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I totally understand what you are asking. I just took Mom to her cardiologist.. she goes 2x a year. Last visit we saw him for about 3 minutes.. ( I timed it.. the tech took about another 5 to get her EKG and ask some questions) Same thing this time. No changes.. there have been no changes in the 4 years she has lived here. But it took me about 30 minutes to get her and her rollator into the truck, and 30 minutes in the crowded waiting room.. I am about done with it. Her GP can handle her meds, and this is an ordeal for her. Same advice,, cut the salt, quit smoking ( not gonna happen).. But she loves Dr Hottie.. so what do we do ? She has already told him and us she wont do anything if something comes up..
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gkcgkc Jun 2019
That sounds awfully familiar! My dad's cardiologist appointments go the same way. Thanks so much for sharing your experience, it's an uphill battle isn't it?
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We had the same issue with my mother, who died last year. She got sick of going to so many doctors, and some of them she plain didn't like and refused to see. My mother was a very stubborn woman - you had to pick your battles carefully with her. And honestly, many primary doctors seem to think their job is to refer patients to specialists for every little symptom or abnormality. In her last few years, my mother was regularly seeing a dermatologist, neurologist, orthopedist, gastroenterologist, hematologist, cardiologist, nephrologist etc in addition to her regular doctor. She died of lymphoma but she also had arthritis, kidney disease, AFIB, coronary artery disease, diabetes, stomach ulcers, normal pressure hydrocephalus, and an assortment of other maladies.

We pared down my mother's appointments and specialists quite a bit during her last year or so of her life. In fact, one of the reasons she agreed to hospice is that it was an end to all those doctors' appointments, procedures and tests. She was even more sick of it than my sister and I were. She wanted to sit in her chair and read mystery novels and eat crackers. We pushed her only on things that were fairly acute and potentially curable, such as infections and obvious gastric bleeding.

There's no one right answer to this, but I'm satisfied with the choices we made for and with our mother, including foregoing certain referrals and treatments that would not have made a real difference for her in the long run.
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gkcgkc Jun 2019
It sounds like you did a great job caring for your mom, thanks so much for sharing your experience. It's certainly challenging, but I hope I will be satisfied with my choices at the end.
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My mother was just in the hospital for pneumonia 2 weeks ago and is now in rehab. She has had bad neuropathy in her legs for the past 20 years, which has caused all sorts of issues like falling, vertigo, and chronic pain. So, the neurologist came to see her, as is the norm in all of her hospital stays. She said the same thing all the rest of the neurologists have said in the past: Gee whiz, there's nothing we can really do for you because nerve damage is irreversible, yada yada. However, please be sure to schedule a FOLLOW UP APPOINTMENT after you are discharged from the hospital. Um, what for, exactly, is my question? This neurologist cornered me in the foyer of the hospital on my way out to the car, believe it or not, asking me when I planned to make this follow up appointment!! My mother is 92 and wheelchair bound, and incredibly difficult to schlep around. I can't do it alone, which means my husband has to take time off from work, and then we have to pay a gigantic bill, and for WHAT? This doctor looked at me like I had two heads when I asked her why I needed to schedule a follow up. Well, she said, so I can follow your mother's neuropathy, of course! Follow it to WHAT END?

My point is this: I don't think it's necessary to take your folks to tons of doctor's appointments, just as I don't think it's necessary for me to take my mother to this neurologist's follow up appointment. Palliative care should be considered at this point in life because let's face it; once dementia (which my mother has a 'moderate' case of) sets in, the quality of their life is drastically diminished. Add to that all sorts of other health issues and we can literally be at the doctor's office 5 days a week, with an occasional weekend at the hospital thrown in.
Just today, my mother was talking about all of her sisters and brothers who have passed away, and saying that her mother is always with her these days. She said she hopes to join them in heaven sometime soon. I hope she does too. Not because I want to be rid of her, but because the quality of her life is gone, and her pain & suffering has reached a very high level. Enough is enough. Try not to feel angry or guilty about your feelings, just accept that palliative care is the best thing for your folks at this stage of life.

