How to best help my post-stroke grandma get the care she needs?
December 20, 2010 10:21 AM   Subscribe

My grandmother has had some extended aftereffects from her stroke appear out of nowhere and we're unsure how to evaluate her care and what we should know about helping her. More explanation and specific questions are inside.


Approximately two months ago my grandmother suffered two major strokes. The first knocked her out: she fell and broke her hip which landed her in the hospital. The second, two days after she arrived, rendered her left arm unusable and made some of her speech difficult - usual stroke symptoms.

For the first month she was in a medical hospital - regular doctor care and more medically-oriented nursing care. It was difficult but she was stable. I visited her for a week after she'd been there for two weeks and while she seemed a little confused, she knew who everyone was and why she was there and over the course of my visit seemed to get a lot better and at times even cheery. She didn't have the greatest grasp on what the plan was for her future care but then again none of us did since it seemed to change from day-to-day. Having gone from being a perfectly independent person to one who is bed and wheelchair bound she was depressed and they put her on anti-depressants.

Being a reasonably smallish town not close to any other big towns, the care where she lives (along with the rest of my family) is kind of iffy. Hard to get specialist vists, not really cutting edge. My family is in Canada where the care is, as we know, free and available but not always world class when you're out of the big cities. It was actually my brother - a former nurse - who pushed for them to evaluate her for a stroke in the first place the day after she arrived (before the 2nd big stroke) because he could just it on her face. I live in the US about a mile away from Stanford and joke that I could get an MRI at Trader Joe's but there's exactly one machine in her town serving 100k people (which probably double that in the region the hospital serves) if that gives you an idea of how accessible some of this kind of care and testing is. Moving her isn't an option.

Current Situation:

About 3 weeks ago she was transferred from that hospital into a rehabilitation facility - a hospital that specializes in long-term care, both rehab and hospice oriented (she's on the rehab side). Since then her mental state seemed to have deteriorated rapidly. For example, she knows there's a holiday but thinks it's Easter. You can tell her 100x it's Christmas, you can put a little tree in her room, and she still insists it's Easter. She calls my dad to come get her at the hairdresser. Even worse, she tries to call for her husband to do the same but he's been dead for 30 years. She had no recollection that I'd visited her a few weeks ago (heartbreaking!). She wonders if my husband is coming with me for the "Easter" visit (not married, never have been!). When she calls for a nurse and they don't come immediately she starts throwing things and banging on things - because she thinks they've left her there FOR HOURS instead of just 5 minutes. Maybe some days it's a bit better but overall it's getting much worse.

She's on medications to try to prevent another stroke - anti-clotting drugs, etc. And has a major blockage of her carotid artery but a neurosurgeon ruled out surgery to remove it saying she was unlikely to survive. Other than the stroke, the resulting broken hip and surgery to correct that and a long history of bad knees, she's otherwise been in very good health. She's 85.

My questions:

1. What sort of care or evaluation - and from whom - should we be pushing her to receive now? This change in her mental condition is alarming in its swiftness and no one, other than us, seems to care or even notice. While the nurses she has are nice, we'd all categorize them as "useless" in taking any real interest in fixing or stopping problems. My mother and her sisters have been asking for someone to look at her but they don't know who, exactly, it should be - a neurologist? A gerontologist (who put her on the depression meds in the first place)? A psychiatrist? Our speculation is that she's had additional strokes that just affect her cognition, specifically her temporal cognition but other than the initial CT scans and ultrasounds, she's never had any other medical tests around the strokes.

2. Is this just how it is? Our family's history around dying seems to be favour the quick death, so we don't really know what to expect with someone who's got any ongoing medical/mental issues like this.

3. If she is just going to be this bad, is there anything we can do ourselves to help her retain memory or stay aware? We've already thought that bringing a big calendar into her room where we mark future events but also document things like "your beloved granddaugher was here for this week" might help. But maybe it won't? Or there's something else?

