Wow, this raises an issue for all of us. I know my own record includes everything ever prescribed for me in the past 2+ years, even things I no longer take. I’ve noted this to them (the asst asks every time,) but no change is recorded.
I found out that the medical assistant asks, but has no power to change the record. The MD is the only one who can change the record. I spend a LOT of time cleaning up the med list for my mother. I call but also write it all out on the portal with drug name, dosage, oral, and what time of day. And the AL’s “medical coordination” means they ask me to do this stuff.
If the hospital stops some meds, and adds some, that is what the record shows as current meds. With all these new electronic medical systems, there is no record of the previous list online! Since my mother was “away” the AL wouldn’t give it to me. And I had given my only copies of regular meds (prior to hospital) to the ER and hospital floor which went into a black hole. Luckily I had a Word document!
I have to go over meds at the end of the hospital, every time. They recenlty ONLY went by my typed list, which surprised me. I had no official record. And then I went over the meds with the rehab. She was still missing a diuretic and her legs were huge but I had to be “patient” while the rehab doctor reinvented the wheel and evaluated doses. It should have been on her record as a regular med but it took 10 days to get it back at the same dose.
Assisted living makes it even more complicated. Even a simple thing like stopping her third midday Tylenol now that pain is better, or cough medicine for heaven;s sake, means I have to write or call the doctor, ask them to send order to AL and Rx to their pharmacy, and it can take a few days (and also the pharmacy doesn’t come after noon). In a pinch, for a med badly needed, I buy it and give it to her until it is in the system. Sometimes at double cost.
I really can’t work at this point. I have asked that my mother pay me. I would love to work honestly and am trying to figure out a way. I will never make enough to justify hiring someone though 
I always had to review and update lists for my mother and aunt for every ER, hospitalization, MD, and rehab visit. May I suggest for others to keep an updated list with an “as of date” listed. Next to every medication, I listed the MD’s name who prescribed it as well as what condition it was prescribed for. If any medications were added, dosages changed or medications were discontinued, I noted that on the list and kept that as part of the record, however I printed out the new, current, list to give to institutions or providers. I made certain that only the current list was on their record. I usually reviewed the list with the intake nurse and checked it on their computer. I kept copies at home and kept all medical info as well as financial on a an external hard drive as well as cloud storage. (Anal, I know, just a result of training and being an ER nurse for 30 years).
@ECmotherx2 , what you did for your mother regarding her med list is necessary, but probably rare. My sisters and I have done much the same thing, and it’s very difficult to keep the record clear, especially when a hospitalization results in changes to meds - more or different diuretics, more prednisone or taper the prednisone, more or less of a couple of other drugs.
And if that’s what it takes to make sure patients are taking what doctors think they ordered, how many elders are taking the wrong thing, and getting the wrong medicines in and out of the hospital? My guess is well over 75% of them, maybe 95%.
@ECmotherx2 I keep a med list updated at home, and give copies to the ER nurse, the ER doctor, the floor nurse, and the hospitalist. There are still errors. And if I don’t get there in time before 7 when they do rounds, they might make a decision to change something that could be harmful (or do a procedure). I have had to insist firmly that since my mother has dementia and I have an invoked proxy, my mother cannot give consent and they need to call me if I am not there.
The hardest thing is getting a med back ON. Recently the hospital left off one of the two diuretics and my mother was overhydrated. She has congestive heart failure. Her legs were HUGE. In order to deal with the heart, sometimes her kidneys have to be a little worse, because diuretics affect them. I asked the hospital to restore this diuretic and they said no, they didn’t want to affect her kidneys (which with that much fluid were doing better than mine- they needed to do worse!).Then the rehab doc would not restore it either because " a good hospital decided not to." It took me 10 days to get her back on even a small dose of that diuretic. Once back on the full dose (after discharge, via PCP) her legs are her normal size and her breathing is better but that was 3 weeks of ill health because no one would restore her original list.
To some extent, I have had to learn to go with the flow and not argue. There are things it is not in my power to change and I needed that rehab doc to work with us. I had to just be patient- not my strong suit- and wait for the system to right things eventually. It’s like that serenity prayer: change what you can and accept what you cannot change. It’s a balance hard to strike.
I don['t mean to sound so negative either. I admire the doctors and nurses tremendously. The system is just screwy and electronic records actually make things worse.
I agree with @MomofJandL , the percentage of folks getting wrong meds has to be very high.
@compmom, so sorry for all that you have been through. You have been a wonderful advocate for your daughter and your mom. Perhaps ask to review the actual electronic record with the nurse. I always did and also I was never offended if a patient or legal medical representative asked to stand next to me and review the record.
I do review it and it is usually wrong so I have to give them the right ones.
I don’t mind. I just worry about people who don’t know they have to be vigilant.
My favorite was a persistent ducolax enema on the record when she had a colostomy.
I’m mixed on electronic records. Once right, all the health professionals had the same record. But in the hospital as I stood over the nurses shoulder to check on the info I found the screen was totally confusing and simply hard to read. Everything was on there for sure—-written reports that never got read, drug regimen written in 8pt font.
No ability for a nurse to hold a med or give it on a different shift because they’d be locked out of the computer. A total mess and very frustrated nurses who tried their best to do right but were bound up because of a computer system. They literally spent more time looking at the computer screen and checking boxes than attending to my dads needs.
I’m also not a fan of electronic med records. They have lots of info but much of it can be wrong, outdated. Updating it can be difficult and require a lot of vigilance to be sure it remains correct.
My docs rely more on my self reports than the written records. Once wrong info is entered, it’s very tough to correct and it’s hard to find the corrections and weed through the wrong info.