All the best to you as you pass through this difficult time of life, my friend
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gkcgkc Jun 2019
Oh lealonnie, how I feel for you. Thank you so much for sharing your experience, it's really a journey isn't? A journey not for the faint hearted. I'm definitely going to learn more about palliative care, I feel like I've gone into caregiving with zero knowledge, but I suspect most of us do. Sending you good thoughts and strength.
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gkcgkc Jun 2019
Thank you so much for the information. I only started caring for my parents 9 months ago and navigating their health care is like a mine field! I'm not sure what I need to be preparing for and how to switch to palliative care so I will probably start another thread asking for guidance.
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Keeping in mind that the medical industry is a business! You can choose whether you want to participate in all that business offers or decline. I would certainly say with the conditions you mentioned, I would be talking to her PCP and closing out all other doctor visits, except if you needed something for pain relief. I’ve taken care of a mother-in-law and an aunt and the only appointments that we attended in their latter years was with their primary care doctor or as needed for pain relief. This is where Hospice is a godsend, so that you can stop leaving your house just to help them be comfortable, offering any pain meds available as needed. It seems to me that once you approach 65 the medical industry views you as the goose that laid the golden egg, the more complications you present the more money you get them. You can play that game if you want to, we did not. Mother-in-law lived 10 years with Alzheimer’s very comfortably, seven in our home, she only saw the doctor three times while in our home then I brought in hospice for the last three years. Aunt lived in our home just short of four years with Parkinson’s that she had had for over 15 years, vascular dementia that she had had at least for three, congestive heart failure. When she first moved in she had to see five doctors I quickly put an end to that and we continued only with her neurologist to help manager her Parkinson’s symptoms, who we would only see once every six months instead of every three as he wanted. Just because Medicare will pay them and they have an amount of visits theyll cover doesn’t mean you have to go that amount of visits.
take charge of your life and what health is left and just say, NO!
I refused as a caregiver to sit in a waiting room and see a doctor to have their weight blood pressure and BP checked have a doctor look at them for five minutes and announce, everything‘s fine come back next month. I know they were getting a check from Medicare for that service but I did not have to be part of the game!

Now I manage care for a client (87) dementia, whose children want to take care of and fix every problem. She visits every specialist on the planet and is at the doctor constantly. I’m paid by the hour if that’s what they want. when they ask me I tell them, “frankly your mom is 87 we cannot fix the problems that she has”. They are just not ready to hear this, and they are still wanting to give me the appointments to take her to and payment for my time, so I indulge them! Their mother their choice, my job!
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gkcgkc Jun 2019
Thank you so much for sharing your experience, you sound like a godsend as a caregiver! I wish I were so confident as you! :)
I'm going to start another thread about hospice care and how/when to go about it.
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If I tell you "No, don't take them to their doctor appointments" and then they have medical emergencies, it's on me. So I refrain as I am no medical professional. However, I am an over 72 year old elder and I never miss a doctor appointment, EXCEPTION to the rule - I missed an ear doctor appointment and when I finally saw my ear doctor quite as soon as I could, I had an infection brewing!!
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DH and I are deciding for ourselves when to take up repeat appointments. DH cancelled one recently which was a second follow-up with a specialist who removed a bit of metal from his eyeball and charged like there was no tomorrow. DH decided that he didn’t need to pay another $250 to be told after 5 minutes that it had healed up nicely – he could tell that himself. I cancelled an appointment for an in-depth breast examination, which a locum insisted on making after reading the mammogram report. It said that I had felt a bruise but they could see nothing on the X-ray. I had already worked out that I bruised it myself when I went to sleep on a bra underwire, and there was no need to check based on what I’d said I felt.

