Status
Not open for further replies.
In a complete turn-around, my husband had me added to his accounts yesterday and those accounts will at least pay for any medical debt and might even pay off the house. This kind of whiplash is exhausting. But I'm working with my lawyer, too, to protect us, and his father, at least, seems to have started to see what's going on.

He fell today, and he couldn't get the employees outside the store where he fell to understand him. He hit his head pretty good because his hands/wrists can't be used to break his falls anymore. I think this one scared him and I'm hoping he'll get hold of some assistive devices now.

I feel dreadful for him--it must be so awful to have your body betray you and have to rely on others. I keep telling him we're a team and we need to look out for each other, and I know my real husband knows this, but sometimes it gets lost.

Thanks everyone. So much.
 
Wow, that's a great step forward on the financial/legal side of things!

The falls ... oh they are awful. Yep without arm strength they either face plant, or sustain head injuries. We had a terrible one here, well a few terrible ones.

I hope it knocks some sense into him for both your sakes!
 
Hello Deety, I've missed your posts until today, but when I read your first one in this thread, it sounded very familiar. My husband was an accountant, too, with bulbar onset. His ALS is progressing relatively slowly, as are the cognitive issues--but are progressing nonetheless.

The driving issue became very scary (actually for him) when he couldn't process quickly enough to deal with traffic, lights, quick decisions required, especially in an unfamiliar place, and so he quit driving on his own the first day of our extended road trip in June. He blamed it on the AFOs (anke/foot orthotics), but I was there in his moment of panic and saw what was going on. (I'm good with blaming it on the AFOs, though!)

Tillie, Dave & Jen have already given great advice, so I just mention the driving because you said he wants to go to a sporting event out of town. Can you talk to one of the friends and let them know, confidentially, that it would be best if one of them could pick your husband up and do the driving? Driving, especially in unfamiliar areas, can be really dangerous to our PALS and everyone else on the road around them. There are other threads that discuss the problems that can occur if an accident happens after a neuromuscular degenerative diagnosis as far as legal and financial challenges. I don't mean to burden you further, and my heart really goes out to you in your situation. Just want to keep everyone safe and you financially protected. A confidential email to his health provider in some states will allow them to flag the DMV which will require a driving test, and that might not be a bad thing. There's no arguing if it's DMV that takes the license away. Just a thought.

And I'm still struggling with getting the POA. My PALS was a CFO, so letting that go is, I think, giving up a big part of his identity. So I have to follow up on everything constantly. He had made a simple transfer of funds, but they never came through, and that's when I realized he was struggling with simple things he'd always done. But he's losing his ability to sign his name, so he won't be balking at the POA for long. I'm just biding my time and changing passwords to keep everything safe, including his ego.

I'm so glad your father-in-law is on board and giving you some help. You need a support team. This forum is great for that as we travel this journey together, but now you have some hands-on help as well. The best to you.
 
I think it's important to understand that the POA should be done early. Doing a POA does not mean that you take control at that moment. It means you have everything in place ready.

I hold the POA for my brother. But he makes all his decisions and runs his life, not me. If he were to become unable to do this at some point, he knows I am ready to step up.

So please get that really clear - you are simply making a plan for later, something you can tick off the list now and be ready.

I never enacted the POA for Chris. Even with FTD I let him make all decisions to the end, and was able to sign some hospital things simply as his wife on his behalf because he could not use his hands, but he would make the decision and say he agreed then I would sign.
That one may be different in Australia, but I wasn't signing because I was making his decisions is the main point.
 
Update: His doctors actually called me on Thursday to talk about signs they had noticed at his last clinic visit. We are doing a battery of tests tomorrow--so relieved! Thanks for the info about driving and the POA--I've brought that up to the nurse and she said the docs would address that. It was a pretty rough weekend with his mates at the football game. I didn't go and they hadn't seen him since he was first diagnosed, so they were quite shocked and they pointed out to me all kinds of problems he seemed to have. At least other people besides me are seeing these things.
 
Deety, not sure how the docs factor into driving and the POA, but certainly both should be at the top of your list. And for others, I want to echo Tillie's comment that POAs are anticipatory at best, reactive at worst. I have signed health care and financial POAs and I am far (hopefully) from the end.

Driving has come up with several people I know lately, and while it is tempting to say, "it's their life," as we say about many poor decisions, in this case, it's not only theirs. I have had >20y of pain from being T-boned by someone who shouldn't have been on the road. I was told unequivocally that if my son had been in the car with me, he'd be dead. The list of people I know who have been killed by unfit drivers (some while driving, others while walking) is too long for me to remember. The DMV is one strategy, but some people aren't going to care/remember about fine points like being licensed.

