In early June, our youngest flew to Arkansas to help drive home our middle child with her cat. She was gone for a week, and we helped with babysitting. The moving company that was hired turned out to be a scam, and last minute, a new plan had to be put in place. Thankfully, friends of hers offered to drive a 15′ U-Haul across country and our daughter’s things were able to be stored at the U-Haul facility until the new apartment was vacated.
As a family, we rallied together to meet her friends and empty her things into a storage unit. Then school let out for our grandson and I, and the girls descended on the house on the same day. Our quiet, predictable house got filled up very quickly. We went from a house of 3 during the daytime, to 7. Two weeks later, the family traveled 2 hours south to empty the storage unit and to help our daughter get settled.
What a relief it was when our independent daughter, was able to settle in with her things and her cat and we were able to (sort of) fall into a summertime routine. I think we can all agree that it is a challenging place to be in the best of circumstances. Now imagine being in year 8 of a Frontotemporal Dementia (FTD) diagnosis.
Although he loves having his family nearby, my husband has missed his routines and his quiet space. Considering all of the mini panics of moving, the girls on the road, babysitting, a couple quick trips south, and a home invasion, he’s done pretty well. Thankfully, the girls and I understand what each other needs, and we keep a pretty close eye on him. Naturally, he does his best when days are quiet and predictable and the first 4 weeks of summer vacation have been anything but. We are getting there though.
I continue to be amazed at what my husband is able to do in year 8 of his diagnosis. At this stage, he shouldn’t be able to read, write, follow a storyline on TV, use the phone, and comprehend challenging directions on a YouTube video, let alone build things. But he can, and is currently making me two closets in the loft. It blows my mind.
Do I notice subtle changes? Absolutely.
- Sleep continues to be an issue. Either he sleeps a whole lot, or barely sleeps at all. Naps are key to the success of the day. He can go without one, but is wiped out for days. He loves to travel, or “go for a drive”, and this often means he misses his rest time. We expect to have 2-4 days of “off behavior” as a result, but he considers it worth it at the time.
- He is getting up earlier than ever. “When the sun is awake, I’m awake.” This means that bedtime is often before 8:00. Early mornings used to be my time before school, now it’s his time. He almost acts disappointed when I get up before he’s had ample alone time.
- Since COVID, my man has become much more faithful with his studies in the bible. He often has many online studies going on at a time. Some days he can tell me all about them. Other days, he can’t remember what he just read, but he knows that he liked it.
- He loves music. Worship music on YouTube has become a favorite. He particularly enjoys Nicole Mullen and The Tenors who sing “Angels Calling”, a favorite of his. He also enjoys hours of listening to Josh Groban and The Bee Gees. Strangely, he has been enjoying opera and soft ballads in foreign languages.
- It’s hard to get him to attend any gatherings that may require him to talk to people that he doesn’t remember. However, he’ll gladly go to the coast or walk through Home Depot. There, he doesn’t have to recall names or process information about people’s lives. Holiday’s at the family farm have even become too much and we lived there for nearly 25 years. Too many bodies and too many conversations at once are impossible to navigate, so we tend to gather in small groups and have a “quick exit plan” in place.
- He can rise to the occasion and fake it. If he runs into someone he thinks he knows or he is pretty sure he should know, we give him time. His brain may reroute and can come up with memories. If not, he begins to stutter. The best advice to others is to assume that he doesn’t remember them and be thrilled if he does.
- Doctor’s visits are horrendous. It’s discouraging, because I want his doctors to see his best. Instead, they see him rock, stutter, stare, and stumble… It breaks my heart. As a result, I don’t take him anywhere near a doctor’s office or hospital unless absolutely necessary.
- When stressed, he reminds me of someone with autism. He rocks, rubs his hand up and down the back part of my arm until I am sure that he’s going to rub off all the hair. He stutters and stares. It’s heartbreaking for the observer, but soothing to him.
- He is still high functioning. He can shop online. So, he has his own low limit credit card that he maxes out monthly. This is for clothes, fish equipment, tools… It’s HIS card and I ask few questions.
- He plays online games like Words With Friends and Solitaire. Sometimes he forgets how to play for a period of time, but it comes back. Like most things, if we wait it out, he will return to baseline. He does this intentionally, to keep his mind sharp. He also loves puzzles as long as they aren’t more than 300 pieces.
- He knows he has dementia, and is proud that he is beating the odds so far. He also knows that things can change very quickly, and not to waste time. There have been times that he has forgotten about his diagnosis, but he has been aware and quite verbal about it for a good period of time. We don’t put anything off and we don’t schedule anything too far out. If we do make plans, they are “ish plans” that may or may not happen last minute.
- His body and mind are tired. He uses a CPAP machine every night and that helps. But he spends every day in chronic pain and is perpetually tired. He says that he feels old and looks forward to when the Lord calls him home. He says he isn’t afraid, and wants to pass doing something he loves, like working in the garden.
- He can be hard to “read”. Sometimes he has no expression and I worry that he is upset with me or that I have said something to upset him. Expressionless, he tells me that he is happy. That is a hard change. He does that fairly often.
- He is often doing things that he loves. He works in the garden, mows the lawn, and runs power tools. The key is that we encourage him to stop when he starts to make mistakes. Surprisingly, he can often self regulate and recognize on his own when it is time to pause.
- He still loves to cook and grill. Sometimes he leaves the stove on, but we watch him carefully.
- He misses driving, but doesn’t want to drive.
- He misses people, although people stress him out.
- He loves church and because we see the people weekly, he remembers common members most of the time. He calls the pastor and his wife “Pastor and Mrs. Pastor,” which always makes me smile. He also watches for my mother and worries when she is late. He particularly loves it when our youngest and her family join us, holding our youngest grandchild’s hand through the worship time- his favorite part of the service.
- He talks about many people, but when he sees them, he doesn’t recognize them. Thankfully, he still recognizes the kids and I most of the time, although he sometimes calls us by the wrong names. For that matter, he calls lots of things by the wrong names, but we can usually figure out what he talking about without drawing attention to it.
- He doesn’t always understand the safety measures that we put in place for him. One of those is our youngest daughter and her family who live with us. This allows me to work and not worry. She recently received an Associates Degree in Mental Health, with a focus on dementia. Now that our other daughter has moved closer to home, she will be able to help as well. This is a huge comfort to me, especially as he continues to progress.
I don’t know why my favorite man is doing as well as he is, but I have a pretty good idea. The gift of quality time and clarity is a gift from God and we all know it. We also have wonderful friends and family who are understanding, sensitive, and kind. Anxiety drives him to quiet, predictable, routine based days. The girls and I are flexible and shift gears quickly because he can become so anxious that he needs to return home.
He loves to know that others are out there who care and would love a card, an email, a text, or pop in for a visit. He does fine with small groups. Chances are that I’d have to introduce you. If he doesn’t remember and should, he may. If not, chances are good that if he liked you before, he still will. If he can’t handle it, he will retreat to the bedroom, the lawn, or his garage, but you can visit with me. Come on over!