Frustrated and afraid

[evansmom99]

These last few months have been tough. My loving husband has become a angry hatelful man. He used to be my best friend and we could talk about anything. Now anything I say or do is wrong and met with anger. He has announced he does not have ALS or anything like that, he is not going to die, and it is me and Dr's pushing that topic.
I want to be able to talk about his desires and wishes,, but he says no. Will not do tube until he can swallow no more but knows that is not going to happen. Will not discuss end of life and confort issues not to mention the legal items. Says I want to take his money. Says I am brainwashing our son about his going to pass.
I love him but but do not love the man he has become. There has been some concern that he does have brain affliction being from ALS or Dementia.
Dealing with ALS is hard enough but the abusive hate is more than I can bear. I want to be there for him due to remembering he is the man I fell in love with and had a child with.
what can I do, I want to make sure there are no probems should he need a feeling tube and later confort issues. I respect his desire not to be kept alive on a vent, and saying he does not want to starve to death.
I feel so helpss... had I been a better more healthy wife maybe things would of been different. Maybe I need to try harder, I just don't know...
Thanks for letting me ramble on.

 

[ScarlettK]

Connie, I am up reading because sleep has eluded me. My sis had a complete come apart tonight. She is afraid at times to the point of being unreasonable in her thinking. Letting go of the "worry" about what might happen seems to be one of the mental issues with ALS. The physical part is very tough, but the mental anguish factored in boosts the "worry" issue off the charts. As I am reading your story, my heart goes out to you. None of this is easy. We come here to vent, to find comfort and pray with so many who have been where we are now. I will pray for you, your hub and son. I encourage you to hang tough because your hub will come to terms with his diagnosis. Get with the doctors for medication for his anxiety and depression. Come here as often as you can. The comfort and support here is nothing short of a miracle. I send you big hugs. Kaye

 

[joni51]

Connie bless your heart..looks like this is a little new to you and your husband. Was he just diagnosed? If so that is probably a little normal, the denial and all. Maybe it is just going to take some time for all to sink in. Wish I knew something else to say to help. Just know we are here to support you through this.

 

[Georgia Peach]

So sorry to hear of your husband's recent diagnosis and all the agony you are going through. For months I couldn't talk about ALS without crying. I am talking to someone at church now and it's helping. I also feel that my husband is more accepting of his diagnosis now that we are almost six months into this journey. Talk to someone who loves you and will let you vent. This is a wonderful forum for information and love.

 

[Ms. Pie]

You are obviously a good and loving wife and mother. This isn't anyone's fault Connie so don't take any blame for anything on yourself. Yes, when was he diagnosed? How is this affecting his daily routine so far?
Stay close. Love,
Marta

 

[Deborah Ann]

I just went through the same thing with my husband. If you want to text we can talk back and forth or stay with this forum. I can't get into my story yet because we are just now through with our 2nd. opinion and are getting ready for a family final vacation. Possibly? Its also easier to talk privately on facebook you can find me by searching for deborah droddy. I have my youngest daughters pic. on it. send a friend request if you want to chat privately. We still have not told our 3 girls about this. Decided to wait until he is bed ridden or in wheel chair. ? still up in the air on that one. But my husband got very violent verbally 1 day and even blamed me not just the doctor. So yes I know what yur going through, my husband is my best friend not just my husband. Talk to me if you want Im here. Debbie

 

[caldona]

Sorry about your husband having ALS but maybe you are pushing all of this too soon. I know how I am I don't want anyone bugging me about everything. Having said that I did give power of attorney to my husband also a living will. Give him time to think he is not dying tomorrow. My husband says he doesn't think he could handle als if it had been him instead of me. Be patient I understand that this does affect you also

 

[brooksea]

Connie, is he on anything for Emotional Lability? You previously had stated he had outbursts of laughing and crying, along with the temper flaring. My husband is the same way and he is on an antidepressant, but there is a new medication for Emotional Lability that my husband trialed and it worked great (Nuedexta)! The only reason he won't take it, is that he refuses to pay a lot for any medication.

As others have said, he needs time. It's too early for him, or even you, to think straight right now.

As for blaming yourself...DON'T! All of us cALS have our shortcomings, whether it be physical, mental or emotional. We just do the best we can from minute to minute. We are not super human and being a parent of an adolescent or teenager is tough without the ALS! ;}

Give it some time and come here when you feel like it. We'll all be happy to help if we can! Hugs to y'all!

 

[evansmom99]

Thank you all for the great advise. The fix it mom in me wants to get everything in order and make things better. I just need to remind myself of what if it were me in his position. Just need to pick my battles and let the rest run off my back even if it hurts. You all are awsome!

 

[Miss]

Connie, on the days you can't just let it roll off of your back, don't feel guilty. Know that you can always come here for a supportive ear.

 

[jwife]

Connie, sorry to hear about your husband. My husband was diagnosed about 2 years ago. I think that although the physical demands of ALS are extreme, the emotional issues are far more daunting. My husband has been diagnosed with the FTD (dementia) that goes along with ALS. His actions are much like those of a 2 year old. Marriage is no longer a description of our relationship. Once he even told me that I had to take care of him because I was the "caregiver". That pretty much describes our current situation. You already have several great suggestions from other posts. Some of these problems will be solved as his needs progress. You might find some help from the medical specialist that are caring for your husband. I just want you to not feel that you have done something wrong or that you need to be a better wife. I think we all tend to feel that we need to do more, but we are only human and each of us has limits to our capabilities. Know that the people at this forum understand what you are going through and can offer great advise and encouragement. GOOD LUCK!
Janis

 

[notme]

The first stage of grief is denial. He's obviously in that stage. You might want to put in a call to the ALSA in your area and discuss your concerns as well. They can lead you in the right direction for any testing he might require regarding FTD.

It's very difficult to deal with someone that is having mental issues caused by organic problems. The logical mind knows they can't seem to help themselves, but it doesn't stop us from having hurt feelings and feeling as though we are somehow doing something wrong.

Deborah Ann--if your husband is having the FTD type of symptoms--it will be a bit easier on the kids to at least be told daddy is 'ill' rather than having them perhaps thinking he is being mean.

It is seeming like there are many PALS with emotional issues, EL and FTD. My thoughts are with you.