Financial disaster and FTD/ALS patients

[marheid]

I'm a new member with a husband who, after 12 years of confusing symptoms and visits to doctors all over the country, was finally diagnosed in 2009 by the NIH as having frontotemporal dementia (FTD) with ALS-type motor neuron disease.

Every day brings a new problem and I appreciate finding a source like this with many helpful ideas, but has anyone also had to handle the financial disaster that we are experiencing and seemed to coincide with my husband's dementia? In a short time before diagnosis, he depleted our retirement fund, lost all our investments by tying them to a large line of credit he used to buy Florida real estate (all now "underwater"), and began buying lots of "things", amassing huge credit card balances. Apparently this kind of behavior is not uncommon with a fairly large number of people with FTD, but no one ever wants to discuss it. Has anyone else had something like this happen?

 

[Katie C]

We basically got very lucky in this regard... we were heading towards some serious financial problems... he'd maxed out our credit cards, wanted to sign up for every vacation promotion he got on the phone or computer... on and on. What saved us was when his company brought in a pair of financial advisors who were very good. We had a sizeable 401k from his previous job that they suggested we roll over into an IRA. I insisted on going to that meeting... talked with them about the credit card issue and we were able to start structuring a repayment schedule. From that day on I handled the finances, checked the bank accounts daily and got us at least on some kind of stable footing.

But to be honest... what saved me financially was that my mom, my mother in law and my husband died within months of each other and the combined inheritance, wisely invested, is what's keeping us going.

I'm sorry for your husbands diagnosis. It's hard for people to understand how close Glen and I came to splitting up because of his FTD symptoms... which were undiagnosed and misdiagnosed for years. At least with the diagnosis, it's a little easier to not take the weirdness personally.

Welcome to the forum... there are several of us here either living through it now, or have lived through it in the recent past. We're here to help if we can.

 

[BeckyUK]

I attended a recent lecture by an ALS specialist in the UK and this problem was mentioned. To be honest it was the first time I had heard about it and I agree that this is rarely discussed.

She explained that in the early stages of FTD impulse control becomes weaker and that the patient needs to have more immediate gratification. It was said that this can sometimes display itself as selfish or rude behaviour (such as taking the last cookie on the plate without asking if anyone else wants it), demanding that others do things that the patient wants, go where they want to go or even starting to spend lots of money or take financial risks in an effort to 'get rich quick'. She explained that this can cause many problems as, at the stage this is happening, the patient is often able to function outwardly and will not be showing any other sign of an underlying problem.

The hardest thing is that this change in character is most noticeable in those people who have always previously been extremely caring and generous in nature.

 

[Pepper]

Good heavens, I never connected my husband's strange behavior to this. He believed every single Nigerian scam, invited one of them to stay with us. I freaked out when I heard that and got mean like never before. It sent chills through me and I did not feel safe after that. I brought him to talk to the pastor about it. I threatened divorce, to protect part of our assets and nothing worked. One day he filled in all the info on a scam site. I rushed down to the bank and closed that account, opening another one. I finally hide all checkbooks. The only thing that saved us was - he does not give credit card number over the phone and does not like to part with his money - not even to get millions. It was only when his mental abilities he does less of it. It drove me crazy especially as I knew the danger involved. Until I read this, I did not realize FTD caused him to believe those scams.

 

[Katie C]

Pepper.. the financials are actually one of the first signs. It's caused by a loss of something called executive function. There is a disconnect between actions and consequences. Add that to disinhibition and emotional flattening and ... well let's say you're not the only one that threatened divorce. And for those of you reading this that haven't dealt with FTD... imagine looking someone in the eye that you've lived with for decades and saying "I can't take this any more, I'm leaving" and getting NO reaction. Not go ahead, please don't, or something in between. Just a flat stare.

Ah the memories... Glen got SOOO angry with me the first time I said no, we weren't taking company x up on their "special vacation offer" to Florida.

 

[Cereus]

And for those of you reading this that haven't dealt with FTD... imagine looking someone in the eye that you've lived with for decades and saying "I can't take this any more, I'm leaving" and getting NO reaction

Oh Katie, I got a similar reaction 3 years ago. He was oblivious. When I asked for some changes, he did absolutely nothing. I decided to stay, mostly because our son wasn't entirely on his own yet. A year and a half later the FTD/ALS diagnosis came and explained the last 5-10 years of insidious changes.

As far as the financial woes, I was lucky that my husband had a retirement that he couldn't touch. But while he was buying an expensive tractor, I was berated for getting new towels.

There is an FTD support forum that has many stories about financial disaster. I feel so bad for all of you who have to deal with ALS/FTD and money too. It's unbelievable.

 

[Marjorie R. Wilcox]

My PALS showns signs of change in his behavior and some hoarding symptoms and the like, but no real financial extravagances... although he is making mail orders for many many movies, music, and books. I don't restrain him, because he has the income to cover it with his Navy pension and SS disability, but I hope he soon has everything there is he might want. I feel right now that as long as the bills are covered first, I won't try to curb these expenditures.... I do want him to have what he wants. There are many changes taking place now with the previously slow progression... and many of them are about his behavior. He is hyper-vigilant in that he frets over his activites for the day. He'll stay up most of the night getting ready.... or will make lists and keep checking the lists.... or he lays things out and changes them all day. I have promoted his being active in the local Elks Lodge and doing office work partime during tax season, but I have to be watching and ready to pull him away from some of these things if they are frustrating him. But then what will he do for fullfillment? Maybe there is just less and less of that as time goes by. There is trouble to come. I see it and hope I have grace to endure! Bless you all.

 

[shelleynshaggy]

Though Jim never made any major purchases he nickeled and dimed what we did have. Once telling me to look at what the store "gave him" ya I realize now gave = credit application. After his diagnosis I found a Walmart credit card that was maxed out that I did not know about. Seems that all the bills never made it past the trash can. I was working 50+ hours a week doing swing shifts and never really put it together until it was to late. A few weeks before diagnosis I had asked him to wait to buy pool supplies until after payday (which was the next day). Something told me to "accidently" take his wallet to work. Sure enough - he calls me telling me he wanted pool supplies and couldn't find his wallet! Long story short - we had to file bankruptcy to take care of most of it (though not all!)

 

[jwife]

Oh, my God! I never realized this was connected to the ALS. I have seen so many of these symptoms in my husband. I have screamed at him, cried and threatened to leave. I get the same blank stare and the lack of understanding about why I am upset. He also seems to think that money automatically appears in the bank account and should just be there the same way it was before this forced us to retire.
Before I read this tonight, I was telling my sister in law that I guess I am just going to have to accept that his childish behaviors are not going to change. I do so desperately miss my mate and feel that now I am more of a caregiver/mother to him. Such an uncomfortable role. Where did my strong guy go to. Now I guess I know. Will have to learn more about FTD and see what else it explains.
Thank you for shedding light on this mystery.
Janis

 

[Katie C]

Janis... you've described to a T what a number of us have faced. Please feel free to private message me any time if you have any questions about where to look for help. I'm so sorry you're facing this. It is really hard to explain to people what it's like when you are so frustrated that you are up in someone's face screaming "That's it.. I'm gone!" and all you get is the "FTD stare".