I’m asked all the time about how my husband is doing. He has a degenerative frontal lobe disease called FTD (Frontotemporal Dementia). As suggested by someone on a FTD forum for spouses, my response will now be, “Would you like the 5 second or 5 minute answer?” Either response is absolutely fine. I have no issue talking about most things associated with this disease, or how our family is tackling the challenges. Awareness and openness about this disease has absolutely saved our family.
The 5 second (or a bit longer) answer:
My husband is still working and driving. These are two huge milestones. There is no timeline for how long he will be able to do either. His company has been extremely gracious. My husband’s memory, decision making, OCD behaviors, and tolerance for chaos all continue to deteriorate. The kids are angry, sad, and embarrassed – daily. We adjust to a new normal on a weekly basis.
The 5 minute (or a bit longer) answer:
Examples seem to be the best way to describe the disease in my husband in its current state. He looks normal. He is not.
Our family recently took a week long cruise. Overall, we had a fantastic time. But, being out of routine, made the symptoms in my husband so much more pronounced. The kids and I kept reminding each other that we will never see these people again. It’s what got us through the week. By the end of the cruise, I could not go anywhere with my husband without someone saying, “There’s Bill.” One guy even remarked that he couldn’t believe my husband was married, because he was all over the boat being the life of the party. (Note: this was not my husband even 2 years ago). He sang karaoke several nights – his favorite song “Sweet Home Alabama.” He even entered a singing contest. The magician told him to pipe down after he heckled him several times from the audience.
More than that, he spent much of the time confused about basic things like where to go for the evening shows even though he had been to the theater multiple nights already. He struggled to use the Southwest kiosk to check-in for our flights. The questions were challenging for him. I worried that he might make a bomb joke to the TSA security people, because his judgement is so impaired he no longer understands the consequences of doing so. He constantly disappeared on the boat going off to do his own thing even when asked to stay put. He could not keep watch of our six year old. His attention span is entirely too short now. (Note: my husband was always amazing at watching the kids and making sure they were cared for and safe). One commonality with this disease is selfishness. It was irrelevant to him what temperature anyone else may want the cabin, how hungry anyone may be, or if someone wanted to nap. His primary focus was on himself.
During one lunch, he took a festive hat off one of the crew members and was running around the dinning room with it on. He wanted pictures with all the dress up characters on the boat – sometimes he would circle back for more pictures with the same character. Most days he wore his Army Ranger baseball hat. He is quite proud now of his military time and wanted to talk to anyone about his five years in the service. It was always the same stories. The same information told the same way. He did not wait to hear what anyone else wanted to add to the conversation. He was only interested in telling his information.
Understanding the meaning of words and his struggle to interpret what words were being said became more obvious on the trip. He would repeat back what he thought you said like “squirrel” even though you said “supper.” He does not have a hearing issue. His speech was garbled at times as well. This was a troubling new symptom. Eventually, based on what we know about the disease, he will not be able to speak at all. He needed to be watched carefully for choking. The esophagus is impacted and choking is now an ongoing concern.
The ship activities included ice skating, rock climbing, and riding a bogey board on a manufactured wave machine. At one time, my husband would have enjoyed all three activities. He did not attempt any of them. It may have been due to his weight. This disease causes overeating especially of sweets and carbs. He has gained 30 pounds in the last 18 months. Or, his lack of interest may have been due to his muscular changes. He has lost flexibility and balance. A third possibility may be apathy. He has already lost interest (or ability) to perform many of the household chores he used to do such as loading the dishwasher or sorting / folding the laundry.
Not noticed as much on the trip but certainly at home are my husband’s OCD behaviors. He turns off the light if I leave the room even if I am planning on returning. He checks and locks the doors constantly. Most annoying to the kids is moving their stuff. He no longer knows what belongs to whom, but he moves items to new locations. We all ask him to please not touch our stuff. But, it continues.
The kids ask me all the time, “Please make dad stop <fill in the blank>.” I can’t. I am a fixer. Yet, there is not a darn thing I can do to fix this disease in my husband – the OCD behaviors, the silliness, the clinginess. The symptoms are escalating. The worry is too. We can only take one day at a time and put one foot in front of the other.
That’s the five minute answer to where we are today with this insidious disease, and as a nod to my six year old’s obsession with the Titanic, it’s really only the tip of the iceberg in terms of the complexity of the symptoms and progression of my husband’s FTD.