December 23, 2014
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Intimate journey is its own reward

To the Editor:

Kudos to the Beacon for the fine editorial about Alzheimer’s Disease and other dementias, and the recognition of the enormous contribution of caregivers, not only to the patient, but to the wider health care “system.”
I am of a generation that believes (believed?) that “benefits” from a system are for those who need such. For example, you take a health insurance benefit if you need it. If not, fine.
Today, there is much demand that the pie be divided evenly, needed or not. If I don’t need the health insurance benefit, I am due something else.
Caregivers (at least all the caregivers I ever met, and I was one for five recent years) are of my old school. We do not want “something” for the time, the torture, the grief. The painful and intimate journey is its own reward. But, certainly, recognition and acknowledgement are wonderfully appropriate and important.
I have come to realize, with humility, that the value of the role of caregiver cannot be reckoned. Who can count the value of a meal shared, a touch, a joke, a hug, a tearful memory? Certainly not Medicare or Medicaid.
My own journey as caregiver was with a dear wife who suffered, not with dementia, but with ALS, Lou Gehrig’s Disease, quite the opposite in some ways. For ALS patients, as the body slowly but very certainly deteriorates, the mind remains sharp, fully aware of the downward spiral. Gradually, leg muscles, arm muscles, throat muscles, breathing muscles deteriorate. As with Alzheimer’s, the treatments are virtually nonexistent.
Also, the local ALS Chapter has its roots here in Warwick. The ALS-RI chapter has been in Warwick from its very beginning, with headquarters on Post Road, and support groups at the Warwick Pubic Library, and a gem of a clinic at Rhode Island Hospital.
I am proud of my role as caregiver. I am thankful for the support of the R.I. chapter of the Amyotrophic Lateral Sclerosis Association. And I am proud that Warwick is its true home.

Michael McNamara
Warwick


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