The Mom & Me Journals dot Net
The definitive, eccentric journal of an unlikely caregiver, continued.

Apologia for these journals:
    They are not about taking care of a relative with moderate to severe Alzheimer's/senile dementia.
    For an explanation of what these journals are about, click the link above.
    For internet sources that are about caring for relatives with moderate to severe
        Alzheimer's/senile dementia, click through the Honorable Alzheimer's Blogs in my
        links section to the right.

7 minute Audio Introduction to The Mom & Me Journals [a bit dated, at the moment]

Thursday, July 02, 2009
Caregiver Medical Advocation for Ancient Ones
    I'm on a small roll, again, people. If you are involved with an Ancient One in any way that even smacks of caregiving, read this. It's a forthright Op-Ed article about the level of knowledge any particular doctor is required to have about medical treatment of the elderly. The short synopsis of the article? "...American medical schools require no training in geriatric medicine."
    The example in the article of a commonly mismanaged medical condition often presenting in elderly patients and the consequences of mismanagement is pneumonia. Shades of deja vu! This is exactly what my mother had a little over a year ago when she was hospitalized for the last time in her life. It took the hospitalists four days, multiple pleadings and vociferous arguments from me before, four days into her stay, her attending hospitalist finally and wearily ordered a neurological consult for her. It was the neurologist who diagnosed the pneumonia. The hospitalist spent those intervening four days declaring that she was exhibiting "failure to thrive" and trying to discharge her from the hospital and place her into a skilled nursing facility. He also insisted that she needed dementia meds, which I nixed. None of the hospitalists on her case contacted her PCP in Mesa for consult. All refused my repeated attempts to present them with her medical records, of which I not only had copies, but which copies I carried around with me while I was at the hospital and to which I referred almost constantly, much to the hospitalists' irritation, until the neurologist was called in on consult. He had the presence of mind and the experience necessary to accurately diagnose pneumonia, based on my computerization of her medical records and a recording I'd made of my mother 12 hours prior to her hospital admission when the pneumonia hadn't yet sapped her strength and her normal mental, physical and speech abilities. I had, by the way, offered the recording to the hospitalist a couple of times as evidence of her normal condition prior to hospital admission. The hospitalist had continually refused to listen to it, telling me that doing so "wasn't necessary". The neurologist, though, was astonished by what was indicated the recording and thanked me for bring it in. The entire fiasco up through her finally being diagnosed with and treated for pneumonia is recorded here, in case you're curious.
    Although the tardy treatment for pneumonia restored my mother's ability to speak, eat and think, it left her physically wasted. She emerged from the antibiotic and breathing treatments exactly as did the woman serving as an example in the article. She became, at this point, a throw-away patient. Once her lung cancer was diagnosed, the hospitalists decided to put her on hospice. Not that I disagreed with this, but I wasn't told, until she had been in respite care for a few days and continued to show a need for and an ability to benefit from short term rehab, that hospice won't sponsor rehab care. Luckily, our hospice people were savvy, recognized the problem and posed a solution: Sign Mom off hospice, put her into short term rehab, then sign her back onto hospice when she was strong enough to help me help her. From that point on, her medical care, with a few minor hitches, proceeded swimmingly.
    When I began the long, eccentric journey of becoming my mother's companion, I was adamant that I would never, ever, step into the fray with her professional medical personnel. I didn't have the training, I told myself. Even research, I believed, would leave me far short of being able to understand and intelligently participate in medical care decisions. I wasn't interested in irritating professional medical staff and possibly compromising the quality of her treatment by interfering. Even as I found it absolutely necessary to try to understand what was going on with her medically in order to make decisions on her behalf about, first, her diabetic treatment, then her diagnosis of and treatment for iron deficiency anemia, I was, consistently, at sea. It took me more than a few years to figure out how to obtain the slight information available on medical treatment of the elderly, let alone basic information about her conditions, how to evaluate the information, how to approach medical professionals and, finally, where to find the courage to oppose them, when necessary; and, believe me, it was OFTEN necessary, much to my amazement, continued disbelief and disgust. Even after nine years in successful medical advocation apprenticeship, I was continually rebuffed by the hospitalists and sometimes the nurses who cared for my mother from May 14th through June 29th of last year.
    In some ways I was lucky. I had two sisters with medical training, one of them with advanced medical training and certification in lab technology. I had the unwavering support of all my sisters. My mother's PCP was indefatigably willing to work with me and my constant desire to do what was right for my mother even when it meant not doing what he recommended, which, in retrospect, I realize, was actually rare, once he understood and gained respect for my concerted interest in my mother's medical profile and my dogged efforts to be as fully informed as possible.
