God’s Waiting Room

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.

Adam on a camping and hiking trip with Ski-for-Light, an organization that assists visually impaired persons (VIPs) in physical activities.

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!

Nightly Commiseration

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:

B: Big Brother’s Bits about Being Blind
VIP: Visually Impaired Person in the News Again
Elderly, Blind, and Living in a Big Black Box
Tips for Caregivers of Visually Impaired Persons in Care Settings

Michele’s Weekly Pet Challenge: Chewy, A Therapy Dog for Elderly and Handicapped

Michelle’s Weekly Pet Challenge, Week 37
Meet Chewy, a fourteen-year-old therapy dog who visits the medically needy and elderly at The Shores at Wesley Manor in Ocean City, NJ.

I can’t say enough good things about this wonderful facility/home that allows volunteers to bring in dogs to visit the handicapped, medically needy, and elderly people in their care.

My brother, Adam, has always been an active person, but now in his later years, he is wheelchair bound. He has been blind for more than twenty years, and he has coped well. But now his physical and cognitive health have deteriorated, and he needs twenty-four hour care. After several unsuccessful placements, he is now thriving at Wesley Manor. Dawn, Kim, Tricia, Jonathan, and many other specialists and aides seem to take a special interest in Adam. This is all very heart warming for our family.

Visits from Chewy and other therapy dogs brighten Adam’s day. The smiles these dogs bring to his face are priceless.

Read more Adam’s life as an active blind person here:

B: Big Brother’s Bits about Being Blind
VIP: Visually Impaired Person in the News Again
Elderly, Blind, and Living in a Big Black Box
Tips for Caregivers of Visually Impaired Persons in Care Settings

Tips for Caregivers of Visually Impaired Persons (VIPs) in Care Settings

Meet my brother, Adam, age 80. He is blind and has been living independently in his own condo until now. With increasing cognitive confusion, balance problems, falls, and general weakness, he can no longer live alone and has moved into an assisted living facility.

Adam at 70 on a camping and hiking trip with Ski-for-Light, an organization that assists visually impaired persons (VIPs) in physical activities.

Adam has lived a full and active live even after losing his sight at age 53 due to detached retinas. He has managed well for these last 27 years, keeping his positive attitude and generally cheerful nature.

But Adam lives in the big, black box of blindness. Imagine what it must be like to move into a new care setting.

Imagine: You live in a black box.  The door to your box opens. A person comes in, makes some random noises, then leaves. Who is that person? What do they want?

Imagine. A person comes in and starts talking. Who are they talking to? To you? To the person in the next bed? The person pricks your finger and leaves.

Imagine. Someone hoists your feet up onto your wheelchair footrest.  Why? Your wheelchair moves. Who is pushing the wheelchair? Where is this person taking you?

Many people check on you during the day in the course of their duties. Who are all these people? What are their names? What are they doing?

***

How would these nonverbal interactions make you feel? Confused? Irritated? Frustrated? Hopeless? Helpless? Depressed? All of the above?

Adam experiences all these feelings regularly. VIPs need lots of verbal interaction in order to become oriented to the care environment. Here’s how you can help.

1. Orient the VIP to people he will encounter each day.

Greet Adam. Identify yourself and your reason for being in his box every time you enter.

Hi Adam. I’m Valerie. I’m here to give your meds.
HI Adam. I’m Sarah. I’m going to check your blood sugar level.
Hey Adam. Simon here. I’m going to move your wheelchair away from this doorway so people can come in.

2. Get to know Adam as a person who has a wealth of experiences. Take a few minutes to engage him in conversation.

Our family posted some pictures in his box, and these became conversation starters for people who came in.

Hello. My name is Adam.
I am blind.
Please tell me your name.
You can kid around with me.

The speech therapist saw this next picture and asked about it.

Peaches

Therapist.  Oh, is that your dog? He’s really cute.
Adam. Yes. Her name was Peaches. She had cancer and died. (Peaches was a big part of his life in his early blindness. Adam still chokes up when he talks about her.)
Therapist. Oh, I am so sorry to hear that. I bet you loved that little dog.

This therapist made a personal, empathetic connection with Adam in this short conversation. She treated Adam like a person with feelings.

Brief interactions with Adam make him feel comfortable in new surroundings, and these new caregivers soon become friends. Personal connections are critical to the successful orientation of VIPs.

3. Wear your name tag every day.

Adam can’t read your nametags, but family and friends can. It’s hard for them to remember all the personnel who interact with Adam every day. Help them out. Wear your name tag. And post your name on a whiteboard in the room. Family members can help Adam remember your name and your role in his care.

Next tip coming soon: Orient the VIP to Place.

Meow for now… =<^;^>=

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Elderly, Blind, and Living in a Big Black Box

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.

Adam (left) cross-country skiing with Ski for Light buddies

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

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Favorite Posts from My Archives

Blog Every Day in May, Prompt 21:  A list of links to your favorite posts in your archives.

