David from California
My husband Ralph has early onset Alzheimer's, likely caused by HIV and genetic propensity. ALZ effects everyone - the individual, the caregiver, professionals, friends and family. People either choose to work with you or step aside, it's very much like embracing a porcupine. Getting a diagnosis is key, I wasn't able to get State disability or SSDI for Ralph until we did get one. Dependent on one income during the 18 month twilight zone delay we almost went broke and Ralph moved beyond ALZ early stages. The medical people want to get you the right diagnosis, but there is little to be done medically for ALZ. Which is the heartbreaking part. Getting a POA, medical directives and a will in place for him has been key. In hindsight, I should also have gotten on to all of our financial accounts sooner. POA paperwork for a 401K and putting it into action took almost eight weeks of calls, certified mails and follow ups. Social workers have helped us enormously, helping me to get funding for caregiving and respite, allowing me to work full time over the last five years. My husband is ill and will eventually be taken by it, that's the reality. In the meantime, we work at living in the day.