Losing Faith, Losing Myself
I (29) along with my mom (59) have been caring for my dad (64) for more than 2 years now. On Christmas of 2023, he had an ischemic stroke that turned hemorrhagic once the clot hit his brain, and he spent nearly 6 months afterward in the ICU, acute care, and subacute rehab before he finally came home. His condition is such that he can walk very short, flat distances with close supervision and help but is otherwise wheelchair bound. He is still on a foley catheter (gets changed monthly) due to neurological bladder control loss, and we take care of his other toileting with briefs and clean him up in bed as they did in hospital/clinical setting. He would let us know at least and was aware of his bowel movements either before or right after, but not enough time to get him to regularly use the toilet (the first floor bathroom also isn’t suited to accessibility for him). He needs help eating, he cannot talk (wants to, tries to, nothing coherent comes out), and sometimes gets very confused. He has had open heart surgery following CHF diagnosis a few years ago (stable/moderate for now) and has been a Type 2 diabetic for a couple decades, but it was very well managed and he was at a healthy weight and activity level prior to the stroke.
That was his new baseline condition from May ‘24 to Dec ‘25. I would give anything to go back to that. A catheter injury (due to an incompetent, arrogant home nurse) occurred in January which caused him to lose a lot of blood and landed him in the ER. Prior to this, we’d had to call for the ER few times last year due to catheter blockages, some seizure activity (now medicated), and less alarming events. After the weeklong stint in the ER and a month in rehab, he came home in Feb so different. It felt like a lot of the cognition he had for basic tasks and even recognizing my mom and I had gone out the window. He developed coprophagic tendencies out of nowhere and was far more irritable and easily frustrated. I wasn’t entirely sure he knew who I was every time I looked at him. The neurologist was very unconvinced that it was vascular dementia, but of course since he can’t talk or seemingly follow certain directions as part of his new baseline, they can’t officially diagnose it or rule it out. She advised us to let him get comfortable at home again and settle into routine, and it might go back to normal. It didn’t, and in early March he was back in the ER because of several (10+) bowel movements a day for several days and a surprise seizure forced us to tap out. My mom and I were past the point of burnout. They discharged him after a week of treating him for delirium and despite our protests that he was absolutely not back to his baseline. Since then, it’s a daily contest of the absolute insanity we can shoulder and not go crazy.
His current condition feels endless and the physical work, the mental load, and nonstop low grade anxiety feels infinite. An assisted living facility (even with my brother and I helping) is so far out of the question due to the level of care needed, and an in home nurse is not logistically practical due to his room being an open dining room we converted when all this happened. And also, a full time nurse is financially out of the question as well. He didn’t and doesn’t have any long term care insurance, so anything and everything would be out of pocket.
I’m not really sure what I’m looking for - commiseration, solutions, insight - but I will take anything because I feel alone and helpless and hopeless like I have never felt before in life.