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Hello. I need to vent. I'm an only child and my mom lives on the opposite side of the country from me. She also had me late in life, so I am nowhere near retirement and I have a demanding job; I'm married to a great man; and I have a life and community where I live. I visit Mom when there's an emergency and I manage her healthcare remotely. She doesn't want to move near me because other than me, my husband, and her nephew, she doesn't know anyone in my area.



My mom has been dealing with vertigo for 9 months now. She's seen all sorts of specialists and physical therapists. Her old GP sucks. On 3 occasions his advice has landed her in the hospital. He diagnosis without testing and puts her on meds that cause emergency health problems. He advises against specialist physician healthcare advice. After the last ICU visit due to a med he put her on for a disease she doesn't have (which he would have known if he read the neurologist's report), I convinced my mom to see a new GP. She did...but she picked a new GP in the same office as the old one (awkward). This new GP is running all sorts of tests to determine what's causing her vertigo. My mom started doing well, so well I thought I would get my life back for a little bit, until yesterday. Mom didn't listen to her messages on her phone and showed up to an appt that was canceled. "Luckily" (said with sarcasm) her old GP could get her in. Well, he turned everything we were working on with the new GP upside down. Told her she didn't have what I've heard 6 different doctors tell her she has. Told her she needed to go back and see the neurologist for the 3rd time to which I explained that the 2nd time we saw the neurologist he told us he didn't want to see her again because there's nothing neurologically wrong with her. The GP told us we need to take her to Cleveland Clinic to see another neurologist (2 hours from her home...who is going to drive her there?) He disagreed with the meds another specialist put her on. My mother leaves the appt feeling happy. She literally said, "See he has lots of answers." Ahhhhhhhhh!



My mom doesn't remember anything about her health. And it's not that only that she doesn't remember - it's that she doesn't take any ownership. I've told her to bring a pad of paper and write notes. I attend all the appts I can and, I write email summaries for her after the appts so she understands what the next steps are. She reads the emails and she thanks me, but the next time we talk about the next steps, she says, well I'm glad you remember this because I thought...(inserts something completely not related). She has a lung mass that she forgot about (just diagnosed with it 2 years ago) She said she has heart failure...no...she has high blood pressure. She said, I didn't know I had X after about 6 different doctors have diagnosed her with X and I've sent her at least 6 emails explaining it. I know much of this is memory. BUT, she has been like this my whole life and caused me unnecessary health problems as a kid because of it.



I finally told her...look Mom, I need to see that you can take some ownership over your healthcare and that means bringing notes and a note pad with you to your appts. That means remembering what you were diagnosed with. And it's okay if you can't remember these things, but then bring notes. And if you can't remember to bring notes, then we need to consider having you seen by a geriatric doctor and we need to have you evaluated for dementia. And you need to move closer to me.



Of course she started crying. I'm stressed and I honestly don't have time for this.

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I'm so sorry for your difficulties with mom. If her doctor has a patient portal, and most do, arrange by her permission for you to be able to sign on to it. You will see that her doctors create visit notes, post plans for her care, note her medications, post lab results and so on. Everything a patient has the right to know will be on the portal. You can print these things out and email or give them to her. She'll have copies and you'll have copies. You will also be able to send messages to her doctor and medical team - in other words, let them know what they should be aware of that she might not tell them.

A few days before DH or I attend a doctor appointment, I send via the medical practice's portal a short list of talking points. Not detailed but something like this: "Dr. Smithleyson, at our appointment on April 31, I'd like to discuss the following. (1) Blood pressure. (2) Shingles vaccine." etc. Doctor has expressed his gratitude for the smooth flow of our appointments and for being able to look at certain points of our medical history before we meet in the exam room.

Your mother is probably unable to take notes now. Don't expect it. Instead rearrange the procedures and your expectations to fit where she is now. Oh, and my mom had a paid companion to attend her doctor appointments with her. That worked very well. The companion made the appointments, drove her, and kept her organized. She was not medically trained, but she was experienced in helping the elderly to do such things. Good luck to you in finding what you and mom need.
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Jojothepogo Jan 30, 2024
So I already have POA and access to her healthcare portal...so I already do that.

I think it's a great idea to send the GP or specialist discussion points before hand. Thank you. That would definitely help!
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There aren't always easy answers for vertigo, unfortunately. I had to take my mother to the ER and to the ENT docs more often than imaginable for her chronic vertigo, and if she didn't live nearby in AL, I have no idea WHAT would've happened. She was on the dementia highway at the time, so me expecting her to remember details of appointments or to take ownership of her healthcare was absurd. She took ownership of nothing EVER, but blaming others for her predicaments. That she was very good at.

