In my own case, my husband requires 24 hour skilled nursing care, including 90-100% assistance with all ADLs, medication, daily suppository and stool softening regime, CPAP apperatus, wound care, medical equipment maintenance and supra-pubic catheter care. The burden of care has fallen to me in full measure without respite, assistance or much training, and at an increasing rate over the past decade. This in addition to bearing the sole responsibility of household maintenance and child rearing.

As a frequent visitor to the Well Spouse Foundation Forums (www.wellspouse.org/forums) I can attest to the fact that the majority of MS spousal caregivers on that forum are equally subsumed by their burdens, and many must also puree food or feed through stomach tubes.

In addition, because many of us must compromise our career paths or leave the work force entirely to care for our spouses, we also lose valuable benefits, income, Social Security Disabililty eligibility, Social Security value and retirement savings. This on top of burning through our life savings to pay for out-of-pocket medical expenses, modifications to the home and related costs.

Which leaves me wondering, is this really considered a “mild-moderate” burden? Or, were the severely burdened too overwhelmed to respond to your survey?

As a footnote, I am able to speak on our behalf now, as I recently separated from my spouse, and am regaining my health.