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 The last few months in hospice he was so withdrawn , and it hurt me .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 .
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
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.
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!
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!)
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.
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))
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.
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.
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.
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
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.
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!
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
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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