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!

Just when I think I have HIS "routine" down . . . Boom!!

Just when I think I have HIS "routine" down . . . boom!!! My husband changes again. The loud (all the way up booming) music playing and TV stopped over the last week. YES, it was so wonderful to not endure that blasting music anymore. But then . . . a few new behaviors suddenly appeared. First, the whispering started. So now I have to ask him to repeat everything about 10 times until he stops whispering. Next, It has been over 100 degrees the last week or so, but, we CAN'T turn the air conditioner on, that is until night when it's cool. . . oh and then he opens all the windows. WHAT the heck???? We can't buy any fruits, vegetables or anything healthy when we go to the grocery store (if I put anything in the basket he takes it out). He only wants chips and cookies and junk. He suddenly is modest (after all, we have only been together for 40 years) won't change in front of me anymore. Of course I can't do anything that makes any noise during the day when he is watching his same TV shows over and over like dishes or vacuum. And, I can't turn on any lights at night (even though it is pitch dark) in the kitchen if I need something because all the lights have to be completely off. And who knew you didn't have to shower if you go swimming every day. Also, I never knew he was a Navy Seal . . . . yes, he tells everyone he was a Navy Seal. He did work for the FAA and he was on the under water rescue team for the Sheriffs department 35 years ago, but, never a Navy Seal. In fact he has never been in any military of any kind. I try not to take him out in public too much because I never know what he will say or do. I realize this post sounds so negative but I am truly exhausted and at a loss. Of course all this new behavior on top of what he was already doing. Everything has to ALWAYS be his way and the me me mine attitude is always there. In fact he has now stated that I have to get RID of my dog because "he doesn't want it" (the dog we have had for over 10 years) Sadie.

I am absolutely dreading his next Neurologist apt in July because he is convinced the doctors have made a mistake and are going to give him his license back. And, if they don't he says he is not going back anymore. Besides, I don't even know where he has hidden his set of car keys after I sold his truck and motorcycle. At our last appointment with our attorney to finalize our living trust, he said to the attorney right before we were leaving after making a fist "do you want me to break this desk"? Our son then whisked him out of the office. I HATE FTD! I know it doesn't help to complain . . . OH and how I wish I had my old life and my amazing husband back, but that is not going to happen. So I will keep on dong the best I can. Thanks for letting me vent and for all the prayers. Hugs because together we are better . . . .

Rhonda