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I feel like Mom's primary doctor is winding her down. She isn't interested in any more blood testing. She doesn't think it is important to take any medications except for her prescriptions. Mom has stopped seeing her cancer surgeon, oncologist, ophthalmologist and dentist. The doctor wants me to change her pacemaker to remote monitoring. She is 91 and has late-stage dementia following a massive stroke in July 2014. She needs assistance with everything she does. I am her 24/7 caregiver. Her doctor hasn't made another appointment because she doesn't know if Mom can get there. I feel like I am just left alone with no support if something happens. I don't know if this means she thinks Mom doesn't have long to live or if this is normal in her age and condition.

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The mission of the cardiologist's practice is to maintain and extend life. They encourage life style changes. They send patients to training sessions. They use any and all technology that may add to life expectancy. So it is not surprising that they may resist the recommendation of a geriatrician, who has a different mission.

My husband Coy had a pacemaker and defibrillator. At an appoint with his cardiologist he said he wanted the defibrillator removed. The doctor was clearly shocked. Why? Coy explained that he had a DNR designation and he did not want to be resuscitated by an electronic device either. The doctor brought his stool over and looked Coy in the eye. If you started to have a heart attack right now, wouldn't you want me to revive you? Coy looked him right back and said No. He also said he would rather die of a heart attack than from dementia.

The doctor said he should go home and think about this some more. I pointed out that Coy had been thinking and talking about this for a couple of months.

Well, OK. But the doctor wasn't going to subject Coy to a surgical procedure for just this. His battery needed to be replaced in a month, and if Coy still felt the same way he would remove the defibrillator then.

After that surgical procedure, the doctor came out to tell me all went well. He also said, "I've been thinking about this a lot. I think you made the right decision."

John, the cardiologist may prefer in-person appointments over remote monitoring. That does not necessarily mean that is the best thing for your mother at this point in her life.
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Oh, John, I know what you mean about being talked down to and not getting recognition for your critical role. As more and more of us take on caregiving roles, medical schools should definitely be addressing this. Then at least newly graduating doctors would maybe have a clue.

I was very fortunate in that all three of my husband's primary doctors considered caregivers as "care partners" and an important part of the team. Other specialists he saw was where I encountered the talking-down or just ignoring me. Believe me, being treated as an important member of the team is way better than being ignored!

Does your mother's clinic have an online site for patients? Mine does (called "my account") and in your place I would use it to send a list of my concerns to this doctor. I would also ask if there is a time you could see the doctor in person. (This may not be possible because of privacy laws, but ask anyway.)
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Week old roadkill...............really?
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I was hoping the PCP would provide more clarity about what she thinks about Mom. I chose her because she has geriatric experience. On our first visit she said she would tell me when hospice or another approach would be appropriate. It is hard to say much in the time allotted. I would go and talk to her alone if they would allow that. My Mom has a very long list of medical conditions that she has been diagnosed with in the past few years. She has struggled with health issues literally since she was born. I appreciate the input from AgingCare. No one seems to care about the caregiver. I feel like I am the least important part of the equation. I know Mom's needs better than anyone, but I get talked down to by doctors and nurses who really don't 'get' the situation.
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John you need to talk to the PCP again. It's this part: "I don't know if this means she thinks Mom doesn't have long to live or if this is normal in her age and condition." Ask! It's not an unreasonable question!

If your PCP is already approaching things from a palliative rather than curative point of view, and aiming to reduce the burden of interventions on your mother, then I expect she would actively welcome your addressing the issue. Doctors hate bringing up the subject of end of life care because they are scared of shocking or distressing patients and their relatives; but the fact is you need to know. Start the conversation.
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I would say that your mother is not simply elderly. She is 91 and has late-stage dementia following a massive stroke in July 2014. In addition she apparently has/has had cancer and has a pacemaker.

I am sorry to say it, but dementia is a terminal condition. Many doctors would feel that no further blood work or other tests is warranted because no further treatment would be advised. You deserve a clear explanation from her doctor, and if you are not satisfied you are welcome to seek another opinion. (I suggest a geriatrician.)

Palliative care or hospice seems appropriate in late-stage dementia.
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Unfortunately many doctors treat the elderly like their week old roadkill. It's very, very frustrating.

