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Warehousing the Elderly Part 5, The Family Meeting April 2

May 15th, 2019 No comments

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…..


Warehousing the Elderly Part 4 Rehabilitation

April 23rd, 2019 No comments

Note:  I have decided to continue writing about my mother’s final journey,  in hopes that others can learn and better navigate their own end of life.

March 28.  I am starting to have hope.  I may  have to change the title of Part 4.  Mum’s new caregivers at Stillwater Healthcare are not warehousing her, they genuinely seem to care.  These CNAs are sweet, young, energetic and kind. The RNs and LPNs by in large also seem involved and caring.  They know more about Mum in just a few days than any of the assistants at the assisted living facility ever did in almost 4 years.  They care about what she likes to do, to eat, to read and to play (cards games if she gets better).  They are working to accommodate her hearing loss..writing notes if she can’t hear them, making sure her amplifier is in and that they speak loudly.  They suggested a TV with subtitles. They are even trying to accommodate her napping schedule.

Mum was delivered to a bed by the window at Stillwater Healthcare on March 28.  She accustomed to a big apartment with separate living room, dining area, kitchenette and bedroom with bath.  She now shares a modestly sized room with a roommate.  Her roommate is non verbal but she screams.  It is not her fault and my heart breaks for Mums roommate, but it is very difficult to both deal with Mums challenges and this screaming.   Mums hearing loss is quite convenient now, because this does not disturb her.  I can’t say the same for me.   Mum seems content, but also very tired and confused.  She is unable to manage an apartment anymore , and she is certainly too weakened to get around in one.  These new digs are small, clean and organized.  She has a tiny bureau and closet, and bathroom.  Her walker and wheelchair take up any leftover space.  There is one chair for any visitors.  Things fit  there kind of like a puzzle, but the staff works to keep it neat and organized.

My early impressions about this rehab/nursing home is that the staff is professional, caring and kind.  They are meeting her new dependency and needs with skill and efficiency.  Her CNAs do most of the hands on care.  Mum is up and dressed each day in her own clothes in warm layers.  She looks brighter and cleaner than I have seen her in a while. Right now her food is served to her in her room.  She is eating very little, but is certainly spending more time up out of bed each day.  One day she is  engaged and curious, but the next she may be sleeping and not eating.  Her health,status and progress is a roller coaster ride for sure, and I know I need to be prepared for any outcome.

I want her healthy, funny, sassy and asking questions again.  I hope the staff and my frequent visits can accomplish this, but she is almost 93, and it could go either way.  And if she is just too worn out for recovery, I don’t want it forced.  She has been my strong amazing and healthy Mum for a very long time.  She deserves a good rest, or a recovery, whichever comes.  I will be appreciative to this staff for either.  They seem to be doing their absolute best for Mum.

Next.  The Family meeting……….

Warehousing the Elderly Part 3 moving on to the hospital

April 6th, 2019 1 comment

On March 25, two Resident Assistants at Winterberry Heights helped me to load my Mom into my car and bundle her up to take her to St Joseph Hospital Emergency Department.  I brought along the urine sample in case it could be used.   It was a relief to see WH in my rear view mirror.  My husband, son, and brother would spend a good part of the next three days moving my mothers belongings out of Winterberry Heights.  Also, later I picked up her medications which she had paid for.  When I got them home I found 3 full cards of bubble packed prescription medications that belonged to a different resident.  Big mistake, and a very careless mistake.  We returned them that day.

At St Joes I asked for help to get her out of the car and into the building.  Both of the nurses wore masks and I asked immediately if there was an outbreak of flu or anything else there, because I feared for my elderly mother.  I was assured that they just wear the masks as a precaution.  She was delivered to registration, where they could not find any of her old information in the computer because they entered a space between the two Cs in her name.  Because of that, she ended up with 2 separate medical records that had to be merged to one….at least I hope they did that eventually.

She was immediately taken to an ER exam room, where she was gently helped onto the stretcher.  Her triage nurse and her primary ER nurse were both men and both very professional and skilled.  She got blood work, IVs inserted, straight catheterization, chest and left leg xray.  She has pneumonia in her Right lung.  That would certainly answer why she was feeling so weak and poorly most of the week.

Mum was admitted to the Hospital as an inpatient (as opposed to a Medicare Observation patient).  This was a relief because I was pretty certain she would need at least rehabilitation if not long term memory care. There is a trick with Medicare that they will not pay for rehab if the patient as not been admitted as an “inpatient” and been in the hospital for 3 midnights.   Her young foreign doctor was very kind and thorough.  I was pleased that they did not do a lot of expensive and unnecessary testing, and he considered Mum’s age and condition in all decisions.

