Frustration with doctors

squirrelspurMarch 26, 2011

My mother-in-law is living in another state. She has metastatic colon cancer and discontinued treatment about 1 year ago. She has been living on her own (in her early 90s) and doing well until recently. My husband went up and got her caregivers to come in a few hours/day. She started to complain about having trouble breathing. Her regular doctor would not see her until her regular apt. time 2 weeks on and said "Take her to the emergency room if you think she needs it." Well, she ended up in the hospital because she had pneumonia. Her oncologist, who also refused to see her before her regular appt. (apparently he takes blood samples regularly but doesn't say anything about them), then came to the hospital and did a CT scan. At the time, his nurse practioner told us she only had 1/4 lung capacity left . She gave us a vague prognosis of 6 weeks but then backed off on saying it was accurate. Now the oncologist wants to see her next week.

Her regular doctor now put her on oxygen. She is in a nursing home but I will go up there & take care of her at her home.

I feel like these doctors are seeing her regularly & getting money for it but when it comes down to it, they aren't telling her or us what is going on or putting her care first.

Has anyone else had issues with doctors like this?

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squirrelspur

I forgot to mention that mentally she is sharp as ever.

    Bookmark   March 26, 2011 at 9:35AM
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asolo

Absolutely. There are care-less doctors just as there are care-less people in any other profession.

We had one back '95. A home-care nurse working with us under his license called him describing an emerging crisis. He was minutes away for us, but he refused to see her. The nurse called three times and he still refused. Ended up in hospital....where he still refused to see her. Essentially signed off entirely. Everything went bad. We brought her home to die. Found another doctor willing to manage her passing.

Expecting to die, she stopped taking all her meds.....and began recovering. New doc adjusted meds after a short hiatus and here we are doing fine 16 years later. First doc was, basically, killing her with his meds and inattention.

Don't know what going on in your situation but you certainly need more careful attention than you're getting. If you're going to be home with her on oxygen you'll want to get a pulse-oxymeter and BP machine so you can keep track. Suspect you may be getting into lasix and coumadin and digoxin, too, if you're not already (of course don't know, but suspecting)....in any event, you need to find someone who will work with you so you know what's going on and what to expect. If you're going to be in charge, you need to know what you're in charge of.

    Bookmark   March 26, 2011 at 12:41PM
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sushipup1

As to where to find such a doctor, talk to your local hospice groups. Our experience was that many doctors don't visit nursing homes at all, and only a few doctors will do so. Not that those are all good doctors, but it's an observation. We were lucky to have a great doctor for my mother who also saw her in the nursing home.

As to what the NP said, no one can give accurate information about how long a patient may have. Don't press a doctor or nurse for this info... they don't know and it will only give you a false sense of things. Look beyond that.

A recent study found that, as a whole, such prognostications are overly optimistic. If the doctor says 4 to 6 months, for example, 4 months was the average time before the patient died.

Another hard thing to grasp is to ask yourself and your MIL what you both expect out of the last weeks or months of her life. If you haven't done so already, start talking. Understanding her wishes and her level of discomfort help to make the last few weeks or months calmer for the both of you.

    Bookmark   March 26, 2011 at 1:04PM
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jannie

Yes, speak with Hospice Center. They'll give you good advice.

    Bookmark   April 25, 2011 at 8:16AM
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squirrelspur

I took her to her home & have been w/her for 2 months now. The hospice people recommended some doctors that work w/them & she has a new doctor who is very good and understands hospice patients.

She has outlived a diagnosis of 6 weeks & has actually gotten much stronger & is enjoying life although her longterm outlook is not good.

    Bookmark   May 30, 2011 at 9:52AM
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asolo

"....her longterm outlook is not good."

Have to laugh at this....been through so much of it......NONE of our "longterm" outlooks are good, actually.

What you described is not uncommon. I have a neighbor right now who's at home under hospice care. Started three months ago. He was "supposed" to be dead within weeks. Rejoiced when able to stop taking his meds and has been doing very well on oxygen plus nothing. Of course he's going to die soon but there's no telling how it's going to go from person to person.

    Bookmark   May 30, 2011 at 10:48AM
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agnespuffin

I am curious as what you expect as "longterm." At her age and with her condition, the end could be tomorrow. Her doctors really can't do anything to improve her state. About all they can do at this point is to see that she is as pain free as possible.

This is one area where I feel for the doctors. The family wants to know what's going on and when things will happen. Doctors can only guess. The smart ones keep their mouths shut. Each patient is so different from the next. There is little or nothing that can be done from the office. If her condition begins to worsen, take her to the Emergency Room. They will be able to start hospital care immediatly and coordinate with her doctor.

It sounds as if you are doing an excellent job. Keep up the good work and let her enjoy each day as much as she can.

    Bookmark   May 30, 2011 at 11:06AM
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squirrelspur

I don't really expect anything as longterm..good points. I don't know how long she will live and we go day to day...given up on getting any specific time frame. She is just amazing the hospice nurses with her progress & pain-free state.
She is very determined (doing physical therapy exercises, trying to walk with a cane instead of her walker) & somewhat in denial...but if denial works for her at this stage, so be it. She has bought a lot of new clothes to fit her smaller frame, lots of plants for her garden....has a very hardy appetite (it makes me laugh because she eats everything doctors say not to eat & she has lived to be this age - huge amounts of sugar, fat..), drinks 4 martinis a day...she has a DNR & doesn't want to go to the hospital...she has experienced tiredness & coughing due to the cancer lung involvement but otherwise ok...she's pretty amazing although very difficult sometimes...have to mow the yard twice a week for her & it's a big country yard...however I've lost some weight that I needed to lose so it works out.

    Bookmark   June 1, 2011 at 12:16AM
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sushipup1

It's all about quality of life, and it looks like she has lots of that for the time being. Enjoy every minute and record the memories while you can. And please, give her a big hug for me!

    Bookmark   June 1, 2011 at 12:39AM
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