Old 10-22-2014, 11:42 PM #31 (permalink)
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Default Re: FTD With ALS Advice

Thank you Both for your advice. I contacted the Social Worker today at the ALS Clinic where my husband is seen. And, I told her EVERYTHING that has been going on over the last couple of months, including driving issue. I am hoping something will be done...don't know how much more of this I can take. It just gets crazier and crazier every day. Thank you all for support.
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Old 10-22-2014, 11:46 PM #32 (permalink)
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Max and Nikki...praying for you both tonight.
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Old 10-23-2014, 02:22 AM #33 (permalink)
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>Max and Nikki...praying for you both tonight

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Old 10-23-2014, 10:09 PM #34 (permalink)
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Default Re: FTD With ALS Advice

Regarding the driving issue. Here's the strategy I used. One day I took the keys just as we were headed to the store and asked him to ride in the passenger seat. He wasn't happy but did it. As we drove there I explained that our insurance agent said any diagnosis of neurological impairment means that if there is an accident, they won't cover him if he is sued. I told him that we would lose everything, car house, etc.
I only gave him a few minutes to digest it and then said I'm happy to drive but I need him to help me. His new job was navigator and speed limit sign watcher. He was almost relieved, like he had been trying to keep functioning at levels he was finding difficult. However, having him yell at me for 2 over the speed limit got old fast!

I also had to have his pilot's license pulled, It was his life. It is horrible.

This isn't easy for anyone but it's not negotiable. Do it now. Get it over with. Save a life.

Good luck!
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Old 10-24-2014, 09:12 AM #35 (permalink)
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Default Re: FTD With ALS Advice

On Wednesday the EMG confirmed ALS. My husband's neurologist told him of what he is suffering and a little about it (my husband thought he had ebola). The doc also told him no more driving. It's been tough going since then and we are both so sad and grieving.

Cereus, did kim ever contact you with my contact (email and phone) info? I'd love to meet up with you here in Tucson.

I appreciate everyone's comments and support! Thank you for taking the time to write.
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Old 10-24-2014, 09:43 AM #36 (permalink)
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Default Re: FTD With ALS Advice

Quote:
Originally Posted by 3Grandboys View Post
On Wednesday the EMG confirmed ALS. My husband's neurologist told him of what he is suffering and a little about it (my husband thought he had ebola). The doc also told him no more driving. It's been tough going since then and we are both so sad and grieving.

Cereus, did kim ever contact you with my contact (email and phone) info? I'd love to meet up with you here in Tucson.

I appreciate everyone's comments and support! Thank you for taking the time to write.
[ The doc also told him no more driving ]

i feel for him, the same here. my dr's ask if i was still trying to drive. i told the no i can't turn the wheel. i did move my truck out of the way some time back. had to use my lags to turn it. now i don't think i can do that.
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Old 10-24-2014, 03:38 PM #37 (permalink)
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Default Re: FTD With ALS Advice

Cereus, you did that so well!

My Chris would not listen to any reason for months about driving.

He did not care that no insurance would cover him and we could lose everything, he did not believe he would be involved in an accident because he was careful. So many health professionals tried so many ways of explaining the risks, but his total lack of empathy was obvious no matter what was said. If I said anything he would say - I want you to trust my judgement, I will know when I can't drive anymore.

I have to add here that I am 20 km away from town and at the time the road was a 100km speed limit (it's now down to 80), country roads with soft edges, not very wide, winding and lots of trucks on the road. To imagine someone who can barely use their hands, the hands are clawed and is unsteady on their feet hurtling along at 100km and able to react to something going wrong on the road ... no matter how careful, we all know that the art of driving is coping with what other idiots on the road may do!

We had a GP appointment and had decided to ask her to do the forms for a disabled parking permit as he was having so much trouble walking far. He was keen to have this. When we asked her for it she agreed immediately, then suddenly said - but you are not driving are you? The look of thunder on his face and I thought oh no, he we go again and I just kind of went quiet. She did some strength and reflex tests on him and began to beg him to hand in his licence. He was angry and kept stating he was fine. She filled out the forms and gave them to us and again begged him to stop driving.

