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I’m going to scream

howdoidothis
howdoidothis Member Posts: 16
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When my mother was initially referred to a neurologist over the summer, they referred her to someone who didn’t have an appointment for several months(October). She made the appointment. In the meantime, they referred her to another doctor. We canceled the first doctor. Tests were done, meds were ordered. She has a follow up in October.

Last week she gave me a printout from MyChart of an appointment with the first doctor. I called myself to confirm that the appointment was canceled. They said it was. Today she received a call to confirm the appointment! It’s hard enough dealing with the person with the memory issues without the medical organization making it worse because they’re not communicating! They use a central scheduling number. I’m guessing the doctor’s office for some reason didn’t get the cancellation.

We are early on so I have to be careful coming in heavy handed. She gets very upset when I involve myself. I’m trying to let her handle this herself, but right now in addition to the neuro, she has a series of dental appointments and she just started a series of PT appointments for a leg issue. There are all kinds of appointments, so, yes, it can get confusing.

I work full time and commute two hours in each direction. I can’t spend all day everyday making phone calls to fix something that should have been taken care of already.

Comments

  • H1235
    H1235 Member Posts: 575
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    How frustrating! Would she be willing to share her Mychart log in information? When my mom was diagnosed the doctor linked moms mychart to mine. It made things so much easier. My mom had so many appointments messed up. She would tell me someone called about an upcoming appointment but had no idea who it was with. It was a mess. I totally understand her getting upset with you being too involved. Maybe if you are careful with your wording she might be ok with it. I know this wasn’t a question, but the other thing her neurologist recommended was that we see a lawyer right away. If you haven’t done this yet, now is the time! You will need a DPOA for sure. It’s a lot, but somehow we manage to figure it out.

  • anonymous515
    anonymous515 Member Posts: 1
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    Thank you for sharing. I don’t feel so alone now. I am trying to work with parent’s multiple doctors. Some use MyChart and some don’t. My parent’s patient summary visits are not always shared in a written form so I am trying to figure what is going on through a primary care physician.

    One parent is diagnosed but the other is getting very forgetful. Fortunately, one is able to drive the diagnosed parents to all the appointments. Unfortunately, not all information is passed to me to follow up if I miss an appointment. It is a challenge to attend all appointments working full time. It is also a challenge to help with a treatment plan if the doctors aren’t properly communicating. I am working on setting up a physical binder to house information so I don’t forget and I can remind the other parent of our plan of action. This is new way of life is stressful, there has to be a better way for a family care giver to manage all this medical information. I am meeting with a social worker in a couple of days. Hopefully they can help.

    I’m praying for you too as you go through this.
  • NizhoniGrrl
    NizhoniGrrl Member Posts: 88
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    I feel your pain. We were told to follow up with an orthopedist within 2 weeks for my mom's broken arm after she was released from the hospital to rehab. Rehab said they would make the appointment, fast forward 2 weeks as she is released from rehab and we're told they were never able to make the appointment because the office never picked up the phone, they left a message, but no one ever picked up the return call! So I call and they say her Dr is in the office on Tuesdays and the next appt isn't available for 2 more weeks now. I'm incredulous that there is literally no one else she can see in the group for 2 weeks and I'm told walk ins are available, but you might need to wait 2 hours. Okay. So we plan to take her in on Friday (best day for us with our work schedules). On Thursday, I receive another call back from the office from someone else. She says they can squeeze her in the following Tuesday (not good for me). I take the appointment and say I will cancel it if we aren't able to take her in on Friday. Sounds like a plan. Ok, right? Friday appointment happens and I call Monday to cancel Tuesday appointment. I'm told the Tuesday appointment isn't optional. What? Apparently a PA saw her on Friday and the Dr needs to check her herself. What?! Why did we waste our time on Friday then? I was absolutely livid.

  • psg712
    psg712 Member Posts: 384
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    It's tough to manage all of the appointments, especially if the PWD is still trying to do it herself. Things got easier for me when I got access to mom's MyChart. I also changed her contact information to my email and cell number. Did that for insurance and financial accounts too. That way she stopped getting a lot of calls that confused her.

  • sandwichone123
    sandwichone123 Member Posts: 767
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    What does it mean that an appointment isn't optional? What happens if she doesn't go? Who is insisting on it and why—is it required for insurance, or to return to a care facility?

  • NizhoniGrrl
    NizhoniGrrl Member Posts: 88
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    They said that my initial drop in appointment wasn’t a substitute for seeing the doctor at the scheduled appointment, which is not what I was told on the phone. Regardless, I did not keep that appointment and made one for the following week. So aggravating. It’s hard enough to keep up with all the appointments.

  • Jean loves wildlife
    Jean loves wildlife Member Posts: 33
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    Scheduling of appts and keeping track of doctors and appointments can be exhausting and I have found not all the clerical staff in the dr office keep track well. They aren't all equally competent. I don't have a solution but wanted to offer my sympathy. There needs to be a better way but I don't know what it is. Getting mom to agree to give you access to her MyChart and authorizing you to talk to the dr would be key. I am fortunate to have found a terrific Medical Assistant who I can now always talk to and she has helped straighten a lot of things out or answer questions when I can't reach anyone else.

  • KROONEY505
    KROONEY505 Member Posts: 2
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    edited September 29

    I totally agree with Jean. Let your mom know that you are happy to help her keep her medical appts straight, since there are so many of them AND the doctor's offices aren't doing their part in keeping things straight. All it requires is for her to allow you access to her MyChart.

    I do that for my mom who is 87, and has ALWAYS been against computers to begin with so she doesn't do much more than check email on hers. She refuses to get onto MyChart herself, because she can't remember how to do it - and it's intimidating.

    I totally understand having to be careful to not come off too strong - I remember being in your shoes. Finally, I was able to get my mother to understand that we are only trying to help her, and we have her best interest at heart. That finally made it through her head and she agreed to give my sister and I access. That helped a LOT. I made a monthly calendar, printed it out and put it on her fridge, with all her appts on it and a copy for myself, since I take her to all her appts. That way she can cross them off herself, and be somewhat "in control" of her situation.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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