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…..

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……….