Those wonderful WordPress stats have identified my most popular posts over the past year:

Travel:

Italy: It’s 4 P.M.  Have You Had Your Gelato Yet?  2012/05/30

Italy: A Visit to Tuscany  2012/05/16

New Jersey: My Home State

Got Blueberries? 2012/07/12

Easy-Peasey Blueberry Tart

Bike MS: City-to-Shore  2012/9/30

Family

B is for Big Brother’s Bits about Being Blind  2012/04/03

Adam cross-country skiing with Ski for Light buddies

Social Media:

They Laughed When I Sat Down to Twitter  2012/03/22

Grammar:

This post did not get many comments, but it got a surprising number of views.

Q is for Quirky Dreams, Susie Q, and Prepositional Phrases  2013/04/20

The Last Meow.

Reruns. Blah. I hate reruns. I’d better go take a nap.

Meow for now.  =<^;^>=

VIP (Visually Impaired Person) in the News Again

Michelle Post of the Press of Atlantic City picked up my earlier blog post about my brother, Adam Kroelinger, 78, of Vineland, NJ, and wrote an article about him which can be found here: http://www.pressofatlanticcity.com/news/press/cumberland/vinelander-and-blind-an-adventurer/article_185bc54e-c87c-11e1-9b72-001a4bcf887a.html

Last week while cleaning out a closet, Adam found a box of pictures and asked me to go through them with him. In the box we found pictures from his ski trip to Alaska in 2003. Here’s how it all started.

On occasion, my siblings (nine of us) and our spouses gather from various parts of the country (New Jersey, Delaware,  Pennsylvania, South Carolina, Texas, California, Oregon) for a family reunion cruise.  On our cruise in 2002, Adam walked the promenade deck early every morning for about an hour. On the first few days of the cruise, another family member walked with him, but soon he became oriented to the ship and felt confident enough to walk by himself. He always used his cane, so people were aware of his vision problem and were always willing to assist him if he needed it.

One fellow passenger struck up a conversation with Adam and told him about Ski for Light, an organization that sponsors cross-country ski events and camping/hiking trips for (VIPs) visually impaired and (MIPs) mobility impaired persons. That was all Adam needed to hear. “I can do that!”

Adam talks with Ski for Light friend on Holland America cruise.

When Adam finished fighting with the pirates on board ship (he outsmarted them), he started planning his first ski trip.

Pirates on cruise ship threaten Adam and demand his stash of gold nuggets.

Six months later, Adam flew by himself from Philadelphia to Anchorage, Alaska, (thanks to the airlines for their excellent assistance!) and met members of the Ski for Light organization at the Alyeska Ski Resort. They paired him up with a sighted cross-country ski guide, and off he went.

Ski for Light also arranges ski trips for  MIPS (Mobility Impaired Persons) using specially-designed ski-chairs.

The best part of the trip, Adam says, was meeting other visually and physically impaired people. Seeing how they traveled and participated in the ski activities encouraged everyone involved.

A poster hanging on the wall of the ski resort said it all: “If I can do this, I can do anything.”

“Yep,” says Adam, “that’s exactly right.”

Since that trip, Adam did a second ski trip in Wisconsin and later a hiking trip in Colorado. And tonight as we talked about the trip he said, “That hiking trip was really fun. I think I’ll do that again.”

Now that’s positive thinking. How many 78-year-old men do you know that want to tackle the hiking trail?

I think the Atlantic City Press is going to hear more about this intrepid adventurer.

Look for more Ski for Light stories on their Facebook page.

B: Big Brother’s Bits about Being Blind

My big brother, Adam, is blind. He has a major disability, but he is not handicapped.

As a child, his vision was poor, and he had to wear coke-bottle lenses in his glasses, making him the brunt of many jokes and taunts. But he adapted, graduated with the rest of his high school class and went on to be a successful adult. As he got older, his eyesight deteriorated even further. Because his work involved driving, his employer willingly modified his work assignments to eliminate driving and kept him employed with other activities at the company’s home base.

Later, in his mid-50s, additional problems with his eyes (uncorrectable retina detachments) reduced his vision to just light, color, and shadow and forced him to take early retirement. The range of this partial vision was only a few feet, but lately this range has further decreased.  Nine years ago, he started to use a cane to help with mobility. Until recently, he walked around the neighborhood and even downtown, keeping his diabetes under control with his exercise. A recent fall and a fractured elbow have restricted his neighborhood walking at this point.

Despite the disruption to his life-style that visual impairment has caused, Adam remains a very positive person, frequently joking about wanting to take his turn driving when we are out and about. He teases me about the weeds that he “sees” growing in my yard or about the snow that needs shoveling. He calls my house or my sister’s house to “bust on” our husbands. Of course,  he gets no mercy from my husband, Ken, or from my brother-in-law, Rich. Adam gets what he gives!

At 70 years-old, Adam went cross-country skiing at Alyeska in Alaska with Ski for Light (http://www.sfl.org/) an organization that provides one-to-one assistance to cross-country skiers. In his words, it was a blast! This organization, and others similar to it, do much to enhance the lives of both visually impaired and physically impaired by providing opportunities that develop skill and self-confidence.