She was moved to the 6th floor, where she spent 3 days.  She was cared for by RNs, CNAs and nursing students.  Each and every one of them were respectful, funny, engaging, kind and skilled.  They all work very hard.  This work is not for sissies.   I had no complaints about Mum’s care there except that she was left upright in her chair for far too long one afternoon.  She was extremely exhausted.  Also, she got a stage 2 pressure bedsore on her tailbone that we hope will heal and not get bigger or deeper.  The sore was first noticed later, on admission to Stillwater Healthcare.

On days 2 and 3, Mum perked up a bit.  She got a little testy and sassy. When I told her to be a “good girl” when I left one afternoon, she stuck her tongue out at me (this is a little ongoing joke between us).  Also when I was leaving another time, she asked me what the syringe full of saline on her over bed stand was.  I picked it up and said it was a SHOT and I  teased her that I was going to give her a SHOT.  She looked at me and began fiddling with her hands and fingers and finally with a lot of effort, she flipped me off!  That’s my mother and her wicked sense of humor.

OT, PT and Speech therapy all evaluated Mum at St Joes.  She was extremely weak ,but they gently helped and encouraged  her to walk with a walker, to the bathroom.  The speech therapist recommended soft solids and liquids for diet because of a swallowing test they did on her.  We do not want to risk another pneumonia from aspiration.

The Social worker and nurse case manager both worked hard to get Mum into Stillwater Healthcare which was the facility of my choice for her rehabilitation.  I have heard good things from family members who have had people cared for there, and it is literally 2 minutes from my home.  I am so exhausted by now that I need things to be a little more convenient.

A very kind gentleman with a wheelchair came for Mum, and took her to the wheelchair transport van. He transferred Mum to Stillwater Healthcare on March 28.  Next chapter……..

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Warehousing the Elderly, Part 2

April 4th, 2019 No comments

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.


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.

winterberry winterberry1


(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.



Warehousing our Elderly Part 1

April 3rd, 2019 No comments









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.


This is how I would stop HAIs

January 9th, 2019 1 comment








People ask me what I would do to help stop Hospital acquired infections. It’s been 10 years today since my father died of HAI. Right after he was infected with MRSA, I started researching the causes, the prognosis, the incubation period, prevention, spread and prevalence of these infections. The subject is complex and broad, but these are a few of my ideas about how we can actually make a huge dent in this problem.


1. Get a more accurate count of infections and the deaths caused by them and make it public. Transparency and accountability will lead to better funding and actions to stop this scourge.

a. Develop a way for patients or their family members to report their own infections, because we know hospitals and other healthcare facilities are not reporting all of their infections

b. Require that all infections that contribute to a death, be listed as a cause of death (COD) on death certificates in every State.

2. Require Hospitals/LTCs/Dialysis centers/Surgical Centers to post any current outbreaks on their websites and in plain view for incoming patients.

a. “Outbreak” must be defined first.  Currently ‘outbreak’ means something different according to what infection is being discussed.

3. Rapid screen patients for MRSA and other common infections on emergency admission, or a week in advance of planned admissions. Practice Universal precautions without exception. Postpone elective surgery until the patient has been decolonized.  Contact precautions must be followed without exception for all MRSA colonized and infected patients. All other precautions according to the offending infection must be followed to a tee, by all staff and visitors and this must be enforced.

4. Put everyone in their own room, preventing spread of infection from one patient to another in the same room.

5. Clean up Hospitals and the equipment in them. Assign each patient their own frequently used equipment, ie. Blood pressure cuffs, wheelchairs, walkers, etc.

6. Handwashing all around every time, before and after touching,  nurses, doctors, xray and lab  techs, visitors, and anyone else who touches patients.

7. Help patients to understand their own role in prevention of infections, examples are  handwashing, general hygiene, covering wounds, good nutrition/hydration, covering coughs, not wearing slippers that have been on dirty floors into their bed.

8. Give the Federal and State CDCs regulatory powers. This way, instead of writing recommendations, they can write requirements. Every hospital that is held accountable for infections that they caused, will say “we met the CDC recommendations” and/or “We met the standards of care”.  And they may have met some of them, but certainly not all of them because they don’t’ have to…none of the recommendations are mandated.

