J. Cozen of Merion Station, PA, writes about his father, who is a resident at Sunrise Assisted Living in Haverford:

My dad has been living at Sunrise for the last 2 years.  Within those 2 years his mental capacity has diminished tremendously, due not only to his age (now 90), but also to the fact that there are no activities offered that stimulate the minds of the resident – not to mention a tremendous lack of ANY kind of activity.  My dad is wheelchair bound due to an AKA of his left leg many years ago. I have found his wheelchair to be absolutely filthy, the seat pad (after having been stolen once and replaced by me for $200) to be drenched with urine and finding feces and dropped food on the carriage of the chair. When this was pointed out, it was cleaned, but why should I have to mention it?  The amount of money I am being charged to keep my dad there is absolutely outrageous in relation to the lack of attention and substandard services rendered. It is because of this that I, and many others, have found it necessary to hire additional health care workers (aides) to stay with my dad, bathe him, assist in his morning dressing and grooming ,clean his room, do his laundry and take him outside, weather permitting. This at an additional $2300 per month, over and above the monthly Sunrise fee. 

Last year my dad fell from his wheelchair in his bathroom and was found lying on the floor in a pool of blood (he is on Coumadin), with a fracture of his neck. NO one could tell me how long he was on the floor or how it happened. After his hospital stay and a stay in a nursing home he returned to Sunrise.  Let me add that during this month long absence from Sunrise, NO ONE so much as called (or sent a card) asking about his condition or progress. Upon entering the Sunrise of Haverford, I have seen many people sitting in the TV room, asleep, in dirty clothing, urine soaked clothing, coughing without so much as a being offered a glass of water or a tissue or any assistance to help stop the coughing, in various stages of undress (undershirted men), residents with dirty hands and nails and smelling of feces.  

One of the bathrooms has been out of order for some time, the washing machines are always in disrepair, laundry detergent supply empty, clothing missing or totally damaged because someone threw a feces-soiled bed pad into my dad's washing machine!!!!  Things being stolen out of the residents’ rooms, health care workers bringing their children on the job with these kids just roaming the hallways, going into residents’ rooms, and having the rooms barely cleaned adequately when they are cleaned at all. I find them understaffed, and some of those whom they rely heavily on, shirking responsibilities or just plain not in sight.  The ones that do work are overworked, and the good ones tend to quit ASAP, elevating "trouble makers" to positions of authority.

There are many of us who have met with management and been promised "changes and improvements and to be patient" … so far, way too little has been done and it's really way too late to try and convince me (and the others) that anything significant will be done.  Now let's talk about the food … overhearing a female resident telling the chef the meat was as hard as a "ball bearing" and hearing his response "I don't raise the animals" only adds insult to injury.  Some of the residents have difficulty chewing, some can't cut their portions, some have difficulty feeding themselves.  The staff is limited to 2 or 3 gals running around like crazy, and God forbid someone needs to leave the dining room to go to the bathroom, these same gals are responsible to help do that as well.  I've noticed some not wearing gloves, and who’s to say they all wash their hands – is there not a law governing things of this nature?  

I have also noticed the front desk totally void of any living soul for hours on end.  The residents depend on having someone there when no health care giver is in sight (often), and they are forced to just walk around like lost souls seeking whatever help they need.  Many times there is no manager or nurse on the premises – surely scheduling coverage can't be all that difficult. I've noticed at a few of our meetings complaints are brushed over, ignored or questioned as to the veracity of the complaint. In some cases I understand, but NOT when it comes from people who see first hand what is going on and are of an age where we are still totally aware of what is going on!  I have been told that most (if not all) assisted living places are all about the same (how sad). 

SOMETHING MUST BE DONE AND DONE QUICKLY....Imagine your own mother, father or other loved one not being totally capable of speaking for themselves and having to experience what few things I've brought to light here, and ask yourself, how can we correct this and hold the responsible parties accountable? Our parents have worked their entire lives for what? Having to live in a facility where few care and even fewer step up to the plate to accept the criticism and make the necessary changes, and then say to yourself ..."there for the grace of God."

Barbara Russell writes about her mother’s experience at the Sunrise Assisted Living facility in Haverford, PA:

First I would like to say that there are many wonderful care managers at the Sunrise of Haverford, which is located in an affluent Main Line area outside of Philadelphia.  They are caring and hard working.  They are understaffed and overworked.  And we have just been told that workers’ hours have been recently reduced.  The care managers are responsible for giving medications, serving in the dining room and caring for residents.  Their duties are stretched thin.  During meals it can be very difficult to find someone outside the dining room.  When the facility is without any directors, which seems too often, the lead care manager is in charge of the director's job.

Concierges are understaffed, so care managers answer phones up until 8 pm if no one is at the desk.  There is never anyone at the desk after 8 pm.  They are expected to clean even though there is supposed to be a housekeeping staff.  The evening care managers do laundry, vacuum & mop the common areas while being responsible for all the residents.   Ironically, one of our complaints is that my mother's room was routinely not cleaned nor her laundry done.

