You know that saying about making lemonade out of lemons? In my case, the lemons were so terrible that I have resorted instead to making compost. This blog post is but one seed I am planting in that compost to raise awareness of the disease that brought me here.
Unexpected, unexplained and uncharacteristic behaviors from my husband resulted in six years of misdiagnoses of adult onset ADD and depression by multiple health care professionals. Despite a myriad of prescriptions, his symptoms never improved and his bizarre behaviors only got worse.
Frontotemporal dementia (FTD), also called frontotemporal degeneration, is one of the often overlooked and mis- or underdiagnosed of the dementias, Alzheimer’s being the most common cause. When a healthy, intelligent, younger man (my husband was in his early 40s when this all started), a software engineer, later PhD candidate at UW, is the patient, physicians don’t think to go “there.” Currently, there are over 150,000 Washingtonians with Alzheimer's or related dementias, and more than 350,000 family members and friends providing, on average, 20+ hours a week of unpaid care. These numbers are expected to triple by 2050 if we don't find a cure.
It was through grit and determination that we came to finally recognize what the problem really was, and it’s been a challenge to accept my husband’s diagnosis and make a life with this new normal. My family’s story is not as uncommon as it may seem. Regardless of the type of dementia a person may have – Alzheimer’s, vascular, Lewy Body, FTD – many of the challenges are the same: addressing the ever-changing needs of both the individual with dementia and the family affected by one of these progressive, degenerative, fatal diseases.
Our two sons, ages 17 and 14, have been thrust into this maelstrom of misdiagnosis, then correct diagnosis and efforts towards disease management. The better parts of their growing up years have been with a dad whose brain continues to deteriorate. This past winter, I had to make the difficult decision to transition my husband to assisted living as his care demands became more than I and our boys could manage. My husband is now in a safe, comfortable environment, where the staff is trained to meet his needs, and I have the peace of mind that he is being cared for 24/7. But still, his uncontrolled outbursts threaten his ability to stay there. Then what will we do? Make more compost, perhaps?
But there is HOPE! And that’s where the Alzheimer’s Association Reason to Hope events come in, raising awareness and concern about Alzheimer’s and other dementias, such as FTD, and raising funds in support of programs and services -- like support groups, 24/7 Helpline (800.272.3900), care consultation, education -- in support of families like mine, as well as dollars for research. We are getting closer to finding a cure and treatments to slow progression. That’s my reason to HOPE!
I encourage you to attend an upcoming Alzheimer’s Association Reason to Hope event and learn about what they are doing to end Alzheimer’s and other dementias while also addressing the needs of families like mine. If you can’t attend, you can fund their work by donating online through a “virtual table.” Your gift will and does make a difference and gives us a Reason to Hope and brings us closer to answers and a cure.
From the Alzheimer’s Association: Our community partnership with KING 5 is something we value deeply. KING 5 talent that will help us by emceeing upcoming Reason to Hope Breakfasts include: John Sharify at our Bellevue breakfast (04/16), Drew Mikkelsen at our Tacoma breakfast (4/29), and Jean Enersen at our Seattle breakfast (5/28). For more information about our programs and services, visit alzwa.org or call 800.272.3900.
Alzheimer’s Association Breakfast, Reason to Hope
Bellevue Breakfast with John Sharify: Wednesday April 16 at Bellevue Westin
Tacoma Breakfast with Drew Mikkelsen: Tuesday April 29 at Hotel Murano
Seattle Breakfast with Jean Enersen: Wednesday May 28 at Hyatt Olive 8
All Breakfast times are from 7:30 to 8:30 am