Thursday, September 16, 2004


Wednesday was a CARE PLAN REVIEW meeting at Patti’s facility. Every other month they have a sit down with department representatives and family to review a resident’s care plan. Time is at a premium and 15 minute appointments leave only the briefest of discussions. You can follow up any topic at a separate meeting with specific staff.

As a spouse/caregiver at home I managed EVERY detail alone by necessity. Transition to the nursing home era has been about learning to cooperate with three shifts of staff (6 - 7 per Patti's unit) plus supervisors and department heads.

EATS ONLY 50% OF HER MEALS however she has maintained herweight. Apparently she rarely misses the snack cart, <grin> though they do not track that outside of ‘observation’. … At a previous review I had raised the possibility that Patti may not see all of her food as configured on her tray. Since then, they have monitored her meals to make certain she is aware of her food. She reportedly claims she is ‘just not hungry’.

HOYER SLING LIFT/PHYSICAL THERAPY...Increasing use of Hoyer Sling Lift for transfer was discussed. Besides probable progression in loss of physical strength it was agreed to reevaluate Patti for physical therapy. It COULD be she is additionally tucking her legs under when attempting to transfer complicating the scenario. Physical therapy may or may not improve this situation. At least itwill be evaluated. ("Benefits of Physical Therapy & MS" MSAA Motivator)

IMMUNE SYSTEM DISEASES CAN COMPLICATE the simplest problems. A frustrating rash has resisted an arsenal of medications and is currently somewhat responding to Lamisil.

SYMTPOMS OF SPASTICITY...Recent advent of symptoms of spasticity is being treated with a program of structured increasing dosages of Zanaflex. (Patti unlike many with MS never had symptoms of spasticity until last few months.)

incontinence of Bladder and bowelS is 100% and all changing is done in a bed. After some discussion they agreed to evaluate Patti for an experimental program of toileting they are beginning for some residents. At home we tried a commitment to toileting at least once a day. This concept is endorsed in some related publications though for caregivers physically demanding and time consuming as Patti must be assisted and monitored. Previously all available pharmaceutical treatments have been tried and failed. At home a catheter was tried unsuccessfully; with Patti’s mental confusion she risked rupturing herself pulling it out one night among other problems. NMSS has a fair overview of Living with MS Bowel & Bladder Problems on line.

SOCIALLY AND PSYCHOLOGICALLY Patti was considered doing extremely well by her review. I would agree. It is difficult to understand what Patti genuinely feels, thinks, or is cognizant of at times; however she seems generally happy. (‘spoiled’ might even be more appropriate some times.) 

MS AND SLEEP ...Patti likes to be in bed by 7:30 – 8 PM at night. Sleeps in until 9 - 10 AM Then naps soundly after lunch for a couple hours every afternoon. Usually is up around 3 PM until the evening cycle begins again. She sleeps over 2/3 of every 24 hrs, and is rarely up more than a block of 4 hours without asking to nap. Basically it is the exact opposite of the archetypal able-bodied person. ... Or in other words, Patti sleeps like a cat! <grin


  1. don't laugh---but try toothpaste on the rash.  Have had lots of luck with AIM toothpaste.  Can be diluted somewhat with water or applied right out of the

  2. Thanks! I WILL NOT laugh and will add it to the ‘to try’ list, if needed. I’ve never lost my sense of wonder at unconventional solutions, especially with immune systems disorders. … I’ve admired the creativity of your “coke and lime cocktails” for upset stomach in your caregiving journal ...  
    Hope you don’t mind the ‘plug’? Our best wishes to you and yours.


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