Sorry for the length and thanks in advance for any advice. I'll be there later this week and am not afraid of being a fierce advocate for her care.
posted by marylynn to Health & Fitness (12 answers total) 4 users marked this as a favorite
I can't help with 1, but I can address 2 and 3 having had one great grandmother with Alzheimers and a grandfather with Parkinson's that came with some serious dementia in the last year before he died.

If what you're experiencing is dementia, and not some reversable symptom of the stroke or a side effect of medication, it's just the way it is. It is frustrating and heartbreaking, but this is how it works. My great grandmother forgot everyone, including her daughter, and never recognized a nurse or anyone more than once. You can try calendars and whatever, but it's just not going to work. Calendars help with "senior moments", but not so much with serious dementia.

I'm certainly not any sort of doctor but anecdotally, I can tell you that when we (forcibly) moved my great grandmother from her own home to an assisted living facility, she went from "a few signs of dementia" to "forgetting who any of us were" within a matter of weeks. It was like some switch was thrown, and once she didn't HAVE to force herself to remember things and be independent, she just had no reason to keep trying. Are you sure your grandmother was not exhibiting any mild dementia-like symptoms prior to this, that may have gone unnoticed?

I'm sure this is very hard for you and your family. Best wishes for working through this.
posted by olinerd at 10:39 AM on December 20, 2010

Is she on any pain meds? I ask because my mother who had similar circumstances was on some kind of meds that made her very belligerent and forgetful. ( Same thing for my dad after surgery.) We demanded that the meds be changed and both were back to normal.
posted by Gungho at 10:39 AM on December 20, 2010

Strokes can lead to vascular dementia, so it's possible the two are connected. You'd want to talk to a neurologist about that.

I don't know about how it progresses in the long term but I do know two people who currently have it and from the perspective of caregivers, it's basically like Alzheimer's. When they're confused, there is no amount of arguing and pointing to calendars that will change their minds. Obviously you want to do the best you can to orient her but if she's insistent that it's Easter it's ok to say "Yes, we're looking forward to the holiday" and drop the subject, instead of trying to convince her it's Christmas.
posted by stefanie at 11:20 AM on December 20, 2010

I'm really sorry you and your family have to go through this. You might want to have your grandmother's doctor look at her kidney and liver function. Being newly bedridden can screw those things up, and so the drugs she's on may not be clearing her system correctly, making the side effects that Gungho describes even worse.

Regarding the nurses, see if you or a family member can talk to a nurse manager to address your concerns. You might want to bring up that your grandmother, with her irritability and poor ambulation, is at high risk for a fall. And if she's on blood thinners when that happens, that would be REALLY BAD. That might get someone's attention and encourage them to watch her more carefully.
posted by sarahnade at 11:29 AM on December 20, 2010

Her change in mental status could be due to a wide variety of factors. It could be the strokes, or further strokes. It could be side effects of her medications. It could be delirium caused by infection, which is very common in the elderly. Even something that a young person would write off as annoying but not terrible, like a UTI, can definitely cause these kinds of symptoms in an older person. Did she (does she still?) have a urinary catheter at any point in her hospitalization? These are a really common cause of UTIs that lead to delirium.

The key is that your family has noticed a relatively sudden change, even since the stroke. The hospital personnel do not know your grandmother's baseline status the way you do, so it will be very hard for them to realize that her cognitive abilities and memory have taken such a turn for the worse. Your family really needs to get in and advocate for her, telling all the hospital/rehab staff that her mental state has significantly deteriorated since the move, and that she was NOT this bad after the stroke. Insist that they check for infections, review her medications for anything that could be interacting or should be discontinued, perhaps even evaluate her for further strokes. "I know it's hard for you guys to see this because you don't know Grandma, and you weren't with her in the hospital when she first had the strokes, but she wasn't like this even after the stroke. Something is different and you need to find out what it is." Depending on the cause, this may or may not be reversible. I wish your family luck and hope that they find a fixable cause.
posted by vytae at 1:32 PM on December 20, 2010 [1 favorite]

was your grandmother ever in intensive care? did she have surgery/general anesthesia? ICU dementia is a pretty well-documented complication, esp. in elderly patients. or she could continue to be having ministrokes. i would talk to her neurologist.
posted by thinkingwoman at 2:46 PM on December 20, 2010

