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

Stop the roller coaster . . . I want to get off!

My husband Claude has been diagnosed with FTD (Frontal Temporal Degeneration) by a neurologist. I have done a lot of research on line, talked to others on this site and of course spoken to medical professionals. I know some of you have read my previous posts and know a bit of our journey. I wanted to list some of my husbands behaviors so that we (others who have a loved one with FTD) could discuss and maybe try to help each gain a better understanding of this terrible disease.

I want to preface this by letting you know that before this disease my husband was gentle, kind, loving, a wonderful husband, father and grandfather. We have been together for 40 years. He was my best friend. He was highly professional and had a job with the FAA. He also attended church and our faith has always been strong, He went to all his 5 grandkids sports and school activities . . . . And then one day he lost his job due to erratic behavior.

Early behavioral changes (when we first started to notice after the loss of his job 15 months ago).

Started being forgetful
Was easily angered
Seemed confused at times
Started being really stubborn
Was hard to reason with
Would comment on how he was having trouble remembering
Couldn't remember friends and acquaintances at times and/or events
Change in personality and mood, seemed depressed
Started being self centered
Started withdrawing from friends and anything social
Started showing signs of poor judgment (like diving in shallow end of pool)


About 6 months ago (along with the above):

Started having outbursts
Was aggressive in behavior
Very easily Angered
Started giving me dirty looks
Became even more stubborn
Started getting words mixed up
Was repetitious in his actions
Had no filter
Showed no empathy seemed cold
Unwilling to talk or gives one word answers
Started being unsocial
Started saying he was going to win a million dollars
Gullible believing he was really going to win a million dollars
Stopped going to church with me


Now (along with most of the above):
At this point the neurologist has pulled his drivers licenses

He sleeps a lot
Gets up during the night
Non stop eating of sweets
Whispers or talks really low and soft
Plays music and TV full blown blasting the volume
No affection or emotion shown at all
Everything is all about him "mine" (is his favorite word)
Slurs his words at times
Complete stubbornness and extremely unreasonable
Watches TV all day long (some shows over and over)
Is completely unsocial
Is completely in denial of anything being wrong
Gets mad really easy (scary)

Such a roller coaster ride . . . never know what I will be dealing with day to day. The unknown scares me. I feel like it is going really fast and that scares me. I feel like I am living with a stranger. Even though I have great support in friends and family I still feel alone. I feel like I have lost my best friend. Do any of you have any thoughts or comments or similar situations. This is the hardest thing I have ever had to deal with and sometimes on his really bad and mean days) I truly don't think I will be able to endure. I also feel like it is going really fast. Remember together we are better.

Hugs and prayers always,

FTD Overview

When I tell people that my husband has Frontotemporal Degeneration most people have never even heard of it. I have heard it is second most common brain disease. I have attached the disease overview from one site that I go to for answers. I hope this is informative to those who need it. Remember so many of the brain diseases in dementia form go misdiagnosed a majority of the time. Together we are better . . . . prayers for all who are dealing with this disease and for their caregivers.

Disease Overview
Frontotemporal Dementia
Signs and Symptoms

In the past, patients with frontotemporal dementia (FTD) often were misdiagnosed with depression, schizophrenia or Alzheimer's disease. Because some FTD cases still may be misidentified, doctors at the UCSF Center for Memory and Aging say it's difficult to determine the prevalence of the disorder but they believe FTD is the most common dementia diagnosed in patients under age 60 and is as common as Alzheimer's disease among patients age 45 to 64.

Early symptoms typically involve personality or mood changes such as depression and withdrawal, sometimes obsessive behavior and language difficulties. Many patients lose their inhibitions and exhibit antisocial behavior.

Doctors at UCSF have identified a small group of patients who develop extraordinary visual or musical creativity, while experiencing language and social impairment.

As FTD progresses, it takes a toll on mental abilities, affecting memory and other functions that are more common in Alzheimer's disease and other dementias. In Alzheimer's, one of the first symptoms is memory loss. With FTD, unusual or antisocial behavior as well as loss of speech or language are usually the first symptoms.

In later stages, patients develop movement disorders such as unsteadiness, rigidity, slowness, twitches, muscle weakness or difficulty swallowing. Some patients develop Lou Gherig's disease or amyotrophic lateral sclerosis (ALS). People in the final stages of FTD cannot care for themselves.

Behavioral Symptoms

Early signs of frontotemporal dementia may involve the following symptoms:
•Apathy or an unwillingness to talk
•Change in personality and mood, such as depression
•Lack of inhibition or lack of social tact
•Obsessive or repetitive behavior, such as compulsively shaving or collecting items
•Unusual verbal, physical or sexual behavior
•Weight gain due to dramatic overeating (Read more about FTD and binge eating.)

