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