Feeling guilty.

[mccarthygrace]

Hi. I'm new to this forum. My husband was diagnosed with ALS in Nov. And I have watched him become almost mean complaining about the smallest things and just impatient with me. I come back at him and becoming so angry. He is in a scooter and starting to become weaker in hands and arms. He use to be grateful for all I did and now nothing is good enough. All 3 of our kids have passed on and I feel like a walking zombie. Feel bad for just wanting to get away for a while. Thank you for listening.

 

[lgelb]

Hi Grace,

Welcome, and very sorry that you find yourself here, and for your and your husband's losses.

With ALS, changes in thinking, mood and behavior are more common than is widely known. There is nothing wrong with the feelings you have, and you should not feel guilty. Please post any time you want another point of view, or just to rant -- part of what we are here for.

One thing we often recommend is that you use "I" statements instead of "you" statements. That can help your husband feel less defensive (at root, he knows how stressed you are).

Continuing to interact with your husband as his wife, not just caregiver (easier said than done, I know) and "getting to yes" (offering choices, stating facts, allowing time to process new information) can help.

Best,
Laurie

 

[Narrowminded]

Hi Grace and welcome. I’m sorry it has to be here, however you will learn here is a little slice of heaven on earth.

Your feelings are completely normal. You will find many of us ranting, crying, expressing joy and just asking or answering question. Please feel free to do all of the same here.

Hugs,

Sue

 

[Atsugi]

I think possibly there can be a time to think and feel like a wife/husband when we interact with our loved ones, and also a time to think/feel like a professional caregiver with a patient.

The two roles don't mix well. But if you can switch from one to the other (many people can't, I know), then at one moment you can listen to his angry words and think "those are clues my patient gives me to figure out the best care I can give him now." Then, when the professional caregiving can be set aside for the moment, you can switch back into wife/lover mode and enjoy your time together.

Whenever a person gives me some negativity (even loud cursing personal attacks) I think to myself "I know two things about this person: First, they need help and these words are clues to what kind of help they need. And second, I think "this person hopes that I can help them--otherwise they wouldn't be bothering to communicate with me at all."

Everybody needs help, and we can give them hope that life will be better, if just for a moment.

 

[mccarthygrace]

Thank you all. I may need to have my antidepressant upper and just having knee surgery doesn't help.

 

[Romeosc]

Hi. I'm new to this forum. My husband was diagnosed with ALS in Nov. And I have watched him become almost mean complaining about the smallest things and just impatient with me. I come back at him and becoming so angry. He is in a scooter and starting to become weaker in hands and arms. He use to be grateful for all I did and now nothing is good enough. All 3 of our kids have passed on and I feel like a walking zombie. Feel bad for just wanting to get away for a while. Thank you for listening.

I'm sorry for your husband's reactions and mood change!

As a PALS, I understand his frustrations, I bite my lip to refrain from showing my frustration at my current limitations. I love my wife and try not to snap or take out my frustrations on her.... She has suffered as much as me on our "new normal"!

Being dependent on others for every normal everyday task IS depressing! Try getting him Nuedekta "mood leveler". Stops crying and inappropriate laughing!

Good luck!

 

[Buckhorn]

mccarthygrace - I think Romeosc's comment that ... "Being dependent on others for every normal everyday task IS depressing" is exactly correct. It has to be so depressing and frustrating, adjusting to ever increasing dependency. Even though I am now a constant care-giver for my husband/PALS, I still cannot fully fathom what it must feel like to be totally, utterly dependent upon another person for just basic functions. I am so sorry for the problems you are experienceing with your husband's reactions to your attempts as care. If he has FT dementia, then then your attempts to make him happy/satisfy his wishes are confounded greatly. We are here to help you whenever you need advice or just a place to vent. Blessings to you mccarthygrace.

 

[Herdaughter]

I’m so sorry to welcome you here Grace. These folks have been amazing and have helped me not only with emotional support but with sage advice for caregiving as well. Things like when to talk to the doctor about an issue and when a social worker might be more appropriate.
We are here for you.