Veryvee is our newest member here. Suddenly she finds herself trying to support her elderly parents after her mother’s brain aneurysm. The trouble is, her parents live 7,000 miles away and in this era of covid, @veryvee can’t travel.
Many of you have provided support family members by Facetime, and arranged for long distance support.
Can you reach out to Veryvee to help her do the best thing for her parents, when she is so, so far away? Reply below, and she will get your message.
If you are a member here, you can read the whole story by clicking on her tag > @veryvee .
Seenie from ModSupport
Copy to @trust_level_0
I’d appreciate any advice of things I can arrange to help my parents while I am not there. Anything will be appreciated!
Welcome to our support group @veryvee, we are glad you found us. I well remember having to be the caretaker for my aging parents and it’s exhausting work. I was privileged to do it as they had moved close to us instead of us having to quit our jobs and move to them which is what they wanted. For extended family, we use FaceTime quite a bit now as most of my family is on the West Coast and we live on the East Coast, so three hour time difference. It makes it more difficult as we are going to bed and they’ve got things settled for the day. We have worked out to FaceTime on Sundays. There is also a good amount of texting through the week with lots of delays on the West Coast relatives as they still work. BH’s side lives further South and they talk every weekend and there is a lot of texting with them. I have a couple of cousins that we text once a week usually. I also have two friends, both on the West Coast, one is older than I and we email every Sunday, if we don’t hear from each other by Monday, we will send another to make sure we are ok. The other prefers texting.
So a couple of ideas, but your parents would require a smart phone or computer.or a tablet that’s hooked up to the internet. Do your parents have any of these devices?
Another thing is to see if you can get your dad to provide a release for you to speak to the hospital staff where your mother is and your father’s doctors. Perhaps by speaking with them, you can see if there is a service your parents are able to obtain. Our law enforce the agency will do phone well checks for the elderly. They set a designated time for the call and if the elderly person doesn’t pick up, a squad car is sent out. I think our little town has gone to automated calls.
I also am wondering if your father has a carer in the home, perhaps his doctor can get someone to come by and do some light housework, etc.
I hope many of our members will respond. I can only imagine how hard this must be for you to have you mum in hospital and dad with early dementia, it must be hand wringing. Remember to breathe.
All the best
Are your parents in an assistanted living situation? It might be time to think about that opportunity, if it is available and financially viable. When my mother fell I’ll, it helped me knowing she had helpers available and people there to make sure both Mom and Dad had at least 2meals a day.
It’s a slow process but she should get better with time I suffered a ruptured brain aneurysm in 2008 and it took some time but I am blessed to say after 4 or 5 brain surgeries including a craniotomy also n 2008 I am still alive and doing ok hope that helps in some way please reach out if there’s anything I can do.
Hi! Its so good to hear you not ony survived but are functioning well. Its been 13 days now. Mum still hasn’t woken. She is no longer on sedation. Do you mind if I ask how long you were in hospital for after the incident?
@veryvee if you put an @ sign and then the person you’re replying to they will get a heads up. Another thing you can do is hit the reply to the person you’re responding to and it will link to their response. I believe you are asking @Mlgunn the question on how long the hospital stay was.
I woke up the day I had surgery which amazed the doctors and I was still in for 26 days. I had vasospasms for 21 days. The vasospasms stop the flow of blood and can cause ischemic strokes. I was sent to the step down unit once and went back into NSICU a few hours later. Another few days and back to the step down unit for a couple of nights and then home. I had to find my own places to get the help I needed ie PT and Speech Therapy as my neurosurgeon is a bit over an hour away and my PCP at that time didn’t know what to do for me, He wanted me to get a new neurosurgeon which made absolutely no sense to me. I just called the Neurosurgeon or saw her and she wrote a prescription for the therapy I needed. I have kept my neurosurgeon and found a new PCP who is much more helpful with what I need and understands my extreme hesitancy (won’t touch them if I can) in addictive drugs.
