Choleric and erratic behaviour

[Constant]

Hi everybody,

I'm french, and it's my first message here, but I have been lurking the forums for weeks, as they are very useful, providing a lot of good advices and testimonies. The few forums devoted to ALS in France are not so helpful, gathering only few people.

My dad (57) has been diagnosed three years ago (bulbar ALS), and it is getting very rough now, for him and for my mother and me. Indeed, it becomes very hard to deal with my father, who becomes more and more upset for nothing, especially against my mother, who nonetheless supports and accompanies him with love and strength. It is as he is turning paranoid, being persuaded that she doesn't respect him...That's of course false, but it seems he doesn't care about rational discourses.

The smallest event of the daily-life becomes an opportunity for him to turn choleric, and it implies sometimes violent gestures (as chasing my mother with a stick to hit her -several times, hitting the table when we eat, screaming, threatful gazes, strange laughings...), even he is on antidepressants. Even he was not diagnosed with a FTD, he acts in such a mad way that I doubt he is still always lucid. When he is not hot-tempered, he asks more and more for a medical end, which is possible in Belgium where he is also nursed ; he has already expressed his refusal to be helped by tracheotomy and gastrostomy.

I understand very well his fears, his suffering towards ALS, but he is making our common life unbearable, made of psychological weariness. My mother is quite isolated, she only got little help from our small family; I fear she is at the end of her possibilities, very frustrated and exhausted ; as she suffered from a tumor 10 years ago, her own health is fragile...We are followed by a psychologist, one time a month we go to a physician who uses ericksonian hypnosis to try relax my father, but I have the felling that all these things have no effects on him. When he see them, he is quiet, he seems to be aware of our complaints and remarks concerning his behaviour, but as he leaves their offices, and we are alone, the madness comes back.

As he has huge difficulties to clean himself because of the declining of his muscular abilities, we made him today the proposal to employ a nurse, but he refused...

Do some of you already live this kind of situations, when the sadness of seeing a loved person suffering from ALS is redoubled by its daily choleric behaviour ? How to cope with such a behaviour, without turning yourself mad, giving up, facing how the person is unmanageable ? Considering its current state, I am afraid it will escalate...

I apologize for the possible language mistakes.

 

[Barbie]

Yes, it sounds like you also face the same difficulties we do. I don't have any advice for you--it sounds like you and your family are all doing the right things. perhaps if you remind your self that this is not forever and that his time is short it will make it easier on you to deal with his erratic behavior. please watch out for you mother, she is likely to bear the brunt of his anger. I suggest that you hire that nurse no matter what he says.

All my best

 

[ottawa girl]

Constant,

Je suppose que votre père ne s'est pas comporté de cette manière avant sa maladie?

Je crois que votre père souffre de FTD. S'il continue à être agressif, il est essentiel que vous contactiez son neurologue dès que possible. Sinon, votre mère ou quelqu'un d'autre pourrait être sérieusement blessé. Peu importe s'il est frustré par la maladie, simplement fâché contre le monde ou qu'il souffre de FTD, votre famille ne devrait pas devoir vivre dans ces circonstances stressantes, penibles et dangereuses.

La décision pour engager un préposé ou l'infirmière, à mon avis, n'est pas à lui à faire. Si vous ne pouvez pas engager une personne convenablement qualifiée pour avoir affaire avec votre père, je vous soumets, avec respect, que votre père soit installe dans une maison de repos. Votre famille peut lui rendre visite chaque jour et chacun sécure.

Je suis très triste pour vous et votre entière famille. Je vous souhaite la paix et bon courage.

 

[affected]

oh Constant, I can so identify

my husband PALS is nowhere near that stage yet, but I see every week more and more changes in the person he was, and with that the changes are more and more ones of not being realistic, not being logical, and his empathy to me is falling away.

He also has bulbar, and he has the emotional lability - can't control his emotions appropriately.

It is heartbreaking as he is aware of this and tried to describe it to me the other day, and says he has brain damage. When he is lucid it is more heartbreaking to me as it would be almost easier if he didn't shine through at times.

I can't give you the solution though I'm sorry, just let you know that it is often a part of this disease even without it being actual FTD. I suspect myself that FTD may take hold if my PALS does live very long. I could be wrong, it's just a gut feeling.

My PALS acts a part when people are here or we are with health professionals. He seems so aware, very positive about everything, but when we are lone he goes very up and down.

I think that you need help from your doctors to get something in place.

My health professional team are aware that my PALS is not all he appears as I have had to speak to them privately, and this does help me to cope as well.

 

[Constant]

Thanks for your replies, i very much appreciate it.

Unfortunately, we lived a sad and rough afternoon. After his sister came to us in order to dicuss with him, he turned very mad and agressive as soon as she left ; threating my mother with a stick because of a problem on a rocking-chair ; screaming that she was always provoking him and that we were stupid people. Then some foolish grimaces, adding he wants divorce (they are married for 30 years). I

In these circumstances, I don't know what to do, then if I shrug my voice, I'm sure it would lead to physical confrontation, which I would like to avoid ; but on the other side when he is threatening to beat my mother, there is less and less choice. Pretty hard to deal with, pretty hard...

Shitty disease !

 

[Katie C]

Constant... you or your mom need to get the doctor to reevaluate the possibility of FTD because that's definitly what it sounds like to me. If it is FTD, it is possible that an anti-psychotic to go along with the anti-depressive could be extremely helpful.

 

[ottawa girl]

Constant,

As I mentioned to you, I also suspect FTD ( or a tumour ?) particularly if this is a new behaviour. Please, alert his neuro. and hire an attendant ASAP. Given that he behaves well in front of others, it will offer your mom some respite and a measure of security. If neither of these suggestions are viable, then I will reiterate my earlier suggestion that he be placed in a suitable nursing home where he can get the care he evidently requires. There is absolutely no reason, in my opinion, that your mother and others should be living in such an unsafe and detrimental environment. Daily visits from his family would be safer and possibly enhance the relationships all around. Once your dad is stabilized, steps can be taken to reintegrate him into his family home.

I am truly sorry for the ordeal your family is experiencing.

 

[affected]

I completely agree, you need to get professional help from your health workers - medications may not work fast enough and he may continue to be aggressive until they do, so he may need to go into care, at least until this side of his health issues can be settled.

It is a terrible disease and it does change the PALS emotional state, but if FTD is involved then treatment is essential for all of you.

Really thinking of you in this ordeal, there are no easy decisions, but they need to be made.