Hi everyone, what were your spouse's like before they were diagnosed? Like in the 5-10 years before? Did you think they were heading towards FTD? Or were they just hard to live with? Or was there no sign at all?
I really saw no signs. What got him to the doctor is I was tired of repeating all the time cause he didn't hear me. I labeled it selective hearing like with children. That set in motion neuropsych testing and diagnoses. The CT nor MRI showed anything unusual. Unlike many, because I sent him to the doctor to have his hearing checked, he was diagnosed early in the disease. But like many, I can look back and see about 4 years before changes that could be associated. His mom died in 2001, his dad had AD and was getting worse, his younger sister was diagnosed in 2005, in 2006 we were working at a park in Florida with real nasty managers. My husband got along with almost every one but this manager screamed at him, yelling all sorts of profanity which we don't use, because he did a job wrong due to the manager not training him right. He was never the same after that but I thought it was depression. In 2/2008, just before he went to the doctor our dog had to be put down which added to what I thought was depression. He was diagnosed on the basis of the neuropsych test and mainly family history. The doctor thought the test showed some losses like 4th grade reading, but when I went through it, it was the way he always had been including poor reading and comprehension.
I believe it was the incident in Florida that triggered the disease to come out in the open.
Looking back symptoms started well over 10 years prior to dx. Leannah was already seeing psychiatrists who had problems making a dx or a new dx with every psychiatrist. One psychiatrist called her her most challenging case.
Around 1 month before Leannah suffered a TBI I decided I was going to accompany her on a visit to the psychiatrist (I have done this before) to review behaviors not yet addressed. When I brought this up post-TBI (these symptoms became much stronger) I was told that these were noticed but where neurological and not psychiatrist, so this might have led to investigations that might have ended up with the FTD dx at around the same time she ended up getting one. Her poor recovery from TBI led to investigations which resulted in FTD dx.
Anyway, symptoms prior to dx for 10+ Years prior to dx.
Extreme anxiety. Some clinical depression.
Loss of energy over the years.
Insisting on taking a path on a hike that was obviously not a path and would not turn around. I estimate this became a 20 mile adventure that could have resulted in our deaths. This was consistent with her unwilling to change decisions.
Withdrawal from social situations where people didn’t share her narrow interests. When our son played baseball she sat as far away from the other families by the end of the season. Despite being parents of our son’s schoolmates insisted they had nothing in common since they weren’t Bruce Springsteen fans.
Violent outbreaks. Most private, some public. 9 years before I had to restrain her by blocking her way because I thought she was going to attack our son’s gymnastics instructor. One time blew up at a sister who suggested our son get speech therapy before starting Kindergarden (sister is a speech pathologist).
Increasing difficulties with certain technical aspects of her job. She was superior in her science editing job but the stupid way they made tables in Word was getting harder for her to deal with. She was unable to describe the problem and didn’t want instruction on how to do it, but just wanted me to do it. She was getting more and more help from another editor on this task.
Delusional thinking.
Became very self-centered. Would turn every conversation to be about herself. If our son talked about a problem at school the discussion would always become about how she was bullied at school.
Here family was very concerned about her mental health.
In sum, life for everyone was walking on eggshells.
So many signs looking back that were missed as such because they weren't that far off normal, or what had become normal for us. It didn't start with memory issues and I didn't realize that there were dementias other than Alzheimer's disease, so I didn't know what was wrong. Once I learned about FTD, I became convinced that is the issue. He has so many of the behaviors although not to the excess that some experience. I am fortunate in that my kids (who live 100's of miles away) have been supportive from the time I first talked to them about what was happening with us. Like paulc, there are many individual similar anecdotes, but fortunately for us, never the violence. Joan's blogs here on the AlzheimerSpouse website were my first confirmations that something was amiss. My husband may have a mixture of dementias.
At first he stopped fixing small sprinkler issues that he used to do as a matter of course. Then he wouldn’t let me try to get the sprinkler timers working right. One line kept coming on at night. When I noticed it he would just get angry and say he’d take care of it. Then he forgot how to do things that used to be no problem.
Then he’d ask the same question over and over. For some reason I never had a problem with this. I just pretended it was the first time he asked. After a number of repetitions he’d frequently get it. I think that’s why I suspected Alzheimer’s rather than simply short term memory problem.
Then he started having trouble finding the right word. At first not too noticeable. Then interesting word associations. He’d come up with a word that was the same color as what he meant, or rhymed with what he meant. Best one was when he told me I should have seen our dog chasing a battery out on the hill. I finally got to Energizer and figured out Xena chased a rabbit.
