are always here and if we can assist with information or you just need to unload, just ask.

Merl from the Modsupport Team

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Welcome @Dairy! I am so happy your mom is doing well. I too ruptured and it’s hard long road for recovery. I was 53. ICU for 26 days, step down for a couple days and then home. When I got home it was a bit overwhelming I guess you could say. BH, parents, friends were all overly cautious to my liking. But then my parents who were older and in need of care decided nothing was wrong with me lol. I had to search out my own outpatient therapy, but like Merl, I was in the helping field and knew where to get it.

Following Merl’s advice that you will need to take care of yourself in order to take care of your mom is paramount! She is still your mom so treat her thusly, otherwise she may get a bit upset. I am not allowed to cook unsupervised so I do all the prep work as I can take how ever long is needed, if I know what we are having for dinner.

For memory issues, have her use her smart phone calendar with reminders set. I look at my calendar every morning so I know what I’m supposed to do, the reminders help me to remember. I also used sticky notes a lot in the beginning but they were getting overwhelming so a dear friend got me a white board, over the years I’ve just been using my phone. I have to keep it with me anyways.

Depending on your mom, she may need to have lights lowered and sound down. It’s a change for the whole family. Be patient and kind, she will eventually become desensitized but maybe not to the point she was prior to rupture.

If you’ve been reading on this site, you may have already learned that healing takes time, a lot of time. So it is paramount that you care for yourself. Set a day or two a week to be with friends and do what you would do if she hadn’t ruptured. I think that learning to care for others is a great thing but you absolutely must take care of yourself. If your dad is still in the home, he will also want to step in and help. You both may need to remind each other to let your mom do what she can. My mom was actually teaching me to cook again and we had a great time of it. Your parents relationship may change a bit, just support them both in small ways.

You will get frustrated and scared, make sure to talk about it with your mom. You still need her to be your mom and she still needs to be your mom. Don’t try to change that. Also learn to walk away if you start becoming overly frustrated, it’s called time out and it’s ok to take whatever time you need.

Not sure what part of Cali you’re in, I know my aunt decades ago helped out in San Diego County and they have a plethora of adult services that are really fantastic, or so my aunt insisted. But start with the Social Worker at the rehab facility where she is at now, if it’s in your mom’s area, the Social Worker should know what’s available. If your parents are still together, there will be a discharge meeting, it may help to attend this. They are very fast and you need to have all the questions written down prior so you have time to ask them. Get with your Dad and uncle to make sure all the questions are covered. Be very professional in the meeting as they will give a couple more minutes. Treat it like you are in school or in an office. Be clear, concise and short in the questions. Write the answers down, ask questions if you didn’t understand. One of the things that pop in my head is what to do with your mom if she needs assistance or supervised and everyone is at work? Does insurance cover an in home aide or will your mom need to attend a day facility?

Oh and before I stop this novella, keep your home near and orderly. Having a lot of stuff is a bit overwhelming. I think it reminds us of the small rooms in ICU with all the machines on top of you, but I really don’t know. I do know a clean, orderly home helps combat depression.

Stay in touch, we are glad you joined and reached out to us! We are here any time.
All the best,
Moltroub

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Thank you so much Merl. I appreciate you more than you know. :heart:

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Thank you so much Motroub. Your insight helps so much. Independence is definitely the goal and making sure she is safe. I appreciate you more than you know too. :heart: Thank you

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Greetings @Dairy! I am one of those super lucky survivors that made it to the OR (twice now) without rupture. I CAN tell you that recovery after a craniotomy is daunting in and of itself and even though I did not rupture, my short term memory is just awful. Mainly for silly things like a TV show or a movie, but sometimes important things too. In the beginning my husband got very frustrated with me ( he’s a physician) and it made me not like myself and sometimes it made me cry. Over time, he began to realize that I really did not remember and that I wasn’t playing games. Your mom may have these issues too, and she may need to watch the same episode of “World on Fire” as an example, (it’s a PBS series and it is AWESOME!) to “remember” it. What an amazing daughter you are to have found our community to seek understanding and advice. I do agree with Merl and Moltroub that you also need to look after yourself.

Please do inquire about an MRI/MRA for yourself at some point. Brain aneurysms can be genetic and although scary, finding out before rupture is obviously a really good thing. My maternal great grandmother died of a rupture, as well as my maternal great aunt. We are of northern European decent, which is an additional risk factor. My son is 22 and he needs to be scanned too. You are a reminder that I need to get him scheduled.

