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In September, Mom came out of rehab with a DVT in her leg. The doctor in the rehab center prescribed Eliquis, and they sent her home. Last Monday (11/19), Mom's PCP sent her for a ultrasound and told her to make an appointment with a hematologist. Mom did not make the appointment because she was worn out from many Dr. appointments in October and November, and then her niece was visiting over Thanksgiving.


Today we finally got the ultrasound results, and she apparently has a non-occlusive DVT, which means the clot is still there, but it is not impairing blood flow. Her PCP will not renew the Eliquis script until she sees the hematologist. So today I made the hematologist appointment which is 21 days from today. We have enough Eliquis for 10 days.


I really don't think there is a big risk of the DVT getting worse until the appointment, but the whole episode has made me think that I ought to take over the task of scheduling Mom's Dr. appointments from now on. I had never considered doing this before; Mom has always been able to handle this by herself. She didn't want to see the hematologist and I figured that was her choice. But lately it seems to me that her judgement is lapsing. Maybe I should take on this responsibility, when necessary?

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There came a time in my mother’s care that I started attending most of her appointments with her. At that point they were scheduled by me since I had to take time off and travel. I was fortunate that here PCP was flexible enough that once we scheduled her Cardiologist that they would schedule for the same day. If she just needed bloodwork or other tests her younger sister took her. We carried a notebook to make any appointment notes and I’d update her wall calendar at home for her reminders. We were pretty successful scheduling around my work commitments, my sons needs and could usually get a Monday or Friday appointments because I spent the weekend with her.
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I think there are two related issues here. Should you schedule Mom's appointments, and should you or another family member accompany her to them. It seems to me that my sisters and I started going to all appointments with Mom long before we started doing the scheduling ourselves, because we realized that Mom was not always remembering what to tell the doctor or what the doctor told her. If the doctor asked "have you fallen recently?" Mom might say, "No, not in a long time." and not recall that only two weeks ago, 911 had to be called to get her off the floor. stuff like that.

I also agree with what moecam said about having to have a handle on her meds and symptoms if your Mom has to go to the ER (or even a new doctor). Mom knew what to take based on how the bottles were arranged on her counter, but make a list or explain what each pill was prescribed for. No.

All these things evolved sort of naturally, based on observing what Mom was doing and able to do from time to time. Bottom line: if you think you probably should be doing x for Mom, you probably should be doing x for Mom.
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For a while I had a small business where I drove people to doctor's appointments & generally they would ask me to come in with them - on the way home they wanted me to repeat what the doctor said because often the dr would go on to other items while they were 'digesting' the first & they often missed important instructions so that sometimes they really didn't understand what a new Rx was really for

I have wondered how often this happens & if this is an underlying reason for medicine mix-ups

I would suggest that you say to your mom that you want to help her get to all her appointments in a timely manner because you love her & want what is best for her however that it is necessary to co-ordinate that with your own appointments so that if you could 'make them in first place then nothing needs to be cancelled/changed due to conflicts .... as long as that is good for you, mom'

This way you will have a good handle on her health & medications should she ever need to go to the ER where the drs will ask these questions - also you can monitor those renewals are done on time by counting the days the pills should last then mark on a calendar 10-14 days before to casually ask about them needing to be picked up etc - fyi ... if there is a lot left she is not taking them properly
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My sister and I took over making my mother's appointments because one of us had to take her, so we wanted to schedule around our own availability. My mother accepted this with no problem, and I think it worked much better for us. And once the doctors got used to seeing us, they were comfortable talking to us if we had a question, such as whether a new symptom warranted bringing Mom in.

And yes there came a point where we had to urge or persuade her about certain specialists/appointments, and where we had to choose our battles and let her choose not to do certain follow-ups or consultations. In the end she chose to not have treatment for a blood cancer, and her doctor sent in hospice. I'm pretty happy with the way our choices worked out in the end.
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Yes. take over her doctor scheduling since she's not managing them correctly. I would be concerned about the Deep Vein Thrombosis.
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IMHO, yes but do it gently, ease into it at an opportune moment which may very well be right now. We were probably fortunate as I think about it, my mom did all of her own scheduling and all but my brother started going with her to most appointments. I think it started to happen more naturally after she had a couple blood sugar incidents that landed her in the ER because it gave him a reason to insist on knowing what was going on and making sure she followed directions. Then she had a stroke and we had to take over responsibilities, lots of doctors appointments because of her aphasia. Now even though she is back to living alone (kind of) my brother and I still schedule all of the doctors appointments and never let her go to one without one of us and she has accepted it all without too much push back (there was a time she thought she could go to appointments on her own again but can't drive anymore so...), we (mostly my brother) have also taken over managing her finances etc and she acknowledges that there is no way she could be doing this for herself. She asks in fact often how other people manage. But I think what really happened was once she it was happening and the burden of having to think about doing it all was gone she realized how much easier it made life.

