Denise from New Hampshire
I am the primary caregiver for my husband Scott. He is 49 years old and has rapidly progressing younger onset Alzheimer's. I have been on extended leave from my job which I am unsure if I will be able to return to work as my husband's support needs have steadily intensified. I currently provide around the clock care with approximately 20 hours of paid care so I can have a break. My husband's diagnosis was a true blindside when he was 47 and he had to stop working before his diagnosis because his executive function skills were significantly compromised. Within one year we downsized our home, tapped into our retirement to bridge the gap of our decreased income and to eliminate as many expenses as possible. We also needed to take out additional retirement funds to pay the additional taxes for being in a higher tax bracket. Within one month, my paid leave from work will end and we will once again have to take money out of our retirement to pay for COBRA and any other living expenses exceeding Scott's SSDI. The frustration I now face is not only forgoing my income to provide care for Scott, but we will be penalized at tax time for using retirement to pay taxes, care and COBRA...this sometimes feels like being penalized for having been responsible citizens. I am currently facing whether I can physically and emotionally continue to care for Scott, but don't have the financial resources to private pay nursing home care. Our current retirement balance may last 1 - 2 years depending on unforseen expenses, but the greatest challenge is that the disease is outpacing our ability to adapt and be safe. There is no infrastructure to provide any care management and planning. Scott does not qualify for Medicare until November 2016. It is an overwhelming experience even while building in time to take care if myself.