The last newsletter on invalid care brought up awareness in myself that I am now acting on. I got several emails from patients in response to the newsletter sharing some of the wisdom they gained from their experiences. Here is an example from Lynn:
Thank you for this. When I faced this situation with my mother, I had already worked in a nursing home and four hospitals and it was still hard. Hospitals have other workers and lots of equipment that a home seldom has.
What I found most difficult was to maintain the mother-daughter relationship when I clearly had to take charge. Not to mention allow her to maintain the dignity she enjoyed.
One of my Unity Ministers, who is also a Doctor of Clinical Psychology helped me. In one early session I was fretting over taking my mother’s car keys. The Dr. Asked me how ‘old’ my mother was being right then: e.g. Body strength, emotional stability, intellectual clarity and focus. I said around 11. She asked if I would give an eleven-year-old car keys. A light bulb went off.
If mama was physically a four year old, I physically helped her like I would a four-year old. If she was emotionally seven, I dealt with her as I would a second-grader. When she was physically an infant, I would hold her and cuddle her and help her like she were a baby.
I like to think it brought her comfort and care. Maybe all it did was help me not resent her or lose patience with her. I.e. A three-year old cannot control all of their emotions or predict all of their bodily functions; you know this so you don’t hold it against them or expect something more. Either way, it helped.
The very hardest was when her intellect was sharp but her body and emotions were at a different level. I did all I could to ask her motherly advice and to tell her daughterly things I would have before her strokes.
And then we chose laughter for the rest. When she fully dressed herself, with lipstick and coifed hair, a nice blouse and absolutely nothing else, we laughed. I asked if she were dressing that way so it was easier to get to the toilet more quickly. Then she would laugh and say she’d gotten a job as a news anchor where you only have to look good from the waist up. Then I’d say something like, well let’s get you some pants on so you don’t spoil those young men for life. Then I’d take care to ask her what pair of pants she would like to wear. I.e. Giving her as much control as possible and engaging her brain to remember this society generally condones pants-wearing.
I don’t know if this is helpful to anyone but me or if this will work with a spouse. (I still can’t imagine physically caring for an upset Steve.) All I know is that this point of view allowed me to be much more present in difficult moments and to deal with them with laughter and gratitude. And very little guilt when I eventually had to unplug her.
It struck me how much experiential wisdom there is amongst my patients. I bet that my patients would love the opportunity to share that wisdom with fellow patients if I could create a way to make that happen.
A couple people suggested that I turn my newsletter into a blog that people could comment on. I didn’t like that idea because all you see when you look at a blog is what the last few people have said. I need information when I am interested and it is relevant to me, not when some writer happens to post it. Blogs are a nice social platform, but actually not very useful beyond the information in the main article. I compared a blog to organizing a library by pasting all the pages of all the books into one long scroll. That makes it kind of hard to find anything. What I want is more like an online library of experiential wisdom on lots of topics in a format that makes it easy to find what you need.
I checked out forums for the Sacramento area. This seemed like a better idea, but I still did not find them easy to navigate to what I wanted and they were filled with tons of useless comments. If I am trying to find out if a particular restaurant has gluten-free options, I don’t need to read about how much trouble someone else has with gluten or why someone did not like the service at that particular restaurant. While this may be good information, it is not what I am looking for.
My son, who does digital design and web developing (delappdesign.com), suggested that what I wanted was a bulletin board, password protected, with moderated comments or a Wiki with limited editing functionality. Since I am not familiar with either of these on a small scale, I am asking him how that would work in this situation. The password protection is so that only my patients would have the ability to add their experiential wisdom to this creation. This keeps it all in the “family” and keeps out trolls – people who like to put inappropriate and rude comments onto blogs and forums.
This whole project speaks to my belief that we are not designed to go at it alone in this life. Humans are communal creatures. We gain ground in life through our mutual cooperation, not through competition. It is silly for each of us to have to re-invent the wheel with everything we engage in life. We can gain from other’s experiences – not just their success, but also their failures. We don’t need to make all the mistake ourselves to figure things out. But to do this we need to be able to connect with other people’s experiences and what they learned from them.
You would think in this age of digital communication that this would be super easy. Unfortunately I find that really useful information is being buried in an infinite mass of useless gibberish. I also find that digital communication destroys the ability to feel the integrity and honesty of the person you are connecting with compared to one-on-one, face-to-face communication. Every day I find slick professional internet presentations that look really good, but which are in fact complete rip-offs. Many of our most sacred cows for information like the CDC, FDA, media news, medical societies, and even scientific journals have become little more than marketing arms for various corporations.
I hope to bypass some of this by creating a little knowledge base filled with input from people you know and are likely to bump into at the office. Personal connection upgrades the quality of input you get from others. None of this input is expected to be expert or professional, but personal experience only. E.g. What has worked for you on a wide variety of subjects from care-taking to cooking.
I do not know what this project will finally look like, but I would like to invite you to participate. I have been writing weekly newsletters about health and life philosophy information for over four years now, but I am only one voice. You all have voices as well. I would like to create a vehicle for that expression. A community is built from everyone’s participation, and it is in community that we grow the fastest.
If any of you have experience in this arena, please share with me what worked for you and what did not by emailing me at david@fairoakshealth.com.