Start going to all there appointments with her and then making or being there while she is making the next appointment and it may not be long before she has let you take this over naturally, without having to suggest she isn't capable anymore or any of that.
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Start looking for a geriatrician or a geriatric nurse practitioner who does house calls. Like children who need to see pediatricians, older adults need to be seen by a doctor who understands their body systems, how to adjust medication for them, how their signs and symptoms present, etc.
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busymom Dec 2018
Do they really have doctors who do house calls? Perhaps some states have these, but I haven't heard of any in my area. That would be a huge help to so many elderly people. Does Medicare cover the cost?

My inlaws could benefit from a geriatrician that does house calls. I may have to research this.
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You answered part of your own question. Rapport and comfort are everything with an MD. Dump the current one and get another.
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Gut reaction: I'd be checking in with the PCP and telling them there is only enough left for 10 days and you couldn't get in for 21. Welcome to the system. Idiocy. And then you have joined us on the slope of increasing responsibilities and hassles for the scheduling, advocating, reminding, praying they cooperate (the elders). It probably IS necessary, and won't NOT be from now on. Try to be gentle and reward yourself on those days you go to appts, and try to avoid them during flu and cold season and limit your risk to the germs in the offices! Sounds like a system where they might be churning up more business and it's something perhaps the PCP could handle. You might want the PCP to do a mini-mental to get some sense of her cognitive functioning and possibly a referral to a neurologist that specializes in older adults. We began our little "journey" without a road map and that was part of it...the appt stuff. Good luck.
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Perhaps you should take over your mom doctor's appt.

My concern is you have 10 days of Eliquis and the appt for the Hematologist is in 21 days and your mom has DVT and you think it can't get any worst! It can get worst. This can go south in the matter of minutes. Call her PC and tell him/her that your mom's appt for the Hematologist is in 21 days & if he/she could give her a Rx to cover the days until she can get to her appt.

I am not trying to scare you, but this is nothing to fool around with this is why her Dr is sending her to a specialist.

Good Luck!
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Shell38314, the appointment has been moved ip. The Eliquis will last.
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What are you waiting for?????
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jjmummert Dec 2018
I agree. My mom was quite grateful and I presented myself as her secretary. Now she is in skilled nursing, but I continue to refer to myself as her secretary/advocate. Mom and the staff love it.
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I think it's a good idea for you to do this.

After my mom forgot about a couple appointments (even when the dr. office would do a reminder call the day before), and when she did go I'd ask her how it went and which doctor she saw, she had a hard time remembering that very same night, I started scheduling all her appointments and taking her to most of them myself. This started about 3 years ago which was when she was diagnosed with dementia. Plus the dr. didn't want her to drive anymore due to both her dementia and also her Parkinsons affecting her reflexes, etc. So now I take her to her regular doctor, her eye doctor, her nephrologist, and also to get her 2x/year bone density shots. The aids that come 2x/day take her for any bloodwork that is need prior to her appointments, most times, unless I am in town anyway in which case I will take her for bloodwork also. I'm 2 hours away so for me to go there just to take her out to the hospital or clinic for a blood draw is a bit ridiculous when the aids can take her for those. I wish the visiting nurse that sees her every Friday to do her med box and take vitals could do the blood draw but she can't seem to find her veins. :( But I do take her to all her dr appts now so 1) I know she went and 2) I get the "full story" about her conditions since I can't count on her to tell me accurate info anymore. I schedule them all and put them on my phone as well as on a deskpad calendar that is kept on my mom's dining table for both her and her aids.