Hope @Mlgunn responds
My hospital stay after the rupture was around 6 weeks then I was told I had three more aneurysms and needed a craniotomy to repair them so I had a craniotomy also in May of 2008 and the rupture happened on January 25th 2008. Hope this helps
Not at all I was in hospital for six weeks
Welcome here, you will find support and helpful info. Best wishes, it’s rough but remember to take care of your self to be able to care for others.
My BA was 9 years ago, I had no family, but I was lucky good friends and pros helped. Rehab was complicated by infection and preexisting illnesses, so hospital and post nursing stay was nearly a year. I do not remember any of that, my neurosurgeon told me that was a blessing.
Within two years I was had better memory, was living independently, driving and planning my daily routines. I could not return to work but was close to retirement so just scooted out early. Some short term memory glitches, and some slips with place and face recognition occurs when I’m stressed and tired, but improvement continues each year. I’m back to reading, studying and following my interests, though I cannot do hobbies requiring close detailed vision and manipulation, but that may not be injury but result of aging.
I hope for your loved ones that their rehab and healing goes well, it may be 3steps forward and then one back at first. Environments that are positive, working to reduce anxiety and worries helps tremendously as they arise.
Dear @veryvee I had a ruptured brain aneurysm in June 2018. One thing that has truly helped during my recovery is just knowing that I’m not alone; even if that meant speaking to someone on the phone or by video.
Hearing from other survivors about their recovery and participating in support groups has helped. Please let me know if there’s anything I can do.
@veryvee Im so sorry you and your family are going through this. My mom also had a brain aneurysm. My mom woke up from her coma 3 weeks after her anuerysym. Once her eyes open, she was non responsive, eyes open but no response, she was like this for 2 months! It’s been a year now, And my mom is scheduled to have her cranioplasty next week, she’s talking now, not as much but she’s able to communicate. So far, what I’ve learned is that everyone is different, there’s no set time when a patient will wake up but stay hopeful and keep faith. something my moms doctors first told me “she will heal on her own time”. I wish I could give you definitive answer, but something that helps is try and talk to your mom, something I used to do in ICU I would play music for my mom, read to her, tell her about my day, and told many of the jokes she likes. The first time my mom responded to me, she had a blank stare and I asked her can you understand ( after I talked for hours) and she nodded.This was 2 months later. with that being said Im wishing you and your family the best of luck, and I’m sending many prayers your way.
Thank you Everyone!
Do you mind if I ask what your ages are - or rather did any of you have your BA after 70? Mum is 72
Also - do we have anyone that caught COVID during recovery? Mum had a tracheostomy done yesterday. I am so extremely worried about her!
@veryvee for those of us that have ruptured, I don’t think we mind telling people our age, it’s an accomplishment for many of us. I was a bit younger than your mum having ruptured at 53 and recently turned 61!
I certainly can understand your worries with your mum in hospital having procedures done and all this during a pandemic. I know you aren’t able to travel right now, but is your Dad allowed to visit and does he? The last time I went to hospital was for my last aneurysm procedure and they were very good about taking temps, asking the questions about COVID exposure, etc. I also know oiur niece who works in a rehab hospital in a different state, had to put a fresh hospital gown on each time she went into a patient’s room. So here, the staff is doing all they can to minimize possible exposure to patients.
I’ll continue to keep you and yours in my thoughts,
@Moltroub thank you. Talking with someone who has experienced this and survived gives me so much hope. My dad is unwell too so the risk is just too big especially given mum has tested positive. Ive managed to get some voice notes to my mum and a video call. I try frequently to send voice notes as she isn’t getting any visitors. Its breaking my heart!
I’m sorry that you’re having to deal with this. I would encourage you and your dad to have as much contact as you can with your mom, and to keep in close contact with the hospital staff. Know that she’s in the best hands possible. My heart goes out to you, that you’re dealing with this during the pandemic. It just makes everything so much tougher.
Sharon from ModSupport
@veryvee, We all have our own stories here, some are funny, some are awe inspiring and some are heart wrenching. It’s just life on the aneurysm road. And like all things in life, no two people have the same exact story. Yours is in my heart wrenching category. I wish I could do more.
As I always hold on to Hope, I’m hoping your Mum’s positive test just means she is developing natural antibodies so it won’t go any farther than a positive test and she will recover from her rupture.
