Editors note: The following article is the third and final part in a series of articles about James and Josephine Reiland, and their familys experience with James Reilands Alzheimers disease. Part one of this series, Family copes with Alzheimers disease, appeared in the Dec. 21-27, 2005, issue of The Rock River Times. Part two, Family praises River Bluffs Alzheimers unit, appeared in the Jan. 4-10, 2006, issue of The Rock River Times.
Mary Hilton, 60, a tiny, energetic woman with shoulder-length dark gray hair, dark eyes and gold wire-rimmed glasses, approached The Rock River Times in August 2005 about doing a story concerning her fathers experiences at River Bluff Nursing Home.
River Bluff is Winnebago Countys 304-bed nursing facility on North Main Street between North Towne Mall and Sportscore 1.
Hiltons father, James Reiland, 84, has been at River Bluff since December 2004. In 2003, Reiland was diagnosed with Alzheimers disease, the most common form of dementia. According to the Alzheimers Association, more than 4.5 million Americans suffer the effects of the disease that gradually destroys a persons memory and ability to learn, reason, make judgments, communicate and carry out daily activities.
Reiland is one of 19 patients in the homes special care unit, which at its peak cared for as many as 32 patients. The special care unit is slowly being phased out, due to Illinois Public Act 90-0341, which requires nursing homes to report to the state how they fit within the guidelines of a special care unit.
River Bluff Administrator Phyllis Schwebke said if River Bluff were to keep the special care unit of the nursing home, It would be quite a burden financially. She said estimated costs totaled $250,000 for the first year alone.
The special care unit at River Bluff is equipped with security devices not found in other portions of the nursing home, particularly a coded wooden gate that leads to the main entrance of the two halls of the unit. The special care unit, like other units in the home, also has sensors on exterior doors that are triggered by wristbands and ankle bracelets patients wear.
Schwebke said that, although the nursing home will no longer have a special care unit, it will accept patients suffering from Alzheimers. But those patients will be worked in with the general population, instead of being put on a special care unit. She added that the home would probably have to turn away some patients who have a tendency to elope, or run off.
Hilton and her mother, Josephine, 84, said James has received excellent care in River Bluffs special care unit.
Theyre really, really good with him, Hilton said of the staff at River Bluff. We were surprised at really how much those girls interact with him and how they are with him. In fact, Ive learned a lot, because when you go back there, and youre dealing with those patients, you dont know from minute to minutenot just day to daybut you dont know from minute to minute whether theyre going to be mad at you or whether theyre going to want to hug you. So you have be careful, because their emotions are so different. So weve learned an awful lot from those girls. And they do like the patients.
Josephine added: I tell you, he thinks the world of these girls there. We always tell the girls, Youre first, were second. He never mentions, I want to come home. He thinks the world of those girls. To him, those girls are his family.
They know how to handle them, though, Josephine continued. You know, Come on, sweetheart. They tell us, Theyre our kids for us to take care of them. And we say, OK, thats fine. When we go in in the morning, I go around and shake the guys hands. But they just wait for that.
That is a wonderful unit, Josephine said. Its a shame if they let that place go. We always tell them when they leave, Save a room for Mary and I. Everybody is so friendly.
Hilton said she had read guest columns in The Rock River Times by Diane Bergquist, former admissions coordinator at River Bluff, and an editorial by this author, that she said painted an image of the nursing home that did not mesh with her familys experiences.
Hilton, who had met Bergquist when Bergquist worked at the nursing home, said many of the claims made by Bergquist and the editorial published in The Rock River Times did not ring true for her and her family. Bergquist alleged in a series of three guest columns that the nursing home facilitated an atmosphere of abuse, neglect and mismanagement. And an Aug. 10-16, 2005, editorial by this author explained that since 1995 the county-run home has struggled with staffing shortages, low staff morale, employee strikes, financial difficulties, alleged stealing of River Bluff funds by the homes bookkeeper, lawsuits, poor Centers for Medicare & Medicaid Services (CMS) reviews, and alleged Medicare fraud.
Hilton said she was tired of people saying to her and her family that they were crazy for allowing James Reiland to stay at River Bluff.
