Hello all! Here is our story… I am the secondary caregiver to my mother (I live 2 hours away and come to visit and help almost weekly) my father (68) is the primary caregiver and does everything. My mother before all of this was loud, sassy, talkative, and enjoyed going to any and all sporting events, traveling to see family members, taking vacations to the beach. She is a retired grade school teacher’s aide but still substituted weekly. She was on high BP medication for probably 15+ years, but it was managed and since this incident we discovered her sister has an unruptured aneurysm.
My mother (67) had an aneurysm rupture on 12/6. We had no idea she had an aneurysm and never experienced any symptoms till the time of rupture. She was getting ready to leave the house and experienced extreme nausea, vomiting, dizziness, and extreme pain in the lower back of her head. Luckily, my father was home and was with her when she suffered her SAH and was able to call 911 quickly. We had no idea what was happening. She was unconscious and was transported to the ER by our local paramedics.
While in the ER they immediately put her on a ventilator and determined the need for a drainage tube in her skull. She was still unconscious, stable but critical. We still had no idea what was happening or had happened; they were pretty positive about a ruptured aneurysm based on what we were able to explain to the doctors. Later that evening she was able to be transferred to the Neuro ICU.
The next day we spoke to so many doctors, nurses, specialists and surgeons it was all very overwhelming… We were informed that she was assessed of being at a 4 to 5 on the Hunt and Hess Scale when she was admitted. They were prepping to go in for an angiogram with the possibility of doing a coiling if found to be the best solution. The Neurosurgeon located the aneurysm and determined there was only 1 and that coiling was the best option. My mother spent about 3 weeks in the Neuro ICU, 13 days on a ventilator. It took her about 10 days to open her eyes for the first time.
Her only form of communication since opening her eyes were head nods or squeezing our fingers with yes/no questions. She did not know where she was, what year/month it was, who her family was (husband of almost 40 years and two children of 33 and 26 of age), or anything that was happening. She slept probably 22 hours a day during her entire time in the ICU. After her stay she was transferred to a different floor in the hospital for another several weeks and continued to sleep for around 20+ hours a day and wasn’t interactive with anyone. She unfortunately removed her feeding tube herself; she was unable to feed herself and we had to spoon feed her a honey thick diet during this time.
On 12/28 she was transferred to a transitional hospital that focuses on continued care and start therapy. She spoke very minimally, her memory was still very scrambled; had no idea where she was most of the time, the year, who was president, and still confused on who some people were. During her stay at this hospital we were introduced to Occupational, Speech and Physical therapy sessions. By the end of her stay here, she was released to come home on 1/19, she was able to stand up, (with assistance) walk with a walker (with assistance) and feed herself with limited assistance. Her speech and memory were also making small, daily improvements.
Since being home we still have all 3 therapy sessions multiple times a week and we have seen improvements in her overall strength, memory, and speech. Considering at the 24 hour mark of her being admitted into the hospital, we were told that she might never wake up again or would have to be in an assisted living type facility the rest of her life. So now, being 5 months since her rupture and she’s able to walk (with a cane), do limited activities in the kitchen and around the house, feed herself like normal, and having around 95% of her memory back, talk to her family and friends on the phone… I’d say we’re doing pretty well!
Overall, she’s not the same person she was. She still sleeps a lot during the day, has some difficulties sleeping at night. She’s not nearly as talkative and loud, her sense of humor peaks out quite frequently, but she’s not as sassy. Her hair has been falling out extremely rapidly; it’s still growing, but she’s shedding excessively. She doesn’t have an appetite like she once did, her portions are much smaller and doesn’t care as to what she eats when presented options. She’s lost probably 60lbs. We try and get her out of the house to go to lunches, grocery shopping, run errands, go to shopping. But sometimes she’s just completely uninterested in doing things, but she says she wants to get better so she can travel again, go to sporting events, drive, etc.
Her eye sight has drastically decreased, at first she was complaining of double vision (that seems to have gone away) but we have “blind spots”. We are unable to get into a Neuro Ophthalmology office in our area until January 2025, but have been placed on a waiting list for cancellations. On 5/2 she has a loop recorder implanted in her chest; while in the ICU they detected afib in her heart. My mother has no known heart issues, so this has also been stressful worrying about her heart health on top of everything else.
For all of those going through these as caregivers, it’s the hardest thing I’ve had to do, it’s stressful, frustrating, exhausting, and mostly confusing. Just be patient and read, brain injuries are complicated and take time. My father and I have been doing everything ourselves. So everything is a learning experience. We just don’t know what to expect next, what is normal or not, what we should or shouldn’t be doing!
