I’ve written about my brother Adam before. He has been an active person all of his life. Despite his blindness, which he developed in his late fifties, he learned to ski in his sixties with an organization called Ski for Life. He also went mountain climbing, hiking, and camping with this same group.
Now years later, the story is different. Adam, 81, is in a care facility for “medically needy” persons. He is wheelchair bound, and is not able to walk at all. In fact, he can barely stand up. He needs help with eating, dressing, and every aspect of personal care.
Several things amaze me about him and his life in this excellent care facility (Wesley Manor in Ocean City, NJ). He still has a good attitude, and he still enjoys interacting with people.
Good Attitude and Interaction with People
After an early period of agitation and anxiety about being in a new facility and away from his own home, Adam settled into the routine at the care center. A lovely older woman named Loretta, 89, became his tablemate and good friend. The two of them kibitz and tease each other throughout their meals and in the common areas of the facility. This interaction is unusual because many of the clients in this wing live in their own little worlds, rarely speaking to anyone else except the occasional family member who happens to visit. We are convinced that this daily friendly interaction between Adam and Loretta have kept them both going.
Reminiscing Passes the Time
My sister, Bev, and I are Adam’s only regular visitors. (His daughter lives and works in Arizona, so can only visit occasionally.) I visit on Tuesdays and Fridays, and Bev visits three other days because she lives closer. We try to visit around mealtimes because Adam needs assistance with eating, and he also seems most alert at those times.
We spend a lot of time reminiscing with Adam when we visit. It gives us something to talk about, and it helps pass the time.
Lately we notice that Adam is spending more and more time in the past. Last week he asked what mom was doing. Trying to explain reality to him is futile and often brings on more anxiety, so we have learned to go along with him.
“Mom is making spaghetti sauce for dinner,” I said. “Can you smell it cooking?” “Yes,” he answered.
“What’s Daddy doing?” he asked. “Daddy is in the recliner ‘resting his eyes.'” (Adam laughed at this old family joke.)
Adam’s long-term memories are still sharp, so we talk about working on the farm when we were kids. One day he asked, “You know what I did one time out at Dada’s (our grandfather) farm?”
“No, what?” I answered.
“When we were picking up potatoes, I put a watermelon in the bottom of the basket, and then filled the rest of the basket up with potatoes. Dada was mad when he found that basket.”
I laughed with him about that. “Oh, so you were the one who got us all into trouble with Dada.”
I didn’t tell Adam that at one time or another, each of us kids had tried that same trick. And when Dada reported our shenanigans to our dear mother, she never believed him. Her children would never do such a thing!
For us, talking about childhood happenings is reminiscing, but for Adam, it is his reality.
Adam’s vivid dreams seem so real that he believes the events in them actually have occurred. We do not try to convince him otherwise. He reports that he has other visitors on a regular basis: his brother Bill who lives in South Carolina, his daughter Lori who lives in Arizona, old friends from the Enrichment Center for the Blind in Bridgeton, NJ, his old boss, as well as several aunts and uncles who have previously passed away. He even reports on some of their conversations. (His boss still wants him to make deliveries in Philadelphia!) But these visitors are part of his dreams, and although they would dearly love to visit, they cannot. We, however, are happy these “visitors” bring him comfort and joy.
Who Turned the Lights Off?
Today, Adam was quite agitated because someone keeps turning off the lights so he can’t see anything, and he can’t find his way in the airport terminal to find his flight, and someone has taken his wallet and his money, and why do they have to turn the lights off all the time anyway?
Adam reported that his little dachshund Peaches (who passed away ten years ago) raises a nightly ruckus in his room and scares the other patients. Luckily his new roommate also has a little dog (*wink* wink*), so the two dogs now play together instead of raising a ruckus. Problem solved!
After our visits, Bev and I call each other to commiserate. We laugh about the funny comments Adam has made, but we sigh with sadness at the reality of the inevitable. Adam’s physical and occupational therapy have been terminated because he shows no improvement but rather is declining physically. He is steadily losing weight (now 140 lbs) despite an enriched diet that includes “super-smashed potatoes,” extra fruit-flavored yogurt, and sugar-free pie and ice cream. Like Mikey on the old TV advertisement, Adam eats everything and has no complaints about the food.
