How much to help a helpless mom with health
August 24, 2018 7:50 AM   Subscribe

I want to support my mother with her recent health troubles, but her helplessness and bizarre interpretations of medical advice are quickly leaving me drained. Sorry for the info dump.

I recently posted this ask about my mother, though it was about her poor boundaries. Probably helpful.

So my always-healthy 69 y/o mom started having GI troubles a little over a month ago. Back then I was living with her and therefore privy to most things going on. My sister lives five hours away and was supportive but can only do much from a distance. Early on there were some issues with my mom stopping meds without talking to the dr, deciding to split doses (esp of Miralax) into two small doses she took hours apart, being convinced she needed to order random supplements from Amazon, not remembering what a doctor said about one of her organs or even what organ it was. It became clear that she needed somebody to go to appts with her and take notes/ask questions, so that fell to me.

I am objectively the best person to go with her. I am local, I have a flexible schedule, I've been the closest to her, and I know her bizarre behavior. (Yes, I realize that she clearly has mental issues that go beyond all this, but my sister and I haven't been able to make headway with that part at all--plus I want to keep the focus on how I can best be a support during her physical health stuff without losing my mind.

After a few weeks of imaging (CT scan, x ray, MRI, ultarsound--none of which she'd had before), she finally had her GI appt and there were several moments in which I almost got up and left. Here are some things that happened:
-The doctor asked if she'd had nausea. She said no. I reminded her that in July she'd gone to the ER at 3 AM for nausea. She said that was "so long ago."
-The doctor asked if she'd had trouble sleeping. I reminded her of the nights in July she'd go walking at odd hours because she couldn't sleep. Again, she said that was so long ago.
-She didn't think to tell the doctor about the laxatives, suppositories, supplements, enemas, etc that she's tried for the past month. And that's a big list. Not sure what her plan was, but it became clear she didn't think that stuff was relevant, so I had to step in and list them for the doctor.
-She said the one thing that had eventually helped her was lactulose, but she didn't think it was compatible with the "modified low FODMAP diet" she was trying, so she stopped it. (The "modified low FODMAP diet" is another story.) The doctor told her not to stop things that were helping her and asked what the current situation was. She said all she was taking was a stool softener and she was having a BM every five or six days.
-They discussed how in recent bloodwork one of her liver enzymes was elevated. The doctor was asking questions about what could have caused that change, and it came up that she was on a statin. She asked if that could be causing problems with the liver enzyme. He said it was possible and that he'd do more bloodwork. As soon as he left the room, she said "he figured it out! It's the statin." I think she was going to go off the statin completely--she already cut back on how often she takes it because she thinks that is why her hairdresser got diabetes. (You can't make this stuff up.)
-The doctor had recommended trying milk of magnesia for constipation. She tried it, but, yet again, decided for no good reason to take it in the form of two little doses six hours apart.
-The doctor scheduled her for a colonoscopy and endoscopy. Later he added it to the calendar coded as "outpatient surgery." She saw that on MyChart and sent me a frantic text thinking she needed emergency surgery based on her bloodwork and that the doctor hadn't told her but just had put it on the calendar. (I waited a while, then sent a calm text telling her that just referred to those procedures.)


So that's the sort of behavior I'm up against. Anything my sister or a doctor or I tell her can be swiftly undone with a Google and a spin through Yahoo Answers. And clearly it doesn't take much for her to misinterpret things.

I don't know how I can share this load. She has one local friend that could be helpful, but, again, doesn't really know the full scope of things. Other local folks would help take her to appts and pick up meds but they don't know she's this difficult. My sister and I have gotten my mom to sign releases so doctors can talk to us. It has definitely occurred to me that her helplessness is a narcissistic power play and that a trust fall is in order. What I don't know is what parts to keep up and how to relinquish the rest. The most reasonable answer is for me to only give what I have the capacity for, but I don't know where that line is, aside from being sure I've crossed it. I am in therapy and talking about these things but could use some fresh ideas about how I can best step back.
posted by mermaidcafe to Human Relations (17 answers total) 3 users marked this as a favorite
 
Look into all local support organisations for the elderly. There are people who go to dr appointments with older patients for example. That’s who you’d have to turn to if your schedule was a bit less flexible anyway.
posted by koahiatamadl at 8:37 AM on August 24, 2018 [1 favorite]


