A Year in….

It’s been a little over a year living in Florida. We have met a few people, and they have brightened our days. Bill’s stuttering and tics have reduced significantly, but his anxiety has increased. I would still consider it an improvement. We all know that there is no recovering from early onset dementia, but finding ways to lessen the most distressing symptoms feels like a step in the right direction.

He is currently in Michigan helping his mom and dad who are having some health issues. It feels right, as he has the time, and he is at a stage where he can still help. We have no idea how long that will last so we will take advantage while we can.

I’m going to be honest, I am tipsy. I don’t drink much, usually no more than two, and I hardly drink at all anymore, but for some reason I blog best when I am feeling relaxed, and subsequently more honest. I don’t hide behind the “I’m okay” persona when I’ve had a drink or two. Raw honesty at its finest.

Most of the time I am okay, but sometimes life gets to me. Why is it me who gets Crohn’s, a daughter with mental illness, a son with Aspergers, and a husband with dementia?! Why do they get those things?! They don’t deserve them. They are good people. How does God determine who gets these things and who doesn’t?!

At the same time, we’ve lived in Shanghai and traveled Asia. My husband and I have traveled to Europe, South America, and Africa as well. We have been blessed. Is that the trade off?! Is life just a trade off of blessings and hardship?! Or are the hardships blessings as well?

We have recently started attending a nondenominational church. It is strictly bible based. It has been a blessing for our daughter, who had some bad experiences at a Catholic school in the past, and was feeling disenchanted with being a Catholic. She has started attending youth group and church every week, and journaling in her bible . She has made a complete turn around, and we are so very proud of her. Faith is so important in life. Having something, someone, to believe in, can make all the difference.

Before I started writing this, my daughter told me… “Don’t worry, mom, I’ll keep an eye on you,” just as I have kept an eye on her when she has been going through a difficult time, and sometimes that is enough. Knowing that you have taught your kids to consider others and that they have the compassion to look beyond themselves.

In the end, it’s a win. Our kids have grown into caring, considerate, intelligent, and loving adults. We have been blessed with a happy and (mostly) healthy family. We have faith and a love for Jesus. We are together, sometimes at a distance, but always in heart.

We are as God has always intended. We are at his mercy. It is all in his plan.

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There is an Enemy Within, Yet He Continues On…..

I have waited so long to write about this that the fire within has settled. I am prepared for the long haul, but also, not prepared at all. How do we prepare for the emotional, mental, and physical challenges that are to come? This is not a situation that we ever could have imagined. We have been slowly adjusting, but it is still surreal. My 52 year old husband, my intelligent, loving, funny, thoughtful husband, has Frontotemporal Dementia (FTD).

Looking back, symptoms may have been presenting as early as 2012. What we originally thought was depression, was probably the beginnings of this awful disease. By 2015, it had progressed into difficulty with word recall and minor memory issues. His doctor tested for every possible medical cause, and eventually sent him to a neurophysiologist. Three years ago this fall, that specialist told us that my 49 year old husband may have early onset dementia.

It was hard to believe that it was possible, but in the back of my mind, I knew it was true. He had been forgetting things I told him more than usual, and he had seemed a bit off for a while. The tests showed that he had a very high intelligence level, but his cognitive abilities were not matching up. By fall 2016, he had further testing at a memory clinic, and we were told that there was a high probability it was FTD. He is being treated accordingly, but there is no cure.

In the last three years we have been making as many memories as possible. We have traveled to Europe, Africa, and South America. One summer we took a minor league baseball road trip, in honor of his favorite movie, Bull Durham. We stopped and visited with many friends along the way. Friends we hadn’t seen in up to 25 years. We took a weekend trip to see one of his favorite football teams, the Kansas City Chiefs. We are living out our retirement dreams before we can’t anymore.

Two years ago, he went on disability from work. It was not in his plans. A disease he has no control over makes him feel like less of a man. He thinks he cannot take care of his family like he used to, but he has no idea how much he does. He goes to yoga most days, and I go with him 3 to 4 times a week. We were told it might help slow the progression of the disease. It has, and along the way it has also helped me to get in shape and strengthen, both mentally and physically. He grows a vegetable garden in the summer, and with his green thumb, we have an abundance of fruits and vegetables. He has taken up much of the family cooking and baking, making me look like a amateur after almost 30 years of marriage.

There are many ways to try to slow the disease. Memory games, puzzles, exercise, and small motor skill activities are a few. We will do anything to get as much time as we can, so he tries them all. He taught himself to knit last December, and by January he had made each of the kids a scarf. Intricate scarves with difficult stitches that look amazing! By March, he had finished a multiple panel afghan, and by May he had made me a varsity-style hooded sweater that looks like it was crafted by a professional. Last week he started knitting me socks. He has set the bar so high, I’m hesitant to even try to learn.

Unfortunately, he can’t do everything he used to. Over time, he loses the ability. We have seen these changes. They are happening slowly, but they are still happening. We might be able to slow the roll, but we cannot stop it. There is one thing we won’t let it do though, and that is bring us down without a fight.

FTD has brought us to a place we never thought we’d be. We have lost, and we have gained. It is a blessing and a curse, all at once. We are experiencing retirement in our fifties. We have been blessed to travel around the world. It is all temporary though. One day, and we have no idea when, we will be living a nightmare.

There is an enemy within him, and it is Frontotemporal Dementia.