It is so sad to see Adam slowly fade away. Our consolation: he has no pain, he has a good friend near him, and he has so many “visitors.” His good attitude certainly makes it easier for us to spend time with him.
More posts about Adam:
My brother Bill (Unka Bill to the kids) is a
n odd ball really interesting guy, but sometimes he gets a little mixed up. When he hears the term “flower bed,” this is what he thinks:
Then again, here’s another oddity in his yard:
Now really. Who puts out a picnic table for squirrels? That is a bit
odd unusual don’t you think?
At our house, we chase the bird-seed-stealing squirrels away from the feeders, but not Unka Bill. He puts fresh corn (bought at the Summerville Flowertown Festival) out on a mini-picnic table posted up on a tree for those pesky squirrels.
Fresh corn on a spike for those pesky squirrels!
I personally witnessed this
odd behavior event. He put this cob of corn (previously promised for our dinner, mind you!) up on his fancy-schmancy squirrel feeder and went back into the house. Fifteen minutes later, he checked back, and all he saw was a bare cob and not a squirrel in sight. Ungrateful little fellas. They didn’t even stop to say thank-you or clean up their mess.
Oh well, they made Brother Bill happy. Sister-in-law Patty just rolled her eyes.
By the way, you can see pictures of the Summerville Flowertown Festival here in my Quirky Grammar series (from the 2014 A to Z Challenge). There really are some street-fair pictures in these two posts.
Okay, I admit that it’s a bit odd to talk about grammar at an outdoor, sunny-day-in-April street fair, but what the heck? I have already confessed to being a Grammar Geek, so you can’t label me as odd. Or can you?
Janice Hall Heck, retired educator, blogger, wannabe photographer, and
nitpicky editor of On the Horizon, a bi-monthly community newsletter for Horizons at Woods Landing, Mays Landing, NJ, is quite possibly a grammar geek.
Oh Heck! Another Writing Quirk, theme for the amazing 2014 A to Z Challenge, suggests ways to improve our writing by avoiding and/or eliminating troublesome bug-a-boos that cramp our writing style.
Raising Blaze: A Mother and Son’s Long, Strange Journey into Autism by Debra Ginsberg
Harper Perennial Reprint edition, 2003.
2002 title. Raising Blaze: Bringing Up an Extraordinary Son in an Ordinary World by Debra Ginsberg HarperCollins, 2002
Blaze is not your typical child. In fact, because of his extreme behavioral issues, he is a child in need of great support in a modified educational program. He has a strong family support system: a mother, Debra Ginsberg, a writer who willingly gave up her own job and personal success to ensure that Blaze had at least a fighting chance to get a fair and balanced education of his own. The book details the emotional journal of Blaze, his mother, and his extended family (grandfather, mother’s sisters, and a brother) all of whom pitched in to help when the school system proved to be too much for Blaze.
Ginsberg ran the gamut of regular teachers, special education teachers, aides, psychologists, therapists, principals, meeting them all in and out of classrooms and Individualized Education Program (IEP) meetings held to determine the course of Blaze’s school life. Multiple attempts at a proper diagnosis and thus a handicapping condition label left school personnel and family members frustrated. Blaze did not fit neatly into a DSM-IV (the catalog of handicapping conditions labels and descriptors), not that the label would have helped anything. After years of frustration and major disappointments with the educational system, Ginsberg threw down the gauntlet and got a legal advocate for her son.
The book covers Blaze’s life from conception, his difficult birth, the years of doctor’s visits and tests, through year after year of educational crises. Fifth and sixth grades provided a measure of relief in the form of an exceptional special education teacher who was even willing to take Blaze on the annual sixth grade camping trip, a potentially traumatic event for an autistic child. The book ends after an abortive beginning in seventh grade. Ginsberg and her family begin to home-school blaze in a team effort, with the plan for him to eventually return to school.
