A nurse in York, Pa., shares her story about the Manor Care Kingston and Autumn House East.

I am an RN who once worked in an assisted living facility back in 1998 when most of the residents were able-bodied and needed minimal assistance. It was a home that was designed more for the elderly who did not want to live with their children and who could get around fairly well, but just wanted help with meals and housekeeping.

Now these very same assisted living centers are filled with nursing home type patients who require skilled nurses on staff to adequately care for them. Now, however, they are left in the hands of aides who have minimal training in medications and nursing diagnosis and care. If any type of medical problem crops up, they are sent by ambulance to the already overcrowded ER for problems, which could be handled within the facility by trained registered nursing staff.

Two years ago, my mother entered Autumn House East, a local assisted living facility in York, after living with us for five months. Her health deteriorated to the point she required 24/7 supervision. She was alert, ambulatory and bathing herself. She had COPD, had a heart attack and throat problems, and so she required monitoring for those conditions as well as for a swallowing problem from throat cancer. She was there less than a few days and each day there were major errors in medication administration for her cardiac and respiratory problems even though I had a typewritten list and all of her medications organized. I even sat down twice with the nurse in charge to clarify the medications. My mom’s medications were mixed in a big drawer with other patient’s meds in the medication cart. My mother was taken to the ER with severe respiratory distress because her respiratory meds were not being administered properly. She was readmitted to Autumn House and in one day, the staff there again managed to make mistakes with her medication.

Because of their negligence, she had another episode of chest pain and the aide who was left in charge overnight had no idea that she should administer nitroglycerin for chest pain. I had to instruct her over the phone on how to give my mother help. While she waited for the ambulance, my mother was left alone. She ended up in rehab at Manor Care nursing home for three weeks; they made errors in her medications. She was eventually discharged back to Autumn House on Christmas Eve.

By Christmas day, she had developed pneumonia. She was in hospital for two weeks then admitted to Manor Care for nursing home care. I cannot even tell you how many medication and treatment-nursing errors occurred. It was humiliating as a nursing professional to see such utter incompetence in the nurses there.

In January 2007, she fell because she was left alone while in respiratory distress. She coded, broke several facial bones and was admitted to the trauma unit at York Hospital. Her face was unrecognizable. She had made it through nine months of hell so she could see my brother come home from Iraq. But on April 5, she died 20 minutes after calling me on the phone requesting I come and suction her because she had been waiting more than an hour. Apparently, the staff was busy feeding patients.

After my mother’s death, I filed a complaint because I wanted to do what I could for those who remained in Manor’s care. I could have filed a wrongful death suit, but monetary gain was not what I wanted and I did not want to endure an emotional roller coaster of a trial.

I know how long these patients wait to get on and ff the toilet or bedpan, sometimes an hour or more because I was in there daily. I watched as one LPN pulled and tugged on my mothers feeding tube as she tried to open the cap, and then had the audacity to call me later and tell me my mother pulled her feeding tube out.

I realize the constraints on the staff and lack of staff. If nursing homes provided adequate staffing, which is MORE than what is legally required, more people would want to work there. Right now, they are so understaffed and exhausted. WHO IN THEIR RIGHT MIND WOULD WANT TO WORK THERE? You end up getting nurses who have long been out of training or who don't care. It is unacceptable to me that these places who make a fortune off these patients provide such lousy care. I will never ever place a loved one in a nursing home and will take my chances on them dying at home.

We cared for a 57-year-old friend who had no family a few months after my mother’s death. He was in Pleasant Acres, a county nursing home facility. I cannot say enough good things about this home, everything was excellent. So tell me the reason for the enormous disparity of care? The word here is greed. The big chains need to be monitored and have adequate staffing or close down. As an RN, I would never work for a nursing home because they expect one RN to be responsible for 150 patients, which is ludicrous and an impossible job.

When I went in to speak with the administrator and nursing supervisor, it was evident that they understood that during feeding time there are not enough employees to feed everyone in the first place and that during feeding time patients are left to wait over an hour or more.

I documented my mother's care so that I could remember the new orders and keep track of her care. In the end, it was shocking to me to go back and read the account of what we had gone through. I presented it to the administrator and supervisor and I believe they were as shocked as well. When I submitted a few of the problems to the state Department of Health via e-mail, no one contacted me. The department proceeded with an investigation without the adequate information necessary. The facility was cited, but I doubt very much has changed. I wish the fines and citations were reported in the newspapers so the public would get involved. We need to find a solution. And fast.

