butterfly effect MS parenting

Almost 20 years ago, a fellow pre-school parent introduced herself and asked if I could help her understand living with Multiple Sclerosis as a family. She was a psychologist treating a 35 yr old patient and felt her patient’s childhood and teen years raised in a family decades earlier with a parent with MS could be a factor in her patient’s adult mental health challenges. There were no professional resources on this topic.

So it seemed providential while preparing this second part to the butterfly effect entry to read in the Washington Post,  A parent’s multiple sclerosis can take heavy toll on children 

“As a teacher, Levenson came across other children who had parents with MS and who reminded her of herself at that age. She said they were “battling feelings of isolation, embarrassment and anxiety, and the overwhelming sense that no one else understands.”

The butterfly effect of a Multiple Sclerosis diagnosis impacts more than caregiving, before all else - children.

“MS can be a very frightening thing for anyone to deal with in the family but especially for children …

… it can be physically demanding on a child if a parent is unable to walk properly and has to use a wheelchair ...

… If a parent can’t feed themselves very well the child maybe brought in to help … embarrassing and almost a role reversal really with the child becoming the parent and the parent becoming the child ...

... Cognitive problems in a parent can be very frightening. If a parent isn’t able to think properly or plan ahead … he or she can behave in a way which … does not appear to be in the best interest of the child ...

... There are many, many emotional stresses upon children. There are positive gains for children of MS and all the research shows that it isn’t necessarily a bad experience at all in the long term. Just as many, if not more, children are coming out of this experience having benefited from it in a strange way than there are actually who have been hurt by it in some way.” MS and Children (2008) from the Multiple Sclerosis International Foundation

related - butterfly effect MS caregiving 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer 

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 

videos: www.youtube.com/daddyleer