Ginsberg wrote this book because she could never find one to read herself when she was in the throes of Blaze’s chaotic school years. She says,
It is true that every human story is unique, yet it is also true that there are qualities we all share as humans. Among those qualities are our differences and thus our sameness. My hope for Raising Blaze was that others would find themselves in this perspective and in our story.
I connected with this book in three ways, first as a mother of a special needs child (I remember those IEP meetings well!), as a special education teacher, and as a school administrator. Because I had sat in the parent’s seat at the IEP meetings for my daughter, I felt I had a better understanding of the parents’ feelings and goals when I sat in the educator and administrator’s seats for their children’s IEPs. Each role made me a better fit for the other roles.
Debra’s book does some of that, too. She tells the truth when she relates the discomfort a parent feels in IEP meetings. As a frequent parent volunteer and a special education classroom aide, she realized that she not only has to teach these children, she needed to touch their hearts. These children well know that they are different, and they need teachers who will treat them as the special persons they are. They are not just a collection of behaviors that vary from the norm.
Teachers and parents of all children should read this book for insights into the world of special education. As an administrator (if I were not already retired), I would have my entire faculty and staff read the book, and then share it with the school community. The book has messages for each person who reads it.
Blaze was in seventh grade at the end of Ginsberg’s book. Now he is in his twenties, and he has written a book about his experiences: Episodes: My Life as I See It. I am looking forward to reading this book, too.
My brother, Adam, 80-years-old, blind, and wheelchair bound, lives in a big black box with perpetually dimly lit windows. He can see the large square of light where the window in his room is, but he cannot see me or a shadow of me sitting two feet away. Every day he tells me that his eyesight is getting worse, and that he must go see the eye doctor. (The eye doctor has already told him that nothing can be done about his eyes at this point. Adam’s vision loss is due to retina detachments that occurred in his 50s.)
Until recently, Adam has lived a very active and full life even with his blindness. He lived alone in his own condominium, receiving only minimal outside help from a once-a-week cleaning person and from his two sisters (Beverley and me) who ran errands for him, helped him shop for groceries, and took him to medical appointments. He rode the CATS (Cumberland Area Transit System-NJ) bus to the Enrichment Center for the Blind in Bridgeton, NJ, several days a week to join other visually impaired persons in activities and camaraderie.
Even while blind, Adam camped, hiked, and climbed mountains in Colorado. He went cross-country skiing in Michigan and Alaska with an organization called Ski-for-Light. You can read about his skiing adventure here: VIP – Visually Impaired Person in the News Again.
When Adam had a bit more vision, he walked around his community for miles and miles using his white cane. He knew the bus system well and could get himself to various places for workshops and appointments, even those an hour away from his home.
A Fall, Hospitalization, and Rehab
Most recently, Adam has been living in a short-term rehab facility after he had a bad fall at home. He did not break any bones in the fall but seriously scraped his arm, and it bled profusely because of blood thinners he is on due to a heart condition. At the hospital, the doctors determined that he had an irregular heart beat and implanted a pacemaker. After his hospital stay, he went to the rehab facility for five weeks of physical and occupational therapy.
Today, Adam will be moved from his current placement in a rehab facility to long-term care in an assisted living facility. The therapists who work with him in the rehab center have determined that under Medicare guidelines, he no longer benefits from physical therapy, and therefore his therapy will stop.
At this point, Adam is unable to live independently and probably never will again. At care level 5 and wheel chair bound, he needs assistance with everyday living activities: medications, bathing, toileting, shaving, dressing. He does not need assistance with eating, except to have his food or utensils unwrapped. His balance is not good, and he is at high risk for falling.
We found a placement for him in a very pleasant long-term care facility. He will have to drain his life savings and investments to pay his expenses as Medicare will no longer cover his care. His house must be sold. His daughter now has his Power of Attorney (POA), and now she has to make financial decisions for him. Of course, Adam thinks that he can still make decisions for himself, when sadly, he cannot.
At 80, Adam is quite sharp, but not every day. Some days he confuses facts, memories, dreams, and reality. (He always knows that Obama is the President!) He worries and asks questions like: “Where will I sleep tonight?” He tells me that he is missing work and that his boss needs him. (He retired twenty-five years again because of his vision disability.) Then he tells me that he needs to call his boss and tell him he is retiring because he is too old to work. He worries that he can’t find the keys to Mom’s house (Mom passed away in 2000 and her house was sold). He said, “Daddy’s car is parked at the high school, and I need the keys to go get it before the kids vandalize it.”