Then he had difficulty grocery shopping. Fortunately he had learned to use a little cell phone before this. He’d call me from the store multiple times for directions to find things. He had several friends on the staff there who helped for a long time so he could keep doing it by himself. Eventually I had to go with.
Then he had difficulty cooking. For awhile he could follow directions if I told him one step at a time. He was the primary cook in our house.
That’s a crucial point! Don’t try giving three steps and think he can follow them.
My uncle has some other kind of dementia. He has short term memory problems. He is 90 and frail now, so difficult to tell if he doesn’t do things because he forgot how or just is physically unable. I don’t get the same feeling when with my Uncle as I had with my husband.
Hi sashmom, Welcome to the site. My husband did not have FTD. Just plain old Alzheimer's. He started getting lost when driving alone, so it took him a long time to get places. (Of course, he refused to ask for directions, but that was nothing new!) He had always had a poor sense of direction, so I was not too worried. He also forgot things I told him, e.g., that I would be late coming home from work on a certain night. One morning, shortly after I left for work, he blew up at some workers who were laying a new floor in our kitchen. It was so bad that the contractor ordered his crew to leave the house for the day. My husband was a mild-mannered and courteous man - a complete gentleman - and this behavior was completely unlike him.
Things that I started to wonder about very early on: 1. He started having trouble with finding words for things. 2. His formerly entertaining storytelling--like with friends around the dinner table--lost all sharpness and just started to ramble around too much and go on too long. 3. He would delay paying bills "to enjoy the float" until we started getting late notices. (I know you don't have to pay your bills early, but you do need to pay them on time. He felt it was wise financially to hang onto the money longer.) (Hello!) And also I started noticing that when we were out to eat in a restaurant, he would always have me order first..which he had always done...but then he started always just telling the wait staff that he would have the same thing I was having. I realized after a while that this was because he couldn't cope with figuring out the menu/choices, etc. So I was careful to order myself something I knew he would like, because I knew he was just going to have the same thing.
Thanks everyone! I appreciate it--I've been going through the forums and blog to learn more but its great to get input directly about the early stages.I am just watching my dh right now as he has had such odd behavior recently. But most people just say its just a midlife crisis, depression, or even marital problems...it could be! I just think FOR HIM his behaviors are so different so I am getting a little worried.
Myrtle asked what signs I am seeing. The one that concerns me the most is the anger. Most people see him as a very peaceful, relaxed man, and that is who he always was. Now any small thing will make him raging mad (examples, I threw plastic in the trash instead of recycling; i asked him if he fed the dog; he lost his keys, etc--gets so mad). He cusses and he has never cussed before. He used to have great navigation and be an excellent driver--the other day he missed an exit and another time drove right through a stop sign. He will cook 2 packages of pasta and no sauce (he used to be a great cook). He only ate potatoes for 2 weeks, then stopped eating completely (he is eating normally now). He will turn off the stove while I am cooking thinking I left it on (when dinner is actually cooking)--or turn the lights out when I am in the room. He isn't able to hold a conversation with me and has asked me to text him important things we need to talk about. We went to our son's concert together and he decided he wanted to leave, so he just got up and drove home (left me there! I had to text him to come back and get me, which he did--didn't see anything wrong with leaving). Like elizabeth said, he is not paying the bills on time anymore and always has odd reasons that he thinks are really legit (maybe they will erased if we don't pay them, he said(!)). His procrastination for everything is literally up to the last minute, though he will get things done. I have to remind him of all our activities each day. etc etc etc.
Writing all those things could be just normal things, I don't know, or it could be bad behavior? But he's always been a great guy, kind and gentle. Hard to know at this point! I'm just keeping notes about the things he does, and know from the forums that there will be something SO odd to make it obvious that something is not right...just keeping my eyes out.
Sashmom, I’m sorry to say this doesn’t sound like normal things or bad behavior.
You might want to see about getting some testing done. I didn’t do that with my husband because after caring for his Mother, it was obvious to me what was going on and from what I read the medications didn’t make much difference, the treatments were the same for all the different types of dementia, and he refused to go to the doctor. I found out much later that it is important to get the testing done while they are still capable to participate because the medications used later on in the disease depend greatly on the type of Alzheimer’s. Depending on the type, some meds that are used to control behavior can actually be harmful and counter productive.
You need geriatric specialists. Some others may chime in how to find them. Try your local Office on Aging. They should be able to refer you to local resources. You don’t have to be poor to get help from them. Yours might have a slightly different name. In the US, they are generally at the County level.