I am not a doctor, but I do work in senior services so I hear about these things sometimes. My understanding is that trauma like the ones your grandmother has experienced can also cause short-term dementia, which is often reversible if addressed. I think vytae gives good advice about how to discuss this with the hospital personnel.

Good luck!
posted by bigd at 4:54 PM on December 20, 2010

was your grandmother ever in intensive care? did she have surgery/general anesthesia? ICU dementia is a pretty well-documented complication, esp. in elderly patients. or she could continue to be having ministrokes. i would talk to her neurologist.

Trauma like the broken hip the poster describes is a common cause of exactly this kind of transient exacerbation of dementia.

Like everybody else has said, there are a number of factors that can be responsible for the confusion.

Of all of the specialties you mentioned, I think that the geriatric specialist has the biggest picture of the entire situation. Managing confusion should start with that doctor. Although there are a number of reasonable explanations for your grandmother's confusion, I would have a high suspicion about the anti-depressants, depending on the onset of the confusion vs when the antidepressants were started. I'd be careful about starting antidepressants at a time like this because they're almost impossible to evaluate-- there are just too many other complicating factors. Your concerns about the confusion should be brought up with the gerontologist, with a question like, "I'm wondering if maybe the antidepressants have a role in this? Maybe we should wait until a more stable period to begin treating the depression?"

But didn't she have a primary care doctor before this? Her primary care doc is important-- that's the one doctor that had a good handle on her level of cognition before. The specialists should be contacting that doctor.

1) You should make sure that nurses and doctors treating your grandmother have a good idea of her baseline cognition/functioning. They may not be very interested in that, which is fine, but they need to know about it. (If her recent cognitive decline is due to a third stroke, something you sound afraid of, it's really too late to do anything about it. If the medical staff is competent, they should be evaluating your grandmother for further changes in her cognition.)

2) Well-- this is maybe just how it is, and maybe it's not. Your grandmother is in a strange environment and on new drugs. As she returns to a previous routine, she may become less confused. Or, your grandmother suffered cognitive changes from her stroke. Then, it's pretty much just how it is. It's really too soon to say how well she's going to be thinking six months down the road. Unfortunately, the only real way to figure that out is to wait and see.

3) As has been mentioned, there's no real gain to be had from convincing your grandmother that it's not Easter. It's not going to make her feel any better. Generally, it's a good idea to just roll with it.

But there's nothing wrong with trying things out. After all, if your grandmother expects certain things because it's Easter, then she can become frustrated or anxious, and a calendar would be worth trying out (if it actually bothers her). If she's anxious about not being visited, because she can't remember being visited, then maybe you can relieve her anxiety by giving her gifts (like autographed photographs of you and your family, and cards). If she's unhappy about people not answering the call light, then the right response from the caregivers is to anticipate her needs-- if she's ringing for pain medication for her hip, it's easy enough to give round-the-clock medication; if she needs water, there's no reason not to provide her with a pitcher twice a day.