Idk if you've ever suffered from vertigo but it's DREADFUL. Furthermore, depending on what's causing it, most doctors and neurologists are clueless themselves about how to cure it. Unless Meclizine or the Epley Maneuver does the trick, good luck to the patient. The vestibular system is not very well understood by the medical community.

Physical therapy MAY help IF the person is properly trained with treating vertigo. So that's something she can ask her doctor du jour about.

Being alone with such a debilitating condition and relying on a quack doctor is a very unfortunate situation for mom to be in. I hope she can get the proper help she needs. I once convinced a doc in the ER to admit mom based on the vertigo alone, thinking it may be Munieres disease and they could diagnose her. It turned out to be bad neuropathy in her feet (couldnt feel her feet) combined with bad hearing loss and poor eyesight, meaning she had no idea where she was in space. That will bring on vertigo in N.Y. minute. Once she went into a wheelchair fulltime, the vertigo stopped on a dime and never returned again.

Good luck JoJo.
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Jojothepogo Jan 30, 2024
Funny. I was going to type much of what you added here, but I figured no one would know what I'm talking about. She has had 2 rounds of BPV physical therapy with a vestibular therapist. It helped. Concerning Menieres disease, the med her GP prescribed her was for Meniere's disease (Indapomide) and it caused SIAD (severe fluid retention that dilutes electrolyte balance). It should have never been prescribed to her because the neurologist already said she didn't have Meniere's disease. If he would have read the neurologist report then he would have known not to go down that rabbit hole. Yesterday, the old GP had the audacity to yell at me and do what the neurologist said...which was to take her to a psychiatrist. I wasn't involved in her health care when all this went down in early fall. So now we are trying to figure out if her current vertigo issues are what she had before or if she is still suffering from SIAD and if so, what's causing that. The new GP was working on figuring this out.
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Your mom obviously has some mental decline going on if not dementia itself, so expecting her to remember to bring a note pad and take notes is pretty much useless at this point.
I'm sure you're aware that most doctors offices now not only send you home with printed notes from your visit, but also have them online on the patient portal, so you or your mom can access them anytime you want.
It also sounds like your mom should no longer be living on her own, Now that doesn't mean that she has to move in with you or even close to you, but perhaps it does mean that it may be time to have her move into an assisted living facility where she will be around other folks her age and have staff to look out for her. They can also bring her to any doctors appointments in their facility van if need be.
So while I understand your frustration with your mom, I have to remind you that your mom is not doing any of this on purpose. Everything she's exhibiting are all signs of cognitive decline/dementia and of course she's overwhelmed with it all as she's probably more than aware that she has some issues going on and that can be quite frightening to someone, especially when living alone.
I wish you well in getting things figured out with your mom.
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Jojothepogo Feb 2, 2024
She’s not bad enough for assisted living yet. I know that for sure. When she was released from the hospital for SIAD, she was in skilled nursing for 2 weeks. The docs and social workers there told both her and I that she is too well and advanced for nursing and they wouldn’t consider her for assisted living either. She pays her bills. She remembers versus from the Bible and when and where church events are, but her healthcare, she almost doesn’t try to remember which is why I was venting.
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Two actions would probably clarify a lot of things:

- she never goes to a medical appointment alone again (not sure if a geriatric manager can/will do this)

- she is no longer expected to take her meds herself: someone else needs to manage that for her (and not leave the meds where she can access them when she's by herself).

If she is having memory impairment -- no matter what is causing it -- she needs a medical advocate in her area.

If you are not actually present for all of her appointments, there's no way she is remembering correct info unless you are reading notes in her medical portal, and even then if may not provide insight into what she's telling her doctor(s)... which also may not be accurate.

I've had BPPV (benign paroxymal positional vertigo) for 25 years. There is no medication that cures it, only ones that treat the symptoms of dizziness and nausea. The ones that treat dizziness also make you very sleepy. She could be overdosing herself on this, which may be contributing to her forgetfulness. I myself don't bother taking these anymore, I only use 1 prescription for Zofran for nausea.

If your Mom has been cleared of a tumor, Meniere's disease, inner ear problem, etc. then all that's left is BPPV. Mine comes and goes and I deal with it by doing the Epley manuever every morning.

