Rough Day 😢

I previously posted about my mom having an AVM repair on 4/29/21. She actually started to do much better until Sunday. She had quite a few seizures. She is “stable” but today is the worst I’ve seen. She looked like death. The seizure medication along with I’m sure the seizures has made her completely exhausted and out of it. My heart just breaks. I am stricken with grief. I want to get off this horrible roller coaster. I’m tired. I’m angry. The doctors say TIME, it’s a set back. I understand, I get it, I do. A 12 hour brain surgery after a rupture takes time to heal. I’m just terrified. I’ve also mentioned I’m the only child, so it’s all on me. I’m the scribe to other family members, my moms main support, taken over her finances, etc. I’m also a single mom to a 3 year old, I just want a break, not like a vacation, but a moment in time where the weight of the world isn’t on my shoulders. No one gets it either, I’m doing the best that I possibly can. My mom was always there, always my support, always my crutch, always THERE. I just feel so alone, and it sucks. Life is life and things happen out of our control and all we can do is carry these things with us to a new day. I’m also scared to lose my mom. No one has your back like your mom, no one. I’m praying for a better tomorrow.

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While we are all different, we know the roller coaster these things put entire families on. I had the AVM, and I think that was far easier than if it was a loved one. I can’t imagine if it had been my kids, or my wife, or another loved one. Your mom is so fortunate to have you, for her support, and you are definitely in this journey together. Your daughter needs you. Most people think if they take time for themselves right now they are being selfish, not true! You need to ensure you’re healthy to take care of others, take the time! It is as much for the, as for you. Take Care, John.

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Hi. That is a rough time!

I’d like to say a couple of things and I hope they are helpful.

If there is any possibility of asking for help from someone else, please ask for help to share the burden of being there for your mum or looking after things at home. You’re doing an amazing job but we also need to be careful about you.

I often think of these things like they tell you on an aeroplane – if the oxygen supply fails, to fit your own mask before attending to children. The temptation as a parent of a child is always to help them first but the point of the in-flight advice is that if you don’t attend to yourself, you may not be well enough to help your child. So it is with ill relatives in hospital – if you focus only on your mum, there is a real risk that you don’t look after yourself enough and you could end up failing. I know a friend of the family who was so dedicated to visiting his wife in hospital, he neglected himself to the extent of messing up his kidneys and ended up very poorly. Please balance visiting with looking after yourself, and that includes food, drink and rest. Honestly, you will look after your mum best if you look after yourself first.

I’m sure she is quite exhausted from the recent events. It does sound like she is not very well. Brain surgery does take an inordinate amount of time, so if the doctors are saying “it’ll take time” what they honestly mean is that it will take A LOT of time. I can say that as a patient, having an injury like a haemorrhage is devastating and recovery takes a lot, lot longer than any of us have the patience for. A craniotomy is a major operation and sometimes is amazingly unimpactful but it sounds in your mum’s case that she hasn’t had an easy ride at all. If she had a rupture, it is the rupture that has caused the damage and will take time to recover from. It is going to take a long time.

What that means is that you need to think more long term and (back to my earlier point) how you can get through that time just as well as your mum.

Honestly, you need to think in terms of months rather than days or weeks. I know that sounds scary but there are lots of people here who have gone through similar and had to build back from very little. Depending on the damage that has been wrought by a bleed, it could take something you’d measure in years to get back to being “good”.

I’m sorry I’m being a hard person at a hard time but my hope is that you think longer term than I suspect you currently are because if you are thinking days or weeks, I am worried you’ll burn yourself out well before your mum is ok.

I hope this helps. It’s meant to help. We are here to be with you the whole way.

Very best wishes,

Richard

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I get it

Just do the best you can - like seriously. It’s the only ways I/We get through the day

For the last two days I haven’t left the house because I had another gallbladder attack - so what, today is another day to hope for the best

It’s hard af, specially when you/we feel alone - but, when it comes to it - that’s what makes us

Shoot, before this - I haven’t even spoken to my mother for years. When I laid it on her, it actually hit her. Same with me, I’d take another explosion in my own head any day of the year over my son having anything related to this passed onto him.