As you can tell, weve had a very good experience there, Hilton said. And this is why I got so upset about it because I know how often that she [Bergquist] had had family there and was very happy with the service there. It was a totally different person than I talked to. And all of a sudden, shes gone, so shes angry. Well, nobody wants any of those patients to suffer. And then to think that thats how she feels?
There were people that said to us, How can you have your father there with all of the problems they have? Hilton continued. And we said, We dont have a problem there. Well, theres got to be. Well, no, there doesnt have to be! Thats one persons point of view. Well give you another one.
So it really, really made us very angry, Hilton said. As you can see, my mother and I and my sisters, were all very outspoken in certain aspects. But we keep our mouths shut where we think its necessary. But if they were mistreating my Dad, no way. There would be so much trouble, it wouldnt even be funny.
Hilton and Josephine said that while their experience at River Bluff has not been perfect, it is as good as could be expected.
As Hilton explained: The people weve met have been happy with it. But not everybodys going to be that way. The one person we knew who was not happy, she always seemed unhappy. One time when I went by, I overheard her saying something about she wasnt very happy the way her mother was being taken care of. And I said, What do you mean? And she was complaining about the way she fed her and stuff. And I thought, OK, this woman is not going to be happy no matter what you do. And youre going to have that. Well, in [Bergquists] article, there are people who arent happy. The one woman who went in and found her mother was sitting in her urine. Well, when youve got two or three people, and youve got 10-20 youre taking care of, thats going to happen sometimes.
Thats whats sad is that your parent or you are not the only people there who need that attention, Hilton continued. And no nursing home has one-on-one. [At River Bluff], it doesnt matter whether its the cleaning staff or the people who are taking in the clothes, most of them know the patients. And they help. They seem to work together. And they treat them gently, too. Theyve learned how to deal with the patients in their area.
Hilton and Josephine visit River Bluff just about every day, arriving in early morning, staying to help James eat lunch, and then leaving around 2 p.m. when James falls asleep. Josephine, who has been married to James for 61 years, still does James laundry, even though the nursing home offers laundry service. Its her way of keeping James close to her.
Both Hilton and Josephine expressed their admiration for the staff of the nursing home, and said the Alzheimers unit in particular has provided James with excellent care.
Such care was evident during a
Nov. 10, 2005, visit with Hilton and Josephine at River Bluff.
The special care unit of River Bluff is composed of two hallways located in the rear of the building. The front entrance of the nursing home leads to a large, open cafeteria. Hilton walked through the busy cafeteria, stopping to greet tables of residents. She knew all of them by name.
Hilton continued to greet residents, saying hi and asking how they were doing, all the way back to the special care unit. She appeared as if a cheerleader for the home, raising everyones spirits as she passed. Leaving the nursing home at the end of the visit would seem to take even more time, as patients were sad to see her go and tried to hang on to her as long as they could.
A coded wooden gate serves as the entrance to the unit. The gate is attached to a nurses station, which is almost always staffed.
The hallway in which James is housed was well lit and plainly decorated. The social room, where James was seated on this particular day, featured about seven tables with four chairs each, and a large window.
On one wall, two soft pink and purple flowers with yellow smiley faces and soft green stems proclaimed Flowers are smiles from God. Paper fall-colored leaves hung on strings from the ceiling and a cutout USA was taped to the wall along with pictures of fighter jets. A small dresser with a TV and VCR sat in the corner near another small picture of a fighter jet. The social room also had a clock, silver stereo and four stuffed animals piled up near the window.
Three nurses attentively cared for about 10 patients, trying to get them to sit and eat lunch. Alzheimers patients are encouraged to do as many tasks as they can independently so they do not forget how to do them. Tasks as simple as eating and walking can be forgotten overnight. Many times, patients wont even recognize family or friends. Such is often the case with James.
Hilton suggested male visitors keep their distance from one particular female patient who gets excited by touching any portion of a mans body. Another female patient appeared very upbeat, had lots of energy, danced and spoke primarily Spanish. Hilton said that although this patient struggles with her memory, sometimes she remembers words from long ago.
On this particular day, James Reiland did not feel particularly well. For the better part of two hours, Jameswho has a full head of white hair brushed straight back, bushy gray and black eyebrows, dark eyes, thick silver-framed glasses, a deep voice and a cleanly shaved facesat with his head down and hands clenched tightly together. Sometimes James clenches his fists so tightly together for so long that he ends up with big bruises on both hands. He keeps them together so tightly that no one can pull them apart.
