McCleary MRSA Prevention

April 2.  I got a call on April 1 to set up the Family Meeting.  Apparently this is part of every new Stillwater Health care patients admission.    The social worker, RN , Physical Therapist, and I will all be there.  My younger brother will be called in on a conference line.  I will meet one of them in Mum’s room at 230 today.

I hope I am prepared.  I have written my concerns on paper to try to organize them.  I have also listed all of her health and dementia issues, her likes and dislikes, diet needs and preferences, usual activities, etc.   I have spent a lot of time at the Assisted Living facility and I have done my best to keep abreast of Mum’s current status, in all things.  That was with no help from the Assisted Living staff.  I don’t think they really knew much at all about what Mum was up to, and if they did, they did not communicate it to me.   Not to rehash old grievances, but they simply did not have the time because of short staffing.

I met the Occupational Therapist in Mum’s room at 230pm.  While I sat there alone waiting for them, Mum napped in her bed.   While she napped, she chewed like she had something in her mouth.  When the OT got her up, she made her spit out some ground up meat that was in her mouth from lunch.  This is a bad sign that she is not chewing and swallowing well.  Holding this food in her mouth is called pocketing.   It is part of end stage dementia. Mum acts like she is in pain when she sits then stands.  Once in the chair, she just nodded off again, and I wondered if this wasn’t a bit cruel and pointless to bring her to our meeting.  But she was wheeled into a small conference room with us to attend.

The meeting was about an hour long.  We discussed her hearing, fatigue, lack of interest in food, difficulty swallowing, and other things.  The Occupational therapist seems to have hope that she can do well.  They will continue rehabilitation level of care for one more week, and at that time will determine whether or not to continue or change her level of care to Long Term Care, with less intensity of Occupational and Physical rehab focus.  She would remain in the same room, but with a different level of care, and a different payment source.  This would mean applying for Mainecare/Medicaid.  Medicare pays for rehabilitation but not for Long Term Care.

Mum was completely exhausted and disinterested in this meeting and she slept through most of it. Even so, the group set goals for her to be accomplished through PT and OT.    I was quite surprised that they brought her there in her wheelchair.  She had been napping peacefully when it was time, and she continued to nap while sitting upright in her wheelchair.    At the end of the meeting someone ordered her a small bowl of green jello and I spoon fed her the whole thing, but she lost much of it down the front of her pretty top.  This is such a drastic and frightening change from my mothers usual demeanor and level of health and engagement.

I got the names and contact information for all of the participants.  And I spent some time after it was over talking with the social worker.  She is also a Millinocket girl and we had that connection.  I gave out my business cards at the meeting and she wanted me to explain my volunteer work in patient safety.  I told her about my patient safety advocacy and I also told her I was writing a blog about Mum’s journey.  She said, “so, you are putting us on notice”.  I told her “not necessarily” but yes, I expect safe high quality care.   However, I do not expect miracles.   This was not a contentious conversation but expectations were laid out and very clear.  She was very receptive and said she would look at my webpage.

I asked when I could actually meet the facility doctor in person and they said to be there at 10am next day to meet with the PA from Penobscot Community Health Care.  This is the same Geriatrics practice that cared for Mum at Winterberry Heights.  I’ve had both  good and bad experiences with that practice.  In just under 4 years, the visiting geriatric NPs changed several times.  The various Geriatric Nurse Practitioners who visited Mum in Assisted Living knew that Mum has dementia and is a poor historian about her health, her problems and other issues.  I  asked in the past to be included somehow in their visits or at least get a call about any visits.  That rarely happened. I often learned about their visits to her when  I got her Medicare statements in the mail explaining the insurance coverage of the visits.  I wondered about the value of those visits. You cannot learn everything about a patient with blood and urine tests (which were often performed) without the benefit of an accurate history of symptoms.   I  hope it will be different at Stillwater Healthcare and that PCHC will have open communications with me.

Next, the PA’s visit with Mum…..

