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turnip

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OLMSTED FALLS
Has anyone else seen basic personality changes in their mate? My soul mate of 34 years, who now has ALS, was the guy who tells me dinner is good every day. If I do something for him he always goes out of his way to thank me. He never makes anyone feel like they are bothering him if they need help. He would go without something before putting someone out to get it.

The last week...I have seen a stranger. I know he is dealing with a ton of emotions, he is sick, afraid for my future, fear, loss of movement, a job and more. I get this. It is his journey and I can only imagine what is going on in his mind. I expect bouts of depression, faked "euphoria" and more.

But, he is now acting like many stroke patients I have cared for. A total personality switch. Quick example, he said he wanted to watch the first "Star Trek" movie. I spent an hour going through boxes, closets and the attic and couldn't find a copy. So I went online and searched all my usual sources, I found a copy to rent and set it up on his computer. After watching it for 4 mins. he threw his mouse and screamed that this wasn't the first movie! I never saw his eyes look like that before, so angry, disgusted with me. I finally found out he wanted that movie with Princess Leia, sigh, not the Star Trek he asked for. The old him would have thanked me for trying and we would have talked about what movie he was looking for.

When I try to keep his paperwork in order for his VA claim, and explain to him he has to sign this and give this to a doctor to fill out he yells, "Put it in my folder!!!" He won't listen to all he has to do. He *****es if I don't get food fast enough, if the dog barks or if I can't hook his diaphragm pace maker wires up fast enough. Not at all like the man I lived with for 34 years.

Can ALS alter brain, change personality like a stroke? Or is this just him ratcheting through moods, grief? I keep smiling and doing and saying yes dear, sorry dear, but it hurts.
 

Atsugi

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Sorry to hear this, Turnip. I haven't any cure or treatment for you or your husband; I just want to say how sad I am that you're having to go through that rare aspect of the disease. FTD is no fun, it can take away the person we love, long before they're physically gone.

I'm hoping that it's a temporary anger and not FTD. Good luck. Keep us posted.
 

turnip

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Thank you both. I remember someone talking about FTD? a long time ago, when his mom was sick with ALS. I will read up on it.
 

affected

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I'm so sorry you are going through this.

FTD does not usually come on suddenly, it is a wasting of the fronto temporal lobe. Typically gradual changes are noticed.

It may be worth getting this checked so you have some idea of what is going on?
 

lgelb

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Major depression, as is not uncommon in ALS, can also cause irritability, reduced empathy (though we also connect the latter directly to ALS) lack of attention to detail (like Star Wars vs. Star Trek). In a calmer moment, you might ask your husband if he might feel sad more than anything, and if he wants to try a med to feel less constantly so. Remember your I statements; since you have taken care of pts in a similar boat, that should be fairly easy.

Best,
Laurie
 

affected

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Be careful however because until recent years MOST PALS with FTD were diagnosed with depression as their symptoms were written off.
 

turnip

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Thanks all. I know some depression is going on, how could it not be. Mix it with a healthy dose of anger and you have mood swings. You guys have helped me focus and keep things in perspective.
 

gooseberry

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My pals has anxiety and depression but has exhibited a lot of confusion and memory problems. He also can be short tempered. I dont know if i is the disease or if it the worst side of him comes out. Hang in there. Tomorrow is a new adventure!
 

turnip

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Thanks all. I think it is a healthy dose of depression and anger. He levled out yesterday and coped with the day. Are there any therapist, psychiatrists that specialize in depression and anger due to this disease? I want to help him, but he sees me as someone he should be caring for,not someone who should fix this for him.
 

lgelb

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Your clinic and/or the local MDA or ALSA may know of a therapist who could help. It is not a specific specialty, but there are often clinicians in/near hospitals that see a lot of pts with physical health issues that are accompanied by mood/cognition issues. Lots of chickens and eggs.
 

KatieNBoyd

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Hello Turnip, I know first hand what you are going through. My PALS (hubby) is and has been doing the same things. I know it is not personal and I have to keep in mind that he is sick. The difficulty I have and I imagine that you are also seeing is as the caregiver we are first in line to catch it completely. We try to make things as good as we can but it still isn't right.
I feel for you and send you hugs and strength. As I continue to be told, you must try to give yourself time and care. I know it is sad and painful not to have that connection any longer with your best friend and sole mate. It hurts tremendously. Hugs!
 
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