Archive for April, 2015
People who have to take care of their elderly parents and their children are sometimes called the “Sandwich Generation.” My experiences the last couple days, reminds me not only of a sandwich, but an old baseball game called Pickle.
In the game of Pickle, two fielders throw the ball back and forth trying to squeeze the runner until one of them can tag him/her out. The runner is said to be “in a pickle” because there are few choices.
In the post, “Attack by friendly fire: People with autism and their families” (click here) I shared how my son, who is 35 and has the label of autism, is caught in a residential crisis. The county board is the fielder on Base 1.
This same week, I’ve been running my mother who is 88 years old back and forth to the doctors for her acute pain. Today the doctors decided to give her full hip replacement surgery. My mother is the fielder on Base 2.
Me–I’m the runner caught in the middle, “In the Pickle.” I keep hoping to get a break and make it safely to the base. Back and forth, forth and back… go from one crisis to the next. Try not to be tagged “out.” It’s tricky, but maybe I can slide into a base, or pull a turn and twist maneuver, or run real fast. The odds aren’t good. But, sometimes we get lucky and can get to base safely.
Aaron’s problem is actually the more difficult to solve because the “system” is set up to deal with people like my mom. There are thousands of seniors having replacement surgery every day. The system, for the most part, works well. If it doesn’t work, there are thousands of family members across the nation who can advocate and fix things. Still not easy, but there are lots of voices and advocates.
With Aaron there are few voices to advocate. Few people have the luxury of even being in our situation.
Many parents of adults with disabilities have their child living at home. They might be on the waiting list for the few Medicaid Waivers. If their child does get residential services they do not know what best practice looks like, they are not likely to rock the boat or ask questions. Many parents are afraid the services will be taken away. Many think the agencies are doing the best they can and just give up.
Thanks to so many of you who have offered your prayers and concern. Thanks also to those who have given me some ideas and encouragement as we move forward.
Right now, I’m still “in the pickle” running between the bases.
Are you also a member of the sandwich generation? Also caught in a pickle? Tell us your story. How are you dealing with it?
Keep Climbing: Onward and Upward.
All the best, Mary
Day 19 of our Chris Brogan’s Every-Day-For-30-Days Blogging Challenge Follow us on Twitter #CB30BC
Alison Golden of The Secret Life of a Warrior Woman is my partner in this challenge: (click here to check out her new post.)
Nursing and Caring during WWII
My mom became a nurse during WW II. One of her first assignments involved going into the homes of elderly people in the Washington, DC area. Many of these older Americans were by themselves because their adult children were serving in the war. These were regular patients she saw every week and she would give them their shots, medication, baths, change bandages… whatever they needed. Mom told stories about how her best medicine was often listening. They were scared, lonely and she would read the precious letters that came from faraway places and help them write back. One afternoon she was with an elderly couple as the military officers told them their son had been killed in action. She gave each person personal attention and dignity.
Her patients were personal. She knew them and their stories. She cared about them as individuals.
After each home visit, she and her companion (they traveled in twos) would take the bus or trolley cars back to the dorm where all the nurses lived. She had to wash, press and starch her uniform (this was before modern washers and dryers), she had to write her reports (longhand with a pen) and she had to make sure she was inside the dorm before 10 PM or she would be marked a fallen woman and unworthy to be a nurse.
After the war she married my dad and had five children in six years, with another child 4 years later–six children total in 10 years. When the children were all school-age, she again became a part-time ER and Recovery Room nurse.
Nursing and Caring in 2010
Mom always loved hospitals and everything medical. Even now at 88 years old, she remembers the names and doses of each of her 15+ medications. She tries to remember the nursing staff but there are too many of them.
This afternoon I stayed in her room while a steady stream of professionals did the prep work for her hip replacement surgery. They had her IV running; she was given preventative medicine for vomiting and acid reflux. She had one tube taped into her artery so during the surgery additional meds could be given without needle pricks. Everything was plastic, disposable, and sterile.
Everything was Impersonal
Each of the medical professionals seemed competent and efficient. They explained the procedures, they reassured her that her doctor was the best; they had amazing machines that beeped and whirled. But, even with me standing there, no one cared who mom was. She was the “hip replacement in room 424.”
Again, this was a state-of-the-art hospital with excellent nurses. Everyone was super nice and competent. On the bulletin board near her bed “Helen” was written in large green markers. Each of her nurses also signed the bulletin board so she would know the name of the staff person.
Games of Caring
In this game of “name that patient” and “ring-around-revolving staff” It did seem disrespectful that a twenty-something staff person would address her as “Helen” like they were best buds.
In Disability World, we have often dealt with staff whose job was to write a report and then give their expertise as to what was best for Aaron. Sometimes the prejudice and low expections of the professionals are dangerous to the person (click here). As an advocate, I’ve been in meetings when psychologists (they were the worst) would go over their whole report with recommendations for placements or goals and they never even met the person. They claimed to know the person better than the biased parents or teachers…. Advocates always recommend parents bring a picture of their child to the meeting. I know of one case where the psychologist wrote the report up, only to find out he had the wrong person at the meeting.