If someone you love shouldn't be driving, please don't let them.
 
Yes, the driving is a huge issue because it isn't just about their own safety.

Despite the fact you could lose everything if someone was injured or killed, how shocking would it be to not only deal with ALS but with knowing some other family were now suffering the devastation of a loss.

Chris always hated me when his GP told him to hand his licence in (because I didn't stick up for him and told him that we now had a medical certificate of incompetence to drive). I let him make every other bad decision, but the driving was the one that someone just had to make for him. I was not going to make him hand his licence in, but once that doctor signed that form, if he had not, I was going to keep all car keys hidden up high where he could not reach them (he could not lift his arms even as high as his shoulders by then).

I'm so glad the doctors are realising about the FTD. I presume that is what the tests are about? This will help you to cope with moving forward on caring for him if you have that recognised.
 
Good points! My mantra thus far has been that every decision he makes affects me and his family as well, and the driving affects or could affect so many others and in truly horrible ways. Yes, the doctors wanted to have him tested specifically for FTD. They noticed things at his last appointment that suggested the need.

I had to lie to him yesterday and today, telling him that his nurse called to ask if he could come back in and finish up with the doctor who, luckily, had had to leave at his last appointment. He's suspicious but his dad is going to drop by to "fix the refrigerator" and then take him to lunch, just to make certain he comes. We live about 30 minutes from the Clinic and his parents. I work right next to the clinic. I feel like I'm betraying him in so many ways.
 
Deety I felt that way too when I would email doctors before appointments so that they could be the ones to bring up subjects with him. He was so paranoid I couldn't start conversations on hard topics but a doctor could simply start asking him about different things.

Be prepared once tested he may realise you got him there this way and rage at you - FTD doesn't make them stupid even if their executive functions are impaired. That's just going to have to be. Keep it simple, don't try to explain anything in detail as when they can't follow something complex the rage burns in them.

Let us know how it all goes, I'm really thinking of you
 
Hi Tilly and Dave and everyone! I hope you had a good break.

My lovely husband had testing done on Christmas Eve and, as I suspected, he has bvFTD. Actually, we only got about an hour into the 4 hours of testing before his neuro and psych called it off, saying that things were clear. They said it's "mild" and they don't know if it will progress. They asked him outright if he noticed the changes that I had noticed, and he said "no" and that the situation was not as "dire" as I was making it out to be. He neuro spoke to me alone after that, describing some of the behaviors that are typical and how I might address them. He has some swallowing studies coming up to see if his choking is physical or behavioral, and then we'll have quite frequent meetings with his psych doc as well.

One surprise: he voluntarily gave up his car the morning before the testing. It's at his dad's house now. But a couple times each day he tells me he's getting his car back. And this morning when I dropped him off at his dad's house, he headed straight for his car and then saw me watching and went inside. His dad is going to sell it ASAP. The neuro suggested that the driving issues I had noticed might not all be physical--that FTD affects visual/spatial reasoning as well.

His dad and I are on the same page now but this is going to be rough. He's not the man I married, and I get so angry at him sometimes (OK, often) for doing things that are just not like him and seem so uncaring and even duplicitous. The neighbor came over to help us with snow removal last night and I suggested we go out and help. My husband said to just the guy do it. Before, my husband would have been out there shoveling everybody's driveway just because he's a nice guy.

VERY glad to be back at work today.
 
I'm so glad you have that diagnosis and can know that this is not your man, this is a disease process! And if it helps his father to be on the same page with you even better.

I hope his father would refuse to hand the keys over now he knows this...
 
Thankfully his dad will have the car sold as soon as possible. We both feel torn because we're colluding against my husband/his son, but we both see it's necessary.
 
Oh Deety I know what you mean. I hated having to do so much without being able to truly include Chris as he didn't want to know or wanted to be unsafe.

I let him make as many decisions as possible though on his own personal choices regardless of whether I felt they were poor decisions.
 
Hi Deety, I know exactly what you are going through and it is so hard. I feel like the bad one each day. I am told I worry to much, see things that are not happening and we grow further apart each day. We will have good moments and I do my best to remember those. I do get time away and work each day right now and that helps. Sometimes he even makes me wonder if I am wrong and should be like him and ignore it all.
 
If only we could just ignore it and it would not be true ...
 
Status
Not open for further replies.
Back
Top