Our FTD Journey ~ The Wild Roller Coaster Ride with Frontal Lobe Degeneration.....

Thursday, June 25, 2015

In the beginning . . .

I just want my happy life back, the one I had just a year and a half ago. I want my husband back. I feel so sad for many reasons. I feel like I am living with a stranger and I feel as though I have lost my best friend. I feel like  no one understands. I am totally lost and depressed. We had so many plans for this season of our lives, after all, I am only 57 and he is only 61.


It started about a year and a half ago (or so we thought),  anyway, that is when we started to notice a change . . . . . When it first started, I didn't know there was a medical problem. Out of the clear blue my husband was terminated from his job for irrational behavior.  What????  Yes, and so out of character for this gentle giant.  Suddenly we were fighting a lot, he was so unreasonable and angry.   Everything had to be his way and he wouldn't give at all. This was so unlike the kind loving husband I had for nearly 40 years. I started seeing a counselor and my personal physician.  It had only been 2 years since I had lost my beautiful mom to cancer and I was also caring for my dad who lives in his own home about a mile from ours and who had dementia as well. I knew I had so much to be thankful for and was so blessed, but, it was hard to remember that some days. After friends and family started  to notice his crazy behavior and with some convincing, I finally got him to go see the doctor.  And, that is when all the tests began . . . .


What followed for the next months was even more erratic behavior, loss of memory, a complete personality change on top of being more unreasonable. We had seen our doctor and now a neurologist and many tests had been done. They first diagnosed him with Alzheimer's and started him on Alzheimer's medicine and put memory loss on his chart. The good days were ok (and I say that mildly) but the bad days were absolutely awful. My husband had become so stubborn and so unreasonable. He would get mad and frustrated for ridiculous reasons and then not talk to me for days.


Finally after months of doctors appointments, medical test and his constant changes in behavior, we got a diagnosis of FTD or Frontal Temporal Degeneration.  I had never heard of this disease but just knew it was a form of dementia.  A rare form that strikes younger people in their 50's and early 60's.  One that had a 2 to 8 year life expectancy and one with no cure.  I always heard how awful Alzheimer's and Dementia were but never expected that I would be dealing with it in my husband at such a young age. A parent yes, someone 80 0r 90 yes, but not my love. My friends and family kept asking what they could do to help but, honestly, I didn't know what anyone could do.  So I started hours and hours of reading books and doing online research in hopes of learning whatever I could about FTD.  The more I read and learned, the more I saw that he was a textbook example of the symptoms. Also during this time I was trying to get him on disability, finalizing our wills and getting our finances in order.  And, of course he wasn't working so for the next year we lived on our savings account.


Then suddenly, everything out of his mouth like our home or cars, he would say is "mine".  Yes the me me mine attitude started next.  He also became very secretive, making purchases that we didn't need, sheading our bills, turning off our solar system and not telling me things. I keep getting calls from people saying that they were a dealership and was my husband still interested in buying a new car or from insurance companies saying he requested info on switching insurance. I had to spend hours on the phone getting things switched back or turned back on. Keep in mind I have always handled all the bills, finances and such. So this was all new and strange. I don't recognize him anymore.

I just want my life back, to be happy again and to have my husband back. But I know that is not going to happen. I have always been a strong woman and have had my fair share of trials with loved ones, but this one is one that I didn't think and still don't know if I can handle it.

The next months were even harder as I saw him declining and could see the disease progressing so fast. We realized after learning more and watching him that he had shown signs earlier, maybe even for a couple of years.  His behavior was bazar and sometimes scary and the worst part of this particular brain disease is the denial he has.  Yes, in his mind there is nothing wrong. "I'm Fine" is his favorite statement.


When I had a problem in the past I would tell my best friend and we would work it out together, but, I have lost my best friend. It breaks my heart as I watch aw him change into a stranger right before my eyes. I try to remember who he was and how much I loved him. He was my first boyfriend and we got married right out of high school. We had worked so hard our entire life and were finally getting close to retirement and those "Golden Years".  Hmmm, not so golden.  Oh how I just want my old life back!

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