Continue sending your mom audio as the RNs won’t mind a bit. They rather like it or so my family in the healthcare fields have told me. One niece shared that it’s like being a fly on the wall and eavesdropping. (I think she likes it very much) It gives them a bit of a break from all their work and to hear about life outside the hospital is what my cousin shared. Due to the shortages in staffing they are pulling very long hours and not a lot of time with family.
Has your Dad signed something to allow you to speak with the staff or do you not need it for her? I’m very ignorant about other countries and their ability to share a patients medical information. Here in the States we have HIPPA and it pretty much says the medical staff are not allowed to divulge patient information except with certain folks.
Continue to hold Hope,
@Moltroub I am so lucky that I’ve not had trouble. They provide me with info and her physician sends me short reports. Although the neurosurgeon has responded with ‘she had an ruprured aneurysm and is very ill’ which really annoyed me.
Mum has now had a tracheostomy fitted and herlungs are improving and her secondary infection is subsiding. She emains unresponsive but has vomitted and chews on the suction tube. Its Day 17 since the rupture.
Sadly no-one is visiting mum atm but I have a nurse that plays voice notes for mum. She has sent me a photo of mum too. Its not easy but its helped me in a strange way.
I’m so sorry that you are dealing with this at such a distance. It’s good to hear that you have an empathetic nurse who provides your mother with a connection. Although she may not be responsive right now, I think most would agree that voice contact with familiar and loved members of the family is helpful. You are doing your best, which is all that counts.
How is your dad doing? How much time is he spending at the hospital, and is he getting the support he needs?
Veryvee, we’re glad that you found us. Nobody’s brain aneurysm journey is the same as what you are going through, and yet there is comfort in knowing that there are people here who really “get” what’s happening. Lean on us, that’s what we are here for. It doesn’t matter whether you are here for advice, or here to rant and “unload” or here to simply tell the story to some people that understand and care. It all helps, like the picture of your mum, which, as hard as it is to look at, makes the situation real for you. And yes, that helps too, even when it is difficult.
Hang in there, and hang out with us.
Seenie from ModSupport
@veryvee the RN gets many kudos! I really believe I wouldn’t be here replying to you or any other member without the wonderful RNs I had. On procedure #3, I got to see the new Neuro ICU and I saw Keena, the lovely RN who diligently adjusted my Triple H meds to keep me from having more brain damage. When I saw her I hollered out who she was and she saved my life. You would not believe the change in the RN’s attitude who was assigned to me. It put a bounce in her step.
We often forget that though the MD is the one doing all the ordering, it’s the RNs who have to carry out those orders and constantly report day in and day out. They are the ones who really know the patient. Where I was, there were Residents for both Critical Care and Neurosurgery every day who came in at different times doing their rounds. Most of them I liked very much, some PAs, not so much, but the RNs that took care of me hour after hour were the best of the best. I can name the ones that I felt very close to, who kept encouraging my healing, who washed my hair after a grueling central line and A line placement.
There was even a Med Student who checked in on me regularly and a couple of RN students, one who stayed by me when I was having a tough time of it and needed more imaging and one beautiful young lady who made the best cup of tea from the microwave! It’s all the little acts of kindness I still remember and focus on. And for those that took such wonderful care of me, well I ask God each and every day to watch over them and help them through their day. After so many years, I imagine God saying “yep, I got that, anything else? Maybe something different? And because I talk too much, I always say oh yeah, did I mention….or I’ll say dang it all God, I forgot to ask ….
As for the Neurosurgeon, I think sometimes they’re hesitant to say much because everything is what I refer to as “ifs and buts”. There are so many variables that can be put in the patient’s equation that I’m not sure there’s a lot they feel comfortable in saying. If they say one thing and something else happens, they are the ones that get blamed. It’s not really fair to them, or any doctor, but it is what it is. They also don’t know how much or how little of the brain and body the patient or family knows.
If there’s something you need answered, write the questions down and send them to the doctor. The doctor will either answer them or have one of their people. Don’t let questions go unanswered it causes stress for you.
All the best,