FTD with ALS - Advice please.

[poppies]

Hi everyone. I have read all the threads on FTD with ALS and also the recommended articles. I strongly suspect that my husband has FTD as well, but do not want to subject him to all the tests that are required to confirm diagnosis. I wondered if those of you who have experience with this could post your advice, refer me to any other articles that you have found helpful and answer some of my questions. Is the confusion that comes with FTD constant or can there be moments of clarity? The reason I ask is that most of the time my husband appears to be disconnected to what is going on around him. He stares blankly out of the window for hours (sometimes six hours straight, more throughout the day). Most of the time he completely ignores me if I speak to him and seldom looks at me or makes eye contact. If he does make eye contact it is a blank stare, like he is not really there (which is really eery). However, there are times when he is "switched on". He will out of the blue make a really pertinent comment e.g. remind me to pick up my mother's telephone bill from the post office or that the outside light needs replacing. Then I think I am imagining things, but within moments he is spaced out again. Yesterday he didn't eat or drink anything the whole day. He said he needed food, but no matter what I offered him he didn't want. He no longer has angry outbursts (which he had for a period of months) but he is very controlling and stares at me with a mean look in his eye sometimes. Maybe this sound insignificant to you, but living like this is extremely stressful, not to mention lonely. I have started grieving again because I feel like I have already lost my husband. Please help me with feedback of any kind that will help me make sense of what is going on. Thank you so much.

 

[poppies]

I should probably mention that the reduction in my hubby's angry outbursts seemed to coincide with his going onto anti-depressants.

 

[affected]

Oh poppies, I am crying for you - your post described so much of Chris completely.

Yes, they have times of incredible clarity that seem so totally strange after the sullen periods that go on for hours or even days. They are a jolt, and seem even more cruel as the person you knew seems to appear again then is gone.

Chris was also very paranoid towards me, constantly accusing me that I just wanted him to die or to become totally bedridden.

It was the same for Chris too. The antidepressants took the awful edge off his shocking outbursts of anger. It resulted in more what you describe - the silent, sullen behaviour. As his speech went completely, he could still say a thousand words with that mean look in his eye and refusal to make eye contact.

I constantly reminded myself, that just like I could see muscles wasting in his body, this was happening in a part of his brain too. This behaviour was not the man I knew, this was a direct result of the disease. This allowed me to never bite back at him, to not get into logical arguments with him, and to treat him always with love and kindness, regardless that it was almost never appreciated or given back to me.

It was the cruellest part of the disease for me. He believed he was perfectly justified in all the behaviour, and did not see that anything was wrong with it. The very few times I attempted to speak with him about his behaviour towards me he would only become very angry and basically say it was too bad and I didn't have to worry as he wouldn't be a burden on me much longer then go on to describe some of the ways he would probably just die on me.

I can only say that it all made me more and more determined all the time to show him constant love, respect and give him all the dignity I could. I have so much comfort in that now he is gone. I do not look back and feel awful about anything or regret my behaviour towards him. I know I gave him excellent care and that I showed him love - love that did not expect anything from him in return.

Was that easy? NO! I despaired, I didn't think I could do it so many days, but my family here and some other carers dealing with the same that I talked to elsewhere allowed me to vent safely and gather myself to keep on going.

Please take my offer of support. You can talk here, or you can PM me if it's difficult to talk about some parts of it all. Still now he is gone I can never talk to anyone else about what the FTD did to him and to me. People remember him as amazing and strong and wonderful, and I feel I would be speaking ill of the dead to try and say what went on. I do not speak ill of my Chris, I speak of the reality of FTD, but only to people who need to know about it. It is real, it is confusing to watch, and it is devastating.

 

[bigmark1954]

I should probably mention that the reduction in my hubby's angry outbursts seemed to coincide with his going onto anti-depressants.

Tillies offer of help may just be the ticket to keeping your sanity. That being said, I feel that it would be very difficult to say if he has FTD without testing.
We suffer the loss of our dignity, isolation and communication. All of these things create our living dynamic. Then anti-depressants & anti-anxiety meds, along with our regimen of other drugs create our existance. The reason I mention this is that we are turned into zombies, and rendered "comfortably numb", and live our existance under this fog.
The meds can create a false FTD scenario.
Sometimes when I look in the mirror, I don't know what is staring back at me...this disease is relentless.....just sayin

 

[MaxEidswick]

>Tillies offer of help may just be the ticket to keeping your sanity

Ditto that!

>Sometimes when I look in the mirror, I don't know what is staring back at me...this disease is relentless.....just sayin

Ah Mark, that is to thoughtful for me to make a nasty crack

 

[bigmark1954]

>Tillies offer of help may just be the ticket to keeping your sanity

Ditto that!

>Sometimes when I look in the mirror, I don't know what is staring back at me...this disease is relentless.....just sayin

Ah Mark, that is to thoughtful for me to make a nasty crack

Max...it ain't cause I am so ugly, I am used to that.....it is more like looking in the mirror when you are really drunk, and wanting to punch it!

 

[GilWest]

Tillies offer of help may just be the ticket to keeping your sanity. That being said, I feel that it would be very difficult to say if he has FTD without testing.
We suffer the loss of our dignity, isolation and communication. All of these things create our living dynamic. Then anti-depressants & anti-anxiety meds, along with our regimen of other drugs create our existance. The reason I mention this is that we are turned into zombies, and rendered "comfortably numb", and live our existance under this fog.
The meds can create a false FTD scenario.
Sometimes when I look in the mirror, I don't know what is staring back at me...this disease is relentless.....just sayin

You are right...i feel that all I do is keep my mom medicated to allow her to tolerate her existence. I have several anti-anxiety and anti-psychotic meds available to use throughout the day. I have no idea where she gets the will to go on...

 

[poppies]

Thanks for you input Tillie. I can relate so well to what you are saying. Mark, I hear you too and I did wonder about the effect of the medication, but I ruled that out because he was on the same anti-depressant before he became ill and it had a fantastic effect on him then. He was happy, motivated and had renewed interest in his job and life as a whole. Now he is completely apathetic and unmotivated. He shows no interest in anyone or anything. I feel desperate for him because he is still partly mobile - he can still walk - and I want him to try to find some enjoyment in life as long as he can. We also have two beautiful daughters who need their Dad to be present. Mark, please know that I don't for a minute discount what he sees when he looks in the mirror and the nightmare that this disease is putting him through. It is my immense love for him that keeps me going and motivates me to want to make his life as happy as I possible can for him. I worry for him, not for me. Max and Mark do you have any ideas on how I can uplift him and encourage him? What works for you?

 

[MaxEidswick]

>Max and Mark do you have any ideas on how I can uplift him and encourage him? What works for you?

question of the year

what anti-depressants? Zoloft works for many, turned me into a zombie ...

Is he able to get on this forum? Maybe start withe the jokes section?

Is he having 'ALS' dreams/daydreams? you know, the ones where you onder what's going next, how to die and when ...

like it or not you should do the ftd tests. better the devil you know than the on you don't!

best of luck dealing with these tough times :-(


Max

 

[Barbie]

maybe he needs to up his anti-depressant? he is going thru so much more now. poor guy. poor family... poor all of us

 

[MaxEidswick]

>poor guy. poor family... poor all of us

Ditto that!

 

[DreamsEnd]

Heartbreaking and please don't think its insignificant that you find those stares painful.

Love & support,
Sherry