Thanks. Do you have names of any orgs? We are in Blacksburg,VA.
posted by mermaidcafe at 8:43 AM on August 24, 2018


Orgs for the elderly are incredibly variable by state. Ohio has an amazing Council on Aging organization. Tennessee, not so much, which is why we moved my parents up here last year. If you can't find any orgs by googling, you might see if any of her medical practices have any advice for you. My dad's oncologist has a Patient Manager, for example, who can help us with practical information if we need it.
posted by cooker girl at 8:52 AM on August 24, 2018


My heart goes out to you. I can totally relate, sounds like our mothers are twins.
I have no good advice, but just wanted to let you know you are not alone.
All i can say is do look out for yourself. I lost myself last year in her crazy world and it took a break down to wake me up.
One thing i find helpful is to see the funny side, you are right one cannot make this stuff up, and occasionally laugh myself literally to tears with a trusted friend who understands how it helps me to laugh and does not judge me for it.
Also i found that a couple of my mother's elderly relatives were very willing and able to listen to her health stories and so give me respite , so i occasionally ask one of my aunts to call her.
More power to you
posted by 15L06 at 8:52 AM on August 24, 2018 [5 favorites]


Maybe try this place: New River Valley Agency on Aging.

The New River Valley Agency on Aging is dedicated to advocating for the aging population by maximizing at-home services, linking seniors and their caregivers to resources and information, and providing community education on aging-related issues.

They serve Blacksburg, VA.
posted by lyssabee at 9:04 AM on August 24, 2018 [1 favorite]


You can help her by continuing to go to her appointments. I get that it is frustrating, but your examples rate pretty low on the scale of aging parents being weird/delusional/dishonest about their health issues (ask me how I know). Being able to fill the doctor in what she forgets or fails to mention is a huge help. Keeping track of what she's supposed to be taking is also huge. It sounds like your mom is a pain in the ass but has also been there for you when you needed help. Good luck, I know none of this is easy.
posted by cakelite at 9:05 AM on August 24, 2018 [17 favorites]


Part of the problem is accepting that she's not the one best able to report and make decisions, even though she's the parent and you're the child. Once you've really accepted that, then her parental blitherstorms won't be as effective in making you feel as if it's all terrifying and you're going to mess something up. It's not and you're not: she signed the release, the medics know to listen to you, first, before they just take her word about stuff. You're doing it, and you're doing it well.

Meanwhile, only allow yourself to worry about the problems that are not yet resolved. So of these, only the penultimate one may be something to fret about.

-The doctor asked if she'd had nausea. She said no. I reminded her that in July she'd gone to the ER at 3 AM for nausea. She said that was "so long ago."
Doctor told. Resolved.

-The doctor asked if she'd had trouble sleeping. I reminded her of the nights in July she'd go walking at odd hours because she couldn't sleep. Again, she said that was so long ago.
Doctor told. Resolved.

-She didn't think to tell the doctor about the laxatives, suppositories, supplements, enemas, etc that she's tried for the past month. And that's a big list. Not sure what her plan was, but it became clear she didn't think that stuff was relevant, so I had to step in and list them for the doctor.
Doctor told. Resolved.

-She said the one thing that had eventually helped her was lactulose, but she didn't think it was compatible with the "modified low FODMAP diet" she was trying, so she stopped it. (The "modified low FODMAP diet" is another story.) The doctor told her not to stop things that were helping her and asked what the current situation was. She said all she was taking was a stool softener and she was having a BM every five or six days.

Doctor responded to FODMAP ridonk appropriately. Resolved.

-They discussed how in recent bloodwork one of her liver enzymes was elevated. The doctor was asking questions about what could have caused that change, and it came up that she was on a statin. She asked if that could be causing problems with the liver enzyme. He said it was possible and that he'd do more bloodwork. As soon as he left the room, she said "he figured it out! It's the statin." I think she was going to go off the statin completely--she already cut back on how often she takes it because she thinks that is why her hairdresser got diabetes. (You can't make this stuff up.)
Did she go off the statin? If not, then resolved.

-The doctor had recommended trying milk of magnesia for constipation. She tried it, but, yet again, decided for no good reason to take it in the form of two little doses six hours apart.
-->Tell the doctor and ask if that's a problem. It may not matter. If it does matter, then the doctor will tell her to cut it out.