My Mom has been a resident of Winterberry Heights Assisted Living and Memory Care in Bangor, ME for almost 4 years.  She has dementia that has progressed over that time, but generally,  she has remained physically independent. She had an emergency call button on a lanyard around her neck, but she never used it because she never asked for anything.  One of the RAs told me the only thing she ever asked her for was toilet paper, and she shouldn’t have had to ask for even that!    She started using a walker around Christmastime 2017, after a bout with the flu and a hospitalization. When Mum became ill with the flu that year, nobody told me.  I monitored her and stayed with her every day until she was so ill I took her to the St Joseph Hospital.  She spent 3 days there over Christmas in 2017.  WH was on lock down for flu at that time, and I was not informed about it.  I only learned it by walking into it.   When Mum was discharged from St Joe’s, she got outpatient nursing, Occupational and Physical Therapy from St Joseph Hospital Home Nursing services at that time, and they did a tremendous job with her. It took a call to a doctor I knew from my work to get those services to Mum immediately.  The first 2 referrals, one from her Nurse Practitioner, and one from WH director, would have forced Mum to wait for over a week for her first OT/PT assessment.  It was Christmastime after all.  My expectations for continued care for my mother were superseded by the holidays.

During her lifetime, she has always been health conscious.  She walked a lot, outside most of the year, and on a treadmill when the weather was bad.  She attended TOPS (Take off Pounds Sensibly) to keep her weight in check.  So, even after she started using a walker, she would walk outside at WH when weather permitted.  We removed her treadmill after she tripped and fell about 3 years ago.  That fall was because an electrical cord was in the way, and we did not want to chance a fall from her treadmill.  Mum has essentially been like the EverReady Bunny…and we often joked about that.

This is what happened to my Mom at Winterberry Heights last week.

March 18. I went to visit her at 2pm.   She was in bed, in her nightclothes, and there was no sign of a lunch tray having been brought to her room. Her newspaper was still on the floor in the hallway. I wondered if anyone at all had looked in on her before my visit.   I already knew that she had stopped fixing her own breakfasts recently and so she routinely did not eat breakfast.  She was never interested in getting up, dressed  and down the hall to the dining room by 8am, right from her first days at WH.  So, it was most likely that she had not eaten anything that day so far.  She was confused and unaware of the day or time or if she had eaten.  She got up to the bathroom and then to her recliner with my help and she wanted something to eat.  She said she wasn’t sick, she was “just being lazy”.  But, of course with no recall, I can’t always rely on what she says.

I went to the staff and asked about her and express my concerns about her state.  After asking about her 3 times to three different people, I got several different stories, and finally after an hour and 3 requests, an assistant delivered a turkey sandwich and about 2 oz of apple juice. Then she ate a little something and drank juice and water.

I visited a second time that day at supper time and she ate a little bit then, and did not recall feeling ill.  I wrote an email to the facility director about my concerns about Mum and her response came the next day.

Hi Kathy,

I know your mum has been checked on and had not felt well the past few days.

I will pass this to nursing to respond to you.

Nursing (LPN as well as RN) who have been monitoring Gerry and the direct care staff I have witnessed bringing meals and beverages to her room .

Thank you for sharing,

We will follow up with you soon.

Penny

This was the first I had heard of her “not feeling well”, and Penny’s nurses never called me about anything. Communications from WH were pretty much non existent and I only learned about Mum’s issues by going there frequently. That is how I learned about the flu outbreak there, and how I learned that her blood pressures had not been checked every day for 2 weeks after her NP ordered it.  A few years ago, she had a change in her blood pressure medications and needed close BP monitoring.

The activities director told me on March 19  that Mum had missed just that one meal , yesterday’s lunch, in the past 3 days, and she knows because she was doing dining room duty over those days.  So, who was telling the truth?  Who knows?  I believe the activities director keeps close watch on all of the residents and she knows.

The next day March 19, I visited at the same time, and she had gotten dressed, and walked down to the dining room lunch, so I figured she had  simply had a bad day before.

I relaxed a little.

