Wednesday, March 23, 2011
butterfly effect MS caregiving
Is there a butterfly effect between Multiple Sclerosis diagnosis and MS caregiving (and I suspect most caregiving situations)?
If so, then it is maddening. You originally respond in your prime only to discover with long term care that while care needs increase your abilities and resources decline.
I’m a big fan of visuals and simple, even at the risk of oversimplification.
Obviously, progression of disability and care needs vary. Yet regardless of what your personal graph looks like - one side still goes up while the other side goes down.
Score and evaluate yourself with either the Zarit Caregiver Burden Interview or Caregiver Strain Index
I’ve been at this for 21 years. Think about your answers not just for today but how did you feel 5 years ago, 10, 15, 20? Want to take a guess about next year or 5 years from now?
“Caregivers have been described as hidden patients … Financial strain, disease uncertainty, disrupted usual activities, and continuous caregiving … as many as half experience clinical depression … 61% of those providing at least 21 hours of care per week experiencing depression” Journal of Neuroscience Nursing 2008;40(1):Assessment of caregiver burden in families of persons with multiple sclerosis
“Impaired cognition is common in MS. Impaired memory and information processing speed may challenge both the caregivers' coping strategies and feelings, and may change the relationship from one of equal partners to one in which the caregiver is forced to adopt a parenting role” Caregiver Burden in Multiple Sclerosis
Then there are always the ‘universals’ of caregiving -you will not get any younger. You are 2.5 times more likely to live in poverty than a non-caregiver (average lifetime loss of nearly $700,000 in reduced salary and retirement benefits). The toll on your health will shorten your life, up to 10 years less than a non-caregiver, and its quality.
It would be nice to insert some statistics or studies on the ‘tangible’ pluses here in the entry but there just aren’t any.
Caregiving is a choice, intangibles are always BYO.
Caregivingly Yours, Patrick Leer
web site: caregivinglyyours.com
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