Life is a choice... perhaps most of the world has learned to turn their backs on their family, live selfishly, and to walk away from anything that demands breaking a sweat in life. I recognize that other people have no tolerance for helping out their disabled family members. I respect that they have jobs, families, and lives that are more important in their minds than a disabled family member. Yet, I pray that they learn to respect all the same...my choice to make sacrifices to care about my family member. As a care provider, you often work tireless hours reacting to the special needs of a disabled or sick family member.
I am amused by the world of judges who don't count care providing for a family member as "work". How many people have an aging or disabled family member that requires constant care to sustain their independence? It can be a consuming and demanding experience for any care provider to exhaust themselves helping another human being remain "independent".
When family members become the "patient advocate or health care power of attorney" for their disabled or aging family members; it requires extreme attention to detail. Every shift change at a hospitalization brings new hospital staff that are required to be updated on the last shift and all the changes and updates to multiple patients in a matter of minutes. They are required to do "quick glance" reviews of notes in computers and follow up on things that were done by other teams. The nurses, staff, and doctors are rotating through patient rooms with quick checklists; often times not knowing patients personally. Every patient's care plan requires different attention to detail. A "Patient Advocate" can assist the medical team and staff understand the patient's needs in a few minutes and reduce lots of possible problems or complications by "filling in the staff" to "issues" that require attention.
Truthfully, I understand the "human factor" enough to at least appreciate that the medical people associated with my family member's care are working their behinds off to manage their time, react to the needs of multiple patients at one time, and more importantly; to put up with the special needs of everyone individually and collectively.
In some cases you'll find absolutely amazing staff who are very interactive and other times you deal with fast paced, type "A" staff who are obviously irritated when you interrupt their texting sessions to get an answer about your family member's status while staying in the hospital. It's almost intriguing to balance your cool when attempting to make sure that all of your family member's needs are being attended to while at a hospital.
I feel blessed far beyond words to have the experience to date that empowers me "Not to take it personally" when staff appear superiorly attentive to detail or even "aggravated by doing their own job". I have learned that when dealing with medical teams; it's imperative to remember that they are human beings with lives of their own and to remember that they themselves are balancing tight schedules and reacting to a life of "multi-tasking" that demands quick and direct communications at all intervals.
My family member makes humor of so many interactions because at the end of the day; he doesn't understand half of what the medical folks are saying to him. The minute they walk in the room, his anxiety levels go through the roof. As a "patient"; he's very impatient and the only thing rambling through his head is: "WHEN CAN I GO HOME?" Often times; as a person with hearing deficits; he doesn't even "HEAR" the words coming out of their mouths. Literally, he is not hearing them speak, particularly when they are speaking at monotone and whispers of politeness. His reaction is to speak loud, come across aggressive, and assert his question; "WHEN CAN I GO HOME?" Sometimes I have to tell doctors to "SPEAK UP" so that he can hear them.
If I miss a "doctor meeting"...I have to go and ask the doctor to come back and reiterate whatever was "explained" to my disabled family member because when I ask him what's going on; he says, "I don't know what he said, you ask him." That forces me to task the nursing staff to page, already very busy, doctors and pray that they have not left for the day. Depending on the level of the medical issue at hand; I know I have to be prepared to understand my family member's multi-dimensional medical aspects and quickly share them with "new doctors & nurses" who are unfamiliar with his medical history. (Allergies, medications, surgeries, other tests, and so on.) As a care provider; it really eats me when anyone at a hospital tells me: "It's in the computer!" (Example: Allergies to medications and red alert allergy wrist bands.)
Ultimately, I am happy with the exceptional care that has been provided to my family member most recently. I respect the humanity of the medical staff and the hospital staff who have patiently, tolerantly, and amazingly completed their jobs with endearing consideration for the layered needs of my family member. I know they work hard and I respect that they are human.
