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

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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