    Yes, it's always a good idea to try to find physicians and other medical professionals for your care recipient who satisfy your personal requirements for your care recipient's medical needs. Unfortunately, in this country, at least, the following problems are inherent in this task:    Understand, I am not saying that it is across-the-board impossible to find adequate, trustworthy medical professionals to handle your Ancient One's medical care. I know a few caregivers (emphasis on the word "few"), full time and part time, who categorically state that they have (or had) confidence in their Ancient One's medical professionals and treatment. I know a few more people over 65 who continue to care for themselves and are satisfied with their medical care; these people, though, one of whom is in his 90's, are in excellent overall health and are not yet requiring treatment for conditions common to the elderly. I also know one woman who is about to turn 91, is is beginning to experience medical conditions common to the elderly, continues to live independently and who is finding herself mistreated and dismissed by her doctors; this in a community that is famous as a retirement haven and has a high ratio of elderly to non-elderly. As well, more often than not, when I talk with elder caregivers and the subject turns to the medical treatment of their charges (which it inevitably does), tension squeezes the conversation, doubts arise about the appropriateness and efficacy of previous or current treatments and fear knocks about between the sentences. Just as often, though, courage surfaces. I can't tell you how many times I've heard variations of the following from caregivers: "My parent's doctor said thus and so, prescribed this, it didn't work (or worked badly), I did some research, discovered thus and such, approached my parent's doctor (or changed my parent's doctor) and now my parent is doing better."
    People, it isn't just me. It isn't just my experience. It isn't just the NYT article to which I've linked above. Medical knowledge of and treatment for the elderly is not, at this time, in so many ways, even close to adequate. Part of the problem is that the elderly are only beginning to be medically studied as a group. Part of the problem is due to the health crisis our country is in at this time. Part of the problem is that we tend, in this country, even in our halls of medicine, to consider the elderly who need medical care throw-aways; it is as though all of them are "dying", despite the fact that some Ancient Ones, like my mother, refuse to consider themselves "dying" even when objective examination appears to tell us they are. Part of the problem is that, despite current, constant urgings for people to become intimately involved in and informed about their medical care, most medical professionals (in this country, at least) are not prepared for, nor respectful of, those of us who attempt to do this. All of these conditions don't bode well for medical advocation, especially if you're doing it avocationally. My experience, though, tells me that doing it is much better than not doing it. My sense tells me that as more of us insist on medically advocating for our Ancient Ones, despite the opposition from the medical-industrial complex, despite the difficulties, despite the fact that even when you do advocate medically you can never be absolutely sure that you know enough or are insisting on exactly the right thing, it is, overwhelmingly, caregivers' efforts at medical advocation that will be the primary cause of medical care for our Ancient Ones becoming knowledgeable, appropriate, healing and harmless.
    As I write this, an idea comes to mind: Suppose, besides typical caregiver support groups, caregivers began to organize medical advocation support groups, designed to provide the following:
  1. A forum for comparing the medical experiences one encounters on behalf of one's care recipient;
  2. A place to seek help in researching medical information needed for adequate medical advocation;
  3. A clearinghouse for information on and ratings of local sources of geriatric medical care;
  4. A way of consolidating and organizing local information, including caregivers' reports, regarding treatment of Ancient Ones by local medical establishments and presenting such information to medical establishments as ratings, for address and redress;
  5. Perhaps, the retention of a professional medical advocate by the group for advice;
  6. When individual cases become legally questionable, help with garnering community resources to address and resolve these cases.
    Finally, trust me on this: If you think you can't do medical advocation for your Ancient One or are sure you won't, both of which applied to me when I began my journey with my mother, prepare yourself to discover that not only will even cursory knowledge of your Ancient One's medical experiences prompt you to do it, you'll realize that, yes, it's hard, yes, it's fraught with pitfalls, but not only can you do it, not only will you find yourself doing it, even if you are staunchly reluctant, the current state of geriatric medicine assures that, as you do it, you will improve the quality of your Ancient One's medical care and your Ancient One's life.
Wednesday, July 01, 2009
Palliative Care Grand Rounds 1.6 is up!
    This month I didn't manage to get around to submitting a post but, as it turns out, I haven't gotten around to writing anything here or in any of my other journals since last edition. As some of you may have noticed, I haven't been reading much online, either; in fact, I haven't been online for much of anything, lately. This hasn't been a good period for me, writing wise; not sure why. I always keep the first of the month in mind, though, just so I don't forget to hit PCGR. This month's edition, as usual, is provocative and timely, and linked to the title above. Go. Read. Consider.
    No, I'm not down for the count...I've just hit a flat spot of perpetual sadness, which makes it hard to write, and I'm going with it.
    Later. You can be sure of it.

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