Also, the CDC would not have to wait until crisis to go into places with known problems. An invitation would not be needed. Places with known infection outbreaks and/or ongoing infection issues could be visited and problems remedied without waiting for permission to enter. Not a single patient should become infected because the CDC is waiting for an invitation to help the facility.

9. Stop paying Hospitals and other Healthcare facilities for the costs of these infections.  Nobody should have to pay ONE PENNY for an infection they caught while in a facility. Penalties are not enough.  Stop payment from any source patients, insurances or the Federal Government.



This is my short list of ideas. They were gleaned from all sorts of experts and meetings on the subject of infections.  If these things had been in play when my father was hospitalized for rehab for a simple ankle fracture, I sincerely believe his infection would have been prevented.  Two other community members had already died of hospital acquired MRSA infection the same month he was admitted. No outbreak was declared and nothing was ever reported on a State level about that.  No extra precautions or steps were taken to stop the hospital MRSA outbreak.  There was no consistency with handwashing, gloving or precautions even after his infection was diagnosed.  With some hard work and dedication to patients, we can stop this from happening to others.

Merry Christmas!

December 20th, 2018 No comments

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I turn into mush at Christmas time.  I start to think about past Christmases and people I miss, like my father, and friends and family that I never see anymore.  The nature of my work in Patient Safety keeps me concerned and angry a lot of the time, but  I have a hard time maintaining that during the holidays.  Recently I had to take  a break from a social media page, just because  of the griping, anger and finger pointing.

I have been reflecting on the people and things I am grateful for in my life.  I must be getting old and sentimental.  That’s ok, it’s good to say out loud who you appreciate.  Because so many of my recent conversations have been about nurses I am going talk about the nurses  in my life that I have been grateful for.

My aunt was a nurse.  She is gone now but she was very smart and she advanced her nursing education to become an anethetist.  We were not extremely close, but I always appreciated her input into my work and profession.

My first memory of being cared for by a nurse was when I was 5 years old.  My parents did a two for one, getting both my brother’s and my tonsils and adenoids removed.  I was sick to my stomach after so the nurse said as soon as I felt better I could have ice cream.  OMG….talk about getting to my heart.  I got better quickly and she was good for her promise.

When I was 10, I was hospitalized 70 miles from my home for issues with ear abscesses and for surgery to remove scar tissue where my adenoids use to be.  My first stay was in a large womens ward (8 beds or so), and I remember how efficiently the nurses removed the body of an elderly woman who died.  They were professional and silent behind those curtains.  I also remember how stern they were with me when they forbade me from visiting  the other little girl in the ward, because I was infectious.  They were protecting both me and her from further infection.  And then I really really remember a very kind and handsome orderly.  I was just old enough to have a crush.  I was actually mean to a nurse because I requested that HE take care of me…I was a besotted and demanding little girl.

Then there were the  nurses in my doctors and school offices when I was a kid.  I was a pretty hearty kid, so I didn’t have a whole lot to do with them.

In 1967, I went off to nursing school myself.  Some of the most amazing nurses in the world helped me to learn and to turn into a pretty decent nurse myself.  Then of course there were the staff nurses in the hospital where I trained.  They were our mentors and teachers too.  The patients were theirs, not ours.  But, we were assigned to their patients to learn and learn we did.  Looking back, they had to be the smartest and most patient nurses around to do that.

As a nurse so I was surrounded by nurses at my work.  Their abilities, and knowledge blew me away.  Nursing is continuous learning, and they taught me a lot.  I learned so much about how to establish a nurse to patient relationship.  Nurses have a particular skill to understand patients and to establish a 2 way trusting relationship in the first few minutes they meet.    I hope I passed along a lot of what I learned.

In 1973 I had my first baby.  Nurses taught me proper breathing, and coached me along during my labors.  They encouraged me and guided me until my first large baby boy emerged into this cold bright world.  I will never forget those nurses and their intelligence, their gentle touch and their guidance. The doctor just showed up for the main event.  I had a similar experience again just 2 years later. Those were two of the most significant events of my life, and my nurses were a big part of it.

When my youngest son was 10 he had his appendix out.  I would have given my right arm to go under anesthesia instead of him.  A nurse anesthetist found me in the hallway bawling like a baby and she stopped and asked me what was wrong.  She took the time to listen to my concerns, my fears and how powerless I felt about my sons experience.  She spent a lot of time with me and helped me through that fear.

