Through my research and a brain MRI I'm feeling my husband has symptoms characteristic of FTD. We are seeing a specialist in 3 weeks.

Evangeline, you have my deep sympathies. My dad was diagnosed with bvFTD in Jan 2021 at age 77 after a few years of symptoms and lots of struggles on the part of myself and my mom to get him diagnosed then on the right combination of meds to help reduce the worst symptoms. Before he was diagnosed, I convinced both my parents to update their wills, health care proxies, and DPOA “just in case something should ever happen” and that proved key to my ability to manage several things including taking away his driving privileges and also taking away his control over his retirement accounts.

He passed away a couple of weeks ago.

This forum is great and tons of people participate — but in case of interest, I wanted to recommend another forum dedicated entirely to FTD called ftdsupportforum.com

best wishes to you!

Perhaps a good (and truthful) line might be ‘Diagnosis is difficult, particularly in the early stages. But if you are perhaps going to be more dependent in the future, we need to work out now how to divide up the jobs that need to be done. You will want to be as independent as possible, and I can’t turn our life into an age care home. I'm getting older too. Let’s look at the best we can do now!”.

You are doing the right steps a step at a time which is the only way you CAN do them.
You are correct that the docs were negligent in just pushing you down the path the slow way, but you are getting there and you have an appointment coming in three weeks which is no time at all.
Are you certain that your husband will GO to that, because if he is going without a struggle that's one vote AGAINST FTD. They almost always are in denial and VIOLENTLY resistant.
I hope you will update us on this appointment.

The sad truth is that there is no treatment.
Can you tell us what specific symptoms you are seeing that you believe are indicators.
Have you made a SHORT synopsis of these for the doctor; that will be more helpful than you can imagine. SHORT and WRITTEN OUT. Almost a short form diary. Such as
"10/7 put butter in cabinet and socks in refrigerator. Denies and very angry"

I wish you all the luck in the world. His treatment would be by symptoms. His progression as individual as his own thumbprint, and your decisions many. Such as you will have to get guardianship so be certain to get LETTERS for the court from the doctor you are seeing. Especially start with the one who gave him Aricept as he is pretty much acknowleging where you are. You are going to have to take over all financial things as this can be really dangerous if he takes into his head some scam or another.

Sorry you are dealing with this. Keep us posted. I am wishing you the very best.

I'm sorry you had such a dismal medical experience. Most dementias are diagnosed/confirmed by discounting other possible causes for the symptoms (tumor, stroke, UTI, vitamin deficiency, thyroid problems, COPD, diabetes, HBP, etc).

My Uncle was on Aricept for a while (less than 2 years). My cousin didn't think it did much, but then there's absolutely no way to know if it worked because there's no way to know how much worse he would have been if he didn't take it.

Please take your husband with you to see the elder law attorney, even if you tell him that it is for your self. This is because he needs to hear what will happen to you if he willfully chooses to not create a PoA, trust, will, advance healthcare directive, etc.

Mostly, if he decides to not assign you as his PoA then eventually you will need to involve social services when his behavior becomes dangerous to himself or others. Then a judge will appoint a 3rd party guardian (not you) and all his life will then be managed by a stranger. It's not a terrible experience (we did this with my SFIL and it was as good an outcome given the circumstances). But if your husband is balking because of trust issues, he needs to know what WILL happen if he doesn't make wise and loving choices now.

But something else to consider: dementia robs people of their ability to use reason and logic, so it's possible that no amount of proofs will convince him. Dementia also robs people of their ability to have empathy for others. Their brains break is such a way that they literally can't care. The reason you take him to the attorney is that if he has a change of heart, the attorney can determine if he has "capacity" to create a PoA... and the bar for that is low so don't make any assumptions.

Make sure you know how to access all the assets and that you are joint on those accounts, especially checking account. Take your name off of any credit cards you are joint with him. Make sure your name is on the house/property deeds and car titles.

How much care are you providing for your Mom? This may now need to be outsourced.

It will definitely be work up front but well worth it. You can read some of the disasters others are living with when they didn't have these things in place when their LO went off the rails with their dementia. I wish you success in protecting yourself on this journey.

There really is nothing that can be done, my stepmother who recently passed was believed to have FTD, the neurologists have no clue.

All one can do is watch the behavior and adjust from there, my SM was originally in AL, we then had to move her to MC where she spent the last 3 years of her life.

Aricept has little effect on dementia, may slow down the progress for a bit, then the shade will come down.

You are dealing with a disease that has no cure.

Without a DPOA you will be in a mess as he will continue to get worse, and you will have no power to make sound decisions for him. Some men are afraid if they make a will, DPOA and so on that this will cause them to die. Immature behavior that shows this person has no concern for others, only themselves.

Sending support your way.

I’m 76, and I don’t think short term memory loss is always typical of aging. It depends a bit on what it is. I have started forgetting words, but as I have a very extensive vocabulary I reckon I’ve still got enough words left to see me through. And it may be true that there is very little you can do about it.

The problem is really that “he does nothing around the house, I am responsible for everything’. That’s not a necessary consequence of short term memory loss, it’s more normally a sense of entitlement and self-importance. And not believing in “Wills, POA's, Financial advisors” etc is a belief that he will live forever, which is also based on self-importance. You probably need to look back to his past behaviors to see if he has always been like this. Sometimes working and earning a living was a husband’s contribution, and W did most of the work at home. Now that his ‘work’ has dropped off, you need to split what it takes to look after you both.

My suggestion would be not to bother too much about a diagnosis, and concentrate on behavior that you can live with. A diagnosis can turn into an excuse which doesn't alter the bad behavior. (Another thread has been talking about psych games, and there's actually one called 'What can you expect from a man with a wooden leg?) I find that food is a good motivator – he gets dinner if he does the jobs he is down to do. If he wants to be waited on hand and foot, his option is to go to an aged care facility. Thinking about that might shock his socks off!