Annie and Joe’s life began in an unusual way. At their special place, a tiny town in the Outer Banks, with no justice of the peace available, the two high school sweethearts exchanged wedding vows in the local jail, two corrections officers serving as best man and maid of honor. This quirky ceremony was the perfect first chapter to an adventurous life for the husband and wife who were also best friends.
Nearly four years ago, Joe started to act odd. His behavior, outlook on life, and interaction with Annie changed. After consulting with several doctors, he was diagnosed with Frontotemporal Degeneration, or FTD, an extremely rare disorder that affects the part of the brain responsible for personality, behavior, and language. FTD is more prevalent in people under the age of 60, and currently has no known cause, treatment, or cure. By the time the diagnosis came, Joe’s condition was quite advanced. “The sad part is that these three to four years we were trying to figure out what was wrong, I lost the last most normal times with him,” Annie explains.
Joe isn’t able to help with any home upkeep or work. “Everything we used to do together I now have to do on my own. Maintenance on the house, yard work, bills, healthcare, cooking, shopping, cleaning, and all decisions.” Joe’s condition also provokes agitation if he is reminded of fond memories of their past together. “All his joy has been stolen, and I can’t relive happy times with him either.”
Planting the Seed to Find Support
In the fall of 2019, a concerned friend told Annie about Hope Grows. “It was like another brick piled on top of me,” Annie recalls. “Sometimes when people offer you solutions, it’s just one more thing that you have to carry. I just couldn’t do one more thing.”
Months later when Annie felt strong enough to consider Hope Grows’ caregiver support programs, she called, but still wasn’t ready. “I was mad because they couldn’t fix my life in that one phone call! But within a month I got the strength and called again to talk with a Caregiving Counselor. I’m so glad I did.”
Finding the Light
Since finding Hope Grows, Annie talks with a Hope Grows Caregiving Counselor each week by phone. “She has been instrumental throughout the difficulties this cruel disease has caused. I know she is always there, ready to listen. I have no doubt God brought us together.”
Through their conversations, the Caregiving Counselor has given Annie practical strategies to ensure that she stays emotionally strong and physically healthy. One way is by recognizing the value of people that are put in her path. “She always tells me, Annie, you’re building your team. That person is part of your team.”
Collectively, many people in her life contribute to a caregiver support network. “Each person on my team is a little piece of something I need. It can’t be one person to help me stay together; it’s many different people that may only do one tiny thing, and I may never see them again. All those little things together are what make me strong, and I thank God for every one of them.”
As Annie reflects on the caregiver support Hope Grows has given her, she feels light breaking through the gray clouds that hang over their life. “My grief is continuous. I have no idea how long Joe will be this way or if he will recover. Knowing that I am heard by my Hope Grows Caregiving Counselor is validating and I feel less alone when someone is there listening, and especially to remind me that Joe is also suffering loss.”
Along with the consistent support of her Hope Grows Caregiving Counselor, Annie is strengthened by a favorite Bible passage. “James Chapter 1 tells us to consider it joy when we face trials, because the testing of our faith produces endurance. What’s happening to us is awful, but I know that God has a plan and that’s what keeps me going.”