I have had a few procedures while under anesthesia, and I was a nervous wreck about it.  When I awoke after surgery crying, every time,the recovery nurses asked “are you in pain”.  “NO”  i said.  “I am just relieved”.  They were so incredibly kind to me and helped me to get up and get out of those places as soon as possible.

Nurses have educated me, relieved my pain, responded to my needs and treated me with great concern and gentleness.

Then my Dad got a hospital acquired infection.  I was very angry.  He did not recover from that and died just about 10 years ago.  I wanted to blame the hospital, and everyone in it.  But as time passed, I recalled specific nurses who gave him incredible care.  They were respectful, kind, and gentle.  They used every recommended step in his care and they used the appropriate precautions for infections.  I remember the special touches, the ones who checked the condition of his skin, who kept him and his room spotless the ones who rubbed lotion on his heels and back, the ones who taped a paper bag for trash on his bedrail, the ones who brought him fresh cold water or coffee whenever he wanted it.  There are too many details to list, but what is seemingly a small thing may be a big thing.  I still blame that hospital for his infection, but I do not blame the entire staff of nurses and doctors, not anymore

After my father died, I wanted to do something to help stop the hospital infections like the one that killed him.  Who lobbied for my bill?  The Maine State Nurses Association.  Yes, nurses did that.  They know that hospitals can be unsafe for patients, and they want to stop that too.  We managed to get part of that bill passed into law.  Since then, I have helped them with their campaign to get better staffing in all hospitals, to make patients safer.

Some of my best friends are nurses.  Most of them sacrificed family time to work on holidays like Christmas to take care of other people who were sick or even dying.  Nurses nurture, comfort and give, and when the patient is dying, they hold a hand and talk to them, right along side the family.

The vast majority of the nurses are  professional, ethical and dedicated to the sick and dying.  It was no surprise to me to read the following news article today.  Thank you to the nurses in my life.  You have made an impact on me, my family and each other.  Keep up your tremendous work.



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Ten years later

October 26th, 2018 No comments






Ten years ago right now, my father and my family were in the throes of a tragedy.  Dad had fallen and he broke his fibula.  The fibula is the small bone on the outside of the lower leg/ankle.  That injury was simple and uncomplicated, but because of his condition and age, he needed rehabilitation.  In Millinocket, Maine, in home health services are scant and the local nursing home does not offer rehab, so he was kept in the tiny community hospital for 12 days of rehab.  And that is where his real troubles began.

He did well with rehab.  He was discharged home and walked in without help.  He was using a walker. He was home for 2 nights and woke the second morning unable to sit up.  His weakness was so profound he was anchored to his bed.  This was his first symptom of the MRSA infection in his lungs that eventually killed him.  My mother called me (70 miles away) and we decided that he needed to go back to the hospital by ambulance.  He never walked again, and he never came home.   He suffered through sepsis, profound weight loss, skin ulcers, thrush, rashes, hearing loss, a urinary infection, and he had become a bed bound, profoundly ill man overnight.

He was #3.  Two other beloved community seniors had become infected in that tiny 25 bed hospital with MRSA, and  they died earlier in the same month.  This was an outbreak, and nothing was ever disclosed.  My family was not given information that could have helped us to avoid my father’s infection.  Dad’s deadly debacle started in October 2008, and he suffered through weeks of debilitation in a nursing home until he died on January 9, 2009.  He was just a shadow of himself by then.  He had lost over 50lbs and was a skeletal version of his usual self.  He was 6 feet tall and weighed around 125lbs when he died.

I am positive that my father’s infection was preventable. I blamed my father’s hospital for their carelessness with my Dad’s life and for not taking the steps necessary to keep him safe.

What has changed since then, in regards to infection prevention and CDC policy.

Not much.

The CDC still fails to define an outbreak.  Is an outbreak a single deadly infection?  Is it 2 or 3?  WE NEED A DEFINITION.  My opinion is that if a single hospital patient catches an infection that another patient had or has, that is an outbreak and it should be treated as an outbreak, not as routine.  Also, any outbreak information must be made available to any incoming patient, and the community..  Public transparency is a must.

Next, the Federal and State CDCs do not have regulatory powers.  This means that they have no authority to go into facilities that have an outbreak.  They have to wait for an “invitation”.   Honestly, this is not a birthday party, this is serious life threatening infection business and the CDC must have regulatory powers.  Writing recommendations is lovely, but hospitals and other facilities get to choose whether or not they follow them and whether or not the CDC can pay a visit to their facility.  The CDC must have enforcement and investigatory powers.

