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 


  1. This was a good survey, Patrick. I'm not at the point yet where I'm 'overly' burdening my husband, but our lives are so different than we thought they'd be!

  2. What an incredible post, Patrick! And for Jennifer and me, factor in that each of our primary caregiver has MS truly pushes us to fight to be as strong as possible. May all of us caregivers stay strong!

  3. frightening thoughts to think about, Patrick, yet I know you live them and think them 24/7. I think each year we age now that we are at that age, we will lose a little bit of what we had physically in strength, endurance, etc now matter how hard to we try to work out, keep in shape, eat right, etc. There is no easy answer or answer at all other to commend you for your faithfulness to care give no matter what the cost


  4. Dan, how interesting you should post a comment as I though of you and Jennifer as I worked on the entry. Your ears must have been itching. :) You two certainly are a class unto yourselves. Our best wishes to both of you.

    Caregivingly Yours, Patrick

  5. Yeah, I know? That's something I have in the very back of my mind. Add my problem of a loss of a child and I can't figure out why my boyfriend is still here. He is not only here but HERE, if you know what I mean.

    Thanks for this post.

  6. Hi everyone,

    I was a caregiver to someone (my brother) with mutiple sclerosis for 15 years. The last 2.5 years were very difficult because my brother's disease was progressing at a very rapid rate. As a caregiver, I was often tired. Sometimes I was overwhelmed/depressed. I shared the responsibility of taking care of my brother with my mother. My mother was more overwhelmed than myself. My brother was diagnosed at the age of 17. He died December 29 2012 (aspiration pneumonia)at the age of thirty two. I miss him tremendously and at this time I am devastated. I can only say to caregivers to find a way. I would give anything to be a caregiver for him again. It was all worth it.


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