Then Friday March22 I visited and Mum really seemed “off”.  She was confused, and she was having a really hard time getting up from her kitchen table , where she sat having her in room lunch.  I got her settled into her recliner and went to the desk and asked about her again.  I came back to the room with the RN.  I had asked her to check her vital signs, her blood pressure, pulse oxygen level, pulse.   She had already checked her temperature and all were normal.  She told me she was going to get an order for a urine test to see if she might have an infection.  Because infections without obvious symptoms can cause confusion and weakness in the elderly,  I felt that was a good plan and I left Mum napping that day.  The nurse never got the order and no test was done.  I’m afraid I dropped the ball on that because I trusted the RN to handle it.  I should have known better.

Saturday March 23 Mum seemed a little better.  She had her meals in her room and she ate most of it.  She needed some help to her recliner, but she seemed brighter and better.  I was however worried about her weakness.

Sunday March 24 morning I got a call at 11am, that Mum had fallen between her bed and her bureau. They didn’t know how long she was down, but she was not unconscious.  They said there were no cuts except a small nick on her shoulder blade, and a bruise there.  I went to WH immediately.  I checked her all over, front, back, top to bottom and she seemed unharmed, except for the bruise.  I spent most of my day with her and helped her with her lunch and dinner and she ate fairly well.  But she seemed “off” again.  I asked about the urine test.  None had been done, No order had every been given.  So, I asked for a urine cup and a urine strip to test it and I would do it myself.  The CMA cannot take a verbal order over the phone for  urinalysis test, even though I called and argued with the NP and PCHC to give one.   With great difficulty, I obtained a urine sample and the dip strip test was normal.  I stored the urine in the fridge because I made an “appointment” for Mum to see the visiting NP at 930am the next morning.

I stayed until Mum was settled after her supper.  She was in her recliner lift chair, with an afghan, and a glass of water by her side on a chair side table.  Her walker was right next to her.   I was  absolutely assured by the CMAs and RAs that because she had fallen, she would be checked every hour.  So, I left to go home, taking the staff at their word, and trusting that they would help her to bed.

(note distance between the red chair and the needed walker and of course the broken glass in between.  there is also a photo of Mum that I took that morning,  but in respect to her I will not post that)

I arrived at WH at 9am March 25.  Mum was in the same spot, with the same clothes on, very somnolent, her chair side table knocked over, broken glass on the floor, her walker out of reach, and no afghan over her.  She was extremely sleepy. Her bed had not been slept in and no sign that any food had been brought in.   Once I determined that she was OK for a few minutes,   I stormed down to the desk, and clearly and loudly told them what condition I had found her and her room.  I told them this was lousy care and blatant neglect.  This was NOT acceptable by any stretch of the imagination.  At first I thought I would wait for the NP visit, but when she hadn’t even arrived at the building by 950 for my 930 “appointment”, I hustled my Mom out of there and brought her to St Joseph Hospital.  This morning was the culmination and the epitome of broken promises….the appointment time, the every 1 hour checks, the urine test, nurse contact, and on and on and on.   I was disgusted by all of this because my mother is precious to me.

She will never set foot in that place again.  Although I do not blame Winterberry Heights for my mother’s illness, they will  not get a second chance to neglect or harm her.

The Resident assistant was extremely sad about what happened, and so was the CMA.  Both cried a little.  The RA said she was responsible for that entire floor, approximately 30 to 40 residents and 15 of them needing lift assist.  She also said that her orders from the director were to be in and out of those rooms in 5 minutes.   None of this was her fault or the CMAs fault.  This is Corporate neglect, and profiteering….off these vulnerable elderly people and their families and off these hard working people who really do care and cannot possibly meet the needs of that many people needing attention.

So, my intention is to first help my Mom get better. She is 93 and has pneumonia that did not present any symptoms other than intermittent and increasing weakness and low appetite.  She needs rehab and Long Term Care.  She needs me.

Second, I intend to expose Corporate minions like the lying, false promising director of WH and her Corporation.  Private Assisted Living is a business, to make money.  It is not to “care” for anyone.  They should not be allowed to falsely advertise (verbally or otherwise)  services that they do not hire enough people to perform.  They should not be allowed to accept people with needs beyond their staffing abilities and capabilities.  This is corporate greed  that results in abuse and neglect of the elderly. Shame on them.  This is extortion of old people’s money and their families’ inheritances. under false pretenses.  This should be criminal.

