Notes to a First Time Caregiver (Vol 1.4): Undoing What the Hospital Did
On Christmas Eve of 2014, my maternal grandmother suffered a massive stroke, and in a year’s time she shuttled through the emergency room, hospital admittance, in-patient rehabilitation, nursing home, and finally hospice where she died on December 7, 2015 — less than a year’s time. In fact, barely two weeks before she died, CNAs at the nursing home could not even determine who had last spoken to her in almost 5 days and as such, she slept unwoke for at least a weekend some family estimate. This highlights negligence on multiple levels as well as the critical state of medical institutions — more bodies with hardly anything close to a 1–1 that would enable greater observation and medical needs extended according to single person and needs, wishes, and desires. Yet it points to another trend, when you look more closely to the medical world where the general public/average person often hold doctors, nurses, and anyone related to the healthcare field to be right all the time (mainly because they say so in their posture to those non-MD but also because of good marketing) and so we also expect them to be committed fully to our healing. They care about care…but not long term healing; or so my own path has revealed through the women in my life.
My late grandmother, confronted strokes now 7 years ago when her daughter, my mother an IT genius, federal government contractor, business owner, single parent, professional, project manager, software developer, coder, web page designer, suffered 5 strokes between May and August of 2009. 2 small ones and 3 massive ones that took hold as doctors — did their best — by filtering her through the emergency room, hospital admittance, in patient rehab and a laundry list cocktail of medications sent home with her on discharge as they tried to see what could work as she was reduced to a black female patient; to all those who looked on and interacted with her. Her village enabled slow progress in Atlanta that led her mentally shifting after several years from being comatose/drugged up and wheeled around everywhere/ unresponsive, watching tv mindlessly, and reduced to what some deemed a kindergarten/2nd grade level education to being more alert and spending more time on the computer, demanding to get on Facebook, integrating Skype on a regular basis, beginning to sending two letter word emails, and listening more closely to open speaker calls that her guardian offered believing she was hard of hearing.
My mother remained in Atlanta until 2013 when I took over her full care and became live-in guardian once moving her to live with me in St. Louis,Missouri. Nothing could prepare me for what it took — the degrees nor decades of education or everyday understanding — could help me emotionally or mentally for beginning/living life as an adult/academic caregiver to a disabled parent. Being practical and smart my mother and I figured it out though, and reading books, blogs, and drawing on the almost two decades of herbal knowledge that my mother and other family members introduced me to, we went at her recovery more informed than the average household; likely average black household either. Despite two falls requiring me to have to embarassingly call the fire department to pick her up off the floor after falling on me when trying to get in her room, she never fell again and still has not under my care. Since coming to live me she lost some weight, became more alert, responsive, expressive in her choices, there was an uptick in speaking abilities, began demanding to walk more, all of which was normal and deemed great by the medical profession. With bold integration of herbs over medications and cutting her off of most of her hospital medicines life changed drastically. — — — Some could look down and accuse negligence on my part, but after the shift in food and integration of certain herbs, in the spring of 2014 we discovered that she was ambidextrous and she began using her left hand to make marks on paper with a pencil that then led to increased brain activity where she began looking at anything and drawing it with her non-dominant hand. That month and the summer thereafter she produced three volumes of hand drawn artwork, and I put her in two local art classes in the continuing college education program and she not only thrived but floored teachers and classmates and was rated the top student (despite never having any formal art class or interest in art). Her art continued and this fall she was up to deciding on whether to teach her self coding again or to shift to integrating her artwork on the computer. She chose the latter and with the integration of even more herbs she began finding more software to teach herself how to draw, and speak better, and was putting an art picture once a day diligently. At the beginning of headaches, bad dreams/bad feelings, and irritability at the turn of December things became worse and she demanded to go to the doctor.
Which brings me to the blog post title — ‘Undoing what The Hospital Did’ — — I meant what I said, every word of it too! My mother and our caregiver went to the doctor December 16th (a week and a half after my grandmother died) because while giving her time to grieve over the loss of her mother, her blood pressure began to spike beyond what the herbs normally could manage and at the doctor’s appointment they felt she needed to be admitted. She went through emergency room, hospital admittance, inpatient rehab….and during that time I visited her all as well as her caregiver and we both grew concerned that the fully alert charming person talking and ready to go on the appt — in fact the person telling me what she was wearing and to hurry up — 2 weeks later had been spit out of the system and is terrified at the thought of the doctor or going back given that she was fully on their medications as they desperately focused (ONLY) on getting her numbers level, every day slowly she began to match the rest of the patients I passed by in each room — drugged up and unable to keep their eyes open. She was pretty good by a week in the hospital (aware that she was drugged up, even speaking it ‘drugggggged up’, facebookchatting with me, and ready and excited about rehab and the prospect of what she had been yelling about daily since October — T-H-E-R-A-P-Y). She stayed a week at a short term therapy facility and got the therapy and regiment reserved for the 70+/80+ aged patients given that she was the only black patient at least under 60 that I saw among the patients. As a result of their care, she was put on three blood thinners and a seizure medication among others and she got frustrated that she was so completely drugged up unable to spend more than a minute keeping her eyes open that I would go for barely an hour because she would sleep most times and shake her head at the powerlessness. Our caregiver complained to the doctors and staff that this was opposite of who she had worked with for the past year who was thriving and drawing and living and they said quite frankly they had to level her numbers. By the last day they had asked when we were coming to get her because she was refusing everything and they had done all they could and as I explained to the caseworker, you did all you could based on what you know and I will now have to undo this undignified life you all have created that does not foster brain stimulation, learning, choice, laughter, and enhancement of life when laced with heavy drugs — all to get to the perfect number.
So over time I plan to document more closely how I am undoing what is care but should be healing. More attention needs to be given to the overcrowded hospitals,nursing homes, and big business of hospices. Most of all the growing number of adult caregiver, academic caregivers, black caregivers, and caregivers unable to get a job because of caregiving demands. Looking at the movement through the medical factory of institutions my grandmother funneled in and out of the medical world and ultimately was spit out and died because of lack of healing. I will not let such a thing happen to my mother! She is too smart, too driven, and determined to get better and as i asked the outgoing caseworker, “Is that a dignified life to you — drugged up unable to talk, type, or get up?”…..and she fumbled her words and she said well we did all we could do to help her, please know.
On my mother’s arrival home, I gave her a double herbal tea shot, and several of the two year array of tested herbs that had my mother speaking clearly on the first day — defying all medical predictions. I gave her a small dinner of salad, fruit, and water after scolding her that the diet would change but the water and herbs will prevail under my watch.
My mother’s story will be told in 2016!