When I used to do home palliative care visits (read Post 1: What Exactly Does a Palliative Care Specialist Do?), I would often see patients soon after their return from a hospitalization or rehab stay. Sometimes family members would express their worries about a loved one's alertness, thinking, or behavior.
"She stares off into space a lot. Is this normal after hospitalization?"
"He's getting me confused with my brother. He wasn't like this before he went to the hospital."
"Since coming home from rehab, she's been seeing people that aren't there."
"This isn't him. Normally, he would read the paper, but since coming home, he hasn't wanted to read the paper. It's like he can't focus."
We feel concern when we see our loved one physically weaker or thinner than before; often, this is tempered with hope, determination, and an action plan to help our loved one become stronger. "We work on physical therapy exercises every day, and he can sit up on his own now."
However, changes in the thinking, memory, alertness, behavior, and emotional state of our loved one can be especially alarming because it may seem that our loved one has fundamentally changed in a way for which there may not be a concrete treatment plan. "We were told he'll likely improve as his body recovers from the stress of the ICU stay, but we don't know how much he'll improve" or "The doctor said the hallucinations are from delirium or from dementia. What does that mean?"
Ultimately, the question for which family members want either reassurance or concrete answers that enable them to prepare ahead is "Will my loved one be more like him/herself again?" The following are questions I would consider in my attempts to give family members as useful a response as I could:
1. How was your loved one's thinking, memory, behavior, and emotional state before the recent hospitalization and/or rehab stay?
If you had already noticed changes in your loved one for some months prior to the recent hospitalization, it is possible that your loved one has an underlying medical issue - such as ministrokes or strokes, partial seizures, early dementia, depression, side effect or interactions of a long term medication(s). "I noticed he was leaving Post-It messages all over his house with labels on them, like 'salt' or 'this way to bathroom,' and I thought he was just being eccentric or funny, like goofy funny. Thinking back, maybe he was leaving messages for himself because he was having trouble remembering."
This underlying medical issue could have been exacerbated by the recent acute illness/ trauma to the body or overshadowed by an overlying delirium during hospitalization.
Delirium is a mental state of confusion or disorientation that is of sudden onset within hours to days. People who are delirious can be restless and agitated or they can be somnolent. They have difficulty with attention and focus, and they may hallucinate. This mental state could fluctuate each day, so a person could be lucid for several hours and then delirious again.
There is usually a reversible cause or causes to delirium, such as side effect or interactions of new medication(s), withdrawal symptoms from suddenly stopping a medication that should instead be gradually tapered, a new infection, dehydration with or without severe electrolyte abnormalities, severe uncontrolled symptoms, or even simply a big change in the environment such as the state of being in an unfamiliar hospital with unfamiliar sounds, sights, and routine. "She was perfectly fine, just like you and me, until two days into the hospital stay. I don't know what they gave her, but she was suddenly out of it! She's been like that since, perhaps not as bad now but still bad."
If you had noticed changes in your loved one beginning weeks to months earlier, consider discussing with your loved one's primary care physician an evaluation for another medical reason for your loved one's altered state. If the doctor thought your loved one were experiencing delirium, they may discuss holding off on certain evaluations until after delirium has cleared. "He was already getting more and more confused - oh, for about six months - but the hospitalization really made his disorientation worse. I'm going to talk to his doctor about getting evaluated, maybe by a neurologist, in case he's got something else going on than just delirium."
(Note that someone with dementia is both more prone to becoming suddenly, temporarily more confused with delirium - which should clear once the underlying cause(s) are treated and thus result in their going back to their previous baseline - AND they are also more likely to end up at a "new normal" or "new baseline" of worsened dementia after a big stressor such as hospitalization or severe delirium with infection. Unfortunately, sometimes the medical plan may be as abstract as "time will tell" in order to determine if a loved one will improve or settle into a "new baseline.")
If changes in your loved one's thinking, attention, and behavior started suddenly right before or during hospitalization and/or rehab stay, it is more likely that your loved one's altered state is primarily due to delirium. The hope is that delirium would clear quickly as the underlying cause(s) are treated or remedied, however sometimes delirium does take weeks to resolve. "It was so bad when he first came home. He couldn't project his voice, he stared off into space, he saw things that weren't there, and he hardly spoke. But he's gotten much better in the past month since he's come home. He's 90% back."
