Tag: Dementia

Reflecting Sunlight

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It’s been quite a while since my last post. I’ve never been able to write on a schedule. I can’t force the words. Sometimes though, I see or read something that hits me in the pit of my stomach, or makes my heart bounce, and once again it is time.

This year has been a mess all around the globe. There’s really no other way to put it. A year we never saw coming; a year many of us never could have imagined. I wish this was the first time I have experienced a year like this, but I have had a number of “messy” years. I don’t know if it’s more than the average person. I don’t know how many people out there feel the same as I do. However, for me, this is just one of many. 

Sitting at home, hour upon hour, for days and days, waiting out the height of the pandemic gave us all time to think. Reconsider our surroundings; reevaluate our lives. For some, it may have been too much time, but for me it was just enough. With mental illness, dementia, and Seasonal Affective Disorder in the house, Michigan winters were hard on all of us. Overcast, snowy, gloomy days for too many months of the year. It was impacting the heath of the family, especially my husband, and it was most definitely affecting his life expectancy. This is where we had been living for most of our lives though, where our families live, where we have made most of our friends. If we moved we wouldn’t know anyone. We would be starting out all over again. Change is a scary and uncertain thing. The fear can hold you back, but if you rise to the opportunity, it can also help you live. 

Those past experiences, the “messy“ years, have been a blessing to me. They’ve taught me to be brave, a quality that I did not possess as a child or young adult. I have come to learn that I am strong, and stepping out of my comfort zone can be exhilarating. Empowering. Even life-saving. 

At the end of April we took the leap and started researching online for a warmer area. A sunnier location with no snow, but plenty of rolling waves and sandy beaches. We were about as close to throwing a dart at a map as you can get without actually doing it. We went with our gut instincts and picked a city and state, one that we had never considered before. We started looking at real estate, narrowing down the area where we wanted to buy. Within ten days we had put our home on the market, and with the help of an amazing agent, placed a bid on a house we had never stepped foot in. I took a quick trip south for the inspection and to scope out the new neighborhood, and by the end of June we were moving into our new home. It was scary and exciting, and it was the wisest decision we have made in a very long time. We are embracing the change. 

This year has been a mess, but we are making the best of it. I have learned from my past, and will continue to strive to make this life full of as much joy as possible. I recently read a passage in a book, Where the Crawdads sing by Delia Owens, “Autumn leaves don’t fall; they fly. They take their time, they wander on this, their only chance to soar. Reflecting sunlight they swirled and sailed and fluttered on the wind drafts.” I think this may be the most moving passage I’ve ever read. To me, it is a life mission. It is how I strive to live. 

This is the only life we get. Reflect the sunlight. Choose to soar. 

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

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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.