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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…..