McCleary MRSA Prevention

The young physician’s assistant met me in Mum’s room on April 3.  She was bright, and thorough.  She found a cerumen (wax) impaction in Mum’s Rt hear, so that may be compromising her hearing  in that ear. It takes many months for wax to build up to that degree and it makes me wonder why it was missed at her Assisted living. They will use Debrox and irrigation to clear Mum’s ear.    She also said she would order blood work to follow up on her low blood sodium and high blood potassium levels.  It sounded reasonable to me.  I find that Mum continues to be sleepy most of the time, but she awakens when touched and spoken to loudly.  Her caregivers have told me how great she is doing, helping with her own hygiene and toileting. One even said she pushed herself up and down the hallway in her wheelchair.  Considering Mum’s level of somnolence and weakness,  I’m not sure I totally believed that she went in the hallway at all.  I have been visiting Mum every day at different times of day, excluding early mornings.  So, perhaps she has more energy in the mornings, that I haven’t witnessed.

April 4, 2019  I went in to visit close to lunchtime.  Mum was upright in her wheelchair sound asleep, which seems to be the usual.  An occupational therapist came in and said that she had gone to the dining room for breakfast, but the CNA said she had difficulty eating and spilled her food and drinks on herself.  The plan was to take her back this noontime.  She was barely awake.

The occupational therapist came for us to go to the dining room for lunch.  I was seated next to Mum at a dining room table while we waited for her food.  I laid out a hand of solitaire to see if it sparked any interest.  She continued to sleep, with her head lolled onto her chest.  A full tray of food was delivered.  I woke her but she went right back to sleep.  I tried to get her to hold a fork, but her hand fell.  Then to OT came back and sat next to her in my chair, prodding her and urging her to eat.  I know this is her job, but considering Mum’s condition, and deteriorating health,  I found this undignified and I truly believe it is disrespectful.  I had to leave because it was too painful to watch. My mother is a very private and proud woman.

I got a call from Mum’s PA that afternoon.  She was alarmed that Mum’s blood sodium is so low at 117.  She said that this could explain the somnolence and weakness, but it also could lead to seizures.  As I have observed and guessed,  Mum is very very sick.  So, the choices were to give her IV saline in the facility or take her back to the hospital.  I chose the first option.  If she gets sicker, we may have to make a decision about moving her to the hospital. Why is life (and death) so cruel?

When I returned to the facility later in the afternoon, the nurse was setting up Mum’s IV.  As always, she was sound asleep, but comfortably so in her bed.  Apparently she woke up long enough to ask the nurse “What the hell are you doing?”   I expressed my concerns to the RN about Mum being hauled off to a Family meeting that she slept through and to a dining room full of people who were awake and feeding themselves  where she was  being prodded to eat while she slept upright in the wheelchair.  Everyone except my mother was awake and alert.  I told her I was so hurt to see them do this undignified thing to my mother.  I want her treated with dignity and respect, and common sense.  If she is somnolent, she will not eat.  If she is weak she will not lift a fork.  Let her rest.  Give her ice cream, pudding, boost, juices, water…things that she can handle when she is alert…..and forget about getting her to eat a full course meal with noodles, meat, and sliced beats , or even dry chocolate cake!  It will not work.  It will not help.  It is disrespectful, impractical and just wrong. My sense is that these well meaning therapists and assistants need to learn some lessons about Patient/Person centered care.  Recognizing the patient in front of them with all of their idiosyncrasies and specific needs and abilities is essential to quality and effective care.

This nurse understood. She has 30 years of geriatrics under her belt.  She said that on her watch she will not allow those things to happen to my Mom.  She encouraged me to speak up and advocate for my mother because nobody else will.  She is so right.

I don’t want to alienate my mothers caregivers, because they are dedicated professionals,  but I must speak up for her.  I am prepared for any outcome, and I am pretty sure which one to expect.  In the meantime, I want her to be comfortable and treated with respect and dignity.

April 5…..I will go see Mum this morning.

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…..