The actual number of deaths caused by Healthcare/Hospital acquired infections is a moving target, by design.  Hospitals are very reluctant to own and report the infections that they cause.  The love to blame patients for their own infections.  One step that would give us more solid numbers of  HAI deaths is to mandate that they be listed on death certificates.  Any state can tell us how many people died of food poisoning, or if a car accident death was because seat belts were not used, but they can’t tell us how many people die of hospital acquired infections.  That is because Hospitals have far too much control over what is reported and what is not.  We need to take that choice away and make it mandatory that if any patient dies after becoming infected in a hospital, that the infection is listed as a cause of death.  This gives us statistical information and a more accurate death count.

I am still an advocate for active detection and isolation.  Rapid screening for MRSA, along with a detailed and rigid approach to MRSA prevention has helped the VA hospitals in our country to reduce their MRSA infections by 70%.  Why then do private and other public hospitals reject this method of prevention.  It is much cheaper to prevent infections this way than it is to treat them and our lives depend on effective prevention.

There are a million ways to help stop this scourge of hospital/healthcare infections.   Suffice to say, that in the 10 years since my father was infected by his hospital, I am involved in the exact same conversations with the State and Federal CDC as I was then.  There has been a small measure of progress.  There is a lot of push back, by the powerful Hospital lobby.  Frighteningly, there are more and different drug resistant infections being reported every day.  It must stop.  We have firm up regulation, and we have to permeate the protective and secretive shell that hospitals have around themselves….we need to put that shell around patients, our loved ones.

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International advocacy

June 8th, 2018 No comments

KenyaWorldMap-2in42u7-632x365So, this was a twist.  I got a message from my sister in law, looking for advice for her friend, who runs a mission in Kenya with her husband who is a pastor.  He had suffered with an infection in his lower leg for many weeks.  The doctors called it cellulitis, then he got a large sore that opened and drained a lot.  They saw a doctor and were given oral antibiotics after they did a culture and sensitivity of the drainage  to determine the correct medicine. According to his C/S report, he was on the correct antibiotics.  He was not responding. He developed another small sore and more redness,  his drainage didn’t stop and he had more pain.  She posted this photo.  I have seen this kind of thing so many times.  I offered this advice.  Go back to the doctor. Ask about IV antibiotics. Cover it so the children they care for in their home/mission do not get MRSA (staph).  Don’t mess with it because it could affect bone and the joint.   She got a ton of other advice, some much more technical on her FB page.  The next day he went into the hospital.

His infection was surgically cleaned out and he was put on IV antibiotics.  Today,, only 2 days later,  his lower leg is the normal size for the first time in many weeks.  This is definitely a blessing.

These incredibly generous and loving people have shared their story and experience and agreed to let me post some photos of the hospital they are at in Kenya.  This hospital is the best one there according to this woman.  I am sharing all of this because we often complain and worry about our own hospitals, and care and safety while getting care  This is not unfounded worry, but sometimes we forget what we have.

After this pastor had his surgery, his wife found him in a hallway, alone, and out of it.  They anticipated local anesthetic, but instead he got general anesthesia for his surgery. This wasn’t surprising since it is so  hard to anesthetize infected areas.   He was not being monitored, no pulse oxymetry, no nurse around.  His eyes were open but he had no idea what was going on.  This was extremely scary for this couple.  Think about post op arenas here in the US…with cardiac monitoring, nurses close by, , pulse oxymetry and pain control.

I am sharing these photos to show how stark and minimal the hospital setting is.  We are very fortunate here in the US.  I know not all of our facilities are equal, and I know that patient safety is a huge issue, but we must be thankful for what we do have. Despite the spartan surroundings in this Kenyan facility, this young Pastor is healing.

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They have only recently gotten this clear tape for IV ports.  They used white adhesive before this with bad results..not being able to see the site well, slipping etc.


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“Amenities????. Slippers, toilet paper, toothbrush, Colgate (any brand of tooth paste is Colgate here), body soap, mafuta (Vaseline) and a bath towel (it is the size of a hand towel). Oh and if you run out of any of these things during your stay you are required to purchase your own”

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“Toilet, shower and sink all in one small space. Notice there is no toilet seat/kid, that is the Kenyan way.”