At 71, Adam went mountain climbing in Colorado with another branch of Ski for Light. For a week, he and ten or so other visually impaired persons, along with one-to-one guides as partners, climbed to 10,000 feet. They camped out, carrying their own supplies and preparing their own food as they went along. Being blind did not stop them from hiking, cooking, or just smelling the pine-scented air and the campfire.  He loved being out in the middle of nowhere. And he loved the fact that he made all of his own arrangments and then flew to Colorado by himself to meet the rest of the hikers. The airlines support staff were especially helpful.

Now at 78 years-old, Adam still lives independently in his own condominium. My sister, Bev, and I take turns taking him grocery shopping, though he is quite capable of getting his own groceries at the Acme close to his home. He just follows the perimeter of the store and gets what he needs: yogurt, soy milk, deli turkey, bread, vegetables, fruit. When he holds the soy milk container close to his eyes to check the flavor, someone invariably offers to help. People are good that way.

Bev and I often take him prepared meals, but he can cook for himself as well. His favorite dish to make is vegetable stew. Recipe: cut up whatever vegetables you have in the house and throw them in the crockpot, add a can of tomatoes and a can of beans, add some good hot salsa, cook for three or four hours. Simple.

Adam has a keen sense of orientation. Often when we drive him home from a family outing, we will ask him, “Where are we?” And he will announce, “We just passed the light at Oak and Main.” And he is right. At times, we ask him for directions on how to get to such and such a place, and he tells us. His memory of the area from when he was sighted is incredible.

Tonight, Adam attended a meeting of the Cumberland County (NJ) Disabilities Awareness Group. At this meeting, the participants talk about all kinds of issues related to blindness, physical disabilities, as well as other disabilities. He meets with this group once each month and assists with special awareness events they organize. Someone attending the meeting usually drops him off at his home afterwards, but he is quite capable of getting home by bus.

Tomorrow, Adam will go to the Margaret Winchester Enrichment Center for the Blind in Bridgeton, N.J. A special bus will pick him up at his door and return him there in the afternoon. At the Center, he will participate in various activities with other visually impaired friends (exercise, woodworking, adaptive computers, arts and crafts, dominoes, puzzles). On occasion, the whole group will go bowling. Of course, going out to eat is one of the favorite activities at the Center.

Bits about Being Blind

Occasionally, though, Adam expresses frustration with how people relate to him, and he wishes people in general knew a bit more about relating to visually impaired persons.

Here are some bits my family has learned on how to help him without embarrassing, belittling, or discouraging him.

1. Speak directly to the visually impaired person (VIP) when you approach, giving your name. Do not assume the VIP will recognize your voice. When you do not do this, he feels he is not included in the conversation. Do not ask another person near him about him. He is not deaf. Ask him directly. When you leave, say goodbye.

“Why don’t they just say, ‘Hello, Adam. It’s Sam here.’ Then I know who is there. Otherwise I have to rack my brain to recall whose voice it is.”

2. Provide only as much assistance as needed. VIPs have developed strategies for handling many of their basic needs. Ask if the VIP needs help, then wait for acknowledgement before you provide any help. Do not do anything for them that they can do themselves. They can

• manage their money by folding it in certain ways and by putting it in certain sections of their wallets
• distinguish coins by their shape, size, and feel
• use adaptive equipment to help them: talking watches, talking meters (diabetes)
• listen to recordings for the blind provided by the state Commission for the Blind (one in every state)
• use adaptive computers that magnify writing
• write checks and pay bills using the adaptive computer
• uses buses and other local transportation to get to appointments
• make telephone calls

2. When you go out to eat, have the person sitting next to VIP read the menu to him. This avoids confusion and prevents the VIP from being overwhelmed with everyone talking at once.  Learn his favorites and his dislikes. This will narrow down what you have to read, and what he has to remember.

3. In dark restaurants or other places, ask the VIP if he wants to take your elbow. Walk at a reasonable pace, watching for obstacles (carts in aisles, chairs out of place). Tell him when something might block his path.

4. Pretend the dinner plate is a clock and politely tell the VIP that the potatoes are at high noon, the peas are at 3 o’clock, and the steak is at 6 o’clock. (Of course, there is that joke where the VIP tells the sighted person that he is used to digital time!)

5. Announce when the VIP is nearing a curb. If there are steps, announce how many steps are in each set.

One thing we notice a lot is that people are respectful about Adam’s disability. When we walk on the Ocean City, NJ boardwalk, for example, people see the cane and move aside, allowing Adam to walk without bumping into someone. That’s commendable. We appreciate that kindness.

VIPs can live active, independent, and productive lives with minimal assistance.  Adam would say, “Being handicapped is a state of mind. You can’t just sit still and mope. You just gotta get out there and keep moving.”

With a big brother like Adam, you just gotta keep going. No time for a self-pity party. Get out there and pull weeds or cut the grass or go for a walk or climb a mountain. Life is meant to be lived! Just do it!

And wouldn’t you know it, tonight Adam started talking about going on another mountain climbing expedition! I think you have to agree: this guy is not handicapped!

YOUR TURN

Do you know anyone who is visually or physically impaired? What lessons have you learned from them?