Keep going - life ain’t nothin if it ain’t hard

It was incredibly hard as a patient I can’t imagine what my wife and daughter went through as caregivers; people always ask me how did you find the strength to do it how did you get through it? and my standard response was it’s amazing what you can accomplish when you don’t have a choice, you just have to take it step by step day by day and it will redefine patience as it takes ALOT of time patience I never knew I had until I didn’t have a choice.
hang in there you got this and realize we’re here for you when you need to vent or have questions.

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Thank you all for your words, I truly appreciate them all. My mom was doing so good and I just can’t wrap my head around this. I see my therapist weekly and am working on the ‘guilt’ aspect of self care. I’d never leave the hospital if I could, but I have to. I’m also ok if this takes months or years to get her well, I’m here for that. I just struggle with, is she in pain, or is she done fighting and of course my biggest fear, is she going to die and am I going to have to make that choice to stop treatment or life saving measures. I know her wishes but it doesn’t make it easier. I spoke with her neurosurgeon who I call my angel and he said he believes my mom will get thru this. Just hard, thank you all

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Well the best people to know are the neurosurgery team. If they are saying “yes” then take it as that’s the way it is going.

I think you’re doing marvellously. The only thing is not to put too much on yourself. You’re far too important to your mum and your three-year-old to lose focus on you.

These things take a long time and progress isn’t always forwards. Sometimes the docs will tell you (or you’ll see) a bit of regress. Don’t be disheartened by that because you can’t measure progress with these things day by day, more month by month.

You’re doing great.

Richard

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I just wanted to add this - when this kinda stuff hits(anything our own health related) - we really are on our own. . . It absolutely helps to have caring people/family by your side - but, it’s our/their own journey

That’s how I seen what happened to me

I was not able to have anyone with me at all - it was right during peak of COVID

I pray for your mom my brother

I’m so sorry you’re going through such a rough time. I truly get the single parent thing and relying on mum to help with emotional and physical stuff. It’s hard for you full stop and to have you’re mum so poorly and you can’t do anything to help her is hard too. I hope you have some good news soon and although I can’t help in any real sense, just know I’m rooting for you both. Take care :heart:

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Hi, if your mom got a few seizures I believe that’s a red flag to increase her kepra dosage? May want to check with her neurologist on that.

Sorry about your situation but as a survivor myself I believe your mother needs you more than you know. Hang in there, wishing the situation improves for everyone.

Richard.

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I am sending you prayers and hugs. Our family has stress like yours and it is hard. I supported my husband through his work accident of being a high power lineman and being electrocuted, burned and lost his right leg. He now supports me through “episodes” that the doctors can’t decide how to treat due to my AVM. You are not alone, we here and send our support, love and hugs. Use our shoulders any time you need to.

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I had two AVM repairs. My first surgery was 13 hours. My second was 12. After the second I started having about six different kind of seizures a day, that included my night time one"s. The only way I got them to stop, was I found an Osteopath that did acupuncture, and cranial manipulation. He was the only one that ever got me better. Some insurance company"s don"t cover acupuncture. When you do her year end taxes itemize her taxes for medical. You can write off a percent of the acupuncture. It will be a tough road in the beginning. You can do this! You are a strong woman… contact your states disability organization of rehabilitation they can help you… They helped me it took six months a lot of red tape. Tons of paper work. I kept at them. There is help out there, with services, Believe me it won"t be easy but the government can help. Also go to her social security office talk with them. The first year will be hard, but we are all here for you. It will get better. I"ll send pray"s your mom"s way.

@Avmdaughter Your mom is very lucky to have you. Speaking just as my personal experience as I have been both a caregiver( and the patient ) for my younger sister who almost died a few times after she got the flesh eating virus and spent a year in and out of the hospital . Just 2 years before I was paralyzed from a massive rare stroke and was the patient. I personally feel its tougher to be the caregiver.
I am now advocate and volunteer with my local counties aging commission which has taught me that each county in the USA has services available under Aging and Adult services that your mom might qualify for once she is home .i.e. like cleaning , meals which can take some of the burden off you.- It has nothing to do with age but disability.
Also there are care giver support groups. Stress from care giving is a real thing. You do need a break cause you dont want to get burned out and get sick yourself. We are here for you.
Hugs
Angela

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Sound like the possibility that your mom’s MEDS are messing her up? Get a 2nd Dr. opinion??

I will pray for both of you! Lisa

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