Old 07-07-2016, 11:54 PM #1 (permalink)
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Default I'm done.

I'm done with this caregiving duty. I will not take anymore of his meaness to me. Are there places where pals can go live? Like in a nursing home? Or will the state take all our assets to get him in there! I cannot do this, I had someone come the other night while I was out, he refused to let her have him go pee in the urinal. Instead he peed himself so I had to clean him up when I got home. Again today, he was mad at who knows what so he peed himself, making me clean up again. Depends we try if he lets me put them on only sometimes, but he goes thru. I'm seriously considering leaving, but I rather have him move out. This is my home with our children. Any help please?
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Old 07-08-2016, 01:56 AM #2 (permalink)
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Default Re: I'm done.

Tracy hon have you seen a counsellor, your doctor, your ALS association?

I have no idea what the rules for going in to care are where you are at, but I would start maybe with your ALS association, they should have a social worker that may be able to help you look through your options. I hope you find the solution that will work for you.
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Old 07-09-2016, 02:35 AM #3 (permalink)
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Default Re: I'm done.

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
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Old 07-09-2016, 10:22 PM #4 (permalink)
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Default Re: I'm done.

I am on contact with the ppl for ALS association and they say there isn't anything they can do for me. And no facility will care for some with ALS full time.
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Old 07-10-2016, 10:22 AM #5 (permalink)
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Default Re: I'm done.

Wow, it's horrible that there is no facility for PALS. I haven't responded but was concerned that if you found one, they would indeed take your assets?! I don't know that for a fact but it was a concern. I am so sorry this is so difficult. I can not imagine what it would be like to have to deal with being a CALS and abuse at the same time as well as being a mother to children of the home. I wish I could give you some helpful advice. Just know I am praying for you and we are here to listen and help in whatever way we can. HUGS!
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Old 07-10-2016, 01:04 PM #6 (permalink)
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Default Re: I'm done.

People with ALS certainly can be in nursing homes. Very few nursing homes are staffed or certified to take ventilator patients and some may not take BiPAP patients, but until and if he has a vent there should not be a problem in getting him into a nursing home. Finding 24/7 home care would be very difficult and expensive. Hospice care at home for a few hours a day or in a hospice nursing home should also be possible. The real problem for you is that he will refuse either option. You are going to have to have him declared incompetent to make decisions or divorce him in order to get out of this situation. You -- and your children -- need help from a Social Worker. I suggest secretly tape recording some of rants and unreasonable demands for evidence of his abuse if it ever comes to point where evidence is needed.

This is going to sound awful, but keep in mind that his ALS is advancing and at some point he isn't going to be able to yell at you. He will still pee so you have to clean him, but he will be unable to stop you from putting disposable pads under him or using adult diapers. You will no doubt find it easier to care for him then.
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Old 07-11-2016, 04:51 PM #7 (permalink)
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Default Re: I'm done.

Quote:
Originally Posted by Tracy500 View Post
I'm done with this caregiving duty. I will not take anymore of his meaness to me. Are there places where pals can go live? Like in a nursing home? Or will the state take all our assets to get him in there! I cannot do this, I had someone come the other night while I was out, he refused to let her have him go pee in the urinal. Instead he peed himself so I had to clean him up when I got home. Again today, he was mad at who knows what so he peed himself, making me clean up again. Depends we try if he lets me put them on only sometimes, but he goes thru. I'm seriously considering leaving, but I rather have him move out. This is my home with our children. Any help please?
There are ways to transfer your assets so you won't take as big a hit to get him qualified for Medicaid. It is a quagmire of regulations and I would seek the advice of an elder care attorney. There are also people who do Medicaid advising. And yes, nursing homes will take ALS patients. However, I would advise against it.
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