Time Flies, doesn't it? It's been months since my last post, yet the minutes, hours, days, weeks and months seem to be blurred together. We are further down the road with my husband's condition. I've been through the difficult process of navigating the health care system. Searching for the right combination of doctors, medications, treatments and therapies which can help my husband be the best he can be. We saw three or four doctors before finally finding the "right" neurologist whose specialty is the type of cognitive degeneration which my husband is experiencing. Our next step is going to a cognitive therapist. We haven't been to the first appointment, yet, but will update to discuss how this helps...or not.
I'm realizing that there is so much that doctors DON'T know about the brain. It is still a guessing game for so many questions we have. While they can "rule out" certain conditions, they can't accurately test for every possible condition. For example, Chronic Traumatic Encephalopathy can only be accurately diagnosed post-mortem, which is a sad reality. This is the condition that we belive has led to my husband's decline in cognitive functioning, but we may never know for sure... However, what I have come to accept is that I may never have all the answers to all my questions, but I must deal with reality as we know it and make the best with what information we do know for sure.
Another milestone has been going through the process of applying for social security disability. Fortunately (or maybe it's unfortunately?) my husband's condition in under the "Compassionate Allowance" category of conditions which usually guarantee approval the first time you apply. While I am thankful for the benefits, I am in the process of seeking an appeal for a denial of reconsideration of benefits. I am trying to gain benefits for him further back in time than the Social Security Administration has approved. Perhaps I'll post more concerning this process as time goes on.
I also went through the process of applying for disability benefits through our private insurer. Thankfully, we were able to receive full disability benefits all the way back to the time of onset of his condition. That, too, was an exhausting process, but worth the time and effort to see the end results.
Overall, I am stronger today than I was 9 months ago when the devastating diagnosis was revealed. But I'm also more aware of how unprepared I am for the unpredictable future with my husband and our boys. I'm bracing for a storm, and trying to manage our resources as best I can. It's heartbreaking to watch the one you love fade away right before your eyes. The only thing certain is that things will continue to change ~ which makes it somewhat overwhelming at times. I'm trying to take one day at a time and enjoy the moments in the present without worrying what tomorrow will bring.
Faith, Family, Friends...the three things that keep me standing when I have no more strength of my own.
To be continued...
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