My mom suffered an ischemic stroke at the beginning of January after having heart bypass surgery.
She was fortunate enough to be able to go to acute rehab and handled it well (psychologically) for 3 weeks. They allowed 1 visitor per day and I was there almost every day for that period. Unfortunately, she did not make much progress.
She currently can drink normal liquids and eat most types of food. She can speak clearly. However, she has many serious limitations. Her left leg and arm are completely useless and she is bedridden. Transfers, posture changing, showers, etc. are all pretty much max assist or completely dependent. She suffers from extreme fatigue. She is incontinent and had a catheter, but I think she's just using diapers now. She lost the ability to tell time and will call people at 3 a.m. thinking it is dinner time. She has severe left side neglect, and will be unable to find objects right in front of her, even though she can read text with effort. She has some cognitive impairment, mostly related to problem solving/executive function and short term memory. Unrelated to the stroke, she has almost daily moderate medical issues: fluid buildup around the lungs, UTI, saline IV for fluids, about 20 different types of medications. She also has severe anxiety brought on by the stroke (no source to point to and it's been consistent since mid January).
As a family, we agreed that the next best step was to put her in a Skilled Nursing Facility. She was completely on board up until the day she was transferred. Two immediate (nuclear) family members are physicians and said we had very little other choice. After 6 hours in the SNF, she called me at close to midnight BEGGING me to come home. I've never heard her in distress like this and as the child (35) in town, I feel responsible for taking care of her. I'm freaking out a little bit as a result. She continued to plead with me all of yesterday and told the staff "she was leaving." The SNF does not allow any visitation due to COVID which makes this even more complicated.
Very recently (past couple of days) she started to develop hallucinations, including thinking she was 1000 miles away near her childhood home and could hear the ocean, and saying that the social worker told her she was going to return to the acute rehab hospital (which she most certainly didn't). She was up until this week a sweet, docile, kind woman, and has instantly become terror-stricken, agitated, and combative. She's horribly confused and is insisting to me that she is trapped in this facility even though I say that's not the case, and I want her to calm down so she can propose a solution. Most of her complaints are inattentiveness in the facility and the fact that she doesn't like the environment (not to mention the panic she's in just from the anxiety).
I'm an able-bodied man in the same city as her. Our family has money to cover any option, and I have no absolute responsibilities of my own (I was job hunting when this happened, done with school, no kids, etc.). I desperately want to do anything I can to help her but we decided to put her in the SNF for a chance at rehab, safety from COVID (family says bringing home help in might be risky), and because of how much attention she needs for essentially every function.
I know this is a lot of text but I would appreciate any perspectives you have based on what I've written here. I feel like the stress is going to kill my mom, or she's going to be a sedated zombie by the time the week is through. This decision seems like I'm condemning my mom to a terrible fate, and I don't want her life to be like this. I'm just trying to take care of her with the recommendations of my family and what I consider common sense. Please let me know if you've seen a similar situation, how it can be navigated, or if you think she really should be brought home.
When you say mom is in a SNF, is she admitted there as a rehab patient or for permanent placement?
Has she been seen by a geriatric psychiatrist?
My mom had an ischemic stroke in 2013. Went to acute rehab, did great with PT. Speech therapy, the works. Transferred her to a highly rated subacute rehab with an adjacent Assisted Living facility (because we were thinking ahead). We thought ourselves so clever.
I was sitting with mom one afternoon while the nurse gave her her pills. When mom took the last one, she looked me and said, "you see, I have to manage my own meds here". I said "what?". She pointed to her water pitcher and gave me a "significant" look. The next day, she told my brother that the aides were having sex in her bathroom. The next night, they were carting dead bodies out in the middle of the night.
We asked for a psych consult (at the recommendation of the nurses) and were told mom had developed vascular dementia as a result of the stroke. Her anxiety had previously been managed by a Geri Psych in her Independent Living facility with a very low dose of klonapin, but in the subacute rehab, the doc added an antidepressant. Later, another one was added. A cocktail of Lexapro, Remeron and klonopin kept mom calm, happy and not at all sedated.
Sometimes antipsychotics are used in this sort of situation. Psychopharmacology is an art, not a science, so be prepared for some trial and error.
Get her seen by a psychiatrist as soon as possible. And know that UTIs are also known to cause psychiatric symptoms in elders.
And to answer your last question, bringing her home is the least good option. It sounds like she is, at this time, a 2 person assist, which is untenable. What led to my mom's placement in the IL was her unremitting anxiety, which even 24/7 aides didn't help. Only meds helped.
When she was in acute rehab, she saw a clinical psychologist several times who, along with the physicians, managed to keep her calm and well enough to participate in the therapy sessions. I am going to make managing her mental issues a top priority and try to get a psychiatrist to see her ASAP - since this all happened suddenly and near a weekend, it's been slow to make appointments and get her any substantial help. It's understandable but having a loved one losing their mind (perhaps both figuratively and literally) is a constant stressor.
Your story about how your mom was perceiving the care and imagining things is similar to what my mom is doing right now. I just talked to her and she said "they're refusing to let me use the bathroom" - but the aide happened to be in the room, and I heard her chime in over the phone, "she's on a bedpan right now." I have an initial reluctance to trust strangers over my own mother, but that's quickly changing.
After the diagnosis of vascular dementia (which I suspect my mom had already started due to years of mismanaged diabetes), what happened to your mom after subacute rehab? I don't mean to pry, but I am new to all this and your perspective is helpful and comforting that my situation isn't unique. My understanding is that dementia is not a condition that improves, but is only managed, so I am curious to know what sort of living situation your mom required afterwards. Thank you again.