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Mother is in LTC - Nursing Home. There are times when she must go see a specialist doctor, outside of the nursing home, for an existing condition, a test, or a new medical issue. I have to go with her; she is hard of hearing, she will not be able to remember why she is there (I am her "memory"), and she needs to be taken in a transport van because she's in a wheelchair with continuous oxygen. It's a nightmare every time, because it takes me 45 minutes drive each way to go to the nursing home and then for me to get back home, and half the time the transport van is late or doesn't show up at all. Cannot control that; it's free, from Medicaid, so you get what you pay (don't pay) for. But I do it.


Every single time she calls me in the morning and says she doesn't feel well and does she really have to go ? Sometimes, if she sounds very desperate, I say "no" -- as long as I know it's not an emergency appointment. But, I cannot cancel the same doctor twice. If you do that, they will not reschedule you.


Today, again. She called me early morning. Wanted to cancel same doctor that she insisted on cancelling a month ago. I said she HAD to go. All the doctor does is specialized blood tests which he analyzes right there -- it's for a blood issue. But not the kind of blood issue they can diagnose in the nursing home.


Cannot hire even a trained CNA to go with her because then nobody will be able to answer the doctor's questions and nobody will remember what he says.


I am so tired of this. I have to go through the same conversation and encouragement and convincing every time. And, then the nightmare of the transport van and her complaining the whole time about how long she has to wait for the doctor, and the van to come back.


Help, please. At what point do I just throw up my hands and somehow get it on file that she is refusing medical treatment if she insists on cancelling or keeps begging me to cancel. I am her POA and medical proxy. But, she is not declared incompetent or incapacitated.

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"Wanted to cancel same doctor that she insisted on cancelling a month ago. I said she HAD to go." Your mother made it pretty clear to you a month ago that she didn't want to go to the doctor.

Stop scheduling outside doctor's visits and let the nursing home handle her care. Work out a plan with the nursing home about what will and will not be done for your mother. You are her POA and health care proxy and can make decisions for your mother including setting limits on the poking and prodding; she's probably sick of it.

Focus on her quality of life.
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Reply to NYDaughterInLaw
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We had this problem with my mom too but not just over medical appointments, her problem is having to prepare or think about the process of getting up and going to the doctor or any appointment, even ones she looked forward too, made her so anxious she would often cancel or simply be too worn out by the time came. She was always trying to wiggle out. We learned to just not giver her time to get so worked up about it or decide to find a way out, we tell her the night before if it's an early morning appointment or the morning of if it's late enough, just enough time for her to shower and wash her hair if she feels the need. We always make the excuse that we just realized this appointment was today or forgot to tell her, previously I would tell her about upcoming appointments a couple weeks ahead and if she hadn't written it down she forgot anyway and then I could say I told you about this a few weeks ago or when I scheduled it, sorry I forgot to remind you. Funny aside, I over heard her telling her sister about this, that we don't warn her until the morning of a doctors appointment but that was so she wouldn't get so anxious and while she didn't like it because she likes to make sure she has clean clothes, it really is better for her. Made me feel better about our regular ruse now.

Maybe you could do some form of this, make sure the care facility knows about the appointment so they know when to get her ready for what but you call her before you leave or something to let her know you will meet her there and if she's resistant you remind her why this one is so important, it's the specialty blood draw that they can't do there and the only way to ...whatever benefit the test gives her...so it's an important one. Maybe you thought you told her the last time you spoke, maybe they just got a cancellation and it worked better in your schedule or maybe you just forgot all about it until you got the reminder call but it's worth a try to see if giving her less time to think about it and pull out helps make these appointment's happen. The other idea I had is can you ride the van with her, leave your car at the NH meet her at the van, ride with her to and from the appointment, maybe do something special while waiting for the van, lunch, ice cream something if it really does take that long to come back. This may not be practical for your day, I get that just figured if it could fit it might be worth it. My brother takes my mom out to one of her favorite places for breakfast or lunch after appointments as another thing to entice her and make it a good excursion rather than just a doctors appointment.
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anonymous903302 May 22, 2019
Thanks Lymie61.

The nursing home, after a few rough tries, finally has it right. They get her ready and make sure she has lunch -- we always schedule the appointments for 1:30 pm or later so she can eat lunch first, and also because she won't do anything in morning. If we're running short on time, they put a sandwich, chips and beverage in an insulated lunch bag for her and she eats it while waiting at doctor's office.

