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alsmom2

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Lost a loved one
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OH
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Hillsville
My son was diagnosed with ALS back in September of 2012. He has just recently moved in with myself and his dad. I really don't know exactly how to say this or put this so I will just be really blunt, he is hateful! He won't take his ALS medicine at all nor will he take his anti-anxiety medicine either. He says that anyone who thinks he needs an attitude adjustment can kiss his ***. Obviously he needs something. I understand that he is angry and depressed about this disease especially since he is just in his 30's but something has got to give. He has gotten worse in this short period of time and is completely dependant on us as well as his sister. The caregiving (while hard) is notthe hardest part for me, he doesn't get as hateful with his sister or his dad but takes it out on me the most. Does anyone have any suggestions or coping methods they would care to share?
 
I am so sorry for what you are going through. It is his choice to not take his medications, but I don't think he has the right to take his anger out on you and his family. You may need to tell him how he is making you feel and he does not have the right to be hateful to you.

He may be having some cognitive issues, only a dr can tell you that but it may be some of the problems. I wish I could make it better for you and have the answers you are seeking. I am sure someone way smarter than me will chime in. I just wanted you to know that we are here for support.
 
Can you put him in touch with other young pals? I think there is a FB group. Young faces of als. It might be good for him to talk with people who are young like him.

I'm sorry you are dealing with this :(
 
Hope I am speaking out of turn...poor guy...probably doesn't like the idea of having to move back home and have his mom, dad and sister take care of him and his basic needs. I can only guess that he is trying to protect whatever independence he has left and his dignity. But it's no excuse. I'd call a family meeting. Take it back to the basics -everybody (him included) has to step up and take responsibility for maintaining the harmony and respect in the house. Set up clear boundaries. He may have the diagnosed but is not the only one living with ALS, you all in this together.
 
I would be angry too, and sad. And I am sure you and the rest of your family have felt the same emotions. Have you read the threads on FTD? It is common with PALS, and particularly with bulbar palsey.
I am sorry to hear of the difficulty you are all having with his diagnosis. I can't imagine how hard it must be on him and everyone.
 
@alsmom2:

I know it's a difficult situation for you and, it's very hard for him seeing himself so young and being struck by this "monster" (ALS).
He probably fears the unknown, fears losing his independence, etc.

It is not only okay to feel angry and in despair, but it is necessary. The key is to get past that point. He can't live there in despair forever.

Maybe he needs time to adjust and come to terms with this disease. Definitely not an easy task but I hope he'll eventually get there.

He must remember that no matter what happens to his body, he is still the same person he always has been. This disease is there, but it can't change who he is. I don't mean not ignoring the symptoms, of course, but to look elsewhere for gratification. Always appreciate all the other things he still has and can enjoy.
He should think that if it weren't this, it would likely be something else. Life is indeed too short. Make the most of it if he can.


Best regards and good luck,
 
I empathize with you so much. My wife, before ALS never showed a mean bone in her body. After she got it, her whole personality changed. It was not because she was bitter with the disease, it was because the disease had affected her frontal lobe. For years, Als was though to only affect the nerves attached to muscles. Now, they know that it affects the brain also. My sweet wife would say things to me that cut me to the core. It broke my heart. In her last months, she has a blank stare on her face even when watching a funny TV show. Remember to just treat meanness with kindness. He can't help his progression. He never asked for what he is enduring. You,on the other hand, can control your emotions. Please hold back on saying ugly or spur of the moment hateful things. I didn't, and it comes back tohaunt me now and it breaks my heart. I could have been so much more understanding. There is an end to AlS. 2 to 5 years. You will probably live on and you need to look back with no regrets. Being a caregiver to an ALS patient is very hurtful and demanding. Hang in there and trust God to give you the fortitude to live through with it. I assure you it will be over sooner than you think.
 