I think you will need to go spend 1 week with your Mom, making sure she has all her legal ducks in a row, taking your PoA paperwork to her bank, her doctors, etc. and being in the exam room when she is given the cognitive and memory test, and sitting behind her out of her sight so that if she incorrectly answers the doctor's questions, you nod your head with the correct one. This is what I did with my MIL, and what I'm doing with my own 94-yr old Mom now.

If you are not your Mom's PoA and she refuses to assign you, then you have a decsision to make because it becomes wholly impossible to manage someone who is uncooperative without legal authority to do so. Then you either have to pursue guardianship throught the courts (long distance and expensive) or you report her to APS and allow social services for her county to acquire guardianship and the they will manage every aspect of her life until she passes.

I'm an only child to a single Mom (who lives next door). I also manage her older sister, my Aunt, who is 104 (in another very distant state) living in her own home. And also my MIL who is in LTC 2 miles from our house. I fly down to FL every year to catch-up with my Aunt and her needs that require my presence. I'm going down there this February to do it.

I know it is stressful to be in this care "sandwich" of your Mom and your own family. It will be difficult for a while but then once you figure stuff out it will improve. Getting your Mom to move will depend on her finances and the COL for your state. It is a shallow (no, not steep)* learning curve and many of us have been riding it with our parents.

I wish you success in working through your Mom's care. Age-related decline goes on for a while, and we are continuously learning how to help our LOs and to adapt to it ourselve.

* "...a steep (or short) learning curve is a good thing, because it indicates that a large amount of learning is taking place in a short period of time. In contrast, a shallow (or long) learning curve indicates that a long period of time is required to learn the needed information."

Source: https://shemesh.larc.nasa.gov/fm/fm-learn-curve.html#:~:text=time%2C%20then%20a%20steep%20(or,to%20learn%20the%20needed%20information.
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Jojothepogo Jan 30, 2024
How do I find a geriatric manager? I have POA and I have access to her health portal. I attend as many appts as I can remotely, which is most of them. And if I wasn't able to attend them, then I follow up with the doctor afterwards if I have any questions about the appt summary. I flew out to see her a few months ago when she was in ICU and I plan to do it again with my husband this time ( her neighbors are scary and she has no deadbolt on her front door and she has lots of stuff that needs to be fixed). But I need to determine if she needs to go to Cleveland Clinic and get the appts set up there before I book the flight.
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Oh sorry this sounds really difficult. First of all, take a deep breath, This is your mom and she is struggling, so hold on to your compassion as hard as you can.
I think at this point expecting her to take ownership of her health is too big of an ask. If she could do it, she would already be doing it. So let that expectation go.
I wonder if you could find her someone local who could go to appointments with her and take notes or make audio recordings. I had a local person help me for 3 years when I was living in AZ and my mom was in MN. The person I privately hired was actually a retired home health care LPN who was wanting to work a few hours a week. I found her through a referral of a friend. I wonder if care.com might be a good resource for someone like that. You could post a job description on care.com and see if anyone applies. The retired LPN I hired took my mom to her appointments, helped communicate with the Drs and with me. She was an invaluable asset for me and my mom. Just an idea for you. All the best.
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Isthisrealyreal Jan 30, 2024
I have to disagree. My mom loved popping pills but absolutely DID NOT own her health or health care. All she wanted was drugs and that was that. Anything else besides that was interpreted by her as blah, blah, blah.

It was a life long condition with her and it cost her her life.

Rremember that people come here because they need some compassion, just saying.
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Jojo,

I see your dilemma here and I empathize with you. Your mom is overwhelmed by this situation.

Look at what is happening now. I realize that her past behavior has been hurtful to you. Continually reflecting on the past will prevent you from looking at her current situation.

Know that you can’t change her behavior but you can change how you react to it.

Do you think that your mom may be experiencing cognitive decline? If so, this would prevent her from managing her health care by herself.

Your mother is struggling with trying to cope with her vertigo. I feel for both of you. It’s frustrating for each of you.

I don’t know enough about vertigo to give an opinion. Others on this forum have experienced vertigo and hopefully will be able to provide some insight.

I read your profile and you say that you doubt that your mom can afford to live in Denver. Have you looked at her financial situation lately, or any prices of an apartment or condo in Denver that may be suitable? Or perhaps an assisted living facility?

Wishing you and your mom all the best.
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Jojothepogo Jan 30, 2024
Thank you. I have been looking around for a place for her in Denver. I don't think she could afford it entirely, but I can subsidize a bit. And if she lives in CO for 6 months, she can apply for a low-income senior appt, which she can afford.
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