The residents are supposed to have the same care managers assigned for them to learn their specific needs and personalities.  This does not happen, especially with the high turnover of employees.  My mother had her days/nights mixed up and was left to sleep throughout the entire day for periods of time because we were told they were unable to get her up.  It became a cycle hard to break until we hired outside companions.  They had no problem waking my mother or keeping her up and her days/nights were back to normal for months until we cut back the aides' hours and Sunrise once again said they couldn't wake her up.   We are paying for a "higher level of care" and can't even get five minutes of time to wake her in the morning?

There was an incident recently when my mother's aide arrived late morning and found her crying in her room.   My mother told her that a group of kids came in and hit her with sticks and she said please find who did this to her.  The next day I found her hand was badly bruised and swollen.  While we know that her story was not true as she told it, I believe something happened to her.  I did report it to the director and nurse.  I believe that one of the "bad apples" who has no patience was in a hurry to wake my mother.   There is no way of investigating so all we can do is express concern.  I did specifically tell the director that we did not want one of the care workers to work with my mother, which we were assured would happen. Unknown to us, she was assigned to my mother that week.

There are the few bad apples who have been reported being overheard saying they spit in food, throw water on residents to wake them up and speak very unkindly to residents.  They have been promoted to leads and sit in the office when the directors are gone while everyone else runs their tails off.

Furniture in the commons areas are soiled with urine and maybe worse.  Residents can be found with dirty clothing.  The same care managers serving food are expected to change a soiled resident and then return to their dining room duties!  How can that pass health code??

My mother was 105 lbs for her entire adult life until she arrived at Sunrise.  She has gained 30 pounds from a combination of poor nutrition and lack of exercise.  The food is salty, fried, high fat, large dessert portions and usually unappetizing.   The new director told me there is a nutritionist in charge of their menu, which I find difficult to believe.  We were told up until recently that they couldn't serve egg beaters.  The choices of foods they serve to an elderly population can be baffling.

For the past few years the residents have sat all day and slept.  The new activity director is trying to get them active, but one person cannot do the job alone especially after conditioning them to be so sedentary.  There is no outside patio area that the residents can walk or wheel to themselves other than the porch where they go from sitting inside to sitting outside.  Some days you can find residents left inside to sit even when the weather is beautiful.  There is a walkway that goes around the building.  My mother who is a good walker cannot walk this alone as the walkway is not level and is impossible for a wheelchair.  Without the private companion or family member there is no one to walk with.  Once outside on the porch, residents are routinely not checked on, asked if they need to use the bathroom or are cold.

There has been no handicap accessible van for years. A new van has been in the parking lot for months.  There are finally tags for it.  Now they are waiting for corporate to send a check to file the tags.  So still no handicap accessible vehicle available.  Crazy.  How hard is that?

Billing is always screwed up and we are charged for services we do not receive.  In addition to our cost of the facility, we are paying an additional fortune which we cannot afford to have outside companions for a resident who can dress, bathe, feed and walk herself.   Without them my mother doesn't get up in the morning, misses breakfast, becomes disoriented and agitated, is up all night and the cycle continues.  The private companions also clean her room and do her laundry, which we pay Sunrise to do.

There is more, including how would such an understaffed night shift get three floors of residents out for a fire?  No nurse on duty for extended times?

Considering such a large number of family members have complained loudly for a long time you would think the new directors would be there more, have their shifts covered when gone for a week's time and have contact numbers. Over the course of several months, many of us have complained to the past executive director, then her supervisor, the supervisor's boss, to the Vice President of East Coast Operations, Human Resources and directly to Corporate.  The new executive director has promised changes and asks for patience.  It is very frustrating.

Here's the big question - why are we still there?   We chose this Sunrise because of it's location to family and the facility is small enough that my mother, who has dementia, can find her way around.  Now we are worried about the trauma of relocating and believe that Sunrise should make the needed improvements and provide the quality of care we are all paying for and that the residents deserve.

I would like to share a story which had a big impact on me.  My mother is a good story teller and comes up with some whoppers.  Some are inspired by TV (which should be monitored), newspapers and conversations.  One night not long ago, I called her and found her very upset.  She said that the hotel she was in was terrible, that her room did not have linens and she had to take her own from home.  The story then switched to her room had not been cleaned from the night before and had blood in it from that the prior guest giving childbirth in the room.  HOLY SMOKES! 

The next night I relayed the story to one of the night care managers.  I learned that night that there are truths even when we don't understand it.  It turns out my mother's neighbor who had psychiatric problems had tried to kill herself and awoke my mother screaming at 2 am.  My mother came out into the hall to find the woman being taken to the hospital all bloody.  Afraid to go back into her own room, my mother took her pillow and found an empty room to sleep in.  That was a reminder to me when I heard the story of the kids hitting her with sticks and finding her bruised hand.