Yet, no matter what, as a care provider who's been down the lane of multiple hospitalizations, surgeries, and medical care requirements with a disabled family member; I know what it's like to care more about them than you have time to care about yourself. I know what it's like to go down checklists and run ragged being at the hospital; doing errands, and intervening on issues that demand attention while your family member is sitting in a hospital with their hands tied. I know what it's like to look at that phone ring with a call from the hospital and hold your breath just praying that it's not "THE CALL" that tells you something bad. I know what it's like to exhale when a surgery is over and your family member is stabilized. I know what it's like to challenge doctors to reach within themselves and fight for your family member's life under deadly circumstances and hug them with all your might when they've "SAVED" your family member. I know what it's like to call upon the hospital "Chaplain" for prayers and ask for friends and family to provide basic visits and calls to the patient so you can get some respite (rest). I know what it's like to argue with your hospitalized family member who wants to leave the hospital "AMA" (Against Medical Advice) when they don't understand the mumbo jumbo medical jargon about their health status. I know what it's like to dissect medical terms into lamen's terms and reexplain technical things repetitively until it gets through the understanding of an irate and anxiety filled patient. I know what it's like to fight for that patient's rights; respect their rights, go against their own actions to protect their best interests. I know what it's like to allow a mad patient vent and then respect their position while outlining to them all the reasons they should stay in a hospital. I know what it's like to be the person who takes the verbal beating from the frustrated patient who feels like they are powerless while being hospitalized. I know what's like to laugh and shrug it off like a "foreign language"....
I have learned how to laugh, make jokes, and appreciate the moments in between; like when the "patient" flirts with a nurse or tells the doctors to "leave their life and death up to God and just do the job that they've been trained to do!" I have learned to take my breaks in between the challenges and sleep when I can while rushing when I have to be there for my family member. I have learned to be brutally honest with hospital staff to protect my family member when they tell "white lies" about degrees of things. I know in my heart that without the truth; they could make grave errors. I also know that personalities clash and letting nursing staff understand the patient better empowers them to be more humanistic in their treatment with the patient.
More than all these little things I have learned; I know with all my heart what it's like to come home and fall on the couch exasperated and exhausted-only to wake up and start all over the next day. I know what it's like for others to smirk, judge, and lay out THEIR expectations of me to be selfish and leave my family member hanging... I have laughed at quite a few others for undermining "MY CHOICES" to give a damn about my family member...sometimes more than myself.
Life is a choice... perhaps most of the world has learned to turn their backs on their family, live selfishly, and to walk away from anything that demands breaking a sweat in life. I recognize that other people have no tolerance for helping out their disabled family members. I respect that they have jobs, families, and lives that are more important in their minds than a disabled family member. Yet, I pray that they learn to respect all the same...my choice to make sacrifices to care about my family member.
Care providing is demanding, exhausting, and can be fulfilling. It's not always fun or entertaining. It requires lots of sacrifice. If you do it out of good old fashioned love for your family members; don't expect anyone to understand. Just do it because you know it's right for you.
Of all my experiences in this lane; I strongly support "WRAP AROUND TECHNIQUES" where everyone involved in a disabled family member's care sits down at a roundtable and shares, delegates, and inputs their abilities to help the situation. It empowers filtering non essential needs versus basic needs. It enables everyone involved to work together, collaborate, and mitigate all the care plan needs more effectively and with quick, interactive, and highly communicative processing. Time management, respite, and coordination of services is used more effectively with this method. Families are given resources up front and proactively engaged in the process. Teamwork really works better when everyone knows where they stand in a case and a priority list is mitigated effectively.
My prayers for all the care providers in our world who sacrifice things to care about another person who "needs" them. It can be quite a humbling experience. Blessings come in amazing ways when you face life and death through medical issues chronically. Care providing experiences teach you to see "God's grace" in countless little things....like children's fingerprints on the walls...
Our family has been blessed in priceless ways. I am forever touched with a deep appreciation for my family and the world around us in ways that most can only begin to imagine. I am grateful for friends who crawl out of the woodwork and bring delightful cheer amidst the challenges of emergencies and hospitalizations. Supportive emails, letters, cards, and calls to my family member distract from the frustration of being bedridden in the hospital. Friends who provide other support like mowing the lawn, taking my child out for a movie, or simply sitting with me for a cup of coffee and allowing me to vent are priceless during these experiences.
Humorously, I have taken heat rounds for caring too much. It's okay. I am proud to stick my neck out there and have no regrets. I don't want to be the person who regrets not telling a doctor or medical team the truth to save their family member's life. I have had other family members snub me because I got "too direct" with nursing staff or surgeons. They make me laugh. I have been thanked all the same by those medical personell for helping them to react more effectively. It's all good.
Beyond all of the above; having one more opportunity to take our family member home alive is the reward for all the enduring moments. It's pretty black and white where I come from. Cherishing the moments in between is sometimes simply a gift from God that most cannot appreciate. God doesn't promise tomorrows...Make the most of your moments. All the best to everyone. Blessings.
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