Today, the company that provides Aaron’s residential care has “Home Managers” who oversee Aaron’s life. The “Home Managers” do not have anything in their job descriptions about getting to know Aaron–and since this is just a job to them–they do not do anything that isn’t in their job description. When I forced the one woman to actually meet Aaron, she explained she only did scheduling and paperwork. Yet, she is the person who would be in charge of Aaron if my husband and I got hit by a bus tomorrow; she is the person who signs off on Aaron’s ISP (Individual Service Plan) and she is the one who hires and trains staff. UNBELIEVABLE!
Always the Advocate
Learning to be an advocate is useful in so many situations. Research says people who are perceived as important, wealthy, or famous get better care than people who are anonymous, weak and ordinary.
As the two nurses maneuvered the hospital bed into the elevator with the soft music and the doors which opened in the front and back, I looked at my mom. Here was this frail 88 year old woman with her white hair mussed in bed head. Her skin kind of draped loosely around her eyes, mouth and neck. She insisted on putting on her lipstick before she went, so her bright red lips were in contrast to her pale waxy complexion.
She was just another old person to these nurses. She didn’t have an important story.
Going from Nurse to Patient to Nurse
On the elevator ride down to surgery, I told the nurses about her history. Suddenly mom was not a nobody. She became a real person—more than just the patient they were fitting into the schedule, the last surgery of the day, the hip-replacement in room 424.
In the elevator ride down to surgery, I shared some of mom’s stories about the changes in nursing, hospitals and medicine. We talked about the old days when mom wore starched white uniforms and hats–not permanent press colorful smocks and gym shoes with disposable covers. Think about it, in the fifties the hospitals were not air-conditioned (it was 85 degrees today) and many hospitals didn’t even have elevators. I told them how she visited the sick and elderly in their homes.
We were in the elevator for probably 4 minutes. That was all it took.
The Human Story Makes the Difference
Now, the old lady “Helen” was a retired nurse who worked when nurses really knew their patients. She was not a stranger; she was a nurse–one of them. She was a pioneer who paved the way for these two women pushing her bed. She was also a future THEM in 50 years when their hair would be mussed with bed-head and they would need caring nurses.
When we reached the doors to the surgery department, I kissed my mom on her red lipstick. This time when the nurse said, “Helen, we’ll take good care of you.” I smiled and knew “Helen” was now a real person and would get both dignity and good care.
Share YOUR Story:
Come on, I’m sure you have some comment about hospitals, medical or school professionals and caring?????
Keep Climbing: Onward and Upward,
All the best,
What do you see?
Every day businesses and community groups try to influence us with logos and symbols.
Did you ever look close–really close–at some of these logos? Sometimes there are hidden messages.
How many times have you seen the Amazon logo?
Have you ever noticed the A-Z arrow? I didn’t.
Could this be a visual cue saying, “You can purchase everything from A to Z”? Not just books.
Business logos and commercials dominate the social media and we often take them for granted. But no doubt about it, they influence our attitudes.
What’s your first impression?
What’s your second impression?
Baskin Robbins’ logo reminds us they have 31 different flavors of ice cream—can’t you just taste the butter pecan and chocolate chip?
Are you surprised the number 31 is right there in front of you?
Did you notice?
Mexican flag colors, right.
But there is a whole scene right in the middle of the logo.
Do you see two people?
They are sharing chips and between them is a table with a cup of salsa.
Now that you are aware, will you notice the embedded image on every Tostito bag of chips?
Will you tell your friends?
Your actions are helping to socially construct the meaning of their logo, the meaning of Tostito’s brand–Friend to friend.
Tour de France
The most famous bike race in the world, The Tour de France logo shows an action shot of a man on a bike.
See it? The R is a man bent over the yellow wheel of a bike.
What emotions do you feel?
Bet the marketing company spent hours researching the color of the t-shirt including study groups on whether the best color was blue, red or yellow.
Perhaps this ad was donated or created by a student…or a giant ad company on Fifth Avenue.
Wolf Wolfensburger spent years teaching us to be thoughtful about the images, logos and symbols we use when we market our agencies and companies that worked with people with disabilities.
He spoke of the social construction of knowledge–we are what others say we are:
“Impairment is a normal part of life. Disability is not. That is caused by our attitudes towards people who have impairments. It’s about time we accepted that wholeheartedly. Doing so is good for people who are disabled, for community and for the planet.”
Final Question: What do you see?
(Martha Perske, artist)
As parents and caregivers of adults with disabilities, every day we send out messages to the world.
Our neighbors, our relatives, our children and our community are watching and learning. They are socially constructing what they see based on their experiences.
Are we spreading the message that people with disabilities over 18 years old are adults—NOT children?
Are we marketing our services in unhuman images of angels, devils, elves, giants in our company names and logos?
Does a group of people with autism walking in a store blend in, or do they draw attention to themselves?
Are adults with disabilities seen as capable employees, volunteers, contributing citizens?
Or do community members see them as needy–asking for charity, or pity?
Are we promoting inclusion and normalization?
Are we teaching others what they see? how to understand?
If this was a business, what would our logo look like and what would be the embedded message?
How are we socially constructing our environment, our world?
Please share your ideas and thoughts. What message do we send on TV? in the community? What message in our personal life? What do you wish would happen?
Keep Climbing: Onward and Upward
All my best,