Advocating In The Care Facility Era
As a caregiver, what challenges have you faced when communicating with Patti's medical care staff? Do you have any tips or techniques to share?
At the beginning of the care facility era I found it frustrating to work as a team. For the preceding 15 years of homecare I was an intuitive solo act.
Just prior to admission I had found “Nursing Home Care of Individuals With Multiple Sclerosis” on the NMSS web site. Written for clinicians and administrators it offered suggestions for quality care.
Reading through it, I as always was left dumbfounded at the lack of awareness of severe MS by the NMSS. Yes Patti would probably be younger than other residents however she was and had been less able to participate in her ‘activities of daily living’.
Patti is non-ambulatory, bedridden (she cannot reposition herself once in bed), she is completely bowel and bladder incontinent, she cannot safely feed herself, bathe, or even brush her teeth. This is MS and frankly most residents are not as dependent as Patti.
If you can get past the denial of severe MS symptoms, it’s not a bad starting point for dialogue about a care plan for someone with Multiple Sclerosis.
What is critical is proximity - Family needs to have boots on the ground. Like snowflakes every MS patient is different from another. Institutions by default look for cookie cutter solutions.
Three shifts a day of people assist Patti. The freshness that brings to the equation is wonderful however it also brings unknowns. Family being around throughout the week on different shifts improves the level of care.
Patti’s MS symptoms of dementia prevent her from advocating for herself. Me being her personal lorax is imperative. I average between 3 - 4 outings with Patti per week. I try to end each outing by preparing (brush her teeth) and transferring her to bed myself from wheelchair to bed before changing Depends and dressing her for sleep. In a sense it's not much different than our before bed routine from homecare and I believe it reduces any anxiety Patti may have.
Care Plan Reviews are held every two months – make the time to attend. This enables me to keep up with staffing changes and get a feel for the people behind the mover and shaker labels. It’s also a wonderful catch all for any changes in Patti’s care plan maybe I was not aware of.
What has been surprising (at least to me) is the beneficial impact of 24/7 care on her MS.
EDSS scores and such have lost favor in MS Media to labels like 'end stage MS'. However since MS is not a fatal disease I find the whole ‘end stage’ buzz to border fear mongering to sell pharmaceuticals.
Decades ago Patti neuro best answered that question of "is MS fatal?" He doubted you would find any death certificates that say MS as a cause of death; however most of his patients with MS who die, die from associated symptoms from falling to choking.
Now that she is attended to 24/7, Patti’s falls are non-existent. Choking is not only monitored by staff feeding her but she receives speech therapy for her dysphagia. If she develops an upper respiratory infection, portable x-ray machines roll to her to monitor for respiration pneumonia, another potentially fatal symptom of MS.
Through all this I am called when an acute situation arises and consulted about a course of action. If anything, the care facility era has extended Patti’s life. Depending on one’s inability to complete or participate in the activities of daily living, the home can be a dangerous place. 24/7 teamwork care trumps overwhelmed solo intuitive care any day.
Editor's note: We are extremely saddened to say that on November 11, 2013, Patrick Leer passed away. Patrick was an essential member of the MultipleSclerosis.net community, providing unique insight and perspective as the primary caregiver to his wife, who has MS. His heartful writing continues to reach many. He is deeply missed.
How well do people around you understand MS?