Literally just need to get these words out and I don’t have many other outlets. My mom had a ruptured aneurysm ~52 days ago. She’s in a different state and due to COVID restrictions in place at the hospital I can’t visit. Information is scarce at best due to my father being simultaneously hospitalized and now my only sibling who lives in the same state at my parents having COVID. Some days seem hopeful, some days are the darkest I’ve known. I don’t understand what’s happening despite understanding what happening, if that makes sense. I’ve seen my mother twice via FaceTime and she shows no recognition. She’s awake(ish) for a few minutes on a good day and I just want to know how to feel. Is she going to come out of this? Is she going to know who I am? I don’t expect an answer to any of these because I know no one knows but I hate this. I hate that I don’t sleep. I hate that this consumes me. I hate that my mom is lost.
Welcome to our support group Smvaughn. While we are definitely glad you found us, it saddens us that you had to.
Every family member that comes our way shares the same angst as you are facing now. It’s the unknown that we cannot control that makes it so difficult, I think. Everyone one of us understands the conflict between mentally knowing and the inability to emotionally comprehend what has happened and what we can do to join the two. It’s the old acceptance/denial thing creeping out. We can only accept what we can, when we are able. Our brain doesn’t usually allow us to do more.
I can definitely relate to living in a different state when family members fall ill. My parents settled on the West Coast when I was very young. I ended up living on the East Coast. Dad had an ischemic stroke and my eldest brother called to tell me. After the call ended, I didn’t know what I was supposed to do or expected to do being a couple thousand miles away. I did two things. I believe in a Higher Power and so turned to that belief. The other thing I did was talk to a friend who happened to be a therapist. I felt relief with these two in my corner. It came down to what I was able to do which was call weekly. This was in the days when a long distance call was pretty pricey, no cell phones with unlimited anything back then. I had to accept that there are things that come into my life that are way out of my control. I also believe in the power of positive thinking so put my energy into it. Dad had many strokes afterwards, along with some other health issues, but he lived until he was 84.
I would really encourage you to try to take care of yourself. Perhaps talking to a therapist, or try melatonin to sleep. Maybe some herbal tea before going to bed. Reduce caffeine…all the things the different fields say to try. If you can get enough sleep on a consistent basis, it may help more than you realize.
While COVID-19 certainly has thrown a wrench into the works, you can still talk to your sibling I hope. Also are you able to reach out to your Dad? What you are going through right now is a tremendous amount for anyone, we are here for you.
All the best,
I just had surgery November 11 2020 I feel awkward and overwhelmed and the meds make me feel different . I asked every question I could think of and I explained to Drs if they tell me something in a terminology I am not use to I ask please explain this another way. Nobody knows a lot and then again they might I will keep hoping for you if that’s okay. . This is new to me too NettieJ
Thanks for the kind words. I do get to talk to my dad but he is overwhelmed and spends every available moment at my mom’s side. He takes notes and shares them via a shared doc but his focus is on my mom so it’s difficult to pin him down for long. He is the only one allowed to receive any information directly so everything is diluted from passing through so many individuals. I have a small advantage deciding medical terminology because of my work (not a doctor, health care adjacent/regulatory) but his version of everything is very hopeful and through the lens of a husband who has been by the same woman’s side for 50 years. Not that I don’t appreciate his optimism but after weeks of hearing him say that she was waking up every day I learned that this was, in fact, a simple opening of her eyes for a few seconds. It’s just hard to know what is reality v wishful thinking v misunderstanding v sugar coating.
Thank you. I wonder if your Dad is trying to protect not only himself, but you and your sibling as well. 50 years is a long time and a lifetime of ups and downs that your parents have been able to work through. We are in a rare group that our parents didn’t divorce.
Your Dad could sign a release for the RNs or the hospital Social Worker to speak with you and your sibling. I’m thinking the doctor may not have time, if they do that would be nice. If your parents have assigned someone besides each other to be their Medical Power of Attorney, that person should also be able to speak to the medical team.
