FTD or just difficulty processing directions/information

Status
Not open for further replies.

Deety

Member
Joined
Dec 9, 2015
Messages
27
Reason
CALS
Diagnosis
08/2015
Country
US
State
IA
My husband was diagnosed with bulbar onset ALS in August (so we've lived with it for 5 months or so now) and his symptoms have progressed. But what has surprised me the most--and has been the most difficult thing to come to terms with or manage--has been the change in how he processes information. It has hit home in a big way recently. Our vacation was plagued with the usual physical issues of ALS, but my husband seemed unable to think through things clearly in the new setting. For example, to turn on washing machine in the house we stayed at, he had to flip the circuit breaker and then flip the levers to turn the water on. There was even a picture of what to do. He had no idea how to do it. The one subway transfer we had was incomprehensible to him. He couldn't follow the blazes on the trail. He couldn't follow the recipe (that only had three steps). When we got home, he couldn't explain why he thought that we should turn the furnace temperature down to warm up the house. No one would notice these things, I think, mainly because his conversation is limited to football or what his kids are doing when he's around others. And then, because speaking is difficult and he's difficult to understand, I think most people think he's just keeping things simple. He was an accountant! This kind of stuff is not like him at all! He's also refusing to make plans for when he loses speech or for when the disease progresses in other ways. "Refuses" might be too strong a word--he just doesn't do it. And I'm scared because he might make financial decisions that will seriously impact those of us left behind. Is this typical of FTD? How can I broach this with him without him or his parents or others getting angry?
 

Dave Kerwood

Senior member
Joined
Nov 29, 2015
Messages
716
Reason
Lost a loved one
Diagnosis
12/2014
Country
UK
State
South Yorkshire
Hi Deety.

Now you are treading on my territory as I can absolutely understand what it is you are gong through.

My wife (Julie) has both FTD & MND (ALS).

I struggled for at least 8 years as the FTD although unknown / undiagnosed then December 2014 we got the diagnosis, FTD (I were expecting) & MND-ALS (I did not expect).

Your husbands thinking, as you have written it is based on the FTD element and not the MND side.

I am trying to keep my message to you short right now as I can go on and on and on (sorry)

All I can say is... You need to take control right now, of everything, home, finances, banks... The lot.

I waited too late before I could get a POA, when I decided to go for it it was too late, I left it too late because I were in denial, I did not want to admit that my wife was incapable of making a rational decision.

OK... It is about you and your hubby, not me.

Here I am, I have a wife, been married for 28 years, but my wife has the decision making of a 4 year old. I do not mean to be disrespectful, I am saying it as it is.

Julie is totally dependant on me, cannot survive if I am away from her... Is this the same for you Deety?
 

Deety

Member
Joined
Dec 9, 2015
Messages
27
Reason
CALS
Diagnosis
08/2015
Country
US
State
IA
Hi Dave! So glad to hear from you! I really appreciate your advice! Other people would say that it's not to the point where my husband can't make decisions yet, but his avoidance of making decisions sure makes it seem like there's something serious going on. His family think I'm kind of crazy. I even decided to get a lawyer to protect myself and just met with him on Friday. Because of the divorce decree, all life insurance goes to his ex-wife who is raising his three kids. Same with death benefits. I'll be left with nothing except medical debt if we don't start planning now, and he refuses to plan. In fact, he insists he will beat ALS, and I really really hope he will! I just found him! I want to spend decades with him, damn it! After our trip, I had decided not to go on any more vacations because it was so exhausting trying to look after him, but he has a sporting event that all his old college friends want him to go to later this month, and I don't think he would get there without my help. He just went to his clinic visit without me (because he didn't want me to say anything about his "brain fog" because he's worried that will stop him from driving) and he didn't bring up any of the issues we had talked about--his hands, his swallowing, his breathing. I feel like I'm talking to a rebellious 14 year old. The physical aspects of ALS are much less difficult to handle at this point.
 