-The doctor scheduled her for a colonoscopy and endoscopy. Later he added it to the calendar coded as "outpatient surgery." She saw that on MyChart and sent me a frantic text thinking she needed emergency surgery based on her bloodwork and that the doctor hadn't told her but just had put it on the calendar. (I waited a while, then sent a calm text telling her that just referred to those procedures.)
Text sent; mother reassured; surgeries on the calendar. Resolved.

You are a champ.
posted by Don Pepino at 9:30 AM on August 24, 2018 [29 favorites]


Is there any chance she's taking mini doses of these medicines because she doesn't actually have GI problems and is pretending for the attention and control? I mean, this did start shortly after you moved out, right?

It wouldn't be unreasonable to try to get a doctor to evaluate her for signs of dementia. I get that she probably has mental health issues that are causing her behavior, but describing July as "so long ago" makes me wonder if she's actually forgetting stuff.
posted by purple_bird at 9:30 AM on August 24, 2018 [10 favorites]


You need to get her a neuro evaluation.

Your mother isn't being difficult in these ways on purpose, this isn't manipulation, it is behavior but not "behavior". It's an attempt to make sense out of bits and pieces she's able to retain. She's not processing information in a cohesive way anymore. She may very well historically be difficult, non-compliant, attention-seeking, whatever, but this is the hell of diminished cognition and unless it is being caused by a treatable factor (infection can do this) it is the new normal.

This is a thing you tackle as "my mother can't take care of herself" rather than "my mother is a pain in the ass" even though the latter may also be true.
posted by Lyn Never at 10:16 AM on August 24, 2018 [24 favorites]


I was thinking along the same lines at Lyn Never. My grandmother presented with GI symptoms early in the process of developing dementia. Looking back, it was likely that she was experiencing some GI symptoms as a result of anxiety when she found herself lost or confused in familiar places.

The having difficulty accurately tracking symptoms, keeping track of medications, misinterpreting instructions, sleep disturbance, etc. may point to something else happening here. Confusion can be a sign of an underlying metabolic concern or acute illness that can be addressed with good resolution of symptoms. If it is something more persistent like dementia, it will be important to understand that so that you and she can plan for the additional supports that will help her best. And it could also be that this is just her being a "pain in the ass" as Lyn said, and if so, it's important to know that too.

You are being a wonderful support to her. I wish you both the very best.
posted by goggie at 10:37 AM on August 24, 2018 [12 favorites]


I also want to put in a pitch for: preexisting personality or mood disorders exacerbated by cognitive sundowning or early dementia are HORRENDOUS, and sound like what you could be dealing with. The mental-health issues and the long-standing emotional strain they engender make the already-difficult task of dealing with the latter that much worse.

Still, it is entirely worth getting a real cognitive evaluation for any 69-year-old with the behaviors you describe. First, there may be medication or treatment options that your mother deserves to try, though your mileage and her compliance may vary on that. Second, if there are newly-developing cognitive issues, it will better equip the doctors not addressing those issues to deal with her and be comfortable communicating with you. It can be a lot easier on you both to say to, for instance, a new GI specialist, "She has early dementia." and let that carry the burden of explanation than, "She has always had suspected [NPD/dependent personality disorder/whatever your therapist has suggested], and now I think she has vague age-related issues too." Most non-psychiatrists can't do much with the latter, assuming you can even find the private moment with them to convey it -- for the former, they can tailor treatments (avoiding meds that require frequent or finicky dosing, for example) and potentially get you set up with helpful services.
posted by LadyInWaiting at 10:43 AM on August 24, 2018 [5 favorites]


Another explanation for the weird answers to the doctor is that she's faking this for attention.

I think you definitely want to steer this into an evaluation of her mental status. This could be attention-getting, early dementia, mental issue, etc.
posted by yes I said yes I will Yes at 11:09 AM on August 24, 2018


As frustrating as this is, these don't seem like extreme examples. One reason doctors' offices ask the same questions over and over is that people tend to forget they had nausea, not think it's important to mention supplements, not think about their trouble sleeping in the moment. This is very common even without dementia. I have forgotten things in the moment myself.

She tried it, but, yet again, decided for no good reason to take it in the form of two little doses six hours apart.