2. Did the doctors say your loved one experienced illness or injury involving the brain, such as stroke, seizure, or a period of low oxygen to the brain, while in the hospital?
Sometimes a new change in a loved one's alertness, memory, attention, and behavior is actually due to a medical diagnosis related to the brain. Depending on the diagnosis itself and the severity of the diagnosis, these changes in your loved one may be mild or significant, with either low or high chance of improvement.
This is when having meaningful conversations with your loved one's hospitalist (while in the hospital), primary care physician, or specialist who has been the most involved in managing your loved one's symptoms may be helpful in getting a sense of what to expect in the coming weeks to months. "Apparently, all those times he was a little out of it, he was having seizures! The neurologist said he should be okay once the seizure medications calm down the seizures."
3. What kinds of medications were discontinued during hospitalization and what kinds of medications were added during hospitalization and/or rehab stay?
Changes in medications can certainly contribute to a loved one behaving differently from previously.
Sometimes when a patient is admitted to the hospital with decreased alertness from delirium or other diagnosis, medications with potentially sedating side effects, such as opioid pain medications (many people do not realize this includes tramadol or tylenol #3), benzodiazepines ("benzos" such as alprazolam or lorazepam), or muscle relaxants, may be discontinued in an attempt to improve alertness.
Hospitalists, who are the primary doctors who take care of patients in the hospital, may either forget to add back the long term home medication when discharging a patient from the hospital or they may intentionally leave it off, stating the risk of potential sedation outweighs potential benefits of that medication.
However, if a loved one has been taking a certain medication for a long time, their body may experience withdrawal symptoms - such as inability to sleep, irritability, inability to concentrate, severe anxiety or panic attacks, tremors, sweating, nausea or weight loss, and palpitations - if this medication is not resumed on discharge from the hospital (or even during the hospitalization!).
If the intention were to deliberately stop this medication long term, the safer plan for the body may be to resume the long term medication but at a lower dose on discharge and continue working with your loved one's primary care physician to taper off the medication over time. "She's taken xanax every night for eleven years. I can't believe they just stopped it!"
On the other hand, sometimes medications - such as an antidepressant, benzo, or antipsychotic - are added during hospitalization or rehab stay in an attempt to improve symptoms of depression, significant anxiety, or severe agitation. A patient may be discharged home with one of these new medications and the medication may continue to help at home.
Sometimes family members wonder if their loved one's slowness, decreased alertness, or "spaced out" behavior is due to the new medication. If this is the case, consider communicating your concerns with your loved one's primary care physician and potentially deciding on a trial to wean off the medication. "I'm thinking of stopping that quetiapine they gave him at the hospital. I think that's what's keeping him like a zombie. I'll call his doctor and ask her what she thinks."
4. Did your loved one initially improve after hospitalization and is now doing worse?
If a loved one does initially improve after returning home from the hospital or rehab and then they suddenly seem to be doing worse again, for example with more confusion, more somnolence, or more hallucinations, consider a new stressor occurring in the body. "He was getting better! He was doing so well, working with PT and eating. Then over the weekend, he started getting sleepier, and now he hardly looks at me when I tell him it's time to eat. This is not him!"
A loved one suddenly doing worse is concerning for a new illness or stressor to the body, and this may be the time for them to be urgently evaluated, even if they had just returned from the hospital. "She gets frequent UTIs, and I know she just completed treatment, but this is how she acts every time she gets an infection."
One last thing I want to mention about delirium in the hospital - often patients in the hospital or rehab institutions are prescribed low doses of antipsychotics (such as olanzapine, quetiapine, risperidone, or ziprasidone) in an attempt to calm severe physical or verbal agitation due to delirium. Sometimes I see these patients weeks or even months later for an initial or follow up palliative care visit. A family member may happily exclaim, "He's almost back to his normal self!" and when I review their loved one's medication list, I see that they are still taking the antipsychotic they were started on while delirious and agitated during an acute illness. I usually then discuss weaning off the antipsychotic. If this is the case for your loved one, consider discussing whether your loved one is still benefiting from this medication with your loved one's primary care physician or neurologist.
I hope the above information give you some insights into what to consider if your loved one were to return home from the hospital confused (and without much mention about this from the discharging doctors). This scenario is, unfortunately, common.