The Tragedy of Frontotemporal Dementia

March 4, 2013

“It’s a monster. It’s a demon. It slowly and relentlessly creeps into the lives of innocent and unsuspecting people. People that find themselves trapped in a life of uncertainty. One they have little control over and one with which they have little hope.”

The University of Saskatchewan‘s Rural Dementia Care team has shared some gripping life experience videos that are available online, and I’ve recently viewed the story of “Ernie”, a grieving gentleman who cared for his wife, Karen until her passing. Karen was diagnosed with frontotemporal dementia. I’m sharing with you much of his heartbreaking story below, but if you’d like to view the full video, you can do so here.

My wife Karen was 44 years old at the time. In the spring of 2009 she worked full-time as a caregiver at a nursing home. She was a loving mother to three grown boys.  She loved to bake; she kept a big garden… everything was great. Together we were working on building our dream home… but things were changing.

She was beginning to grow a little distant. Little things were happening that didn’t make sense to me…at the time. She had always been a devoted worker, but she was starting to find excuses to call in sick more and more often. Frustration was starting to grow in me because she spent most of her days alone at home watching TV and not really doing anything, something that was out of character for her.

Our second son was married in August of that year, and I remember her standing in the middle of the reception floor, lost. She just had this look on her face that she didn’t understand what was going on or what she should be doing. Our boys were all three grown and away from home and this was the first time they had seen their mother for a few months and they too recognized that something was wrong with their mom.

She was put on leave from her job for not being able to execute her duties properly and for making inappropriate comments and actions toward her fellow coworkers and the residents she was in charge of. She spent all of her days now at home, alone, but perfectly content to do so. In her mind, nothing was wrong. Letting go

Things progressed and got worse… we found ourselves sitting in the doctor’s office… and he took great detail in relaying to me what frontotemporal dementia was and what that meant, and said that he thought that was what was wrong with her. Karen sat beside me and listened to that, playing with her phone, and the only thing she got out of it was relief, because it meant that she wouldn’t have to face brain surgery, which earlier had been suggested. She was happy.

I tried to find help because I didn’t know what to do. But it seemed that there was little help to be found. Counselors I saw didn’t really understand what it was like to have lost the person you love like that. Karen was still with me but she wasn’t. The old Karen was gone. I don’t know when she left, but she was gone. I remember little of the next few months. I remember frustration, anger, loneliness, grief at the loss… all those things.

You know I talk about how I felt and not a lot about how Karen felt and it’s not that I don’t care about what she felt; I care deeply. But the truth of the matter is, Karen was happier than she had ever been in her life. She had no concerns, not a care in the world. As long as I was there to provide for her, that was all that she needed…

There were a few things that Karen did that we found particularly difficult to deal with. For one thing, She was a screamer. She would scream constantly for hours on end, and it wasn’t that she was in pain, but that was her way of communicating. She spoke very little by now. She communicated her happiness and frustration and everything else in the way of screams. She also became a biter. She would chew or bite on anything that she could get her hands on, whether it was my shoulder or my finger or anything else.

[On] August 12, I got up …had a shower and got ready for work. Then I went in to see Karen. As I opened the door she flipped the covers over her head and I said, “Where are you?” She said, “Here I am” and she flipped them back again. We played peek a boo for a few minutes, and I got her up, put her in the bath, changed the bedding, got her out of the bath, put some sweats on her, got her back in bed, switched the TV on for her, gave her a kiss goodbye and went to work. That was the last I saw of my wife. She passed away suddenly and peacefully that afternoon.

Ernie concludes his story by talking about his eyeglasses, how they suffered chips and breaks at Karen’s hands, how he patched them, repaired them, and went on.  Now he has new eyeglasses that bear no physical reminders of his time as a caregiver, but he knows his personal scars aren’t so easily remedied. His last words in the interview are, “I can see things are getting better, but those scars will always remain.”

Writer, Gretchen Halverson

Gretchen Halverson was raised on a farm along the banks of the Ohio River. She currently resides in Maine with her 3 beautiful children. She works as a wedding photographer and a writer about senior care issues.

Matt & Ainsley Cohn

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