Tracy:
As you may have read - if you saw my posts within the last few weeks, I have only been here a few weeks. I am the primary caregiver for my mom, who was diagnosed in February of this year. In reality, however, her disease first appeared over a year before her official diagnosis. You and your family have been in my prayers, ever since I read one of your posts for the first time. Similar to some of the forum 'veterans', I wondered whether your husband exhibited any of this demeaning behavior prior to his ALS diagnoses, or did this verbal/emotional abusive behavior develop as his disease progressed? Not that it makes that much of a difference, from a practical viewpoint. The bottom line, as you stated in your last post, is that your family lives in that house, and in addition to your role as his primary caregiver, you are a mother and share responsibility for your children's well - being, and most importantly.....your own emotional, mental, physical and spiritual condition. Based on your last few posts, I have no doubt that you realize just how difficult it is to provide for others emotional needs (as a mother, friend, etc...) when your own love, encouragement and support accounts are 'overdrawn'. It is pretty clear that in your current situation, you are rarely (if at all) receiving anything that could be used to offset the negative balances in any of those 'accounts'. From what you describe, beyond not receiving anything positive, you are instead being treated with disrespect - more like a 'servant' then a wife. While my own situation is far less painful then yours, there have been times when it felt as if my soul was 'sucked dry'....where I felt much more like a 'slave' then a son. During those times, I experienced many of the feelings that you described in your posts. I felt 'alone'...I felt resentment towards those family members and friends who I felt 'could care less' about mom or me...wondering how they could be so ignorant and absent - and not even guilty! I felt like I might as well forget about all my plans, dreams and goals, as they are obviously not important anymore - nor will they ever be. While I still experience some of those feelings...and still have days where it feels like I am going through the day with a heavy wet blanket draped over me. Where it takes everything I have just to get out of bed, go to the store, etc... - I rarely have days where I am so overwhelmed or angry that I want to throw in the towel and run away. It has been much better for the last 3 - 4 months...
why?....because prior to that, when I truly felt as if I was going to lose it, experiencing times throughout the day..where my eyes would fill with tears - often for no specific reason. I wasn't sleeping...or eating much...and truly got to a place where most of the time I felt numb and really couldn't give a s--t about anything. Despite feeling that way, something in me cared enough to call the local ALS association. Like some have suggested to you, people had been suggesting that for awhile. I resisted doing so - until that moment. The person I talked with, who has been with the association for 17 years, could tell from what I said and the way I said it...that I needed acute intervention. She came to our house the NEXT DAY...and sat down with mom and I for 2 hours. That was the start of things getting better. As I said - I still have days that 'suck' and feel some of those feelings. Through the association, I was invited to a meeting of local PALS and caregivers. While seeing some of the PALS who were more advanced then mom was scary - when I left, it was clear that there were plenty of others who experienced the things that I had - no matter how horrible. I have no doubt that in Wisconsin, there are other families where the husband or wife of a PALS spouse has been treated with the same level of contempt that you are now. While there may be nothing you can do to change the way he treats you...you will a number of people who support you and can provide you with strategies for your own survival and how best to take care of your children during these times. While I am not certain as to the specific location where you live near Madison, I was able to find the following links:
Here is a link to the ALS resources available at the University of Wisconsin Health Center
Amyotrophic Lateral Sclerosis (ALS) | UW Health | Madison, WI
This link will take you to the 'Home Page' of the Wisconsin Chapter of the ALS Association
The ALS Association Wisconsin Chapter
This link will take you to the 'Caregivers Resources' Page from the ALS Association Website
The ALS Association
While you may end up at a similar place to where you are now. Where the best decision - for everybody - is for your husband to receive care at some type of facility, best suited to his needs. By contacting the association and/or local healthcare facility - and utilizing the resources that are available to you, you will be in much better shape, when you get there.....
Paul