In the med list, meds you have only taken s pill or two or never taken but just had prescribed and in hand are listed with those taken daily and just a confusing mess. They really need to make it easier to see at a glance the daily CURRENT maintenance meds vs the rest. That would really help.
^Yes, every time I have a doctor’s visit, they say, “You’re taking, X, Y, and Z?” and I’ll say, “I’m not taking Z anymore.” I know I’ve repeated that more than once! Why doesn’t the med stay off the list??
Question for the group: What do you do when your parents aren’t capable of dealing with their finances but you live a long way away? It seems almost impossible to help them from a distance. My folks have lots of investments, rental properties, etc. I imagine there are people out there you can hire to help - is there something I should look for in particular?
My sister is local, but I don’t think she’s up to helping much. She’s already stretched way too thin.
@MaineLonghorn I found out that when we tell the medical assistant that our parent is no longer taking a med, the assistant notes that but at the end of the appointment the system reverts. That is because only the doctor can change the record for meds. I will tell the MD as well, but also have found that using the patient portal really works well.
There ARE people who handle finances for the elderly. You have to be careful, obviously, and in my experience, often a release or power of attorney is needed, or a joint account. I would seek referrals, maybe call your local elder services agency, or perhaps a lawyer specializing in elder law.
As an insider: Reconciling the list and what the patient is taking can only be done when the actual medications are presented with a responsible person who knows exactly what medications are taken when. Plus, the assistant or nurse is responsible for making that reconciliation. However, only the provider (MD,DO, NP,PA) can discontinue or add a medication. Therefore, the provider must take the time to again review the list and actually discontinue a medication you are not taking. Often however, the patient gives different accounts to each person. More often than not, a patient arrives without their medication and just tells me: “I take everything prescribed” but can’t tell me what they take.
My recommendation: Look at the printout before you leave the office and make sure it is accurate. If it’s wrong, the provider needs to be interrupted and will soon learn the importance of med list accuracy. Things are worse with the electronic records because the providers sees the note that the patient isn’t taking a medication but doesn’t actually discontinue it. There is often good reason for this. For example, the patient states they are not taking the “as needed” inhaler. But the provider wants it on the list in case it is needed. Or, the patient isn’t taking something the provider feels needs to be taken.
Another recommendation is to ask the provider if any medications can be discontinued and the risk/benefit of each medication. At one point, I decided independent living for my demented parents as long as possible was, according to their wishes, important to maintain. Independent living wasn’t possible with their medications as they weren’t being taken accurately or safely. My mom’s provider agreed that the benefits of not taking the medications outweighed the health risks. My dad’s provider actually told me that in his opinion, dad’s heart was more important than his brain. I found a new provider.
@MaineLonghorn most accounts can be handled electronically. Make sure if you are doing it, you have the financial POA. See if you can sit down with your sister and divide up the financial tasks so you can take over much of the heavy lifting. Besides the POA, putting my name on my parent’s checking account was the best thing I had done.
I handled my dad’s finances for years. He added me to accounts, we called all the credit card companies for him to give permission for me to act on his behalf (when I needed to call about something) and I set up on line access and paid almost all of his bills on line. The few that had to be paid by check (oil delivery and a few others) I wrote a check. Nowadays one could use paypal or venmo or Zelle or what have you.
He didn’t have real estate, other than his house, but I paid all the taxes by check too ( they came throughout the year- city, county, library, school taxes all came separately- what a PITA). I had POA and we even had to refinance his house for him (thats as also a royal pain) and ultimately sell it for his estate. It was a ton of work, but I did it remotely for many years. Good luck.
I had POA and handled bills, investments, house repairs, taxes, etc. We also had joint bank accounts. In some cases for investments, they did not recognize the POA and I had to go through their legal offices to get my name on record. My aunt had savings bonds from the 1960’s that needed medallion signature, unclaimed funds at the state, lien on her house due to unpaid taxes, split shares from Met Life, very old insurance policies, no beneficiaries on anything! It was a nightmare. After getting everything straightened out, I put all bills and accounts online, and set up one account for those accounts that I wanted on autopay. It can be done long distance, but I did travel up to CT at least every 3 mos. during the last 2 years. With rental properties, I think it would be best to hire a local manager.
Re handling finances: MIL had a stroke and was incapacitated for a month before she died. We were local. DH had POA but was working out of state and concentrating on her when he was able to get up here. I’m the one who did everything about her bills and debts. Once I got my hands on the statements, I paid for her heating fuel, property taxes, utilities, credit card balances, whatever, out of our own funds. I sent DH, as her POA, a monthly itemization, and he wrote us a reimbursement check from her account. As I said, we were local, but after getting a single invoice from each entity I was able to do everything subsequent over the phone or online. She didn’t own any property other than the house she lived in; we’d definitely have spoken with her attorney about getting someone to manage that.
OK, thanks for sharing your experiences. My mom has always handled all their finances, but if my sister’s observations are correct, Mom has deteriorated a lot just in the past two months since Dad’s surgery. 
I’ll be in Austin for two weeks so I’ll have to get on top of everything.
@MaineLonghorn you are a good daughter and a good sister! (and a good supermoderator!)
I strongly recommend getting a property manager to handle rentals. Try to get recommendations to find a good one as there definitely are better and worse agents. If your local sister can ask around as to who knows good real estate agents, they may also manage property or have recommendations.
My parent’s house is in a weird market and it just has not been great to sell and thus has been a rental for over a decade. I manage from 1000 miles away and only went there once. I don’t want to pay someone a fee to collect a check and call a repairman. It’s not great, I’d prefer to be close by, especially to have local contacts of repairmen to call.