New worries pop up every day or so. He misplaces things then accuses people of stealing them. Later, when these missing things turn up in another place in his room, he says, “They brought it back because they knew I was mad.”
On good days, Adam can joke around with the best of them. Several aides in his previous facility respond to his joking manner and joke right back at him, bringing instant broad smiles to his face. He has a good attitude and knows well that his attitude affects others. He repeats his philosophy: “If you are nice to people, they will be nice to you.”
He dreams and his dreams become real, yet he has enough logic to figure that out. One day he asked me, “Who were all those people who were at the house last night?” I responded, “Which house?” He thought a few seconds and said, “Well, it couldn’t have been Mom’s house, because we sold that. And it wasn’t my house. Whose house was it? Did I just dream that?”
One day, the therapist told us, he sat on his bed trying to call his sister Joanne and got very agitated when a phone message told him her line had been disconnected. (Joanne passed away in June from complications with diabetes.)
On days when he seems confused, he gets very agitated. We listen, but we do not try to correct him, rather we try to distract him with another topic.
He has a hard time locating himself in space. He reaches out with his hand to feel around for his bed or his glass of water. He gets easily disoriented, so sometimes he does not know where he is. He also does not know who all those people are that come in and out of his room.
Assisting the Visually Impaired in Care Settings
In the six weeks that Adam has been in the hospital and in rehab facilities, I have noticed that most aides have little training in assisting a blind person, so I am starting a series of posts on tips for caring for VIPs in hospital and other care settings. The first post should be later this week: Tips for Caring for Visually Impaired Persons (VIPs): Orientation to People
The WANAFriday prompt for this week comes from Tami Clayton. Tami can usually be found Taking Tea in the Kasbah.
The #wanafriday blog prompt for November 29, 2013 is: Dig through your bag, couch cushions, backpack, man purse, satchel, or scan the floor of your car for the first coin you find. Look at the year printed on it and then write about what you were doing that year.…
This week’s #WANAFriday prompt is….
Since the kiddos are headed back to school soon – or are already there – what was your favorite thing about going back to school? The new clothes? The fancy notebook and perfectly sharpened pencils? Algebra? (Okay, probably not that last one, but…)
Just as kids count down the days before school, we adults in our 55+ community count down the days until our pool closes on September 8. We will have one more humongous pool party this weekend, then seven days later, summer will officially end when the pool cover rolls out and clicks into place.
Instead of going back to school as I did for so many years as a child and as an adult (I was a teacher, then an elementary administrator), I will go to the library and get a new batch of books to read, join an indoor (ugh) exercise class, start a new travel notebook and daydream about trips I want to take, bake the last of the blueberry and peach pies, pack away my summer clothes, (oh wait, I need them for my trip to San Diego in October), attend my husband’s MAJOR high school reunion, and then count the days until next summer. I am tired already.
At the pool today, I chatted with my neighbor’s seven-year-old granddaughter as she balanced on a pool noodle decorated with a fairy head insert on one end (her brother floated on a noodle with a shark head…pretty scary!). School starts in two weeks for her. She told me she already knows her teacher’s name: Mrs. Hubbard. She beamed with a precious smile.
I remember that feeling. I loved school, and I always looked forward to the first day. I loved getting new shoes, dresses, skirts, and blouses (that’s all we could wear way back when) and planning my first day outfit.
And I thought about my teacher. I knew who it would be because I went to a two-teacher, two-room schoolhouse up through the fourth grade. I had Mrs. Fike in kindergarten, first, and second grades, and then Mrs. Cohen in the third and fourth grades. No surprises there. My older sisters and brothers led the procession for me. (“What? Another Kroey Krewe family member? How many more are at home?” Teachers just loved my big family.)
Our desks, bolted to the floor, looked something like this:
Once I learned to read in school, I was in seventh heaven. I can thank Mrs. Fike and Mrs. Cohen for that. And that’s what I loved about back to school.