I didn't look at the forms for a couple of days as he was so angry after the appointment. When I did I was shocked to find the form included a medical certificate of competency to drive and she had filled it out stating he was not medically fit. I showed it to him and he shrugged and said well then we won't get the permit for parking. I had no idea the form for parking included this certificate.

I finally had to say to him - we have now had a doctor sign a medical certificate stating you are not medically fit to drive. You have put me in a position now that means if I just watch you drive off and you do have an accident and someone is injured or killed then I will always be liable because I ignored this certificate. It wasn't just that I felt I was now legally liable, it was that I felt I was personally liable. I told him that I did not know that I could live with knowing that I had caused another's injury or death, as much as he had caused it.

He was furious with me. I got all the rants of FTD - that I just wanted him to be a vegetable sitting in a corner, I couldn't wait til he was totally useless, that I wanted to make sure all his muscles wasted away, that I see him as being f**ked already and he may was well be dead. Finally after a long torrent he said he would not drive and we would hand in his licence and get the disabled parking permit that was part of the paperwork.

He never forgave me, and always saw it that I had done this to him. He loved to tell people that I had finally managed to take his licence from him. Well he didn't tell the story, he would just state that I had done it.

At least he wasn't driving anymore and I didn't have to fear the worst. I totally understood that losing the ability to drive is so huge, I can't imagine it for myself. But I can't explain the total lack of empathy he had towards cause and effect. One also has to know what the person was like before FTD, the amount of empathy they felt, the amount of responsibility they took for themselves and others. This is a real key to knowing that this is not a normal behaviour and attitude for the person.


Libby how are you doing?

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Old 10-26-2014, 10:32 AM #38 (permalink)
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Default Re: FTD With ALS Advice

Things driving me crazy: so much to organize - financial, medical, home repairs, appointments, my work stuff, my own medical stuff, etc etc.
how in the world did you all manage everything? I cannot count on him at all; the FTD and ALS impacts every facet of our life together!

More thing driving me crazy: all the extra chores that i must do. My husband following me around the house asking what I am doing. My husband yelling in the car because i did not take the route he suggested. My husband constantly interrupting me to come look at something on TV or come look at something outside.

Thanks for listening!
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Old 10-26-2014, 03:34 PM #39 (permalink)
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I have no idea how I did, and that's honest. I felt like I was pushing through a fog constantly.

Chris would go very sullen before we would have to go out, and make it very difficult to get ready, but no nothing was wrong ... Once in the car and I'm driving along he would start to explode about whatever it was (I'd chosen the wrong shirt, had let him sleep too long, had got him ready too early ... whatever I corrected next time would be wrong so the actual issue wasn't important). He would start to rant, and already his speech was very difficult to understand and once he got emotional it would become nearly impossible to understand.

I would let him go on a bit and explain (yet again) that I had no chance of understanding him if I was to watch the road drive. He would just keep going on, I would just patiently after a pause explain again that I had no way to understand him. It was that frazzling feeling of trying to drive with kids fighting in the back seat.

Usually this would then mean he would be furious by the time we arrived at an appointment, but as soon as we would get in a room with a health professional and shut the door he was 'mr positive' and everything was good...

That kind of behaviour was the stuff that really wore me out. I could do all his personal care with one hand tied behind my back. But the emotional stress was exhausting and kept me in that fog.
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Old 10-26-2014, 05:25 PM #40 (permalink)
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Default Re: FTD With ALS Advice

3grandboys, welcome to the world of CALS! We have to be a little bit Superwoman, and a little bit saintly to do it all without complaints or feeling overwhelmed! ( nope, haven't achieved the saint part, but I'm trying!)
My husband also tells me what route to take when I drive, and interrupts what I'm doing. Think it comes with the territory of not having much control over one's life, so if it seems "controlling". I usually grin and bear it. Our lot in life is still easier than what they are going through! And no, I don't always feel that way. Like everyone else, I whine and need to rant. We are a sisterhood, so you are in good company!
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Old 10-26-2014, 07:32 PM #41 (permalink)
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Default Re: FTD With ALS Advice

