JOAN’S BLOG – FRIDAY, FEBRUARY 12, 2010 – SPOUSE POWER

There is plenty of credit to go around for yesterday’s Early Onset Alzheimer’s Disease Social Security Disability victory. For those of you who have not heard the news, click here for the full story, but the short version is that the Social Security Administration finally added EOAD to the Compassionate Allowances List. This means that young families financially devastated by EOAD will be put on the fast track to Social Security Disability approval. We are all grateful to the legislators and Social Security administrators who helped make this possible.

But I want to acknowledge the grass roots heroes of this victory – Alzheimer spouses who stood up for what was right, and PERSONALLY took the fight with their own feet and words to their local, State, and Federal legislators. They wrote letters, made phone calls, met with lawmakers, testified at hearings, gave speeches, and relentlessly pursued their goal.

I am not ignoring other family members of EOAD patients who may have helped in this struggle. They are also to be commended and given our gratitude.

But in the case of EOAD, the young spouses and children of the person stricken with Alzheimer’s Disease suffer terrible financial losses. When one in their 40’s or 50’s develops Alzheimer’s Disease, they become unable to perform their job, thus lose not only their means of supporting the family, but also lose their health insurance. They still have mortgages, car payments, bills, children to support. It is these spouses – caregiver and patient – who fought this Social Security battle and would not give up. See above under Breaking News for the story of Laura and Jay Jones.

I can tell you from my own experience, the legislators and aides I met locally and in Washington DC, had never heard of Early Onset Alzheimer’s Disease. Because it was considered an “old person’s disease”, it was assumed that those who were stricken with AD had retirement benefits and Medicare. It took years of telling our stories one legislator at a time, to get the message through.

Last year, at the DC Alzheimer’s Forum, our member, Tony Pesare, gave a speech in front of the Lincoln Memorial to hundreds of people. He talked about his wife Tracy’s battle with Alzheimer’s Disease. When he said that she died at the age of 43, a collective gasp came from the crowd. When Tony spoke personally with Newt Gingrich, who was on the committee to reform how government deals with Alzheimer’s Disease, his mouth dropped open when he heard Tracy’s age.

I applaud the SPOUSES living with Early Onset Alzheimer’s Disease and the SPOUSES caring for a husband/wife with EOAD who were instrumental in this tremendous victory with the Social Security Administration.

To the spouses reading this - You CAN make a difference. It may not be as fast as you would want, but persistence pays off, and you CAN change what you do not like.

Our Message Boards are filled with spouses who want:

Support groups for COUPLES dealing with EOAD
Day Care with appropriate activities for young EOAD patients
The Medicare 2-year waiting period waived for EOAD

Many of you are overwhelmed with spouse and child care – You cannot travel to your State House or Washington DC, but you CAN start letter writing campaigns and make phone calls. Use your business contacts. If you do not have business contacts, I will bet you know someone who does. Or someone who knows someone who does. Talk to your spouses’ doctors. Enlist other family members. If your Alzheimer’s Association will not start the type of support group you want, start your own. (As Alice did, in Still Alice by Lisa Genova). YOU CAN MAKE IT HAPPEN. SPOUSE POWER.

Feedback to joan@thealzheimerspouse.com 

©Copyright 2010 Joan Gershman 
The Alzheimer Spouse LLC
2010 All Rights Reserved           

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