Rick, my husband of 32 years, abruptly ended his successful 25 year career in June of 2010. He was diagnosed 2 years later (Jan 2012) with Posterior Cortical Atrophy, an atypical variant of Alzheimer’s, at age of 57. I was working part-time, but retired this year to be at home with Rick. I was worrying more and more while at work, with him on his own at home. I’m his full-time caregiver now. Over the past couple of years we have accessed government assistance and important supports, but one cannot access any help without an actual diagnosis. The Primary Care system needs to have more awareness regarding younger onset Alzheimer’s, and wait times for neuropsychology testing need to be improved. Our “retirement nest egg” has been largely depleted to pay off our debts and our bills. My hope is that Rick can live at home, where he is happiest, for as long as possible. I know that long term care is inevitable, but at this time, there doesn’t exist an appropriate care facility catering to younger people with dementia, and I worry about how we could afford it. Rick attends a pilot Younger Onset Adult Day Program two days a week. This has proven to be a godsend. The programming continues to improve, and the break for me is crucial. There are people who attend whose spouses are working full-time, so this is something that is desperately needed on a full-time, five days a week basis, for them. This disease has changed both of our lives completely.
Update March 19/16
Rick was admitted into a Supportive Living Dementia unit in January of 2016. The transition is ongoing. At this point I am still doing a lot of caregiving. My biggest concern is our financial burden. I am worried about how I will survive in the near future when our savings are gone. I am now severely depressed and still struggling to care for my husband and myself.