Oh yes, even without FTD (please God, that is now my biggest fear) I'm sooooo looking forward to being the full time driver. Hubby always drove because he gets motion sickness otherwise. Frankly, I think it's a control thing, but I was happy to let him. The only notable exceptions were going home from one of his many surgeries, drugged up, complaining about the route I chose. My response was less than saintly. Oh yes, I'm really really looking forward to this.. I'm afraid that some lifelong behaviors don't earn a pass, especially when I'm behind the wheel! That's my position this hour of this day, anyway....
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Old 10-26-2014, 09:15 PM #42 (permalink)
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Tillie, it is heartwarming to see your posts here and know that you are still such a huge help.
I can only reiterate that dealing with this is hugely difficult in some circumstances and when all is said and done none of us wants our memories to be of angry answers to things said by our PAL. It will happen, we are all human and this disease stretches the caregivers to the extreme but somehow you have to be above it and be like a duck and let it roll off your back. I counted to ten before I responded, sometimes I didn't respond and sometimes I gave it back as good as I got. I am human, I was not born a caregiver, but I tried my best. If you come to this forum, you too are trying your best - you are not alone
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Old 10-27-2014, 12:51 AM #43 (permalink)
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I just happened to stumble upon this forum and this thread. I, too, have been dealing with a HB WITH FTD/MND. My HB was diagnosed with FTD a year and a half ago at the age of 49 and then with ALS six months ago. I can honestly say that at this point, the ftd has been much more difficult than the ALS. I would be more than happy to talk or answer any questions that anyone may have. And I would love to learn some ideas from you all, as well. The suggestion someone had to join ftdsupportforum.com was a very good one as there is a wealth of information and support on that site.

Re: the driving issue, I suggest speaking to the doctor. My HB had his DL revoked about a year ago. Even though he passed the driving eval, it was obvious to the instructor he had something wrong with him and I knew it would just be a matter of time before something bad happened. I knew that even though he passed, we'd never get him back in for another eval. I called the dr before his follow up appt and we were on the same page. THe doctor made him sign something for the DMV stating he could no longer drive. He didn't know I had a hand in it, but was very angry with the doctor and I was ok with that.
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Old 10-27-2014, 05:06 AM #44 (permalink)
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Default Re: FTD With ALS Advice

Welcome goldie, though I'm so sorry you are in this situation!

If you feel you can talk about, I would be interested to know a little of how your husbands FTD displays itself. It is worse than the ALS itself, but both together are tough indeed.

Nuts I believe that usually FTD presents itself either before the ALS starts or within a short time, rather than coming on later. I haven't heard of it coming on later anyway. Try not to worry too much about it, just concentrate on what you are dealing with that you know - god knows that's hard enough!

PatGayle, lovely to see you drop in! I know that now Chris is gone, I have much comfort from knowing that I was able to let it wash over me, at least on the outside, and don't have memories of getting into fights and arguments with someone who did not have the ability to follow executive thinking through. I think that would torment me now. I just knew that it was the disease, and that regardless of it all, it was going to take him from me completely. So I sucked it up and tried to just love him, even when his paranoia made him react constantly as though I was trying to do otherwise.
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Old 10-27-2014, 08:25 AM #45 (permalink)
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Default Re: FTD With ALS Advice

THANK you all. You are a light in the darkness of this dual disease! I am reading (rather than sleeping) What if it's not alzheimers? A caregiver's guide to dementia, 3rd edition from oct 7, 2014 on amazon which is 'the only comprehensive guide dealing with FTD." There is LOTS in here about FTD-ALS. written by gary Radin, Lisa Radin, and Murray Grossman, M.D. with info from experts around the country. I am also reading everything on the ALS website. It helps to know what I might be dealing with. Already I see progression with the ALS symptoms. Yesterday my husband told me he can no longer fasten his jeans, so we went to costco to try pull on sports pants. As of yesterday he can no longer make us cappuccino on the machine, so now something else for me to do….on and on….exhausting and just SO SAD!
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