Anytime someone gets the sobering news that they have a terminal disease questions will flood their mind: Why didn’t I catch this sooner, what did I miss, can this really be right???? My wife, myself, and our children have all been asking these questions. Looking back, we can see things which, at the time, we attributed to stress, tiredness, overwork, anger, or frustration. These were small things which seemed out of character, but, after all, she was getting older. However, now, in the light of her diagnosis we see these episodes as a part of her decent into dementia.
You may have heard the old saying, “If you keep losing your keys it’s nothing to worry about. If you can’t remember what your keys are for, then you need to start worrying” While this may give comfort to some, it is totally wrong. It really depends on what type of person you are. If you are the kind of person who is always misplacing things, you’ve done it your whole life, and now at 65 you can’t remember where you put your keys, what else is new? However, if you’re the kind of person who has a place for everything and everything in its place and you keep losing your keys, something is wrong. Before a person could be diagnosed with dementia, some, go through what is known as Mild Cognitive Impairment. If you get help at this point, you may never continue into dementia. (Mayo Clinic has a great treatment/therapy program for people with MCI.) If a person waits until the MCI develops into full blown dementia, it is usually too late to stop its progress. Since we didn’t know about this condition, we attributed every change to getting older.
We live in Michigan, which means that sometimes you don’t travel because of bad winter storms. However, we had a son in a prison about six hours north of where we lived. Once a month we would travel north and spend the weekend in Hiawatha Correctional Facility, located in Michigan’s upper peninsula. One cold January we were going to pay him a visit. We had left Thursday evening after work and ran into an ice storm. We continued north, and the ice turned to snow with whiteout conditions in certain places. We were traveling on I 75 just north of Gaylord when the whiteout conditions became really dangerous. I was moving quite slowly because I couldn’t tell where the road was except for the reflectors on the road side. I saw the reflector on the right directly in front of the car, I quickly corrected our direction, almost running over the reflector on the left which meant I was zig zagging down the highway. Finally, we drove into a place where the trees offered a break from the wind. We were almost to the Mackinaw Bridge when we hit a patch of black ice and spun out winding up about 20 yards off the road. We were driving a Trailblazer, so I shifted into four-wheel drive and got back on the road. Because of the high winds, the Mackinac bridge was closed to high profile vehicles like semis and campers, but we continued onto the bridge. As we were going over the crest of the bridge the wind picked up and we couldn’t see past the windshield. Because of the center ridge and the side rails I wasn’t worried but is still wasn’t any fun. We finally made it to our motel and settled in for the night. We spent Friday visiting our son in prison while the snow continued to fall outside. With the snow and wind the weekend had been stressful enough, but it was about to get worse. Saturday morning, we were on our way to the prison when Harriet’s cell phone rang. It was her boss, the head librarian, who was upset because a coworker had called him asking who was supposed to open the Library that morning. Harriet had completely forgotten that she was scheduled to work. On Saturday and Sunday they have a reduced staff and the librarians have a rotating schedule. Her boss said, “I’ll cover for you and we can discuss it when you get back to town.” Harriet had worked in the Library for 12 years and this was the first time she had forgotten about working on Saturday. Sadly, it wasn’t the last time. There were two other times, before she retired, that she completely forgot about being scheduled for the Saturday shift. We didn’t think much about this but chalked it up to stress and our crazy schedule.
Although she wouldn’t be considered a computer whiz, Harriet was very competent working with a computer. She worked as a librarian at Devry Institute of Technology from 1981 to 1985 which is where she learned about computers. Every job she had, after that time, included working with computers. Her jobs included: church secretary, Office Manager, Executive Assistant, Head of Shiawassee County Literacy Association, and Librarian. She would often help other employees when they had difficulties with something on the computer. A new program was installed in the library computer about a year before she retired. Something was different for Harriet in that, for the first time she couldn’t remember how the new system operated. She would try to memorize how certain functions worked but the next time she went to work she couldn’t remember what she had learned the day before. Once again, we didn’t think dementia, we thought she was just getting older, was tired of working, and needed to go in a different direction.
Finally, if you know Harriet at all you know that she is a wonderful cook. Our Son-in-law Mike says she is an intuitive cook. She can go to a restaurant eat something and tell you what spices are in the dish. Harriet has been cooking since she was seven. She grew up on a farm and during the fall harvest the entire family would be working in the fields, except for Harriet who would be preparing dinner for the hungry workers. I have seen Harriet prepare Swiss steak dinner for one hundred and twenty-five people. For our daughter’s wedding she made lasagna for 400 people. During the time I was the pastor of Redeemer Lutheran in Owosso, Harriet would prepare Christmas dinner for the staff and council of the church, which was around 25-30 people. This dinner included, 3-4 hors d’oeuvres, Salad, the main course, dessert, and hot cider. She did all these things as if she had been trained at a culinary school. During our last years at Redeemer I could tell that preparing the Christmas meal wasn’t easy or fun anymore. The dinners became more and more stressful for Harriet to pull off. The meals also became simpler with fewer hors d’oeuvres, simpler main dish, and the guests brought dessert. At the time I thought she was just tired of being at Redeemer, and the stress of ministry. Strangely,I also began to notice more and more stress and confusion preparing meals for our family during Thanksgiving and Christmas. Again, I just thought she was tired.
Did Harriet have Mild Cognitive Impairment before it became Frontotemporal Dementia? We will never know. So, if you notice memory lapses in things that you’ve never had trouble with before, go see your doctor. If your doctor says, “Your just getting older,” ask for a second opinion. If the doctor responds, “Okay, you’re ugly too’” you’ve been going to a comedian not a doctor. If I started losing my keys, no one would be too surprised, I’ve always been a bit of an airhead. But when Harriet started losing her keys, it was time to look into it. We didn’t look into it because at least she knew what the keys were for.
Congratulations on getting this started. And a wonderful start it is. And so many people will learn from this. And not just about dementia. Keeping you and yours in my prayers.
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Being a caregiver is a hard job and a stressful one. I did it for Wayne knowing those were his last days. Be sure to ask for help…you need to take care of yourself too. Someone told me, “ step back and be his wife” so I did. I pray for Harriet, you and the family. God bless!
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Hi Dave& Harriet I know what your going through Kit Mom my grandma be had what what has now. you both are always in our Prayers Dave Woodby stay Blessed my Friends. Bud-Dad Joann&Tim xoxoxo
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Thank you Joanne. Prayers are greatly appreciated
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