Patients may neglect hygiene and resist encouragement to attend to themselves. They also may lack awareness or concern that their behavior has changed.

At the UCSF Memory and Aging Center, doctors have found a small group of FTD patients who develop new creative skills in music and art. The artistic talents developed when brain cell loss occurred predominantly in the left frontal lobe, which controls functions such as language. It is believed that the right side of the brain regulates more abstract reasoning.

Language Symptoms

Language problems are less common but do occur in the early stages of FTD before other thought processes, such as memory, are affected. Patients may experience difficulty speaking or finding the correct word when naming objects. Difficulties reading and writing then develop. As the disease progresses, less and less language is used, until the patient becomes virtually mute. Other patients may have a severe problem recalling words and understanding word meaning, but continue to have otherwise normal speech.

Hope this helps answer questions . . .

The light in his eyes is gone . . .

Today we met with the neurologist once again. Claude was recently diagnosed with FTD (Frontal Temporal Dementia) after losing his job for erratic behavior and then continued erratic behavior for months. It has been devastating for our family to watch the once amazing and loving husband, father and grandfather decline and change in front of our eyes. Today he got another blow (but we knew it was coming). The doctor told him he could no longer drive . . . . This means not only giving up driving cars but giving up riding his motorcycle which he loves dearly. My husband argued with the doctor saying he was fine, a good driver and just was a little forgetful. The doctor very gently but firmly told him he could no longer drive for his safety and the safety of others. He then told my husband he was reporting it to the DMV and his license would be suspended. It broke my heart to see the sadness in his eyes. It took everything I had to hold back the tears. I feel sad and then mad and then guilty and then sad again. But I have to be strong and not let him see my sadness. It's all just so much work and so draining. He is still young and we had so many plans. This is just another part of his independence being taken away. It just isn't fair. This disease is absolutely hideous!

On the way home from the doctors office our daughter Nicole talked to him more about what the doctor had said but he was defiant and said he was going to drive. Our son Jonathon called him later just to say hi and see if he would mention what the doctor had said. To our surprise, he told our son that the doctor said he couldn't drive and then told our son he was still going to drive anyway. Of course, then Jonathon explained once again all the reasons his dad could not drive.

When I got home from running errands I told my husband that I would take him on a drive every day in the country, and, that we would turn the music up full blast, roll down the windows and speed. He had a huge smile and then said to me "really"? I responded with "yes"! So this will be our little date every day that I can. . . . .a ride in the country! It's all about making more memories when we can and making the best out of what we have been dealt. Just 38 years ago when I said "I do" I said for better or worse and I meant it. Hugs and prayers. . . . Rhonda

I HATE FTD!!!

This disease (FTD) is so strange . . . I never know what to expect. My husband has stopped with the outbursts, I am not sure if it is just part of the process or if I am just handling things better. Now he seems to have withdrawn even more and is sleeping all the time. Of course we still deal with him getting up all through the night. But this morning when I left at 7:45 he was sleeping on the couch with the TV volume very low and when I got home at 12:15 he was again on the couch sleeping but the TV was blaring loud. Over the weekend he was slurring his words at times almost like one would do if drinking (he doesn't drink). I think this disease is progressing really fast. I feel so scared. . . I wish I knew where he was in the progression. We meet again with the Neurologist on May 4th to go over his latest PET SCAN. Maybe we can get some answers then. It is such a roller coaster ride and today I am feeling down . . . .

Compassionate Allowance Inititive

Great news!!! New law passed in 2015.
Please read and see the link at the bottom of my post to get more information.

PS.... Remember we are better together!

Compassionate Allowance Initiative:
The Social Security Administration (SSA) has added early onset/younger-onset Alzheimer's to the list of conditions under its Compassionate Allowance Initiative, giving those with the disease expedited access to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). The Alzheimer's Association, a longtime advocate for those with early onset Alzheimer's, has played an integral role in this movement to reduce the length of disability decision process. Sign up for our e-newsletter and learn more about the actions we take on behalf of individuals and their families living with Alzheimer’s.

What is the Compassionate Allowance Initiative?

Under this initiative, the Social Security Administration (SSA) finds individuals with certain diseases/conditions eligible for Social Security disability (SSDI) and Supplemental Security Income (SSI) benefits by the nature of the disease. While applicants still have to meet other SSDI criteria and/or SSI criteria, when it comes to the disability criterion, they are considered eligible by virtue of the disease and fast-tracked for a favorable decision about their eligibility for SSDI and SSI benefits.

What is Social Security Disability Insurance (SSDI)?

