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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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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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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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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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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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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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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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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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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 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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