Connie Cramer of Glen Rock shares her story about the Broadmore Assisted Living facility in York.

My mother is 97, blind, in a wheel chair, and on oxygen 24/7 and in Broadmore Assisted Living, York. She is mentally alert, but forgetful. Due to the lack of staff in the home, I would pick her up, make sure she had proper clothing, and needed items for her daily well being...even putting on her make up which was important to her. She takes great pride in how she looks, and would always ask me if her outfit looked all right.

Her clothing would constantly be missing, items I would take her were stolen, and not being able to see, she could not find things for herself...or check her own clothing. I would put notes on her dresser if some item was missing, and eventually it would show up back in her closet. I would take her homemade cakes pastries and they, too were stolen.

Many times, I would pick her up and she would be wearing fleece pants in 90-degree weather. Since she had been in the facility, her roommate had been bullying her. This woman is much younger than Mother, and is capable of doing everything on her own--even to going out to shop. On one particular Sunday, I went to pick up Mother. She was crying and the nurse told me Mother's roommate was cursing at her. For me, that was enough. In front of five staff members and nurses, I told them this was going to stop. (This had been going on for six months with Broadmore doing nothing to correct it, except talk to both of them.)I have a letter from Broadmore accusing me of all sorts of things, which were false. Mother never complains. She was afraid she would be asked to leave.)

After having lunch at my place, she refused to go back to Broadmore and wanted to be taken to the Hospital. I had to convince her this was not an emergency. After getting back into Broadmore, she sat alone in the living room from 6:45 until 9:30 p.m. until a nurse finally came to take her to her room.

All of this may sound trivial, but since she has been in Broadmore, she has lost her self-esteem and robbed of her dignity.  I phone her every night and morning, and she relates tales of what is taking place. Since she had been in Broadmore, her "call button" never worked. When she had to use the bathroom in the middle of the night, no one would answer. She would wet the bed, which embarrassed her. When there, I myself had to find nurses to get extra oxygen for her, and not realizing her button was not working. After six months, Broadmore admitted it was malfunctioning because of the room location and signal not reaching it.

I have documentation of these infractions. I finally called the State of PA and any organization that represented the elderly; they investigated the bullying by the other resident. Broadmore lied to them and as a result, I am no longer allowed in Broadmore. I received a letter that I would be reported to the police if I tried to enter. The State upheld this.

Mother turned 97 in August, and I was not allowed to take her gifts or be with her. I mailed them. Broadmore never did anything special for her. When she called me, she said it was the most depressing day in her life. I hurt for her! Her life should not be this way.

The State of PA never asked me about an incident report even though I have reams of email documents and comments from Broadmore as to the problems. The holidays are coming, and Christmas is very special to Mother. I will not be able to see her unless I remove her from Broadmore. I am not using my health as an excuse, but I am 73, with a heart valve implant and heart disease. It is difficult to take her out with these conditions since I have to lift and load her wheel chair and oxygen bottle, and lift her into the vehicle. When I take her back to Broadmore, I have to call in advance and most of the time there is no one there to take her into the Home. We have to sit in the car and wait. Previously, when I could not take her out, we would spend afternoons together fixing her hair, doing her nails, and I would wheel her to the garden to watch birds. I would rub her frail little hands with cream, and just pamper her. She enjoyed these simple things.

She would call me and tell me things to bring to her like dental cream, powder, and snacks. Broadmore makes no effort to listen to her so, as a senior citizen, too, this is an abuse to me. I have had emergency room treatment, and Crisis Intervention help at the Hospital. I originally moved here just to be near her for there are no family members left except for a brother in North Carolina.

A roof over her head, and meals three times a day does not constitute "quality of life'. At 97, every day is precious. I have all the correspondence of efforts I have made for the TRUTH TO BE KNOWN ! I have tried to call the district attorney’s office to have a polygraph test taken. This is a small town, and everyone knows of our situation. People are appalled, since they know Mother and I have done many things together since I moved back here. I have everyone as character witnesses. Mother is being deprived of love and care. I am being punished as a daughter, caregiver, and link to Mother's outside world.

Mary Lou Pappolla shares her perspective as a long-time Pennsylvania-area hospital social worker:

I recently retired as a hospital social worker after 32 years practicing in a large teaching hospital in Delaware County, Pa. As such, I have had far more experiences with assisted living facilities than I would ever have wished for.

The problems I have found are generic in nature and not limited to any single facility. The first problem is a financial one. Because they are not approved by Medicaid, there is no Medicaid reimbursement. This, along with the fact that assisted living facilities can charge whatever they wish, means that there are no caps on their charges and fees. The sky is the limit, and often reaches the level of a skilled nursing home and beyond.