These current events all happened to Mum within just several months of my meeting with Penny about the numerous Maine DHHS violations that resulted in a provisional license to operate just last year.  Many of those violations were services that were promised to me and my mother, that were not in place, like a full time RN on staff.  They went months without an RN on staff.   During my hour long meeting with Penny about the State of Maine violations, I was promised the moon…everything would be fixed, heads would roll, and they would be fully licensed again.   I had my doubts.  I have met many Pennys in my lifetime and I have learned that nobody is that perfect.  I hoped for the best of course, because I wanted the best for Mum.  But I was spot on with my impression of Penny.  Somehow, they did regain State Licensure.  I can’t imagine how..perhaps by just glossing things over while inspectors were there.  Or, maybe by falsifying records of things that were not really done.

Part 3 will be about Mum’s hospitalization.  Long road ahead.

Nobody deserves compassionate gentle and attentive care more than our elderly.  They cared for us, our families, our kids and sometimes even our pets, and they deserve the best in their time of need.

My mother is nearly 93.  She was a full time mother and homemaker and would proudly say  “this is MY job”. There is no doubt that she excelled at her job.   She cooked big nutritious meals well into her 80s, at that time for my Dad.  He died in 2009, and her cooking pretty much stopped.  She claimed she had ‘retired’.    She gave birth to me and two brothers,  taught us, nursed us, and nurtured us.  She knit, crocheted, sewed, kept a spotless home, reupholstered furniture, painted walls and house trim, gardened, played, swam, fished, played cards, played piano,  and attended church on every Sunday and Holy Day.  She loved the water, swimming, boating, fishing and camping and a loud family party was always welcomed…food, drink, swimming or dancing.  In their day, she and Dad could really cut a rug and I can picture them to this day dancing at my own wedding.

She always had a wicked sense of humor and she was also a very strict mother…something that I didn’t always appreciate.  But, in her eyes, I have become a “good girl”.  I suppose that is so.

Just to be very clear, she is considered royalty in her extended family.   She is the youngest of 10 children, 7 rowdy brothers and 2 sweetheart sisters. She is the only sibling left and she has lived longer than any of them.   Her Dad died when she was just 13, and her Mom lived on  for many more years. Mums mother suffered with mental health issues, but she remained in her own home and the local sons checked in on her and brought her what she needed.    Mum and her Mom relied on those older siblings for a lot of things.  They took care of each other and they were a fun loving faithful and extremely entertaining and talented family.

Mum married Dad in her early 20s and had my brother and me not long after. She also had one full term stillborn baby, and finally 18 years after me, my younger brother was born.  She was 42 then.  They survived poverty because of Dads hard work in a paper mill and some loans from family, and they built a comfortable life for themselves and us.  They cleared a lot and built their own home from the ground up in 1955.  Mum did most of the painting and decorating herself, including making lined draperies, curtains, and bedspreads, and reupholstering furniture.  They lived at 18 Winter St in Millinocket, ME  for over 60 years.

So, when Mum started showing signs of dementia within a few years of Dad passing, it was alarming and so very difficult to process.  She was the strong one.  She saw Dad through his last weeks and months, dying because of Hospital Acquired MRSA and ongoing health issues.  She went to him every single day for the three months while he was hospitalized and then in the nursing home.  He only wanted her.   Now she needed us, to help her and to guide her through her last years of life.  She had no children living locally, like her Mom before her. And, she had no desire to move in with her kids.

