Status
Not open for further replies.

theotherginger

New member
Joined
Mar 30, 2018
Messages
3
Reason
Loved one DX
Diagnosis
06/2017
Country
US
State
PA
City
Philadelphia
My mother was diagnosed last year. The majority of her body has succumbed to ALS. She can still speak, move her left arm, and her neck.

Over the past few weeks, her mental state has changed. She has always been someone who speaks her mind, and in some cases - should not - but rarely to this extent. However - she can be spiteful, and she is the type of person who will say the meanest insult during a fight just to have the last word... and then, apologize later but still believe she is right.

She said cruel, horrible things to me and my father. She even went so far as to tell me she "hopes I die in a plane crash en route during my honeymoon" (this was her reaction when I was not able to text her back while in a work meeting). She called back to apologize for saying that comment, but ended it with "I still hope you have a horrible time on your honeymoon".

Believe or not, the things she has said to my father - her primary caregiver; the most patient and caring person I know - are worse. He never complains... he has taken care of my older brother for 37 years (severely handicap and brain damaged - imagine a 6 month old baby forever) and now he also takes care of my mother. My younger brothers and I help in any way we can, but she prefers my father to assist her - even with the cruel things she says.

Everything we read says the brain is not affected! So, what the f*ck??? I get it - this is awful. I cannot imagine the pain, frustration and sadness my mother feels. And I know we hurt the ones we love most, because we know they will forgive us... but this is ridiculous. My father's life is miserable. He can't leave the house and he can't do anything right by my mother.

Have other caregivers experienced mental abuse from their loved ones with ALS?

We are hanging on a thread. The other night I wanted to drop her off at a facility for 24 hours, just so she could experience that horror for a day. I don't feel bad. I don't care if this sounds selfish. We go above and beyond for her. On Saturday, my father redid her hair five times, and still she screamed at him and called a hairdresser to come over. He's not a hairdresser!! He's a 67 year old man who is doing his best to take care of his wife.

She is a nightmare. And truthfully... her mother was the same way (diabetes, confined to a chair). So, I'm grasping at anything that can make me think it's her ALS and be more forgiving... but not much is helping.

Thank you for reading.
 

MVFinVA

Distinguished member
Joined
Sep 5, 2017
Messages
116
Reason
Lost a loved one
Diagnosis
05/2017
Country
US
State
VA
City
S
Everything you read is NOT correct. It really annoys me how most articles about ALS state that as a fact. The brain can be affected. New research has determined that 30-50% of PALS may have some cognitive impact and 10% have full frontal temporal dementia (FTD). My husband has FTD. His is not behavioral but he has lost the understanding and recall of language and speaks very little. He is now having trouble with yes or no questions. So while I don't know your mother, or how she was before, her behavior could be as a result of ALS/FTD. This would definitely be something to bring up to her neurologist.

There are CALS on here with PALS who behaved as your mother does. Maybe one of them can chime in more specifically. Also, check out the ALS and FTD forum here.

Mary
 
Last edited:

MarieLaure

Distinguished member
Forum Supporter
Joined
May 16, 2018
Messages
247
Reason
Loved one DX
Diagnosis
10/2015
Country
FR
State
Ile de France
City
mortcerf
Hello Theo (?)
Well, yes you are Indeed hanging on a thread and what seems urgent is to find a way to relieve your father from the strain first, as well as your brothers and yourself.
you might be able to reach out to people around, out of pocket help or friends from close community, so that your mother could be taken care of at home while he can relax a bit outside the home. Of course that would be knowledgeable and trustworthy people, considering that you brother also needs care.A few days now and then with one of the children perhaps.
Maybe her agressivity stems from her helplesness but still you need to protect yourselves, for everybody's sake.
did you get a medical opinion about your mother's current emotional state and attitude ?
In anycase suffering this situation will not help her in the long run. You will have done the right thing when you can keep your father's and sibling's health protected as well as hers.
I wish you all the strength in the world
 

KarenNWendyn

Moderator
Forum Supporter
Joined
Jul 29, 2017
Messages
3,762
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
I agree that frontotemporal dementia is a definite possibility.

Sudden mental status changes in the ill or elderly can also result from infections or metabolic disturbances, though usually these cause mostly confusion and lethargy. But, if she is not on BiPAP, she might benefit from blowing off some CO2. If she is already on BiPAP, then she may need a change in settings. She should also be evaluated to rule out a urinary tract infection or a pneumonia.

Even if the cause of her personality changes is none of the above, she undoubtedly is depressed and frustrated. It’s unfortunate she is taking it out on the family. Antidepressant medication may help. In any case, it would be worthwhile discussing the situation with her physician.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,997
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I'm so sorry, this is truly awful to endure.

Fronto-temporal changes are common with ALS, however you seem to be describing an escalation of the personality she already had. That's not so typical, but I'm in no position to diagnose.

Behavioural variant symptoms probably would seem to fit, but the difference is usually that these behaviours are totally out of character.

For example my husband experienced a marked and significant change of character, and became a totally different person due to the FTD.

Your mother may be used to getting away with taking out her frustrations and anger on all of you, and it sounds like she does get away with it.

It may be time to sit down as a family and with a health professional and discuss the behaviour with your mother all together and see what you can sort out. You may all have to set some boundaries. Your father may not be up to changing the relationship now if he has 'put up with it' all his life. It's amazing what people put up with and it becomes part of normal for them.

I'm really sorry that she would say such hurtful things, I think you need to stop exposing yourself to this and enabling her. If she can say these things, then apologise and go on to do it again and again, then she is being enabled.

Finally CO2 build up with often cause a big increase in irritation and anger in the early stages. Usually it is mixed however with confusion and headaches. What point is her breathing at?
 
Status
Not open for further replies.
Top