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I don't want to be like this, how do I change?

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If there things that need to be done put a time frame for him. Make a list of his requests and tell that is on the schedule for so and so time. Then DO it at that time. Make the schedule with him.
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Reply to PatienceSD
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Imho, I wouldn't necessarily agree with a comment made by your husband not of lucid mind, i.e. you may not be "angry and put out." Prayers sent to you - ALS is a horrid disease.
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Reply to Llamalover47
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ALS is horrible. It's just as cruel as dementia, imo. I can't think of anything more challenging really, because, the patient's mind is still fine. I sure do feel for you and your husband. ASAP, get a consult with an Elder Law attorney to find out your status and ways to proceed to optimize the services and benefits that may be available. Many attorneys are working remotely right now, doing consultations by phone or internet. I have found that when you know your options and have more control over your decisions, it helps with the emotions. Caring for someone who has ALS is really a full time job for 3 people, so, I'd explore ways to move forward, so you can get the rest you need and he gets the care he needs. I'd try to validate what he's saying though. It's important that people who are losing their abilities are able to voice their concerns and have them addressed.
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Reply to Sunnygirl1
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this is so difficult. I have these issues with my mother who I never had a great relationship with in the first place. I realize as she has dementia that she is very sensitive to my mood so if I seem put out she reacts strongly. Teepa Snow videos have helped enormously - and I am also a fan of the twelve steps found in AA, al anon, Coda, etc. Simply put: I try to replace my attitude with gratitude? Easier said than done, but it is the answer for me. A constant: "God grant me the serenity to accept the things I cannot change , the courage to change the things I can and the Wisdom to know the difference". Also I know people not doing the steps but using a daily gratitude list to stay centered. I hope this helps and pray you find serenity at this trying time.
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Reply to momzac
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Take all the good advice you’ve gotten here to improve your situation and start the self care that will help a lot.

In the meantime, when you interact with your husband, try “singing” your answers to him! It will put a lilt in your voice that erases any hard edges and it can be fun!

Lets face it, attitude is everything and in anything you do, so be your own Pollyanna. See the bright side and have a laugh now and again.

You‘ll soon see that smiles are contagious and the whole room will respond favorably. (You will too!)

Goid luck,

charlotte
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Reply to CharK60
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First of all - is the statement true?
Are you feeling tired, put out, angry or stressed? If so, then is probably comes out when you interact with your spouse. If this is so, get extra help from others so the burden isn't always on you. Take time to do things you enjoy and that give life meaning. Try to include your spouse in doing things together - within his limitations. If you feel frustrated or angry, talking to others in a support group format helps... like this one

Next - is your spouse feeling frustrated by lack of ability?
He could be the one angry and put out with the confines of his disease... and he is projecting his feelings onto you. Talk to his doctor about what you are experiencing. Maybe your spouse has depression and would benefit from medication or talk therapy.
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Reply to Taarna
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It must be very difficult. If I look at my loved one as a 'baby', I'm more understanding. Remembering the dependency erases the frustration. I was never angry with my toddler for not speaking clearly - I would understand their lack of ability and simply help them with their abilities. I wonder if you could simply visualize him as a baby or a huggable baby rabbit. You'd enjoy doing it more and come off more loving.

Personally, I 'snap' and release my stress more when I am multi-tasking too much. If I am doing something for work and then my child ask for something, I sorta unconsciously 'huff.' Being fully present with each task helps me keep stress away.

If you have multiple responsibilities, could you 'schedule' helping your husband? So, every 30 minutes you ask what he needs instead of him being forced to interrupt you and ask for something. Then, he'd get a need met when you are able to be more patient.
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Reply to Fielding
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Uhm, it isn't the OP's spouse who is angry, it isn't the OP herself (or at least it seems that way to her DH). And believing that your sole support at this time hates to be with you has got to be as gut wrenching as having to deal with the inevitable physical losses.
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Reply to cwillie
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My good friend's DH passed away of ALS in 2012. She reached the point where she could no longer eat food when he was present, and had to hide away in her bedroom so he wouldn't see her eating. He, of course, was unable to eat and was very angry that she was able to eat, and let her know that fact at every possible moment. He did not want her to eat, since he was unable to himself. She lost a lot of weight as a result, and was getting pretty unhealthy, both physically AND mentally from 24/7 caregiving in such a stressful situation.

