SHADYSIDE-1-7444

      4:30 a.m. It's time to get up in my parents’ two-bedroom apartment. Bedtime is 7:30 p.m. {maybe 8 p.m. on a late night) and my father, Walter, probably is sitting (in the dark) in his room, waiting to come into the front room where the visitor (me) might still be asleep.

      I'm surprised to be thinking about Shadyside 1 – 7444 as I wake up. That was the telephone number in the white-frame house where I grew up, on the west side of Cleveland. The house isn't far from here. 

      All my numerous aunts and uncles lived nearby. They were young and healthy. All are still nearby now, but there are not as many, they are in their 80s -- and ill. There is only one relative left (my mother) who can still drive. My aunts and uncles have no children, and I live far away.

      My father, 87 years old and legally blind, has had six (or is it eight?) emergency hospital admissions in the past six months for heart failure and fluid in the lungs. My parents say they know the hospital workers really well (now) and have even developed some favorites (and some not –so-favorites).

      My father says he is happy in the morning because he has made it (again) through the night. He says a visiting nurse told him "when the heart is at rest, it is the most difficult time," so he's never sure that he will be alive in the morning.

      My mother empties a makeshift toilet next to my father’s bed and dumps the urine into the high-seat, makeshift toilet that has been created over the regular one in his bathroom. My mother proudly says she has built both toilet structures from items obtained at very low prices from Goodwill.

      My father wants my mother and I to get the mattress off his  bed so she can wash the cover. (It's like a huge pillowcase for the mattress, made from a very large sheet and sewn by my mother at my father’s request.)

      We drag the mattress off the bed and wrestle the cover off. I ask why she's changing the linen in such a cumbersome way. How is she able to do this when she’s alone? She says it’s really very hard.

       I watch my father put a thin rubber cloth back onto a fresh mattress cover, and then use five big pieces of gray duct tape to make the rubber cloth stick to the mattress cover.

      Why does my mother go along with this? She says she tried to get him to use another system, but he thinks this works and she's tired of arguing. He directs us in replacing the six rolls of cloth that must be tucked in around the bed and tells us (exactly) how to place mounds of pillows on the bed.

      Tonight, he’ll sleep again in this very organized arrangement of pillows, blankets, and covers that looks like a small mountain range on the bed.

      5:30 a.m. My father eats breakfast alone, as he has done for the past few years. (He says he likes it quiet when he eats.) He still has peripheral vision, so he puts his breakfast together by himself. When he finishes, my mother gives him his first pills. Then she and I can eat.

      6:30 a.m. My father is already changing into his second set of clothes. He is dressing for the 8:45 a.m. visit to the cardiologist and the noon visit to the urologist.

      My mother provides the usual advice on which colors go together, but tells my father he is getting dressed too early. She says that the doctor's office asked them not to come early, as no one would be there. My father says he likes to be early.

     7:30 a.m. My father explains (again) how he wants me to make a copy of his videotape of the Guy Lombardo Orchestra New Year's Eve celebration. He wants a second tape so he can listen without the commercials. 

      I (again) say I understand what he wants and that it will not be a problem for me to listen to the two- hour Guy Lombardo tape and stop it each time a commercial appears to make that commercial-free tape.

      I have heard a lot of the Guy Lombardo tape during this visit to Cleveland, and so I feel I am prepared for this job. I actually used to like Guy Lombardo music, but repetition has not made my heart grow fonder.

      8:15 a.m. My father and mother leave for the doctor. It is, of course, too early to leave for the doctor. My mother says they just sit in the car in front of the office waiting for the doctor to arrive. She says they do that at the bank as well. She says she tells my father they are retired now and don't have to be the first to get in the bank. This advice does not move my father. He wants to be there early.

      8:30 a.m. I am the first caller when the Long-Term Care Ombudsman Office opens its telephone lines. I want to discuss the situation of my Aunt Irene and Uncle Joe. 

      They are both 85 years old. Yesterday, for the first time, I found that she was ready to deal with the real difficulties of their situation. I am seeking information about facilities that offer both assisted living and nursing home care.

     My aunt is terribly thin and frail now. She also is legally blind, has osteoporosis throughout her body and has impaired hearing. She walks short distances with a great deal of difficulty and is in constant pain.

      When she was suffering from broken ribs a year ago, she left the hospital early because she didn't want her husband to be alone.

      She used to count on my uncle to be her eyes and to help her be independent, but he's battling Alzheimer's disease. and his situation has deteriorated a lot recently. She says they want to remain together, but she thinks the health problems mean they can no longer manage in their home.