One time my mom had her appt with her nephrologist scheduled, which is hard to schedule because his appts have to be the first Wednesday of the month as that's when he is in the office that is in her city. And she got a reminder call from her regular doctor about another appointment on that same day, but in the morning instead of the afternoon. She freaked out and CANCELLED the nephrologist appt because she couldn't understand that having 2 appts on the same day at different times was okay. I had to scramble to un-do what she had done since the nephr. is hard to schedule. Luckily the nephrologist office called me otherwise I would not have known! Yikes!
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Can you call the provider that ordered the Eliquis and ask them to write you a prescription for 30 more days if you prove to them she has an appt?
Or maybe he can prescribe a cheaper injectable (Lovenox or Heparin) to tide her over.
I wouldn’t skip the Eliquis EVER with her having a documented clot and neither should the PCP so they should work with you.
Good luck!
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She has a sooner appt. Its up top.in comments so they have enough meds till then.
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I hesitate to suggest this, because I well remember how you can end up feeling you have both a specialist and a prescription (or ten) for every single conceivable body part, but the one person who managed to pull everything together (not counting our excellent GP, who referred us to her) was the geriatrician.

It's just that you could easily end up with not only the haematologist but also a vascular surgeon and an orthopaedic surgeon and a neurologist all wanting to chip in their two cents, quite apart from all the appointments that have already put your poor mother off ever seeing another doctor as long as she lives and which are going to need follow-up. One person acting as ring-master can be a real boon.

A small hospital in the extreme West of England is rather far for you to go to see the lovely Dr Alner; but this lady collated all the existing notes from cardiology, neurology, renal, PT, orthopaedics and haematology; ordered investigations which found out some useful things; and came up with a co-ordinated plan focused on quality of life. So if you can find a geriatrician (gerontologist, in the US?) with a similarly pragmatic but sympathetic approach, hold tight to that one. Would your PCP perhaps recommend one?

You might want to ring the PCP meanwhile and ask whether you ought to be doing anything about the more affected leg - keeping it elevated, keeping it mobile, or what.
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Yay! - well done you with the appointment :) My friend has a gesture of licking her index finger and chalking up a point on an imaginary board, but I don't think there's an emoji for that!

If your mother has arthritis then PAD wouldn't be my first thought, I must admit, I'd be wondering about her spine - not that I'm qualified to know. Does anything help to relieve the pain or improve the sensation of numbness? Was this happening before she had the fall, or only since? Is there actually anything to see?
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Countrymouse, yes, she had the pain before the accident, and I think it was a contributing factor. She describes her feet feeling "like lead," and therefore cannot balance well. It is in both legs, not just the arthritic one.
Her left ankle (the leg w/ the DVT) can get swollen, usually after a lot of walking, although sometimes it is swollen when she wakes up. I suppose it is possible that she injured her spine when she fell?
Thank you for the advice on becoming a secretary. Really, I don't think she will push back on making her appointments. She was thankful that I handled the hematologist thing. The hard part may be getting her to agree to go to the doctor!
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Hm.

What caused her to fall and break her hip, is the question... once you start following the trail of breadcrumbs back, you can find that with wonderful 20:20 hindsight you spot a lot of problems that weren't obvious at the time.

With her medications and appointments, I would strongly suggest that you make it all or nothing. If you only help out when necessary it leaves too many potential gaps in the communication chain.

In order not to make her feel you're bossing her around, duplicate diaries, or make notes in her diary, and continue to consult her in everything; but make sure that nothing happens without your knowledge. Reassure her that you are acting as her secretary - but any secretary worth her salt Needs To Know Everything!
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She fell because she is very unsteady on her feet. She often complains about her lower legs aching and feeling numb. She also has very bad arthritis in her right knee. She uses a walker now.
I'm thinking it's may be PAD or some circulatory problem. And I'm hoping the hematologist can help us out with that.

PS. I got the appointment bumped back to 12/13!
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Are you (or someone else) going with her to appointments to make sure she is understanding what she is being told?
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I go with her into the dr's office. She understands what she's being told, she just does not always want to do it. She does not have a great deal of respect for the PCP, and after sitting in on the appointments, neither do I. He has a "conveyor belt" approach to medicine.
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If I were you, I'd push for an earlier appointment with haematology.

The reason the doctor won't renew the px without it is that it is critical to check your mother's on the right dose. If the clinics still work the way they did when my ex was doing them, you can reassure your mother it's a quick in-and-out with nothing to fear - but it is vital.

How is she doing in herself? What landed her in rehab?
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She fell and broke her hip in August. Since then she's lived with me. She often seems weary and confused. She's always made her own decisions, but I'm thinking it's time to intervene.
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You know your mother better than any of us here. Do you take her to the appointments or does she go on her own?

Please follow up on the RX, DVT can be deadly. The risk of her not being on the blood thinner for 11+ days is too great in my mind.
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