I want to alert my (admittedly tiny) audience to a VIPost...
...the most recent (as of this date) at The Tangled Neuron by Mona. The immediately previous link will take you to the VIPost. The post introduces a book, The Alzheimer's Action Plan, which, among other highlights, encourages and instructs readers, particularly Adult Children of those with Alzheimer's, on how to develop an interdisciplinary approach to caring for their care recipient.
    After reading about the book I realized that such an interdisciplinary approach actually exists, on a limited scale, within this country's medical system at this time: It's called "Hospice". No, I'm not recommending that people with Alzheimer's be escorted through the Hospice system. What I'm recommending is that the entire medical/industrial complex in this country reorganize itself along the lines of Hospice's interdisciplinary approach. Let me explain what I mean.
    After only a few days of dealing with Hospice on my mother's behalf I couldn't help but wish that her entire medical experience for the last several years had been handled in much the way Hospice is now handling her. Although I'm pleased with how we've managed, it's been grueling and it would have helped, immensely, if the medical system in place to treat my mother prior to becoming a Hospice client had been more available to us. Once in awhile, specifically during hospital visits, we would be treated to a social worker here or a recommendation (in most cases, inappropriate) to a social service agency there but, overall, unless I had the time and, even, the idea to scour communities for extras, her experience has been almost exclusively one of "treat and release". As well, I found myself in the peculiar position of not only knowing my mother's medical history in detail but becoming her who-knows-how-knowledgeable medical advocate, constantly upchucking the same bits of her medical history that, while existing in voluminous medical records, were generally ignored, because throughout the intensive episodes in her medical experience she has been passed from physician to physician, each of which comes to us with a complete lack of familiarity with her medical history and, sometimes, with a lack of detail of her "current" medical crisis. As regular readers know, it's been maddening, and frequently dangerous for my mother.
    Until Mom (and I) became involved with Hospice, I had no idea that a medical sub-system existed "out there" that includes an interdisciplinary approach. Each client has:

• a designated field social worker who visits fairly regularly;
• a designated oversight social worker who organizes and keeps tabs on all aspects of care and handles Durable Medical Equipment;
• a designated doctor who freely consults other physicians in the area, if necessary;
• a designated RN who visits weekly or more, depending on what is necessary, is on 24 hour call, is experienced in the requirements of the care of the terminally ill and performs much of the medical care and evaluation;
• a spiritual counselor on call if needed;
• a raft of volunteers who are available to offer help and assistance to the caregiver as well as a wide range of social company for the care recipient;
• a trained physical therapist for regular evaluations and interventions, if necessary;
• trainers to teach the caregiver new skills, if necessary.

    So far we haven't had to use many of them, but they all contacted us in the beginning to let us know they are available and ready at practically a moment's notice.
    The more involved we become with this type of medical care, the more I wonder Why isn't ALL medical care like this????
    It's not uncommon for me to hear complaints about Hospice, although it's also not uncommon for me to hear compliments. From my experience, I think the complaints are generated because most of us, here in the US, are not used to having so many medical resources obviously at our disposal and aren't sure how to select the ones we need and put a hold on those we don't. I've noticed that a lot of people who have complaints feel that they and their relatives were "overmanaged" in their Hospice experience. I see how this can happen if one doesn't understand or trust that one can pick and chose, not only services but the extent of each service and people who are delivering them. At the beginning of our Hospice experience the visits from the various "departments" of Hospice were frequent and thorough. Luckily, my understanding of what was happening was also thorough, through the oversight social worker, so I knew that all these visits were primarily to introduce us to available services and, secondarily, to gather detailed information about my mother, myself as her caregiver and the care systems (or lack thereof) that we already have in place. As well, at least our Hospice company has been, from the beginning, overtly concerned that we take what we need and refuse what we don't. Our RN, for instance, has been so meticulous about reminding us of his concern about a "good fit" between him and us that, last week, I figured I'd better ask him if he thinks the fit isn't good for him; a hit bird will flutter, you know. He was astonished, and expressed gratitude, that I asked...but confirmed that he is comfortable with us, as we are with him. As well, once on Hospice, people aren't "stuck" with Hospice. One can sign off and go back to "regular medicine" at any time.
    Probably the other major complaint people have is what is perceived as the "lack" of medical care...which, frankly, is the point of Hospice. This is where I think the system would require tweaks in order to serve other medical clients. Overall, though, why shouldn't all medical systems be imbued with this interdisciplinary approach, along with the requirement that the system approach the client and make themselves known and available, rather than the other way around?
    I'm reluctant to state that my mother would, at this time, be better off health-wise if she'd been cared for under systems similar to hospice. It's hard to say, as aging will take its toll regardless of how one tries to manage it. However, I can absolutely state that I would have been a lot better off if such a system had been in place. I'm sure that I would not have spent nearly as much time in The Country of the Overwhelmed if, all along the path of this incredible journey my mother and I have been taking, there had been frequent way stations where people who know what we've passed as well as the upcoming terrain were directing us to brief stops to offer information and help along the way.
    Anyway, read Mona's post, even if you aren't involved with someone who has Alzheimer's. Consider that what the above mentioned book is proposing should be available throughout our medical system. Know that there is already a template in existence, under the name of "Hospice", for the type of care suggested. Think about this before you go to the polls this November. People, all people, sicken (including injuries) and require medical care in the context of their lives. Our medical system, though, tends to act as though illness and debility are disconnected from one's life; or that the connection is strictly "a personal matter". A cursory look at our country's health standing among other countries, alone, shows that health care is nothing if not political.
    Almost time to awaken my Ancient One.
    Later.
- posted by Gail Rae @ 13:24   email  this post