      The Ombuds representative is very helpful and patient. (I need patience.) She gives me names of 15 facilities on the west side of Cleveland that offer both assisted living and nursing home care. (My aunt doesn't want to move away from her area of town.) 

      Both my aunt and uncle might need nursing home care, but I don’t think it is wise (at this time) to preclude a discussion of the possibility of assisted living.

      10 a.m. I arrive at the suburban home of my Aunt Irene and Uncle Joe. A woman there comes several times a week to microwave lunch and help out for a few hours. She's in the kitchen with my uncle. My aunt and I meet alone in her bedroom for our business discussion.

      I say I’m very concerned about the situation and have collected some information that she might find useful. I explain that I contacted the Ombuds Office and have some information about assisted living facilities and nursing homes in the area.

      I also tell her about the Area Agency on Aging (AAOA) and that a representative could come to the house (at no charge) to assess their situation. I call the agency, and we talk to a woman who is (as my aunt says) "snippy" on the phone. I explain that the lady schedules visits, but won't be the visitor.

       I'm pleased that my aunt is forthcoming during the conversation. She is usually such a private person. I was afraid she might not easily share health information. We are told that a “visitor” (a social worker or a nurse) will come in about a week.

      After the call, my aunt tells me that she is not taking medicine that was prescribed for pain because of bad side effects. Her last two physicians have retired and she has seen her newest doctor only once. The next time she went to the office, she found a substitute there. 

      She needs a medical analysis. I will try to talk with her physician about that. It appears that the substitute has scheduled an appointment two weeks away, but it is only for a Pap smear.

      My uncle enters the room periodically. He asks about his wife. He says he hasn't seen her for about four days and he is worried. I assure him (again) that Irene is right here and she is his wife. My uncle leaves and Irene breaks into tears. She says she wants to die and Joe does, too. She says she can’t manage the situation.

      When I leave, Joe follows me out the door. He again asks about his missing wife. We return to the house, and I get out old pictures to show him how he and his wife looked over the years. I assure him that Irene is his wife and tell him he may be thinking about his 90-year-old sister. She visited him two weeks ago. 

      He mutters two different times that when he sees his wife again, he is "really going to give it to her." Irene looks very tired and is in a lot of pain. We all say goodbye.

      12 Noon. I stop to see Mary, my mother’s 80-year-old sister. She is in high spirits (as usual). Mary has always been the most open and accepting of family members. 

      There is never advice about what you might do differently or how you might improve your own appearance. Mary is always interested in and appreciates hearing about your activities. I decide not to ask Mary (again) if she has made an appointment with the doctor.

      The third sister, Sophie, died of breast cancer the very same week that Mary was diagnosed with it. The same surgeon operated successfully on Mary, but she has never returned for regular examinations. Mary just does not want the information. I am not even sure why she agreed to a breast exam in the first place. 

      Mary is happy. Her life is built around activities in the apartment building, services at a neighboring church (which houses retired teachers), her inevitable outdoor plants on the balcony, her friends, family and (especially) desserts. She does not want to discuss her cholesterol, weight or breast cancer.

      1:30 p.m. I call my parents to hear what the doctor had to say.  There is no answer. I am always concerned when they aren't home. I'm sure they are back in the hospital’s emergency department.

      1:40 p.m.  I decide to call the AAOA again. They are nice to me when I say Aunt Irene has not yet heard from them. (She actually might have received a call because one came in, but she couldn’t get to the phone before it stopped ringing.) 

      I talk with the representative about my aunt saying that she wishes she were dead and that Joe would like to be dead, too. I mention that my uncle says he is looking for his wife (who has been missing for days) and wants to do something to her when he finds her. I ask if they could schedule that appointment really soon and to address my aunt’s medical needs.

      3:00 p.m. I arrive at my Aunt Theresa’s one-bedroom apartment.  She is 88, and it has been four weeks since she moved into this assisted living facility. She and Jack, her 92-year-old boyfriend who lives two doors down the hall, are scheduled to go to dinner in the facility at 4 p.m.

      (Jack still drives, even though he blacked out recently while behind the wheel. I have never asked if the doctors determined what caused the blackout.)

      A lot of time is spent listening to Theresa talk about the menu. She likes the food, but other residents have complaints. Jack, the boyfriend, doesn’t like sweet potato patties (I didn’t realize somebody would want to do that to sweet potatoes), and a 102-year-old resident chatting with me in the elevator (casually mentioning her age) pointed out the “gravy problem.”