So we normally err on the side of caution, but we use our common sense about when to follow doctors’ advice. I’d suggest you do the same for your parents. Some follow ups are clearly unnecessary, some are just a way to make more money from something that is well and truly over, and some are to check for something that isn’t sensible to follow up anyway. Don’t feel guilty for using reasonable judgement yourself.
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gkcgkc Jun 2019
Thank you so much for sharing your experience. I'm so often confounded by the many "follow up" appts which end up being 5 minutes and "see you next time".
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Given their ages and conditions, I would personally speak to the doctors and say an appointment is fine but it cannot be so frequently. Confirm just what you are dealing with and projected time before passing. Based with that information, you determine what is reasonable and YOU make the appointments and handle the schedules - the rest is up to God. Perhaps annually might be a good start. If there is nothing that can be done, it is insane to go to so many appointments.
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Thanks so very much everyone for your kind and generous responses. I was so lost until I stumbled upon this forum (just last week!). I was feeling very alone and now I don't feel that way any longer.
There is a treasure trove of experience on this forum and everyone is so kind to take the time to share. It strengthens me. {{{hugs}}}
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My mother recently turned 82. She has had severe high blood pressure for at least 40 years (top number runs over 200). She has went to doctors off and on over the years and ended up stop taking her meds and stop seeing the different doctors. Recently she went to an eye doctor to replace lenses in her glasses. They found cataracts and glaucoma. They told her she would need to see her regular doctor to get a release for cataract surgery. She found a doctor and I started taking her to her appointments for her high blood pressure. One of the meds that were prescribed put her in the hospital for four days because it washed the sodium out of her system. While she was in there she saw numerous doctors and a renal specialist. She has had a battery of tests either before, during and after her admission and they can not find anything wrong. During a five week span (including her hospitalization) she has had 16 medication changes, numerous runs to the lab for blood draws and a least 2-3 appointments a week with various doctors. The nepherologist put her back on a diuretic that can wash out her sodium. I noticed her symptoms right away and after a blood test (it was low again)she stopped taking the prescription. Then he prescribed one that they usually start in a hospital because it can cause massive heart problems. She now is refusing to see the nepherologist. I have a strong feeling that she will no longer treat her high blood pressure (which so far is better on the three drugs she is willing to take, but not normal) as soon as she gets the o.k. to have her cataract surgery. On top of all this she has been showing signs of dementia even prior to all of these appointments and it seems that all the med changes and coming and going is increasing the symptoms.
Even though we are all taught that doctors knows best, they are all very fail-able. Bottom line is I can't force her to go nor can I force her to take any and all meds prescribed so when that day comes (and it will) I will not make her go to the appointments that she doesn't want to attend.
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AlvaDeer Jun 2019
You are so correct. As a nurse I saw so many patients suffering from the side effects of over medication.
They would have high pressure due to anxiety in office, be given medications, fall over after getting up at night to pee. Be given surgeries not needed even, and certainly tests. They are the cash cows of the system and get passed from doctor to doctor.
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I think you should take them to their appointments, let each doc know how they feel, and follow the doctor's advice.

I stayed out of my mom's care and now we both deeply regret it - she was just diagnosed with breast cancer and even at 84 wants to fight it within reason. If I had been more pro-active, she would have been getting mammograms every year, along with other maintenance care.

She didn't want to "fuss" and her primary let her get away with it. Now she wishes a little more fussing was done during those years.
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I havent read all the responses but have to suggest
you ask the BIG ... WHY.. whne you next go to an appointment
It seems specialists are scared of legal implications if they say, dont bother coming..
your parents sound like mine were a good decade ago, luckily we dont live in the land of health means money.
so if one has macular degeneration and there is nothing to do then really all that should be needed is the right to attend if any problems arise. I just see your post is one that your parents are being bled to death $$$ and energy wise for no reason and they dont want it anyway.
You are not being negligent you are being practical.
Good luck and hope the non necessary stresses get reduced
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