Our friend has MS and has been in a so-called care home for a year now,
- they never get her out of bed
- When admitted her wheelchair was taken for "health and safety" due to her cognitive deficit and fears that she would go out and get lost, or drive into things.
- cognitive state is now unbelievable, mainly we think because she gets absolutely no stimulation
- she effectively lies in solitary confinement all day
- nothing to do and no-one to talk to without even the ability to read (sight loss and now complete loss of any manual dexterity).
Physio has denied that the contractures are due to failure to mobilize her at all, and say it is because there are brain centers which normally prohibit contractures which get knocked out in MS (?!) Whose brain are we talking about here!”
My gut reaction is to kick down doors and bang heads. While I might feel better that would not help your friend in need.
Multiple Sclerosis care is more often than not an anomaly to most care or nursing facilities. Whether management or staff, few have any experience.
When family and friends cannot be an active part of the transition your wealth of personal background and experiences is lost to the staff.
MS cognitive impairments prevent a patient from providing dependable medical and care history. Too much becomes dependent on evaluations.
In the US, care facilities are required to offer regular patient Care Plan Reviews. In Patti’s facility this is scheduled every two months. Department heads of nursing, nutrition, physical therapy, social services, and activities sit down with patient, family and or designated medical advocate.
The best resource I have found is the Nursing Home Care of Individuals with Multiple Sclerosis: Guidelines & Recommendations for Quality Care
“... was developed by the National Multiple Sclerosis Society (NMSS) to provide guidance to clinicians and administrators of long term care facilities that are seeking to develop more effective care plans to 1) manage the unique set of clinical conditions of their residents with MS, and 2) maximize the quality of life for these residents. …”
I introduced it “for the record” at a Care Plan Review.
MS education and re-education is necessary and not just for John Q Public, even medical professionals have little experience.
Contractures and physical therapy is a horse of a different color. Frankly I was surprised when Patti’s facility began using a SoftPro Static Gel Knee Orthosis to try stretching her legs since such treatment is still being pioneered in Scottish MS studies. Someone was on the ball. For all I know the booklet caused them to actually look for MS research with physical therapy rather than try more traditional exercises in futility.
With MS progression we become the voice of the person trapped inside. If the facility cannot or will not consider the MS Professional Resource Center Guidelines you or family may have to file complaint to regulatory agency or legal action.
Caregivingly Yours, J Patrick Leer
caregiving multiple sclerosis care facility nursing home