I need some advice/help

[Kelly5538]

Hi everyone.
I'm not really sure what to do here. PALS has never been the picture perfect husband but it's getting so bad. Today I had things thrown at me, was told to F off numerous times, told to get the f out, told that he should have left me 20 years ago, had to clean up a pop that was thrown, he cried all day, told me that I don't know how to keep the house, he asked me to buy him out of the house so he could just have money and leave, etc etc. He refuses to see the psychiatrist that his neuro wants him to go to.
We have two kids, and I don't want them seeing this or being here for this. He's just recently gone into a power wheelchair and didn't take that well. Says I put him there cause I don't want to help him walk anymore.
I don't know what to do, but I can't do this much longer. I work full time, and take care of him and the kids and I swear today if it wasn't for the kids I would have gotten in my car and just drove away

 

[Atsugi]

Is it denial, depression and anger? Or is it dementia?

Are there times when he's receptive to your ideas? Can you persuade him to keep a doctor's appointment?

 

[Kelly5538]

Hi Mike. He has always rejected the psychiatrist part. He goes to our three month neuro appointments but rejects everything they suggest and tells them so. He says that nothing will stop this anyhow........

 

[lgelb]

I'm sorry you're dealing with this, Kelly. Sounds like more than emotion to me, e.g. talking of leaving, your keeping him from walking and the like. Some form of cognitive impairment is certainly possible. Constant crying suggests emotional lability, which Nuedexta might improve.

Right now, though, you don't want someone in his state around your kids. So if/when he has rational moments, you might discuss what his behavior has been, why you can't tolerate it on the kids' behalf, and why, and ask that he agree to try a drug that might help, that requires a doctor's visit. I don't see that a psychiatrist is really necessary if he is more comfortable with his internist or neuro. This is a situation where you are looking for the shortest distance between two points, and a new player in the game might blow up the bridge.

Of course, you always have the option of moving out if you need to. What is the financial situation -- if you were not able to care for him at home, is there another option?

Best,
Laurie

 

[affected]

Oh Kelly, I hear you!

I don't agree constant crying is emotional lability though. Emotional lability usually shows in sudden outbursts of crying or laughing, often in opposition to how the person feels. It can be quite sudden, and they have trouble bringing it into control, and then it passes, often just as suddenly.

This sounded to me more like a rage.
Your neuro is correct that he should be evaluated, but without his permission of course this can't be done simply.
Can you contact your neuro and ask if an assessment can be done by talking with you about the changes? This is often a way of diagnosing FTD as the patient has no idea of the changes and the usual dementia questions don't often apply well, because they also have ALS. So if asked if x task is now more difficult they will either say no (which is not true) or say yes but because of ALS. The CALS can usually give the insight needed.

There are a few meds they use for FTD, and for my Chris just getting him on endep (an antidepressant) did take the edge off his rages and got him finally sleeping. He only agreed to try it because he was told it may help him sleep.

You are right, your kids should not have to witness this, and you may have to talk with them about brain issues, and it may be worth seeing if they can talk to a counsellor so they can talk to someone about how they feel about what they are witnessing.

My Chris would accuse me that I just wanted to put him a corner so he would rot. The paranoia is awful to deal with as we understand the progression and the safety issues, and they want to blame it all on us.

I'm just so sorry you are dealing with this as it is far harder than ALS alone.

I'm not saying he has FTD, but it is obvious that you are not the only one seeing the personality, executive function and cognition changes happening.

 

[preacherman]

Kelly;

First I am so sorry to hear of the pain in your life.

You mentioned that 'he has not been the picture of a perfect husband'; and then 'getting so bad'.
Of course we all fall short being the picture of a perfect spouse, but I am assuming that this goes a little further than that; so I will assume that there have been issues well prior to the onset of this disease.
While a disease can alter a persons control of their faculties and their emotions, there is still no excuse for the emotional abuse of those we love.

I do not have experience with FTD so I really can't say to what extent the disease will effect the thoughts and actions of those affected.
To me, just like the effects of alcohol, when someone is somewhat impaired, the truth that is inside their heart may be revealed as they lose their inner inhibitions and their ability to hold their thoughts.

We have a responsibility to our children; for their physical safety as well as their emotional well-being.
I don't know how old your children are or what has been their normal relationship with your husband, but there is a point that their emotional well being could be much better served by removing them from the source of emotional abuse.
Realizing that there will certainly be a separation anxiety, you must weigh the benefits of a separation (even if only temporary) and the distress and the anxiety which may result, to the emotional damage which will most certainly result if the situation is not resolved.

Your husband clearly needs help, and, given the bonds of marriage, you have a moral obligation to be there for him.
However, if he is unwilling to accept help then your next reasonable course of action, to me, would be to protect your children for their sakes and then to pursue a course of involuntary treatment for your husband.
Perhaps just demonstrating that you won't let him continue to treat you or your children without love and respect may prompt him to accept help. (or perhaps not...)

If it is the belief of his doctor that his condition is causing him to neglect treatment then it is not unreasonable to pursue involuntary treatment.
Is there a medical power of attorney in place?

 

[lgelb]

Tillie,
EL + FTD can manifest a variety of ways. But I did not say it was EL, just that it could be. I also mentioned that there are multiple issues at play.

Since Nuedexta has a shorter time to therapeutic effect than, say, an SSRI, it is an option to consider, understanding that other rx (and even common sense questions like what Kelly's husband is eating, and how much he is sleeping) are likely part of a response as well.