Social Security disability benefits (SSDI) are paid to individuals who have worked for enough years and have a condition that is so severe that they are not able to work any longer. Administered by the SSA, SSDI makes monthly payments to eligible disabled individuals and is a significant benefit for individuals with early-onset (younger-onset) Alzheimer's disease. In addition to a monthly payment, it serves as entry to Medicare benefits for those under the age of 65. Family members (e.g., spouses and minor children) may also be eligible for benefits based on the applicant's work record.

What is Supplemental Security Income (SSI)?

Supplemental Security Income benefits (SSI) are paid each month to individuals who are aged, blind or disabled and have limited income and resources (assets). The "disability" criteria for SSI are the same as for SSDI benefits. Unlike SSDI, eligibility for SSI is not based on prior work experience. In addition, in most states, individuals who receive SSI are also automatically eligible for Medicaid (medical assistance) benefits.

Why is this important to individuals with early-onset Alzheimer's disease and related dementias?

Social Security disability benefits are very important to those with early-onset (younger-onset) Alzheimer's and related dementias because these individuals are often initially denied benefits – but usually win on appeal. Those affected by early-onset Alzheimer's are often simultaneously faced with the enormous challenges that the disease presents, while also undergoing a long disability decision process that is financially and emotionally draining. By adding Alzheimer's disease to the list of “Compassionate Allowance” conditions, it will simplify and streamline the SSDI/SSI application process and should result in receiving SSDI/SSI benefits in an expedited manner.


http://www.alz.org/living_with_alzheimers_social_security_disability.asp#co mpassionate

Counting all my blessings, one by one . . . .

Who knew that this journey (my husband age 61 has FTD) would be so difficult. It was hard enough to find out after a year of erratic crazy behavior and loosing his job that the love of my life of nearly 40 years had a fatal brain disease. Then trying to accept and comprehend the terrible diagnosis knowing there was no happy ending and things would only get worse. At the same time my whole world was being turned upside down I had to deal with no income from him (he was too young for Social Security) deal with the very uneasy application process for Social Security Disability, which still has not been approved (can't they see the diagnosis of Fatal Brain Disease) go to all his medical appointments, take care of the house, the yard, the bills, and go back to work part time. . . . all the time watching him decline to the point that my husband is gone and I am living with a stranger. With an uncertain future, not knowing what to expect, financial uncertainty (our savings is fast running out) and the grieving process, I have barely kept it together. There have been terrible days that I thought I could not bear and my emotions are all over the place. I get mad, mad at him and mad at God. I feel robbed. . . . Then I feel bad for getting mad and the guilt sets in.

After beating myself up and crying a lot, I remember to count my blessings. Yes, he has this awful disease and yes he is dying and yes I am sad and lonely and even scared. . . . but then, I remember that I had 40 years with this amazing man who is the love of my life (after all, we were high school sweethearts). A man who was the most amazing dad to our kids. I have to remind myself that some people never have even a couple of years with someone they love. I also remind myself that sometimes it takes years to get a diagnosis and we figured it out in one year. I remind myself that I have the most amazing family and friends who love and care for me. I know how much I love him and even though there will be horrible days and things will get so much worse . . I know that I will endure to the end. I have to! And even though there will be days that I will still be sad and even mad, today I am feeling blessed. Blessed to know that we will be together again some day and this isn't the end of our amazing love story. 

This was a Sad Easter . . .

Yesterday we had our usual Family Easter celebration except this one was different. It was my husband and I, my dad, Nicole, Eric and the 5 grandchildren and Jonny. It was our first family gathering since Christmas and since Claude had gotten so much worse. Everyone can now see the difference in him, even the older grandkids. Yesterday just didn't seem the same. I can't explain except for me "this dark disease" is always with us. I miss the sparkle in my husbands eyes, his charming smile and funny personality. My son who lives in Southern California had been staying with us for 4 days and was getting a first hand look at how bad things have gotten. My son had been doing a lot of research since my husbands diagnosis of FTD and had gathered information and several videos for us to watch. I think that all day instead of enjoying the day all I could think about was what we had planned for that evening. After everyone left, Nicole, Jonny and I decided to sit down with their father to explain the diagnosis to him. We wanted to see just how much he understood. Nicole started and very gently began by asking him if he knew he was sick and what he had. He always looks at me with this look of "help me" when ever he is questioned by family or doctors. It broke my heart to sit and watch and listen to my children explain to their dad how much we all loved him, what was happening and what to expect. As you can imagine, there were a lot of tears. Then we all watched the documentary my son found "What is Frontoltemporal Degeneration" (https://youtu.be/Ue3y60AsMCE) together as a family. I don't know how much Claude understood as he didn't have any comments or questions for us when it was done. We hugged him and told him how much we loved him and that we would handle all of this together as a family as we always had.