Speaking of Back To School, here are some thoughts on that topic from my #WANAfriday friends:
Dianna Bell, #WANAfriday: Going Back to School
Kim Griffin, #WANAfriday: No More Pencils, No More Books
Liv Rancourt, #WANAfriday: Back to School
Siri Paulson, What Do YOu Love About Going Back to School?
And here’s another to ponder:
Julie Miner, Rants in My Pants: Said No Teacher Ever. . .
The Last Meow
Good thing I don’t have to go back to school. That would interfere with my daily schedule: eat, play, sleep. Speaking of sleep, it’s about that time.
Meow for now. =<^;^>=
WANAfriday: Share an early childhood memory, or a photo that brings back a memory of childhood or family.
In my childhood, large family gatherings were common.
Many evenings, my aunts and uncles gathered round the big kitchen table drinking coffee and talking about the events of the day, the weather, and the crops.
We cousins ran around outside in the twilight swatting mosquitos and catching fireflies to make lanterns for our bedrooms. Mom’s Mason canning jars, especially the green tinted ones, made the best lanterns.
Sometimes we sat outside on the big lawn in a big circle just talking. Sometimes we even had a campfire. One of the bigger kids invariably started telling scary stories, complete with stormy sound effects and long drawn out details. Here is an abbreviated version of one classic night-time summer tale:
It’s a dark and stormy night, and Bubba and Sarah Lee sneek away from their friends in his new black convertible to go sparking out on the woodsy bluff. In the midst of their tryst, they hear a faint scratching on the passenger door. Then the scratching gets louder. Scratch, SCRATCH. And LOUDER. SCRAA-AAATCH.
Then… thump, thump, thump. The door rattles. A deep, snorting chuggle fills the air.
Bubba, remembering tales of terrors in these parts and fearing the worst, puts the car in reverse and blasts out of the woods, the romantic interlude forgotten in the terror of the moment.
When Bubba and Sarah Lee get back to her house, Bubba goes around the car to open the passenger door for Sarah Lee, and………he……….sees…….. [deathly silence]
… A BONY ARM WITH A CLAWED HAND HANGING ON THE DOOR HANDLE!!!!!
Was it the famed Jersey Devil? Who knows. But this story has been told and retold at many a campfire.
It was all too real to us little ones because we knew that the Jersey Devil did live in the woods of South Jersey, not that far from our home.
The Last Meow
Ha. You think that’s a scary story. You want to hear about the night I met the Jersey Devil on a moon-less night in the dark woods and chased him out of town? That Jersey Devil was so scared that he never came back again. So much for him, the big lummox. I never got much thanks from any humans for saving them from terror either. Oh well, what can you expect from those superstitious scaredy-cat humans. They probably think THEY chased the Jersey Devil away. Humph.
Meow for now. =<*!*>=
Here are a few more WANAfriday childhood memories:
P.S. Did you ever hear that scary story when you were a kid? What scary stories did you hear at camp?
Black and White Weekly Photo Challenge: Toys
Some photos become prized possessions for the memories they hold.
My brother, Little Bobby, passed away four years ago at age 66. Even though we both had attained AARP status, Bobby was still (and always will be) my little brother. We spent many days in our childhood playing together, working on the farm together, and sometimes getting into trouble together.
The Last Meow.
He was a cutie-pie, wasn’t he? But remember, he liked to tease us cats. Don’t you remember what you told Mom when he was teasing us? You said, “Bobby is making my cat ‘nervous’. Make him stop.”
Enough of this reminiscing. We cats have work to do.
Okay. Reporting for duty, singing to the tune of “The Wonderful Wizard of Oz” . . .
We’re off to tease the do-ogs, the homelyest do-ogs of Oz. . .
Meow for now. =<^;^>=
FAMILY in real old-time black and white.
My Mom and Her Sisters (circa 1930). My Mom is on the far right in the back row.
My sisters and me…(I am the littlest one in front row.)
The saddest thing about family pictures is that family groupings change. If we were to take this last grouping today, there would only be four sisters in the picture.