Really needing help navigating post stroke care. Questions about aphasia, post stroke dementia, rehabilitation - WA
My 73 year old dad had a stroke about 6.5 weeks ago. Covid protocols at the hospital made it extremely hard to communicate with the doctor, and still to this day we don't fully understand what happened or his prognosis.
He left the hospital he was at, and went to inpatient stroke rehab at Providence Hospital. We realize he should have gone to one that had more neurological services and rehab, but the hospital social worker was virtually never available, had no voicemail, and said this is what we could do. Looking back we realize there wasn't really anyone in the hospital advocating for him at all, and we were not allowed in the hospital, and getting anyone to call us back took almost an act of God.
Providence Hospital wasn't much better. My dad had several insurances along with medicare, but the social worker said medicare gave him a checkout date, and that was it. I asked if that could be appealed if he had more work to do or progress to make, but she said no. I have learned now we *could* have appealed it, but we think they just wanted to move him along.
At Providence, we *still* learned nothing of his prognosis, what the future could hold, recovery options afterwards. The social worker said he had vascular dementia (casually in conversation) but we had never been told that, and then the social worker said we should find an adult family home for after rehab. Tracking the doctor down wasn't much help. Dr said that his file said he had vascular dementia, but who gave him that diagnosis?! The family was never told, as the patient he couldn't understand or advocate for himself. The doctor told us we would have to go to Harbourview memory care after his discharge date to figure out what was going on.
We went in for a 'care seminar' towards the end of rehab and the speech pathologist gave us a handout on dementia, talked about what he could swallow, and then the PT showed us an exercise he was working on, and that was it.
Discharge was rough - we took him to the adult family home, the social worker hadn't gotten his medication updated and taken care of so he had no meds until very late that night, didn't include his PULST form, and couldn't be gotten ahold of. The AFM said they couldn't take him without the form, and we got something makeshift faxed, but it was traumatizing, because along the headache of filling in the gaps left from the SW, we are dealing with the grief of this once active trial attorney sitting in wheelchair barely talking who is my dad.
The AFH didn't work out, after a week the police were called because of his delusions, trouble sleeping, and their inability to manage him. He is now in the hospital and we were told to look for memory care.
There are so many holes I don't understand. I know dementia shouldn't be diagnosed until 6 months after a stroke, but they are just writing my dad off. He is making progress physically and talking more, but has short term memory problems, some confusion, and mixes up words. From my understanding, these things can be common after a stroke and can improve with time, even if it takes a long time.
I'm not willing to write my dad off, and I see so much hope and potential. He is only 73, looks young, is in good health physically apart from the stroke.
Is there more rehabilitation he can or should be doing? Does anyone have experiences navigating the hospitals during this time? I am persistent, and call, alot, ask questions, do research, but I must not be asking the right people the right questions.
Its only been 6.5 weeks, so I am not willing to simply let him sit in memory care until he passes away if there is more to be done to help him have a better quality of life.