I imagine this is very trying for you, and I'm sorry that I can't offer any certain answers. I wish both you and your grandmother the best.
posted by nathan v at 6:03 PM on December 20, 2010

Talk to the neurologist and the gerontologist about vascular dementia. That's what my 82 year old aunt has had ever since her severe stroke in early 2008. It's very similar to Alzheimers and yet it's different - it doesn't progress the same way, for one thing. Vascular dementia starts suddenly and then goes downwards in steps; people with it will plateau for a long time and then take a sudden downwards turn, then plateau again. In Alzheimers people just keep on going downhill. Your grandmother's symptoms sound very much like my aunt's. She gets terribly confused in new places - it took her several months to consistently find her way around her very small bungalow after we moved her down here. She still gets lost in my 900 square foot house every time she visits; it's just part of the dementia. However, she improved a lot once she got used to a routine and finally figured out where everything was in her house. Your grandmother may improve as well once she gets acclimated to the rehab center, but it takes longer than you would think. I would recommend bringing as many of her familiar things to her as you can; her clothes, knick knacks, family photos, stuff like that, so that she's not in a completely unfamiliar environment.

As far as trying to talk her out of what holiday it is, just let it drop. You cannot argue with a person with dementia. Just say, oh, I thought it was Christmas! laugh, and change the subject. Calendars and lists are kind of helpful but if she's like my aunt, she probably has lost a lot of her ability to read and/or understand numbers or sequences. Still, it doesn't hurt.

The tests they will run on her don't need any kind of specialized equipment; it's mostly just a lot of questions to assess her mental abilities. Speech therapy can help as can occupational therapy. You probably should also talk with a social worker and the transition people at the rehab about what to expect in the next few months - can she move back home with appropriate care (the ideal solution but not always practicable) and that sort of thing. It's a long haul, good luck.
posted by mygothlaundry at 7:27 PM on December 20, 2010

Thank you all very much. I'm going to print this out and take it along with me and so some additional research in what you've suggested. From what I've read so far the vascular dementia idea seems pretty close to the money in describing what's happening to her. She's been moved around a lot during her stay at the rehab hospital and every time she does her confusion grows so that makes sense. My expectations that being in a ward devoted to stroke and head injury recovery would make someone there take notice are obviously way too high. We'll fight to get her looked at and also double check her medications.

And also, for the record, we aren't trying to push Christmas too hard but she's kind of wigging out about Easter. She's Polish Orthodox and a big thing at Easter is to get a basket of food blessed. She's upset that it won't get done because she's not there and then we'll all just be eating non-blessed Easter lunch and that Will. Not. Do. Hell, even as an atheist I think that the blessed food tastes better so maybe she's on to something. Would it be completely ridiculous for me to make up a basket for her approval and pretend to get it blessed or is that just cruel in a completely different way? We don't really care if she doesn't understand things but we don't want her to be unduly upset or additionally confused.
posted by marylynn at 12:12 PM on December 21, 2010

We have a close relative who's suffering dementia (Alzheimer's sufferers do plateau and dip, btw). When he was still coherent, we found the very best thing for him was to play along with the dementia fantasies. Arguing with him only made him upset and he wouldn't remember anyway, but reassuring him that whatever was on his mind was taken care of made him feel better. Neither would stick, but the cumulative emotion would. So if he had several arguments, he wouldn't know why but he'd get more and more upset. If he had several reassurances, he'd be calmer.

It was hard for some of us initially, as it felt like lying. But he wasn't in the same reality we were. There was no way to tell him the entire truth. Instead, playing along, we could make him feel better and that was the ONLY thing we could really do for him. We couldn't stop the dementia, we couldn't turn back time, we couldn't make him better. But we could at least make him happy and reassured.

Why not actually get a basket of food blessed? It may not be an Easter basket, but you could surely find someone to bless it anyway. Take her a new blessed basket every few days (if you can) until/unless she gets past Easter, and then do what you can for whatever else comes into her head.
posted by galadriel at 12:44 PM on December 21, 2010

Pretty much every answer is the best one - and they've given us lots to follow up on. Her situation is much worse than I thought it would even be but we're trying to work through the medical stuff bit by bit. I marked the ones that encouraged us to just "go with it" with regard to her statements, etc. since that's what we're doing and it was really helpful to hear that reinforced.
posted by marylynn at 7:22 PM on January 1, 2011

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