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“The shower side and for the most part they keep this hospital very clean!”
I was so happy to help this couple.  They love and care for sick and malnourished children every day.  The response to a request for help came back to them in spades.  And it seems that he is now over the hump with this serious infection.
He much better and he is being discharged.   She shared his bill with me.  This bill is in shillings, which is equivalent to a penny in the US. So, the total bill for 3 days in the hospital, surgery with general anesthesia, and IV antibiotics was a around $1400.  Here is a photo of the second page of his bill.
She also shared that she believes that the reason his infection went on for so long is that there is no real medical record, and if they see a different doctor for the same problem, there is no communication from one doctor to the next, thus no continuity.
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The Power of Our Patient Safety Action Network (PSAN)

May 10th, 2018 No comments




The most gratifying and inspiring part of my Patient Safety work is when I can help someone who has been harmed by their healthcare. Although I am a retired RN, I certainly do not have all the answers to people’s questions.  That is where my expert patient safety colleagues come in.

Last week a friend asked if I would talk with Jane (fictitious name), who is a friend of her sisters.  Jane lives in New York State and had a robotic radical hysterectomy for endometrial cancer.  She is 70 years old.  Her surgery was nearly 2 years ago, and she is still working on her recovery, with Pilates and trying to improve her abdominal muscle tone.  She has come a long way in her recovery, but she isn’t done and 2 years is a long time for recovery from Robotic assisted hysterectomy.

I had the same surgery and it went very smoothly.  I recovered in a very short time, and I had no complications or lingering disability.  I was operated on one day and I went home the next.  I only took Tylenol occasionally for very mild pain.  In just a few weeks I was back to my old self.

Jane had a completely different experience, although she planned on one like mine.  During her surgery the robot failed. Her doctors exact words were “The f*^#ing machine just stopped working”.  As a result, her vena cava (assuming it was her inferior VC) was nicked, and she had a serious hemorrhage.  In order for the surgeon to find the bleed, her belly was opened from  the bottom of her sternum to just above her pubis.   She woke up in the ICU after a 6 hour surgery.  She  has suffered with brain fog and a number of physical issues that required a lot of rehab and physical therapy.  She has a long zipper like scar from the top to bottom of her abdomen, unlike my own 5 barely visible  scars.  After hearing about her experience, friends advised Jane to seek legal recourse.  Three attorneys have looked at her case but have not taken it anywhere.  So, Jane did not know where to turn next and she felt very alone.

Obviously, I can’t fix Jane’s problem, but because of my network of patient safety experts in PSAN, I knew who to ask for help.

1. I messaged a PSAN member who is an expert on patient harm data from the volumes of reports to the FDA.   She gave me info for Jane on where and how to report her experience. Jane was astounded to learn  that there are over 20,000 FDA reports on the Davinci Robot.  Jane felt totally isolated  with her problems, until she learned about this.  Her doctor told her she was the only one he was aware of.  That may be true, but she is certainly not the only one in NY or the US!

2. I wrote a brief email to the Consumers Union Safe Patient Project Email listserve with a brief description of what had happened to Jane and asked for suggestions. This email listserve will soon transition to the PSAN.   I got responses from 3 esteemed colleagues.

The first response came from a man who has also been harmed under the Davinci Robot.  and he also recommended that Jane report on the FDA website, and to check if her hospital has reported this robot  failure to the manufacturer.  If not then they are in violation of reporting requirements.

Angie recommended that Jane join the Unplug the Robot group,  and sent along the email address of the leader of that group.  This puts Jane in touch with other women who have had very similar experiences as her.   The group also has information on expert attorneys who handle the same kind of harm that she has suffered.

Then a PSAN member who is an attorney emailed me.  He offered to talk with Jane.   He  told me that there is no class action lawsuit against Intuitive (makers of the Davinci Robot) which was a surprise.  He said the robots are used for too many different kinds of surgery to do a class action.

Four amazing colleagues in our network responded to me about Jane’s dilemma over 2 days and I have passed on all of this information to her.  I guarantee that she no longer feels alone.  There is nothing any more isolating than being sick or in pain, and knowing it is because of a failed device, or a preventable human error.   People who have not experienced anything similar are uncomfortable with this kind of conversation and there are no local community support groups.  Efforts are made by doctors, hospitals and device makers to keep these things under wraps, and that is even further isolating.

In this quest to help Jane,  I have learned so much.  This is what our PSAN network does.  We learn, we share and we help.  We are a family of expert patient safety advocates.   The value of that in our Patient Safety work ,our own lives and the lives of those we help is immeasurable.

Thank you.