I have the most amazing children and I know how blessed I am.  Claude was an amazing and loving father and husband. He coached their sports, attended their dance recitals, Scouts, and did everything a great dad does. Our kids have told us so many times that they had such an amazing childhood and were so grateful to both of us. Family always came first for us. I think that is why I feel so angry and robbed. To have had such an amazing life and for it to all end up like this with all our hopes and dreams lost. My wonderful husband and best friend is gone and now I live with a stranger. I love the occasional glimpses of the old him, but those are appearing less and less.

I wasn't sure if we were doing the right thing yesterday... but I feel some peace that maybe he at least understood how much he is loved. This is such a hard journey and as hard as it is, and will get, and as many times as I will think that I can not go on, I will rely on my amazing kids and friends to help me through. And when that isn't enough I know that my Savior is with me and sometimes I can even feel his arms around me. I just pray that my husband doesn't suffer too much or isn't afraid as I don't think I could handle that. I love him with all of my heart. . . . .

  

Has He Forgotten He Loves Me???

I am once again on here asking for help and advice and hopefully someday I will be able to offer some words of advice to someone.


There are some good days and the bad days are becoming more frequent. He gets angry, is stubborn and totally unreasonable. Sometimes he looks at me with this look . . . .  that it breaks my heart. I have to walk away, bite my tongue and just go into my room and cry. I constantly remind myself that it is the disease not my husband but then I am reminded that it will only get worse.

 Lately, he mainly just watches TV and listens to music. But the volume IS ALL THE WAY UP. He is actually obsessed with "his Music" as he calls it (everything is "mine, mine, mine with him). We go into a place of business, any place, it could be the bank or doctors office and he pulls out his phone and turns on the music. If I ask him to turn it off or lower it, he turns it up louder. Some of you might say take his phone away. Believe me I have tried, but, I can't get that thing away from him (it's always in his hand). I have thought about having him use ear buds or a head set next time we go to the doctors. When he is in the car the music is always BLARING LOUD and even if we are swimming with the grandkids in the back yard he has to have the music BLARING LOUD. He gets mad and glares at me and says "I like my music" if I ask him to turn it down. I have tried telling him that the neighbors may not appreciate the loud music and he says "I don't care"! The grandkids who love loud music don't even want to be around him or in the car because the music hurts their ears.

I am just at a loss of how to deal with him and his temperament. I am still seeing a counselor and have read the "36 hour day" and done tons of online research.  I have read that music sooths them and that it helps with the constant buzzing in their head, and I totally understand that . . . but when it is unbearable for everyone around including neighbors, I am just at a loss once again.

Somehow, someway I will be able to get through this . . . . . This isn't fair and I wonder if he remembers what we had, what we were and that he loves me . . . .

Somebody push me out of this boat!

It's so hard and I really don't want to have my husband around anyone. I am a nervous wreck when I do. . . .   Today I took my husband to the orthopedic for his back and knees. This was just the first of four doctor appointments this week. He also has an appointment with his regular doctor and his neurologist as well. It is really hard to take him out because I never know what he will say or do. He is 61 and one thing I have noticed is that when an older person acts irrational or shows the symptoms of Alzheimer's people just chalk it up to their age or dementia in older folks. But, when someone Claude's age (60ish) shows this behavior, people just think their crazy.  Today, at his doctors appt. he first gets really impatient waiting in the doctors office (maybe 10 minutes) then when they call us in to the exam room, he turns on the music on his cellphone. When I say "hey sweetie, this is a doctors office and they are trying to work could you please turn that off for now"? He gives me a really dirty look, turns the music up and yells "I like Music"! So, I just ignore it (again) and hope the doctor got the note I slipped his nurse about my husband having a brain disease. Then as we are leaving he try's to crush the doctors hand with a handshake (he has always been strong but a gentle giant until this mess). All of this after I have worked at my job for four hours, come home to laundry and dishes, etc. I am exhausted . . . . but it is more of an emotional exhaustion. He is not to the point where I can take his phone (the thing is always in his hand). He has been letting me drive more. Many times he is in the family room with the TV BLASTING. I always have to come into the bedroom because I can not handle the extreme volume. It is not the forgetfulness that is hard... it is the change of personality, paranoia and being so unreasonable that I can't handle. And the worst part is . . . . This Is Only The Beginning.  They say that God never gives you more than you can handle . . .but this time he did!  He was such an amazing, loving and wonderful man before all this.  I don't want to be in this boat anymore so Please, someone, push me out! You have to find some humor in this journey and it helps . . . .