Hilton, Josephine and as many as three nurses attempted to get James to eat his lunch. He refused. When one of the nurses came over to check James oxygen level, another patient walked over and began pushing the nurses cart down the hallway. Another nurse stopped him before he made it too far.
The overall scene was one of organized chaos. Patients paced back and forth, wandered off down the hallway or sat quietly at one of the tables in the social room. But the nurses knew the patients, and their behavior was expected. They showed extreme care in handling the patients, and were attentive to their needs.
He thinks the world of them, Josephine said of James relation to the staff in River Bluffs special care unit. He thinks the world of all those girls. He doesnt want to leave. We try to take him to the main dining room, and he gets all frustrated.
Josephine and Hilton said James even prefers the staff at the nursing home above his own family. They rank themselves far down James list of preferred guests.
Hilton said one of the most important things for people who know someone with Alzheimers disease is for them to realize the person with Alzheimers is an entirely different person from the one they remember.
This is no longer that person, this is somebody else now, Hilton said. Its hard to remember that. Because I even have trouble sometimes. And they dont acknowledge anything.
Like one of the men, Hilton said. When his daughter comes inand shes got a little oneand she wants to see her grandpa. Well, she gets disappointed every time she comes in because Grandpa is not like he was. And hell tell them to go home. And sometimes she gets so hurt by it. And her mom explains it and everything, but she still gets hurt by it. Shes little. And Ill say, How are you doing? And shell say, OK. And Ill say, Grandpa tell you to go home again? And shell say, Uh-huh. So its harder for the kids. Like my nieces and nephews, especially the girls, cry every time they go in.
Josephine explained one example of when one of her grandchildren came to visit James: They went outside and then they sat down, and he said, Oh, I love it out here. And then a little lady was picking dandelions. And the grandkid said, Grandpa, whos that lady picking dandelions? And he said, Shhh. Dont say nothin, thats my girlfriend, but dont tell your grandma anything, Josephine said with a laugh.
That was never my dad, Hilton said. Just like the dancing, he was never a dancer, but he dances all the time over there. Thats why I said, its a different person.
Hilton described a good day for her father as follows: Thursday was a really good day. When we got there, he was laughing and teasing the girls. And we walked in and he smiled at us. So we were shocked. And he was laughing and dancing, and he had fed himself his breakfast, took his medication, fed himself lunch, took his medication. He had to have a shot, and he didnt get upset about it. His whole day was like that…friendly. He patted a couple of the nurses on the bottom, which, he never did that kind of thing, but he did it. And he gets funny sometimes. And they said he has a good sense of humor. Hell make funny noises. But when hes in a good mood, hell talk to the other patients, and theyll walk arm in arm.
One day, his roommate, Melvin, we walk in, and he and Melvin are arm in arm walking the halls, Hilton continued. So we just sat down until they finished. But they were walking the hall together, and they do that with each other like comrades. Today, Melvin did that. Dad didnt want to feed himself today. So Mom fed him most of it. Then he didnt want her to feed him anymore, so I finished it off. And Melvin came over and was standing there and making sure Dad was OK and I wasnt doing anything to him.
Before we left the nursing home, Hilton and Josephine wanted James to perform his trick for me.
Come on, James, can you move your head, Josephine said. Come on, Dad. Sometimes Josephine calls James Dad or Jimmy.
James, who had awoken earlier to go to the bathroom and to eat a few bites of pudding that contained his medicine, sat with his head down, looking at the table.
Dad, can you move your head for me, Hilton prodded.
After Hilton and Josephine had given up, and it appeared we would not see James signature trick, James suddenly raised his head and contorted his face in a way that made the white hair on the top of his head move back and forth. Hilton and Josephine grinned and applauded.
As we got up to leave, Josephine leaned in close to James and asked him if he loved her. James, the father of three daughters and the father who used to play Santa Claus every Christmas, and the husband who proposed to his wife with a box of chocolates and who used to tell his wife how beautiful she looked every time she got cleaned up, blinked affirmation, and Josephine whispered in his ear, I love you, too, and kissed him on the cheek.
From the Jan. 11-17, 2006, issue