You might want to take charge of the finances right away. Converting bills to auto pay can be a good way to convince husbands. Sounds like he might need to stop driving soon, if not already.
Sashmon, You are not alone and you definitely need to be reading on FTDSupportForum.com if you aren't already there. It is a well monitored, privacy respecting, informed group. Mid-life crisis, depression, marital problems are all responses that others trying to figure things out have heard. FrontoTemporal Degeneration is not as well known as Alzheimer's Disease. Personality changes such as you are seeing are how FTD is expressed. This is not normal and it is not bad behavior. Join FTDSupportForum.com and introduce yourself. You will find others there who understand what you are facing. You are in the roughest part right now (in my opinion) with extreme behaviors that make you question yourself. I'm CarolVT on that site also, and, while I contribute only occasionally, I read it every day through the "new posts" feature. There are many topics and many threads that you can search.
CarolVT and bhv, thank you so much! No, dh is not a vet or vietnam. Great idea about testing--he has a family line of females with dementia (though later in life) so I might be able to use that as a reason to get it started. And CarolVT, I will check out FTDSupportForum.com thank you!
sashmom, I agree with bhv and CarolVt about the testing. My husband's PCP referred him to a neurologist, who did some tests (imaging and blood) to rule out other causes (vitamin deficiency, brain tumor) and ordered a cognitive exam by a neuropsychologist. These tests can't definitively diagnose what type of dementia someone has, but they can give a pretty good idea.
Keep in mind that whatever the cause of your husband's problems, some of his behavior may be attributable to embarrassment, confusion, anger, etc. My husband started screwing up all the things he had been good at and when I tried to intervene, he was embarrassed and defensive. He also became insecure because he misinterpreted my own behavior. (I was in shock and despair over the diagnosis.) It took me a while to realize this but once I did, I made an effort to build up his self-esteem, avoid criticizing him, and present an impression of normalcy. I didn't always succeed but when I did, it made life a lot easier.
Keep in mind just because he has anger issues does not mean FTD. People with Alzheimer's can have it to - my mother did. My sister did after her stroke - the Vascular Dementia symptoms showed up right away.
I agree that you need to take over finances before he ruins you financially. He needs to stop driving.
Also, be aware they can have mixed dementia especially as the disease progresses. As others mentioned the only reason to narrow it down would be for medications. Some don't work good on FTD or LBD.
I am at my computer not on kindle so I can type more!!
I say he needs to stop driving due to the risk both financially and in human life. I have heard over the years if you would not feel safe having your kids or grandkids riding with the driver, then they should not be driving. How would you feel if he hit someone either hurting them badly or even killing them? I say you because they loose reason early on which means he probably would not be bothered, at least for long but you would be. If he gets in an accident and it comes out he has these problems, the other party could go after you for everything you have (and don't have). Unless you have it in writing that your insurance will cover him once diagnosed (which if I remember he is not yet), many companies will not cover them.
To summarize what you need to do:
Get him diagnosed. If need be take him to a place that specializes in memory issues. Not all neurologist or doctors are good when treating dementia. If need be write all the things down that are happening to give to the doctor that way you don't have to talk in front of your husband. Mine never minded, I was always at every appointment (he will have to give them permission for you to be in there and/or have the doctor talk to you)
Get your legal paperwork all in order while he can still sign - do it for both of you which will often cut down on arguing over it. If he argues about him now being yours, then have the attorney do one up with his name and you can meet privately later to change it. You need to have a Durable Power of Attorney in place that gives you control of finances and medical care when he gets to a certain point. When we did ours my husband was early in the disease but the attorney made it effective the day he signed it although I did not really take the control until about 3 years ago (9 years into the disease). For medical too, if you have not already talk about end of life issues now. If you know what he wants and doesn't want before the time comes, it will be so much easier on you.
Put things like utilities and financials in your name only. I always paid the bills so that was never a problem for us. I did open a bank account in a different bank where my SS went into. We have a joint that his goes into but I needed a separate for mine for later when we applied for Medicaid Long Term Care. I put the car and motorhome (I live in it) in my name only. If you have a house, that should be too. Best is if you can afford it is to consult a Elder Attorney in ways to protect your assets the best way. If you are going to need Medicaid Long Term Care in the future now is the time to start planning in which case you may be better finding an Elder Attorney that specializes in Medicaid.
If you can get the legal paperwork done now it will be one less surprise for the future to worry about.