Dave Kerwood

Senior member
Joined
Nov 29, 2015
Messages
716
Reason
Lost a loved one
Diagnosis
12/2014
Country
UK
State
South Yorkshire
OK.. Brain fog... No such thing... MND-ALS has no cure. Dementia (FTD) - No cure also. Both are terminal diseases. Your husband will die most probably from a breathing difficulty through the MND-ALS. Sorry, this is a fact, there is no other way to say this. I really am sorry.

Dementia (FTD) coupled with MND is the pits, it really is. Suffering or caring for MND is the worst nightmare but add in Dementia (FTD) makes it all the worst.

MND (ALS) is dilapidating, when dementia is mixed in then it becomes totally... totally... There is no word for this other than a nightmare.

The Dementia (MND) will always rule, be ahead of the MND.

MND takes the back seat with regards to the cognitive understanding, reasoning, decision making side of things. The Dementia (FTD) will be dominant leaving us, carers, in a land of limbo, looking at our loved ones as if they were a child. It is hard, very hard as we, carers, try to look after our loved ones and spend many many hours not understanding what it is that these loved ones are trying to accomplish.

Our loved ones are no longer to make a rational decision, reply to a question, remember what was just said to them, loose all empathy & apathy... They basically become a small child wanting to know what is going on in the world as they have no clue.

The only good side of MND-ALS + FTD is that they are completely unaware of what they are have or are going though, like Julie (my wife) she has absolutely no idea that she has these illnesses. She really does not know and this must be the plus side to what we are going through right now.

My wife has absolutely no clue that she is ill and that she will die from her illnesses within the next year or two... I know, but I cannot say anything, which is the hardest part, we cannot plan for what is going to happen.

I am really sorry if I have gone overboard, I just want you to know that MND-ALS with FTD is the shittiest thing that anyone can go through, the carer suffers the most as the sufferer is completely unaware by 100%
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,846
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
I am very sorry. Agree you are going to have to take steps to get control. It is going to be hard but sooner the better. Also suggest emailing the clinic your concerns. It is one thing to respect his wishes but if he is not competent then you may have to do what is best not what he wants

It may be impossible without his cooperation but thinking it might be worth seeing his lawyer about revisiting the divorce decree. If it was made thinking he would be a healthy earner for many years things have changed. Also he should be receiving SSDI very soon? If so his minor children are entitled to benefits if they are his dependents. And if he dies while they are still underage they will continue until 18 or 19 to get benefits So they may get money that was unexpected.
And a question we always ask. Is he a vet? That opens up many benefits
 

Dave Kerwood

Senior member
Joined
Nov 29, 2015
Messages
716
Reason
Lost a loved one
Diagnosis
12/2014
Country
UK
State
South Yorkshire
Sorry. I did not offer any advice, just said it as it was with MND-ALS + FTD as I am living it right now.
 

Deety

Member
Joined
Dec 9, 2015
Messages
27
Reason
CALS
Diagnosis
08/2015
Country
US
State
IA
Thanks so much, Dave and Nikki. No, he's not a vet. Everything you have said is what I have been thinking and I've felt so guilty for thinking it! He just started getting SSDI and so I know his kids will get that plus the insurance monies. I know they are provided for, but he is focusing on them to the exclusion of me. And because we have been married such a short time, his ex-wife thinks she deserves more because she lived with him longer and my lawyer said to expect her to sue me for some of our estate when he dies. Good Lord. My parents, who live in Australia (I'm in the US) are so worried because there isn't really anyone on my side over here. I think you're both right--I have to make plans now and that might include things that he does not want.

I hate this disease.
 

Dave Kerwood

Senior member
Joined
Nov 29, 2015
Messages
716
Reason
Lost a loved one
Diagnosis
12/2014
Country
UK
State
South Yorkshire
Deety...

One thing I have realised is that some of the family will bury there head in the sand when a diagnosis is made, no help whatsoever during the struggle but will fight for everything that they can get their hands on after the fact.