Only persons with significant financial resources can hope to be accepted into one. If persons are unfortunate enough to outlive their resources, they are evicted--usually into a Pennsylvania home that will agree to keep them on Medicaid. This can be a daunting task since Medicaid reimbursement is so low, and the facility has not had the financial benefit of any private payment. Pennsylvania absolutely must start by approving assisted living facilities for Medicaid consumers, and making it illegal to evict residents for financial reasons.

Also of primary importance is the safety of residents. The state needs to begin inspecting these facilities using the same criteria as they do for nursing homes since they seem to be providing the same level of care in may instances. Another issue that we in hospitals deal with on a daily basis concerns the right of these facilities to evict their residents for any number of reasons. If a resident is a behavior problem or has care needs that they don't feel they can handle, they wait until the resident becomes a hospital patient, and then they simply tell the hospital they can't take them back. As a result, the patient feels abandoned and rejected. The hospital loses much needed reimbursement because we must keep a patient who no longer needs hospital level of care until an appropriate discharge plan can be worked out.

This is no way to care for our elderly, our most vulnerable citizens. These facilities need to be held responsible for re-placing these patients if they feel they need to. For as many years as social workers have been dealing with the problems of assisted living facilities, I am surprised that it has taken so long for anyone to take an interest in the plight of these human beings.

Michael Hutchison shares his story about Highland Manor in Exeter, PA:

Through my HMO is where I find and found my doctors. Since I have been at Highland Manor I have been pressured to drop my HMO provider so that I would be able to go to the doctors that they want me to go to. I am tired of this pressure and I am afraid that my non-compliance to conform will negatively affect my care at the Manor.

I have had the same doctors for years. I am comfortable and satisfied with the care I receive. I want the choices that I currently have and I will not render those services. I feel that the facilities and employees of the facility should not pressure me into changing the care that I currently have. I have had many experiences with personal care homes and I fear that I may be alienated and labeled as a trouble maker. I feel that eventually I will be forced to change, losing my right of choice. I feel that being a person with disabilities I should not have this added annoyance that often feels burdensome apart from my everyday experience. I feel that staff is more concerned with the facility's self interest than the well being of the clients and patients who reside under their roof. My health needs are being met by the doctor of my choice. Why is so much energy going into coercing something that is not problematic, when there are so many other impending issues that should be addressed?

Emilio Pacheco shares his story about an injured resident at Moses Home in Philadelphia:

One of my staff went to visit a client at Moses Home in Philadelphia. This client is mentally disabled, very low functioning and had been moved numerous times from homes in Philadelphia. Moses was one of the only places that would house the client who had a low income and no assets. Every other facility wanted at least $1000 dollars in advance which is not possible or realistic for 95% of our clients. This staff’s visit to Moses became a true nightmare. As my staff entered to greet the client they found that he was bleeding from both knees and his elbow. He had bleed through his clothes. The worker checked the client’s wounds to find that they were untouched or treated. The worker tried to get information from the client as to what had happened but the client was verbally limited and could not express it in words. That being said the client could not communicate if he was in pain or what he was feeling. My worker frantically went to hunt down Moses staff to figure out what had happened to the client. My worker confronted Moses staff wanting answers! We got answers but, they were not good ones.  

Moses said that the client had fallen from the second floor stairs. Moses said that they did not see the fall but heard the patient yell after he had fell. Moses’ staff said that the client was a wanderer and cannot sit still. They said he will not stay in one place. Before going off about the lack of supervision my worker asked if the client was seen by a doctor or taken to the emergency room. Moses staff said “NO.” Nothing was done for this patient – he was completely neglected. My worker took the client to the ER to be seen. While waiting to be seen in the ER my worker noticed that the client’s foot was also swollen. The client was treated and fully examined. Fortunately there were no serious injuries caused by the fall.

The client did have an infection in his foot that was not a result of the fall. The doctor said it was a bacterial infection which is why his foot looked more like a football. The doctor said that the infection was most likely from unclean bathroom and poor hygiene. The doctor said that the infection was one of the worst he had seen. The patient was prescribed an antibiotic and was discharged from the ER.  After this turn of events we, with much advocacy and effort, got the patient moved out of Moses and into a nursing home. There are some questions to ask about this case. Where was the supervision? Where was the proper basic medical care? And where was the accountability of staff and the facility as a whole? All this could have been prevented and, more frightfully, it could have been more tragic.