I always go in the van with her. I get to the nursing home about 45 minutes before the van is supposed show up, to make sure she has what she needs to bring; a book to read, for example. I have to go in the van. There is one oxygen canister attached to her wheelchair but I have to bring a back-up canister in a rolling holder. Any time the van is late (coming or going), or the doctor runs late, I end up having to switch to the back-up canister. Once, the van was so late coming t take us back that both canisters were low and I had to bring her back into the doctor's office and beg them to hook her up to their back-up canister!

Hard to make it any kind of excursion. Reliant on the transport van, because of the wheelchair and the oxygen. Cannot take her in my personal car, even if use a portable wheelchair because then oxygen would not be attached and would have to use two canisters in rolling carts! Impossible. And, most of these doctors' offices are located in separate buildings from hospital and there's no cafe or even vending machines. So I bring candy and snacks in my purse.

Anyway, over time, I have said "no" to follow-ups with some specialists if a test has been done right at the nursing home and the nursing home tells me there have been no changes, so my attitude is why go back to the specialist just so he can say "no changes?" It's only the times when the testing must be done by the specialist that I say "yes" to going. Or if it's a new medical issue that the primary at the nursing home says they cannot handle, or if an existing condition is getting worse based on symptoms and the primary at the nursing home won't do anything unless we go to a specialist.
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I agree with Barb. Once Mom was in a NH it was sort of maintenance. After 2 yrs of every six months, when the thickening in her upper stomach didn't change, stopped the doctor. Stopped the urologist. Mom was 89, bladder cancer at 80. No return of cancer. Used facility dr instead of PCP. They get tired of being poked and prodded. Mom had Dementia so if she did get cancer, we weren't going to do anything. It would just cause her pain and discomfort.
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Does your mom really have to go to these appointments?

At some point, it's time for palliative care. In other words, if they cant do it at the NH, you don't do it.

After a point, I realized that taking my mom to those specialist appointments was doing more harm than good.
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anonymous903302 May 22, 2019
Thanks Barb. I have eliminated some specialists already. And, I'm adamant with the nursing home that any testing that can be done there must be done there, and that we are not doing follow-up visits with specialists if a new test is done and there are no changes from last time. It's a long process however, because she has been in the nursing home for 18 months and before that she was seeing at least 6 specialists for annual or semi-annual testing and follow-ups; different medical reasons. I really could not just stop all that without knowing that she had not gotten worse after moving to the nursing home. For example, she used to have a cystoscopy every year because she formerly had bladder cancer, and I could not just stop seeing a urologist without knowing whether there was any reason for continuing those annual procedures.

I guess we are already using palliative care for her biggest issues already, because her neuropathy is treated at the NH, as is her COPD and extreme anxiety.

Beginning of April. after she was complaining about chest pain (really pain in upper abdomen, not chest like heart attack pain), she went to the ER and stayed in the hospital for 3 nights, and they did every test imaginable. They found NO reason for the pain. She says she still has the pain sometimes, but now I know there's nothing we can do about it except Tylenol.

Thanks again!
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As our parents get older this is their life - home, tv, eat, bathroom, doctors, blood tests, medication - repeat. Sometimes it just becomes too hard because you go and everything is good so you come home and its tv, medication, eat, bathroom -- repeat. Nothing changes and there is no drama so yes complaining and arguing about something brings in the drama. I have said this many a times in previous posts... bribery works everytime! I can get my daddy to do just about anything... not everything... but just about -- with a bribery of a treat - candy, ice cream, cake, pie, etc. I'm happy he's happy and bam we go on with the day.
Blessings
hgnhgn
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I would talk to the doctor affiliated with the nursing home. Ask if he would be able to work with the specialist. Blood work can probably done at the LTC and sent out to a Lab. Doctors offices do it all the time. Have the results sent to the Specialist. He can then contact the NH doctor with any changes that need to be made.

Have you told the specialist what you have to do to get Mom there. Is it really necessary? My Mom had Graves desease. She had been stable for a year. Specialist agreed that as long as a blood test was done regularly and her numbers were good, the facility Dr. could administer her meds. Any problems, I could bring her back.

Its hard to look up previous posts because they get mixed in with ones you respond to. How old is Mom? Seems to me she doesn't want to do this anymore.

Please put some info on your profile. Helps us alot.
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