I would give everything up just to have my wife back.
 

Deety

Member
Joined
Dec 9, 2015
Messages
27
Reason
CALS
Diagnosis
08/2015
Country
US
State
IA
I've uttered that phrase many, many times--I'd give up everything to have him back.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,951
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
Oh Deety, I can so relate to everything you have written.

My husband was bulbar onset ALS and had FTD.

The first thing I would say is that this combination is often very rapid progression so you do need to get all legals in order fast.

Talk the POA from the view that it's good to have it in place 'just in case'. That way it's there, even if you are not going to start using it just now.

Yes, the denial of their disease is a part of the FTD and it is different to the natural denial of trying to come to terms with this diagnosis. I was in total denial for the 6 months we were trying to find a diagnosis, even once we knew it was something very serious I was sure that some odd fixable thing was going to be found and we would just be fine.

I was also a new marriage, my Chris died a couple of weeks before our 3rd wedding anniversary. The FTD started appearing just before our 1st anniversary but at the time I wasn't sure anything was happening. It was more hindsight that allowed me to see how he had been changing a long time before the physical ALS started to appear.

They truly do not know they have changed - arguing either with them, or in front of health professionals will only increase their rage and paranoia towards you.

Please keep talking here, there is a lot of support we can give - Dave is living it now, and I've lived it, and Nikki has lived it in her family too.
 

Dave Kerwood

Senior member
Joined
Nov 29, 2015
Messages
716
Reason
Lost a loved one
Diagnosis
12/2014
Country
UK
State
South Yorkshire
They truly do not know they have changed - arguing either with them, or in front of health professionals will only increase their rage and paranoia towards you.
I can second this completely as my Julie, Deety, is not pretending, she simply does not know that there is anything wrong with her. It rips my heart out knowing this but on the flip side it is the best possible outcome for Julie as she has absolutely nothing to worry about.

I tell the health professionals, other than Julies Neurology Consultant not to refer to Julie's MND or FTD in front of her, instead refer to Julie's conditions as a 'small memory issue'... Julie will simply not understand the truth whatsoever and when I stopped, in the early days, referring to or trying to tell Julie that she has serious health issues things got better as all I were doing was upsetting the both of us as Julie was not in denial of what she has as Julie does not have any problems and it is all in my head.

I have never mentioned, in front of Julie anything to do with the word 'terminal' this would be so devastating for her, besides 5 minutes later she would have forgotten about the conversation, and who wants to be reminded that they are going to die time and time again, like, being told this devastating news for the FIRST time over and over again, I know I wouldn't.

Being a carer of MND (ALS) + FTD is very lonely as a carer if you do not have support from family and/or friends, unfortunately and unless you have a very close family, they run away and hide, I know as this is what has happened to us, carers like us do not have this privilege.

My wife will succumb to her illnesses, more than likely the MND side will be the way she goes but at least I have the knowledge that Julie knew absolutely nothing about it and will not suffer in anyway, physically and mentally.

Please forgive me if this is too much information but I am just saying it as I see it and what will eventually be the truth. MND (ALS) coupled with MND is so rampant, it is like a runaway train, there is no slowing it down once it gets started and there are no brakes, therefore, I try to make my Julie as happy as I can and whatever she want's I make sure she gets no matter how stupid, daft, inconvenient it maybe.

I can re-start my life in a year or two. I do not know what it is to loose a wife, a first for me, nor do I know what I will feel, how I will cope after the fact and try not to think about this as things change on a day by day basis here as it is right now, so, how can I know what it will be like when this is all finished. I can only be guided by folk here that have already started on this path.

I will shut up now as I do sort of go on and on at times (most of the time really)

Dave x
 

Deety

Member
Joined
Dec 9, 2015
Messages
27
Reason
CALS
Diagnosis
08/2015
Country
US
State
IA
Thanks so much, Tillie, Dave, and Nikki. I thought I was going crazy or just being mean. I'm angry enough at times--not at my husband but at the universe, and so my husband gets some of it--that I've really wondered who I am some days and what I'm becoming. Hearing from you all really, really helps, and I'm heartbroken that you have had to go through what you've had to go through.