Mum very reluctantly left her home of over 60 years and has spent almost 4 years in Assisted Living here 5 miles from my home in Bangor, Maine. Even with her level of dementia, she has never forgotten her “home” and asked about it constantly. Sadly, I think she held me responsible for the loss of her own home.  Of course, as her POA, I was responsible, but I did it with her safety and well being in mind.   That house has been long since sold to a new family.    My brother and I chose Winterbery Heights after looking at only 2 places. The other one was dirty, it stunk and the room was horrible…all for the same price.  This one was certainly attractive and clean.  It smelled nice. There were nice big windows and a lot of natural light.  The staff was very welcoming and friendly offering a “Red Carpet” welcome. It was the Taj Mahal of local assisted living facilities.   I have learned since that some of that glossy facade was deceiving and a lure, but there are certainly some exceptionally caring people employed by this place.  I must give those workers credit.  I have seen them work until they are red faced and sweaty  caring for those elders.  Staff faces changed all the time and only a very few of the staff from 4 years ago is still there. I stopped trying to learn and remember their names.   I should have seen their staffing turnover as a warning.  I assume that the ones who aren’t there anymore were either worked to death or they just moved on.  The new director (the fourth one in 4 years) is also known for firing people at the drop of a hat, so I am sure that accounts for some of the more recent staff turnover.

I learned two important things during  Mums assisted living experience.  Appearances are not everything, and you cannot expect excellent services just because a place looks nice. Also,  Assisted Living is not a level of health care.  And one cannot expect and rely on caring, particularly if there is any decline in the resident’s strength or health.  Basically, it is a hugely expensive rent with housekeeping, meals and a passing “look in” or reminder a few times a day, if that. That housekeeping is limited to vacuuming, bed changing, trash removal and bathroom cleaning.  The kitchenette was filthy with dirty dishes, a sticky countertop and a mold clogged drain all the time, until I could get there to clean it.  There was a layer of dust on everything.  Furniture was not moved to clean underneath.  If things fell onto the floor and it wasn’t in the middle of the floor, it did not get picked up. There was always a clutter of used tissues, candy wrappers and other debris around her lift chair and her bed.   Until just recently I also had to do her laundry.  After they started doing it because I nagged so much about it, many of her favorite clothing items and linens disappeared or were ruined.    They do however poke pills into the residents regularly, because they make $500 extra a month for each resident. So, early on,  to save Mum money I organized her medications myself for about 2 and a half years.  They were poured into 28 day pill organizers, two of them, one for AM and one for PM meds.  But, she started forgetting to take them, sometimes for several days at a time.  I couldn’t rely on the staff to remind her and because I poured them, they could not legally take them out and hand them to her.

If the resident is ill or having a bad day or week. they may be left in bed without food most of the day.  If the resident “refuses” to change their clothes or go to bed, they will not “force” them, meaning they will not take the time to cajole or convince them that this is the safest and most comfortable thing to do. I have to say (in defense of the direct care staff)  they do not take the time because they are understaffed and they do not have the time.   Food may or may not be delivered when the resident cannot walk to the dining room. I can’t recall the number of times I have had to request an in room food tray for Mum on the days she isn’t up to the walk to the dining room.    Unless the resident has a regular advocate or visitor, there probably will be neglect (unfed, unclean, not cared for) and that is what I found at my mother’s place this past week.  I don’t blame the RAs (Resident Assistants).  I blame the greedy for profit corporation that makes each of them “care” for 35 or 40 residents at a time for days and months at a time, with up to 15 of them needing to be lifted out of bed, the toilet, or chair. They are called lift assist residents.    The Corporate owner of Winterberry Heights is Hawthorn Retirement.  When a director assigns too many residents to the RA and then tells them, “I want you in and out of those rooms in 5 minutes”  that is a direct order from the corporate voice that will result in neglect or harm to residents. It is a set up for neglect.  It is a clear message that their job is to generate money for the Corporation.  They accept residents (and their checks) who they cannot care for adequately with existing staff,  to fill up the rooms and make a ton of money.  They make promises they do not keep and they should not be allowed to even house residents with needs beyond what they can  deliver.  Mum’s “care” plan was one of the lowest priced ones at $4230 per month.  All of her life savings was spent on assisted living.

Assisted Living is not health CARE.  Residents and families should be made aware of this right from the get go. Empty promises are just to get you in the door and to give them the first check for rent.  There will be many exaggerated and then broken promises of “care”.

My mother, and your elderly loved ones deserve better.

I will write about what happened to my Mom in a second part of this blog.  This was just part 1.