We are here for you @Dairy! Please know you are not alone…

Kim

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Thank you, Kim.

Your words are really comforting and healing. You and everyone on this thread are very strong as well! Thank you for your insight and I will take note of that MRI/MRA for myself too.

With love,

D

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I had ruptured aneurism year 2006. I had 13 brain operations since then. Clip, flow diversion, coil. You name it, i had it all. I didn’t even know my name, as one unruptured aneurism started bleeding when they were operating. Please be patient,which is the most important thing. Try not to do everything for her. She might feel lost at home, i did it anyway. The most important thing is love. Also get some memory game. Bejeweled helped me a lot.

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We are so happy to see you again @OzlemS! Thanks for sharing a part of your story, it means so much to other members,

Best,
Moltroub

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Hello, I had a aueurysm repaired in 2017, I have been a caregiver to my mother basically all of my live, she has been mentally ill since I was 6 years old, the roles are definitely reversed, its difficult at times, she is also very quick on her feet, very impatient , does not like me to redirect her sometimes but I have to keep her safe as best as I can, l feel guilty sometimes because I have to tell he NO about certain things, she wants to know why its like a kid that have tantrums. The best advice I can give you is to be consistent, reiterate and have patience. Moderator has removed personal email in accordance to community guidelines, please PM each other with personal information for you’re own protection.

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Thank you for your story @OzlemS. You are very strong and resilient. I wish the best for you.

With love,

D

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Aloha! I am a survivor of a right MCA aneurysm from 2008 and not to set your expectations based on the way she was before the aneurysm. Yes her behavior is more like a child but treat her with the respect of an adult. Rather than saying no or I told you so,phrased it as a question or choice for her to make. Two books I have found useful are “My Stroke of Inspiration” and The Brain that Changes Itself. Your mother is also somewhat aware of her changes but right now can’t put a finger on it! Take care and be kind to yourself!

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Hello Dairy,
So glad your mom is able to come home! It is a new journey for you both.
I have two brief pieces of advice, the first and foremost is to make sure she gets plenty of rest. It is easy to underestimate the amount of rest that the brain needs to heal. Rest is absolutely essential!
Secondly, I recommend reading or viewing (or both!) Jill Bolte Taylor’s “Stroke of Insight”. When I was recovering from my brain aneurysm rupture, I found it both reassuring and inspiring.
Sending prayers and best wishes for both you and your mom,
Dorothy

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Tammie,

You are incredibly strong. You are very reassuring and it is difficult to say no to my mother, but I know it is for her own good too. I know she would want the same for me too. :heart:

D

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Theresa,

Thank you. Just downloaded the audio book for “My Stroke of Inspiration” I have heard about her as well, and you were reminded me to look into her story. Thank you so much for your insight as well. It means more than you know.

With love,

D

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Dorothy,

Thank you so much for your insight too. I will try to give mom ample time for rest as well as balance her other activities of daily living like exercise.

With love,

D

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@Dairy walk abouts are fantastic for healing body, mind and soul! I hope y’all can walk around the neighborhood or go to a park and watch the people play.

Best,
Moltroub

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Lots of great advice and insight in your responses so far. I too ruptured and survived. What I can add to what has been said is that I didn’t know what I didn’t know. I did have to try and fail to learn what exactly I didn’t know. At first that included a great deal of tasks and physical things. It still happens to me 6 years later but in more subtle areas like retrieving a word or memory that I am certain I still have somewhere, but it really doesn’t exist anymore.

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You sound like an amazing person! Your mom is lucky to have you! :heart: Wishing you the best

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Greetingz and Welcome@dairy…
I’ve read some excellent advice shared, and I know both sides as well. I was a caregiver for my mom, and it’s important that you allow her to be your Mom for you. Also, definitely know your limits as well… when it seems to much, take some time for yourself. As someone recovering, it’s difficult for us as well… As for myself, my son was 11yrs old when I was recovering from aneurysm/stroke and craniotomy.
I felt inadequate and new to things that I thought were familiar. I had my Mom, but she was frightened by what I had been through. You taking the step to find support is a great start. This is a wonderful group of people, all here to help you on this unfamiliar journey. Reach out when you need to, and be gentle with yourself, as you’ll be for your Mom. I’ll keep you and your Mom in prayer, trusting all will go well for you both!

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