Mike had his clinic visit yesterday (which I was not invited to) and his nurse and doctor both told him that "ALS always wins" and that he needed to think about end of life issues, POA, among other things. I think it's the first time he's had that said to him and the first time he's had to really face it. But his nurse also told him that he will live for years. I'm wondering if she might not have said "you COULD live for years." His doctor told him 3-5 years but from everything I've read, it seems like it's going to be quite a bit shorter. I know every case is different. . .

I'm going to write to his nurse today about these odd processing problems that he seems to be having. Even if they don't do anything, at least it will be on record that I'm noticing something.

Sending good thoughts to all of you today, for what it's worth. Just know that you're appreciated and somebody out there wants good things for you. Thank you so much.
 

Dave Kerwood

Senior member
Joined
Nov 29, 2015
Messages
716
Reason
Lost a loved one
Diagnosis
12/2014
Country
UK
State
South Yorkshire
Hi Deety...

If your husband has or you suspect FTD then ALWAYS be there for every appointment, in the room, tell them that you are his carer, no POA is required for this.

Julie told me for nearly a year (2 years ago) that she had seen the doctor and there was nothing wrong with her... I stupidly believed this, I later found out that Julie went shopping and had not seen the doctor at all for that year prior to me making an appointment for Julie and I with regards to Julie's behaviour. I literally had to drag Julie into the surgery (well not drag, but I REALLY insisted that I sit in).

I gave my account of what I saw, the doctor listened, Julie screeched the surgery down, completely in denial and the doctor referred us to the Memory Services.

13 months later Julie was diagnosed with MND (ALS) + FTD...

We are coming up on our first diagnosis anniversary in a few days (23 Dec 2014)...

To be honest I did not think that Julie would make it to this Christmas, but she has.... Now I am worried that she will not make it to next Christmas as she has declined so fast, especially over the past 3 months... You alway have to thinks 2 or 3 months in advance...

Morel of this story is... If your loved one has FTD + MND (ALS) then what they say to you with regards to their illnesses (or not) will never be told to you as they were told by their visit to their Doctor / Hospital etc...

Food for thought...
 
Last edited:

Dave Kerwood

Senior member
Joined
Nov 29, 2015
Messages
716
Reason
Lost a loved one
Diagnosis
12/2014
Country
UK
State
South Yorkshire
P.S...

it is Ok to get angry... I am sure we (carers) have especially in the lead up to a diagnosis then shortly afterwards when we realise that there is something wrong...

We, carers, need time to adjust, I know I did and if the truth be known I bet there is not a carer out there that has not lost it with their loved one.

It takes time to adjust... You realise that you are flogging a dead horse if you argue... It is easier to say "Yes" or to simply reply with the same answer you have said 50 times that day to the same question that you have been asked for the 50th time that day than to fly off the handle which in turn starts the loved one getting more confused, angry & upset causing the carers life to become hell...

Truthfully... I am a better person now, better than I were ever before, I have learnt, patience, understanding, compassion & forgiveness over the past 12 months.

If I have to answer the same question over and over again for hours on end then I simply do that, it is not their fault as they believe that it is the fist time that they have asked the question...

Sorry... End of lecture.... HAHAHA

(That was a very long P.S A!)
 

Deety

Member
Joined
Dec 9, 2015
Messages
27
Reason
CALS
Diagnosis
08/2015
Country
US
State
IA
I really appreciate your "lecture," Dave. It helps so much to know that others have experienced similar feelings and doubts etc etc. Without my mum here to give me a reality check, I doubt my own observations fairly often. But I think I'm going to err on the side of caution in this instance. I've been reading more and more since yesterday. Wow. This all makes you grow up fast, doesn't it.
 
Status
Not open for further replies.
Top