This sentence really stuck out to me. Does "for no good reason" mean she didn't have a reason, you don't like her reason, or she didn't tell you a reason? I don't know you, so I don't know exactly what's going on, but I wonder if you're really thinking about this from your mother's point of view. One of the worst things about aging is having your concerns dismissed and being treated like a person with no agency. I saw this in the hospital helping to care for my uncle. The doctors and nurses talked to me rather than his closest relative, my aunt. They just seemed to naturally dismiss her, and it was very hard for her. The way that people here are jumping to dementia and, for God's sake, attention seeking (by someone who's clearly minimizing her symptoms) is an example of this. I mean, dementia is a possibility, but what I see here seems pretty normal for many people. Have you suggested that she write down her symptoms or can you help her with that? That is helpful for patients of any age because human beings forget things no matter how old they are.

Regardless, this is a lot of pressure on you, so it does seem like a good idea to look for additional support for navigating this.
posted by FencingGal at 11:54 AM on August 24, 2018 [4 favorites]


Fun Fact: Miralax can actually cause a lot of GI symptoms. She really needs someone to monitor what she takes and keep track of symptoms. I suggest setting up a chart for her so she can readily remind herself what she agreed to try for a week at a time and engage with her on this instead of trying to argue. It'll be much easier.
posted by fshgrl at 12:06 PM on August 24, 2018


If she really is that constipated then she may be dehydrated all the time and that can also cause cognitive problems and odd behavior. This happened to my mother a couple of times. She was also frustrating to take to the doctor because she didn't want to bother them so much and would omit to mention symptoms. So being there is really helpful.
posted by Botanizer at 1:47 PM on August 24, 2018 [3 favorites]


In my experience, absolutely no one you can pay is going to do as careful or comprehensive a job of this as a family member can, for these kinds of appointments, when someone has cognitive issues.

Start with having your mom assessed, if possible, because a diagnosis can kickstart supports that may lighten the burden - like having a personal support worker come in and watch her take her meds, if it comes to that...

But at this time, I’m very sorry to say it’s got to be you or your sister going along with your mom.

I’m doing what you’re doing for one of my parents, and it can be exhausting. No doubt about it.

Laughing at stuff will help, so will planning self soothing activities the evening (and for me, day) after a tough visit. It doesn’t sound like you’re at all in a place to laugh at things yet though - you don’t know what her situation is, and you have residual resentment. Addressing the latter is critical in order for you to cope; not doing so could be dangerous for both you (your mental health and ability to plan for your life) and your mom (it could stress and upset her; more darkly, if unlikely, unresolved pain and overwhelm in adult children is where elder abuse often has its roots :/)...

At some point, you and your sister may have to discuss the split of responsibilities on a more long-term basis. So it’s important that you’re able to talk to each other, under duress.

Tl;dr a) get your mom assessed, b) do your best to come to terms with the result and split that from your past feelings, c) therapy to process this and any other stress is highly advisable. This is HARD and in some situations, it takes advanced level emotional skills. Definitely look at online guidance you can find on coping for carers.

Personally: in addition to being at peace with the diagnosis, I’ve become really good at compartmentalizing, I bring material to entertain myself while I’m in waiting rooms, I try to enjoy positive moments with parent (I do), and I have a jumbo sized jug of epsom salt.

As someone who struggled with social anxiety in the past, I am still not fully cool with my own responses to embarrassing behaviour. Laughing at it, when possible, does help.

Best of luck.
posted by cotton dress sock at 4:24 PM on August 24, 2018 [5 favorites]


Some of your mother's symptoms and circumstances make me think she could be in an early stage of hepatic encephalopathy, which is caused by a buildup of waste products in the blood that a compromised liver is unable to process.

As well as cognitive impairment, other symptoms are nausea and restlessness -- and note that lactulose (along with antibiotics) is standard treatment, because it breaks down ammonia in the blood which the liver is unable to deal with.

And if she does have hepatic encephalopathy, statins could conceivably be playing a role, because while the severe muscle-cell breakdown of rhabdomyolysis is a rare side effect of statins, muscle pains are common, and the excess nitrogenous waste those could imply might be contributing to the ammonia load in her blood.

So I think you should ask the doctor to rule out hepatic encephalopathy before you and your mother embark on other courses of treatment.
posted by jamjam at 6:20 PM on August 25, 2018


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