      Theresa always lets you know that you are welcome to visit, but she can’t be late for snacks, brunch, Sunday lunch or daily dinner. (I think we know the schedule as well as she does.)

      It took more than a year to persuade Theresa to move to this facility. She liked the look of the apartments and she enjoyed being Jack’s guest at meals. She just didn’t want to give up the house where she had lived for 55 years.  Even after she fell numerous times (including once while cutting branches on a tree), she still wouldn’t move. 

      But finally she was so thin and frail that she couldn’t get up once when she fell in the driveway. She had to crawl to her doorway. She decided it was time to make the move. We held our collective breath because we weren’t sure if she’d actually go through with it.

      It turned out that Theresa's physician was the problem. He was unwilling to approve of her going to an assisted living facility because he thought she needed to be in a nursing home. I believe nurses in his office turned the situation around, but I have never inquired about the politics of that reversed decision.

      When she arrived, the administrator let her know that she would not be able to stay unless she used a walker to go to all meals. Theresa balked until she discovered that you could just carry the walker along and make it look like you were using it. She frequently is told to slow down.

      At 4 p.m. sharp, Jack pops his head in the slightly open doorway and, without so much as a "hello" to the visitor, says they are late for dinner. Theresa starts to get up, but Jack already is leaving.

      “Wait a minute,” I say. “She is coming.” 

      Jack sticks his head back in the doorway. “When one of us is late,” he announces, “the other goes ahead and gets there on time.” And he leaves.

      Theresa, moving faster than I’ve seen her travel in some time, grabs the walker for the walk race down the hall. “Lock the door when you leave,” she calls over her shoulder as I watch her scoot out.

      4:10 p.m.  I find a payphone to call my parents again. I could not call from Theresa’s place because many years ago she discovered some kind of very low phone rate that apparently is available to people who rarely make calls with their phone. This has been inconvenient for family members over the years, but at least I know her system.

      My parents finally have returned home. They were not in the hospital emergency department, as I had feared. They simply decided to go to the hospital cafeteria. They are in the hospital so frequently that they now consider the cafeteria to be a dining establishment of choice. I had forgotten that.

      My father says that we, once again, have not had time during my visit to discuss his complaint that my mother won’t listen to what he wants and is not paying attention to his needs. My mother says he is driving her crazy.

      I tell him I’m sorry that we didn’t have time (again) to discuss the communication problem. I tell him I know he wants to talk about this dilemma and we’ll have to make it a priority next time I’m in town. I tell my mother to walk around the block when he gets to her.

      4:20 p.m.  I call my Aunt Irene. She says a very nice person from the AAOA has called and will be coming to see her in three days. I say, “Isn’t that nice that they were able to schedule you so soon.”

      4:25 p.m.  I head home, which is a little more than four hours away. I'll stop to visit my husband’s 96-year-old mother, Ruth, in a nursing home.

      I get there in time to hear a nursing assistant tell Ruth that she is soaked. She is told to sit on the toilet so that her pants can be changed. She finally emerges from the bathroom, saying she thinks she knows me. In some vague way, I think she does.

      She is in a wheelchair now most of the time. I ask why she has a cord attached to the wheelchair and her sweater. I am told it’s an alarm to alert the staff if she tries to stand. They say it's necessary because she often falls.

      I'm told Ruth gets restless at the end of a day. I imagine so. She loved to go for long walks even when she used a walker. It must be hard to spend so much time in a wheelchair.

      I offer her veggies and she eats some green beans. She really wants candy, so we finish with a sweet. She's always loved candy.

      I read her a “Ruth” booklet on her little table. It reminds her of her name, her room number and the names of her children. It goes over the important rules and points of advice (one to a page) that she needs to remember, such as using the arms of a chair when she wants to get up or sit down.

      After I give her a hug and we have said goodbye, I move the wheelchair to its position in the semi-circle of residents who sit facing the television. I never like this ending to a visit.

      9:15 p.m. – My parents call. I mention that they are up late. They say they wanted to be sure I got home without any problems. My mother says that my father wants me to know he thinks I’m too busy with my full-time job and other problems. He says I shouldn’t worry so much, and forget about making a copy of the Guy Lombardo tape.

Jan Marie Fritz is a clinical sociologist and professor at the University of Cincinnati and also at the University of Johannesburg. She has had Fulbright Scholarships and a Woodrow Wilson Fellowship.