Just a little bit scared

Have you ever felt like you want to know something, but yet you don’t want to know? When your loved one is diagnosed with a terminal illness and you ask those dreaded questions… you get the answers and are glad to have someone tell you the truth, but the answers aren’t ones you want to hear.

It seems that my husband is progressing at a slow but accelerating rate, which is typical. On a scale from mild, to moderate, to severe, it seems that he is in the moderate stage. The PET scan showed diminished blood flow and metabolism in the anterior temporal lobes. That is suggestive of Semantic Dementia (a form of FTD) but not conclusive evidence. His precise diagnosis is uncertain because of the history of head injury. However, it is the best guess based on symptoms and PET. He declined 2 points on a 30 point scale (14/30) over the last year, which is better than expected. However, observations of his function and behavior are more sensitive to change than the testing and his changes are typical of FTD. More than likely he will not be able to drive, mow the lawn, feed the fireplace, or be left alone while I am at work within the next 6 months. The doctor guesses that my husband has 2-5 years but will watch to see how rapidly he progresses the rest of this year. He’ll have a better sense of his rate of decline then.

This is not supposed to be happening. We are 49 years old.

The five stages of grief are: denial, anger, bargaining, depression and acceptance. I think I’ve hit them all…in the last hour.

What are we supposed to do now? The Land of Denial is a great place to hang out, but I still have to face what to do. What do we do with the house? How am I going to care for our 7-acre property, work full-time, and care for my husband? I’m angry. This is NOT supposed to be happening at this time in our lives. The children are adults and living on their own, we are enjoying having the house to ourselves. We eat what we want, watch what we want, go to bed when we feel like it. We are thoroughly enjoying our time now that he is home. I’m not sure that I have bargained much. However, God and I have had some long serious conversations and a few good cryfests. I will admit that I have asked God to take him from something other than the Dementia and that it be peaceful and quick when the time comes. I don’t want my husband to suffer. I don’t think that I am depressed, but I am sad. I don’t hang out there, because it isn’t productive and it doesn’t really help. However, I will admit to a few cries in the closet, the commute back and forth from work, and the shower. I can’t let him see me. Most of the time I do accept it. I do know that it is what it is. I am comforted to know that he will be in Heaven waiting for me. I love the song, “Waiting on a Woman” by Brad Paisley, because the poor guy has been waiting for me since we were 16 years old. It seems that he is constantly waiting by the door, tapping his foot, and staring at the clock. I am so thankful that we married young, that our children are adults, and that we were able to live in our dream home for the past 4 years. That was a real gift to us.

What can friends and family do? Please keep us in your prayers and encourage us by calling or stopping in for a visit. He would like that very much and so would I. You may want to do it sooner than later…

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4 Comments

  1. Cindy, I know exactly how you feel. Things do happen gradually though. My husband has not driven since a year ago June, he has not stayed alone since then as well. It happened gradually over that summer. He also started hating to mow. This year he tried but left the choke on and the mower burned up. Bought a bigger one which he has not asked to drive. Have to hire someone again for the fall to keep him busy, he didn’t like the last girl and my daughter now has two young babies so she really can’t help anymore. He is sometimes more trouble than the babies. Loll. Don’t want to quit my job, it is my saving grace but really have to get a plan in place for September. Wish there were more answers and resources for this younger group. Having to pay someone to be with him is also another hardship that I had never planned on so early in our lives. My property is big as well and I have taken on so much more. I too wonder how long I will keep this dream house we built as well. Luckily my son lives over the garage and helps when he can. As I tell people, when they ask how we are doing, I say, it’s surely an adventure, everyday. Wish you lived closer we probably could have helped each other a lot. Enjoy reading and relating to your blogs.

    Donna Pastore

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    Liked by 1 person

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