Is there an option for palliative care? You can still take your loved one to all doctor appointments, such as the cardiologist, while on this service. Palliative care requires monthly visits from a nurse case manager. And if/when she does qualify for hospice, the transition is easy to go from palliative care to hospice within the same agency. Let's say, for example, suddenly she becomes ill, is coughing up a storm, is running a very high temperature, and is too weak to get into the car to go to the doctor's office or to the ER. If she were on palliative care, then she can get immediate diagnostic testing in her home, like x-rays,  ultrasound, bloodwork and the palliative doctor can either take over her entire care or work with her PCP - or the palliative doctor can become her new PCP (and you just take her to the cardiologist and any other specialist as needed). She'll be prescribed medication and PT, if necessary, in the comfort of her home. If the same scenario presented itself and she wasn't on palliative care, then she'll have to go to the ER via ambulance and may have to be hospitalized for a good number of days, then go to a skilled nursing facility for a number of days and could become worse while at the SNF because she's constantly surrounded by very ill people and the place is full of nasty bugs all of which will prolong her stay even longer, then maybe go on hospice and hospice doesn't do the above diagnostic testing. My recommendation is to extensive research to find a good palliative/hospice agency. There are so many. Talk to them about what options are available for her and how does palliative care work (if you're not familiar). Don't go with the first one because it can be difficult to get off and then back on service. Network. Talk to the cardiology office and ask them if they know of a few good palliative care agencies. I'm sure they've serviced these types of patients before.
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My aunt is 90. Her primary was so disengaged, I wondered if he was depressed. After about the third difficult situation where he just didn't step up, I found her a geriatric primary who we are both very pleased with. I receive a lot more feedback, a quicker response and no waiting. I have also discovered that an urgent care very near her house has also been a huge time saver and relieved my anxiety for a cold and a UTI when I didn't want her to be sick over a weekend. If two drs tell you the same thing, it might be easier to accept but her current drs fear of her not keeping an appointment is a little too efficient for me.
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The reason the PCP says she isn't interested in blood tests any more is because she says if something was discovered no action would be taken anyway. I talked with the cardiologists office. They said that the PCP is wrong, that pacemaker remote monitoring does not take the place of the office visit. They will set me up with the remote monitoring, but I still have to take her in to the office.
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JohnK, there are Physicians that make house calls if it does develop that Mom can't make it to visit the doctor. (do a computer search for your region). In Memory care, the MD would see a resident twice a year or more often if there was an issue. (Likely the periodic visit was a state regulation). With late stage dementia, everything is a challenge - from drawing blood to getting someone to a doctor's office. And when I brought my Mom, I found that the retina specialist had NO idea of how to talk her through a procedure. In some respects,it does seem unnecessary unless there is an issue.
If you think she is ready for hospice, ask the doctor to approve a hospice evaluation. Call the best hospice in your area and ask them to do the evaluation. Once on hospice, there is a lot of support for you and your Mom. In my area, hospice sends an aide 2 hours a day, five days a week. A nurse comes about every 2 weeks, more frequently if needed. Spiritual counselors came for the patient and the family. There was a 24 hour hotline with a nurse for any issues. It provided extraordinary support. Get a list of hospice services for your area and call each one to see what services they provide. There is no additional charge for this if Mom is on Medicare. Good luck
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I was once as frustrated as you because it seemed that once we weren't focused on curative medicine the system didn't know what to do with us, I was often encouraged to put mom into a nursing home and the lack of medical support had me seriously considering whether it would be best. I finally got my mom admitted to palliative care, which provided quality of life focused medicine, a doctor willing to make home visits and a nurse monthly and on call when needed, it also included the necessary paperwork put in place for death in the home. I'm not in the USA, but I have read on this site of others opting for palliative treatment for those who do not yet qualify for hospice, you might want to check out what is available in your area.
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John K, congratulations to your uncle - but he didn't have a massive stroke and he doesn't have late stage dementia.

All the same, I take your point that your mother is just as entitled as any other patient to person-centred, conscientious medical care. So, talk to the doctor. Ask her to explain her thinking and her clinical decision making. I think it is very likely that once you have discussed this thoroughly you will perhaps come to agree that it is in your mother's best interest not to be forced through more and more medical hoops for less and less benefit - but meanwhile, you're not satisfied and you are entitled to a clear explanation. I hope you'll get one.
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Katiekate, I have heard that a lot. "Well, she's 90." I'm not sure what that means. Her brother will be 102 in September and he has no medical conditions or health issues and takes no prescriptions and lives alone.
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I think this is common. My Mom is 90. It is a big deal to get up dress and out to any appointments. For those days I have extras help with the wheelchair.

No one seems to know what is happening with Mom...no one has found a medical reason for her steep decline lately.

I guess it just is what it is. The answer seems to be. "She's 90"
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