alsmom2, I wanted to check this threat again because you have been on my mind.
I can relate to what hangingon1 wrote. My mom is not necessarily hateful (yet), but she is often at a lack of empathy when it comes to her caretakers (primarily me) and their needs or feelings. She WAY overacts when she needs something, as if it is a huge emergency, and when I try to reason with her, she looks at me and types something totally unrelated as to change the focus off of her. She is very controlling and demanding. It is as if she could not care less if I need to eat, sleep, sit down, get a break....... She will then tell other people about how MY life has stopped to take care of her and that I am exhausted, etc. But even then she exhibits no concern.
This is how I have begun to deal with it (and I have only recently begun to try to deal with it): I tell her when I am going to step away. I tell her that when she acts out like that I am unable to help and will not be able to until she stops. I listen to her desires, even when they are unreasonable and try to work with her. If her desires are for something that will not be the best for her, I make sure she knows and remembers that, and I go along with it. If the results are not so great, she changes! It is kind of like dealing with a child. I hate saying that because she is my mom and I want her to live the rest of her life with dignity. But these days our memories are short. If there is an 'incident', the next hour we are back to being grateful for the time we have.
It is not easy and I think most of the responses are not telling you it is. But if you sometimes feel guilty that you are not embracing every moment of the time you have left with your son, remember that it is not easy. And as a matter of fact IT IS HARD. I with this disease process were like some Lifetime movie where we can recognize the reality, process it, and then get to do some big group hug for the time we have left. But every day is a brand new challenge.
 
It is so hard when you are caring for someone you love and they turn their anger on you. "we always hurt the ones we love", right? it doesn't make it any easier though. You are dealing with this monster just like him, and unless he has FTD, he doesn't have any excuse for treating you badly. of course, many of us have had to deal with it too. I think even if a pals doesn't have FTD, they can have personality changes that are very difficult to deal with. I think you have to set boundaries for him, because if you let him take all his anger out on you it will destroy you and will not make him feel any better. no one wins.

Read him your post. it is very heartfelt. Remember, just because he is suffering does not lessen the suffering that you feel. you may not have ALS, but that doesn't make your pain and sadness less important. Anti anxiety or anti depressants can help, but he has to take them. Anger is depression turned outward.
 
My husband has become a control freak--every little thing he has to tell me! I can be reaching for the hair brush and he must tell me, get the brush. GRRR! then the important things like his hand has fallen off the chair controls he doesn't say anything he just wiggles his arm and then complains when I dont' notice! GRRR and never a thank you or please! he says, I don't have the energy to say please and thank you, but he has the energy to tell me how to cook and clean and wipe my own nose....! I try very hard to stay calm, but it makes me so mad at him.

what I am getting at , is that we have this forum so we can vent and then be better caregivers. It is never easy! GRRRRRR!
 
@ Barbie - I can certainly sympathize with you about your husband because my son is the exact same way. Their actions (from the way you described them) are spot on!
This tears me apart, he is my son, my first born , dying of this disease.I know I am not the first person to have their child be sick from a terrible diease. With that being said, I feel nothing but guilt if I attempt to correct his anger orhis actions. Sometimes the things he says to me leaves me feeling worthless, guilty, and heartbroken. I appreciate all of you for taking the time to reply to my post.
 
alsmom.. I'd get a cognitive evaluation done as soon as possible. I usually recommend that the CALS get a notebook and start writing down episodes of anger, inappropriate behavior, outbursts, cruel statements. Try to write down time, what else was going on, etc. This will help both you and the neuro to identify potential triggers (there aren't always triggers though). Contact the doctor by phone or e-mail... you can express your concerns without violating privacy. There are medications... antidepressent, antianxiety and antipsychotic... that in the proper combination can at least help take the edge off the behaviors for both of you.
 
It's hard. I was 30 when diagnosed. It's very frustrating to rely on others for everything, and i used to get very irritated with my caregivers as well. And i didn't even have to move back home. That must be rough on all of you. I'm sorry. A psychologist and antidepressants worked well for me, but to a certain degree it just takes time To open back up. I'm very sorry for what you are going through. I hope it gets better soon.
 
Definitely even without FTD involvement there is a change in personality and a huge amount of anger that the PALS has to deal with.
Then there is the anger that the CALS has to deal with.

Mix them and there is a whole range of things happening that are so hard for both parties to sort out and it's not easy as we were never prepared for this monster in our lives.

My heart goes out to you, and to your PALS and I hope you can find a way to talk it through and work together.

Sheesh i hope my PALS an I can do that too!
 
I agree with Cricket, I would call a family meeting and let him know that now is not the time to treat his family this way, I have bulbar and I have caught myself holding back from saying hateful things that don't need to be said, unless this is a brain issue causing this, there is no excuse. Maybe try putting his meds in food or drink, good luck, God Bless
 
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