Alfonso Joshua from Philadelphia describes his personal experience at Kaysim Court Manor:

I was being seen by “Dr. Bill” who is not a real doctor; he is a physician’s assistant under Dr Swartzman.  He was the house doctor at Kaysim Court Manor, the home I have been living at for eight years.  I started seeing Dr. Bill around the year 2000 up until 2006.  He would see us a few times a month and all he would do is listen to my heart and check my blood pressure.  He never sent me out for blood work or any other test and he would give me new prescriptions. He never told me what the medicine was for or what it was.  The home never told me what medicine I took, they just gave me the medicines and I took it. 

Sometime in 2006 I passed out in the hall on my way outside and I was taken to the hospital and Dr. Swartzman saw me at the hospital. They sent me home with more medicine. The hospital said my blood pressure was low, my cholesterol was high and my sugar was high; I guess the medicine was for that.  A few weeks later I passed out again at my program and they took me to Albert Einstein Hospital and I was told to get a new doctor by my insurance company.  I stayed there for three days and they ran all kinds of tests my new doctor ordered; his name was Dr. Ali.  Dr. Ali said my prostate was swollen and he ordered three colonoscopies and I was sent to a urologist.  They found prostate cancer.  After 38 radiation treatments I am now cancer free.  I don’t want anybody to go through what I went through.  I am alive today because I changed my doctor.

Sherry Weersing of Thornton, PA, shares her story about Sunrise Assisted Living:

I am appalled to read in the Inquirer about the lack of training and staffing requirements for assisted living facilities while at the same time allowing them to take sicker patients. We had to move my mother out of Sunrise in Westtown, Pa. after we were promised that she could be there until the end of her life. She has Alzheimer’s disease and moved there in 2001. After 2 years she had to move back to their locked "Reminiscence" unit, supposedly where they specialize in Alzheimer’s care. There was only minimally trained staff there, mostly college students. The med givers were not licensed. Over and over again I found they were crushing long acting medications. My mother started having seizures after she was started on Effexor XL because they were crushing it. It has been 2 years since we took her off it and 1 1/2 years since we moved her and she has never had another seizure.

She bumped her toe on one of the many pieces of furniture they have lining their hallways. It became infected. I pointed it out to them, told them to have the doctor look at it and that she needed antibiotics. By the time I was able to come back 2 1/2 days later, the infection was up to her knee, she was confused, febrile and they had only started the antibiotic hours before. I told them that oral antibiotics would not work for that and I took her to the ER. She remained hospitalized for 7 days on IV antibiotics. If there are any instances on off-hours, the patients are sent out to the hospital as there is only a nurse on call, not in house. Even if the patient has a living will and a DNR order, they will call the ambulance. They sent my mom to the hospital one night after she rolled out of bed, onto the fall mats. There was no change in mental status, no signs of a bump to the head, no other indications of a problem. She regularly rolled out of bed. She was a hospice patient and they still sent her to the hospital. I was at work so I had to call the hospital and tell them not to do anything and that I would be there after work.

Kari Burdeau of Phoenixville, PA, talks about her son’s situation at the Devereux Foundation:

My son, 17 years old, soon to be 18, has a moderate to severe form of autism, non-verbal, and moderately mentally retarded. He has been at the MRDD program of the Leo Kanner Center run by the Devereux Foundation for nearly 7 years. I know there is a greater need to protect the elderly. (My 96 year old uncle and 94 year old aunt are is an assisted living situation as well. They are doing fine because they can afford a reputable place), but the younger ones with disabilities in these situations are getting the short end of the stick. The health care and insurance coordination are a problem. The Kanner Center did try to take over the decision-making on his healthcare and messed up several times. It was expected that my husband and I would cover the bills no matter what. I have paid at least three hundred dollars because of the staff's ordering of meds he was no longer on or the medicine was changed to over-the-counter not covered by any insurance. They use a pharmacy that does not coordinate with our private insurance and is more expensive to the Commonwealth as a whole because each dose is individually wrapped. It still didn't stop one of the staff from giving my son all of his medicines in one instance thereby having him be overdosed and sick.  

My husband and I believe in paying our fair share and supporting our son financially but that does not give the providers the right to do things without our permission. We never gave up custodial rights to our son. This was supposed to be an educational placement. We seem to have some conflicting rules and regulations that need to be sorted out (IDEA 2004, MEDICAID, MEDICARE, 3800 and 6400 regulations; etc.) He is using a picture exchange communication system (PECS). He has had a form of that system since he was four. Three times in the last five years I have had to resurrect the communication system in the residence. The staff has either been not trained in PECS; allowed the pictures to be lost and not replaced; or not bother to make him use it or practice it. The staff ratios in his house are not consistent to what is appropriate for kids with autism. Many times it is 5 kids to one staff and there is not enough supervision. This adversely affects his educational plan as well as the service plan. Now they may increase the number of kids in the house without increasing the number of trained staff. It becomes very stressful to me and a hardship to the rest of family because I have had to constantly monitor what the staff and caregivers are doing. There are some staff that are very good but a lot of them are poorly trained and there is a high turnover rate. There does not seem to be any accountability for the quality of care and a chance for a positive outcome.