I hope other members have some suggestions that can help you. Give them some time.
All the best,
From an aneurysm survivor, I just wanted to let you know that I’m thinking of and praying for you and your parents during this.
This weekend my aunt (my mother’s sister) passed away and I honestly don’t know how I’m still managing to move forward. My whole body is on autopilot. Tomorrow is shunt surgery and the hope that my mom wakes up again and with that hope the knowledge that she will wake up in a world without her sister. I know I can’t worry about future scenarios but this one hurts too much.
It is difficult for us when someone we care for deeply has passed on. I am sorry for your loss and having to let your mother know. My Dad and my Uncle had a bet which was very important to them, when Dad passed away first, he lost the bet. I was charged with giving the $5 to my Uncle. Uncle Ken had Alzheimer’s and wasn’t remembering things so well, such is the course of the disease. His oldest son didn’t want me to give his dad the money, but I had promised Dad on his death bed. Uncle Ken was confused during Dad’s service. But when I ha died him the money, he started crying and knew what it was for. Clarity came to him for the majority of the rest of the day. We were able to celebrate Dad’s life with Uncle Ken leading the way! It was a good day.
I sincerely hope your mother’s procedure goes well for not only her, but you as well. I will continue to keep you and yours in my thoughts.
When you get a chance, please let us know how things are going for you and your family, smvaughn.
You’re in our thoughts.
The surgery was cancelled due to infection so we are back to square one. Since this week was a holiday I’m not sure when it will rescheduled but my hope is that she will be moved by Christmas. I couldn’t bring myself to do anything for Thanksgiving.
Don’t shut down for the holidays. It’s the best of times to keep our loved ones close in our thoughts. Yes, it can be very difficult, but it’s worth the effort. What would your mom think or do for any holiday? My Mom loved to cook and was a very good cook. She had a rule that everything she cooked had to be tried, if even a tablespoon of the dish. She called it a “thank you portion”. The first time BH met my parents, Mom made this awful cottage cheese salad. I think she was the only one who liked it. She made a huge bowl of the nasty stuff as there were over 2 dozen people coming to celebrate their 45th anniversary. Per the rule, we all had our tablespoon helping. It didn’t make a dent. The next day and for several days, BH kept taking a thank you portion. Finally I asked BH if it was good, BH couldn’t stand the stuff! I asked why are you still eating it? I’d forgotten to tell BH you only had to take one thank you portion ROFLOL
My guess is they won’t do any procedure until your mom is over the infection as they wouldn’t want to out her in a higher risk category than she is already in.
Hang in there!
Apparently the whole world can change in less than a week. I took my sad cap off and made an effort to bring a bit of joy back into our home. I took to kids out to cut down a Christmas tree and we are doing our best to embrace the holidays. My moms birthday was Sunday so I baked her favorite cake and that’s what we had for breakfast. She had surgery yesterday morning which I guess involved literal magic because this afternoon my dad FaceTime’d me and for the first time in months when I told my mom that I loved her she responded. I don’t know how to explain what it was like to see her awake, to see her look at me and know who I was and to hear her say those words to me. I know there is still a long road ahead but I feel like at least there is a road at all.
Thank goodness your mom is back on the recovery road! I’m doing a happy dance for you!
All the best,
I’m so sorry you’re going through this. I was and am currently in a very similar situation. My mom suffered 2 burst aneurysm 3 months ago. Doctors told me that if my mom wakes up she would be permanently disabled and not do much. She’s currently in rehab, she’s talking, and she’s staring to gain strength on 1 of her body, recognizes me and everyone in the family. She’s not able to walk or sit on her own yet, we’re still waiting for her cranioplasty to be scheduled and because of COVID. Everything has been delayed. What I have done to cope has been sleep, prayers and always trying to do 1 thing a week for myself. Make sure you’re taking care of yourself, that’s very important. Prayer has been so wonderful, it reminds me every day to thank god for giving me 1 more day with my mom and i keep praying that god provides me more days.
Overall my best advice would be to keep hope, stay positive and take care of yourself.