Does your spouse expect you to be dancing with joy all the time while taking care of his every need? While watching him wither away on a daily basis? He's asking an awful lot of you, if that's the case, let's face it. This disease robs EVERYONE of their lives, not just the person who's suffering from it. YOU are a victim of ALS the same way my good friend was a victim.

Take time out for yourself; get away from the scene as much as possible and tend to YOUR needs so that you don't get sick. Right now, unfortunately, you can't get out and have lunch with friends or go shopping, but you can immerse yourself in book and put earplugs in your ears while you take a long, hot bath.

You're doing the best you can under very stressful conditions, I'm sure. Try to put a smile on your face and in your voice when you interact with your spouse, and leave it at that. You ARE angry about this situation, as your spouse is, and I'm not sure there is an 'answer' for it. Nobody should have to suffer like this, it's unfair and it flat out sucks. Maybe if you both have a chat about the reality of the situation, you can both agree that you're on the same side here and doing your best in a tough situation.

Sending you a hug and wishing you good luck & Godspeed moving forward
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Reply to lealonnie1
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I’m so sorry this disease has happened to you .My husband died in January of ALS in January .A lot of ALS patients have frontal lobe dementia , it definitely changes their personality .My husband’s started with his voice , and then swallowing .He told me he felt trapped in his body, and he was . He was always so active and capable of doing anything . The last few months in hospice he was so withdrawn , and it hurt me . I just kept reminding myself of all the great memories we made , I know exactly what you are going through .It is overwhelming .
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Reply to anonymous1008856
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I am going out on a limb here... maybe your husband isn't angry at YOU, but angry of his need for you? That he is taking his anger out on you because you're there and you're the safest person? It's like when teenagers rage at their parents... it's bad, but the teen feels safe enough with the parent to let things get ugly. They know the parent will love them regardless.

He's mad that he can't do for himself and may feel like he's a burden. And as much as we love someone, having to do everything for them 24/7 will wear us out!

It's not he's mad at your reaction of what he needs done, so much as he's mad at your having to do them.
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Reply to LoopyLoo
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jacobsonbob Mar 31, 2020
LoopyLoo--It's not that the husband is angry at vvowles--it's that the husband accuses HER of being angry.

Of course I don't know them, but there are people who sound angry even when they aren't--I've known a couple older women who were like this, having voices that made them sound "crabby". One of them had a dry sense of humor, and anybody watching her would think she was a horrible person--until she broke out in a big grin after saying something! (Sometimes those of us who knew here well started laughing even BEFORE she grinned!)

However, I suspect this caretaker is frustrated, and to some extent it comes out in her voice. I know I sound horrible at times!
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The only person I knew with ALS his wife was an RN. She was trained in caring for people. But, I think she also had friends and family near by. She was still able to go to Church. Take him to dinners at the Church and out of the house. Friends would come and sit with him.

Give him a hug and ask that he be patent with you. You are a layman here. You also, need sometime to yourself. There will come a time when he will need more care than you can give. Its hard being at the beck and call of someone. Just as you finally get to sit down, they need something. Not all of us are Caregivers.

I would look into Medicaid now to see what ur options are. You will be the Community spouse and as such will not be made impoverished. Your assets will be split and his portion spent down before Medicaid will pay. U can remain in the home and have a car. You need to get ur ducks in a row. Have DH assign u POA if he hasn't. Being his wife is not always enough. Have a will even if its just what urs in mine. DNR in place. His medical POA should read like a living will.
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Reply to JoAnn29
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Guess what? You are allowed to be angry. Don’t let anyone make you feel bad. Clearly you’ve got a lot on your plate. I agree that you need to bring in outside help so that you aren’t doing everything for your husband.
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Reply to worriedinCali
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My family used to tell me I was always angry although I never noticed it, or at least I thought I had it under control - it was a sign that I was burning out. You NEED more help and more respite time - I'm sure that other forum members will be along shortly to tell you how to go about finding it ((hugs))
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Reply to cwillie
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It sounds to me that you have too much on your plate.  Can you get a family member to help, can you afford an aid, even part time?
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Reply to FloridaDD
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