This week has been very busy, beginning with an NMSS society sponsored program in Boston to introduce MS Fellows (those being formally trained to become MS specialists) to the unique issues and concerns of people with advanced MS. Following my opening remarks and those of David Rintell, a wonderful psychologist in Boston at the Partner’s MS program, we were treated to a panel discussion with 4 caregivers of people with advanced MS. Three of the caregivers were spouses of a person with MS and the remaining person with MS was cared for by her mother and sister-in–law.
The challenges and stresses of their day-to-day existence was palpable in their demeanors and their frequent pauses to fight back tears and collect themselves before proceeding with their monologues. Each described the immense difficulty of accomplishing what to us is considered the most mundane of tasks; rolling their loved one over in bed, sitting them up, transferring them to a chair, standing them at the toilet, balancing them upright while pulling down their pants to sit on the toilet, cleaning and dressing them. Each described in vivid detail how dressing and toileting alone consumed a minimum of 2 hours every morning of their lives.
Some of these caregivers did not qualify for personal care assistance because of their income level and never received any respite from their responsibilities; those that did qualify rarely experienced any significant respite or relief from their burden since they knew that no one could or would do as good a job as they are able to do. All of the caregivers acknowledged that their relationship with their loved one was no longer the same; as the disease advanced their loved one became dependent on them entirely and their prior partnership was no longer equal; changes in cognition and behavior often strained relationships further. Yet they persisted years on end caring for them, because they loved them. None could conceive of placing their loved one in a nursing home but all knew that a day could come when a nursing home was inevitable.
I myself found it difficult to fight back tears while listening to their descriptions of daily life. At the end of the session, I asked each of them what would make their lives better. All of them felt that they needed more skilled caregiver assistance and support. So let me throw out an idea that may help us reach this goal; besides lobbying state governments for broader qualification criteria for personal care assistants (PCAs), I think caregivers should use a website like ours to develop requirements for PCAs, create a pool of PCAs in your region meeting these requirements (MS certified PCAs) that can be shared for MS care and use this site to communicate with each other to provide support and advice. We already have a caregiver blog but I think the MS HealthAllies site that will launch in the near future will also help with this endeavor. (if you haven't already signed up for the MS HealthAllies beta test please do so here...Click Here To Sign Up For MS HealthAllies Beta Test
If you have any thoughts or ideas on this issue please share them with us.
Lastly, the next time you meet someone who cares day in and day out for a loved one in the home, regardless of whether they have MS, give them a big hug. This little bit of support and affection does really help.
-Rip Kinkel, MD
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