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shelly2612

Distinguished member
Joined
Aug 31, 2008
Messages
119
Reason
CALS
Diagnosis
09/2008
Country
US
State
Ohio
City
Waterloo
My hubby was diagnosed october of 08. He is now in the stage where he has lost the use of his hands and arms, neck is weak, his legs keep giving out on him, he keeps falling, and he is getting more and more frustrated. Don't get me wrong I understand WHY he is frustrated. He keeps coming up with more and more projects, in the last two weeks, I have been a chauffer,plumber, carpenter, ditch digger, lawn professional, painter, mechanic, and who knows what else, while doing all this I have been his primary caregiver. You can't leave him alone, he stomps off and ends up falling down and hurting himself, yelling til he is blue in the face for help. This attitude he has developed over the last couple of weeks is getting OLD fast. He won't even let me go to my neighbors for 15 minutes. I am burning out and fast, he refuses to let someone else come in and help us out. We qualify for several hours a week help and he won't let me accept it. I am at my wits end, and I can't EVEN imagine how frustrated he is. HELP
 
Oh Dear Shelly,
I'm so sorry you are both going through this! I know you KNOW this, but...you need to just walk away and take 5 minutes when he gets out of control. Make sure he's safe, and just say, I'll be back in 5...walk outside, breathe, and just pray/remind yourself what he is going through in his heart having to face this monster of a disease. He's losing his physical self...and quickly, now. That has to be so incredibly frightening for both of you!

Do you have a close friend/pastor/counselor you can vent to? While I'm a believer in helping our loved ones remember not to use US as their "punching bag"...like you said-you understand it, but that doesn't make it ok. Hang in there. If you have the resources to have more help come in so you can get some time out, and then be able to be his WIFE too...that would be lovely for you both.

Prayers to you for courage and grace.
Peace,
Melody
 
shelly my husband the same he has been in chair for 5 years cant feed hisself for about 1 year now i have to his stuff and mine he keeps coming up with jobs. I am keeping up or trying to with my stuff and now his stuff . It has been 1 year since I have had 1 hour from him . I love him dearly but i know exacltly the way u feel u love them with everything in your self. I had a haircut last week first one in 2 years. nice to talk to some one else going trhough this i willremeber u in my prayers tonite.
 
<but Shelley. You are a person in your own right, just as important as he is. Why should his wishes take priority over yours, especially when his are not logical nor kind. Just DO those things; accept the help and bring them in. He is not going to send them away. You are his wife and his friend, NOT his slave. Melody is quite right. Why have TWO sick people in the house? That will help no-one!
Love and sympathy
 
Agree with the above advice PLUS please consider that they may be having FLD that can be associated with ALS. Maybe they need to be on antidepressants or have their dosage increased if they are currently on antidepressants. Have you called or visited the medical people that are following him or your ALSA Nurse? That is what I would do first! My husband also makes "lists" of what he wants me to do. Sometimes I do them, sometimes I don't. I think it he does it because he is just so damn frustrated by all that HE can not do anymore and the fact that there is just so little in his life that he can control.
1. Call his medical people and see if they can assist with changes in medication.
2. On Monday, arrange for assistance in the home [if you have those services and can afford it!] They do NOT get a vote. Do it. If they say anything just tell them it is for your well being and then LEAVE the house and do something, anything for you.
3. General Durable Power of Attorney Do you have this document? It is different than a Medical Durable Power of Attorney and you need to have this document. If you do not have this you can get a free one online or see your attorney. Critical and necessary legal paperwork. Here is a link for free online forms that are legal in most states Do Your Own Will | On-line Wills We had our bank witness and notarize the completed forms.

My husband has had personality changes. I find it sad that the literature states there is no mental involvement when there has never been any statistics gathered to make that statement. My husband use to be the most PATIENT and gentle soul. He is now impatient beyond imagination, easily frustrated and quick to become angry. Increasing his Paxil has helped very significantly. We had one episode several months ago of a out of the blue RAGE episode. It was VERY SCARY and it takes a lot to scare me! I am grateful it was only that one. When he calmed down the next day, I told him that IF he ever behaved like that again towards Matthew and myself he would not need to worry about dying from ALS! That behavior is unacceptable and never again! I did ask him if he thought that he was in control [he didn't appear to be] and he said that he was and that made me mad as hell. The diagnosed of ALS does NOT give them the right to abuse us or be mean to us or to be self centered and selfish unless we allow it. Sending you hugs filled with courage today from the Prairie! Kay Marie
 
Thank You all so much for the reply's. I was so frustrated yesterday when I posted that. I love him with my whole self. I know he is frustrated, and he just now told me why he has been in such a mood lately. His children won't come see him. They won't take the time to just spend a couple of hours with him. He also told me that he doesn't feel safe wakling by himself anymore. He is fighting with everything he has to stay out of the chair. Yesterday after I posted to the forum, he stomped off and tried to go down the steps instead of the ramp, guess he was just so mad he forgot he couldn't do steps. Found him laying in the yard, hoarse from calling for help. This disease is horrible. I am thankful that I have a place and people who understand what is going on. Thank You all. Your all in my Prayers. Shelly
 
Hope tomorrow is a better day! I know what you are talking about.
 
My wife treated me like s**t for the last six months of her life. When I confronted about it (many,many times) she looked at me like I'd lost my mind. The kids saw it though and kept telling me "that's not mom" so it wasn't just me being sensitive. I'm sure, like has been said above, it's just the frustration on the part of our PALS (and probably other stuff given all the medications) but it sure makes a bad situation worse.
Dick
 
Got to get him in that chair. IT's FUN. When no-one is looking I am working out a dance. Kind of limited but ti IS fun,if terrifying and exhausting at the same time.
Tell him there are two ways of fighting. A stupid (choose your own more tactful word) way, like he is doing, harming himself, and a sensible way, saving what strength he has for positive things instead of falling down steps. A chair isnot an admission of failure; it is an admission that you cannot walk well without putting tourself in danger. It gives you back freedom
Good luck, dear friend. If that does not work, hit him over the head an get friends to help you get him into the chair. HE will be amazed how better life will become for him
 
Oh, irismarie you make me lmao over and over! She just needs to hire your Gardener for a day or two!
 
Just punch him in the throat! :) Hi Shelly!
 
Hi Shelly - You are a precious precious soul! My mother is experiencing what you are. My dad has been in a chair since October. My mom is his main caregiver (I live 20min away and am his 2nd caregiver) and she is exhausted all the time. He has her cleaning the bathroom full force after everyone of his showers that she helps him with. She is the cook, maid, chauffer, physical therapist, lawn professional and it seems a punching bag. (not literally)

We, the kids, feel that due to the disease and what he is going through that we should give in to his every need. My dad feels that my mom should do all of these things and when the kids come by, my mom should not 'expect' us to help her because it is her duty. We offer to help and he says , mom will do it. She shouldn't expect a break just because you are here. He does not want to be a burden to anyone. Including my mother , but I think because she lives with him 24/7 that he lashes out at her.

My mom also says they are eligible for outside help to come in 2x a week to help give my mom a break. He won't hear of it. If mom is capable, then why should they have help? I don't think he understands the mental exhaustion that she is also going through.

kay Marie - You are absolutely right, They don't get a vote! Mom is going to lose it , if she doesn't get help. My dad has no use of hands, legs and can't feed himself. His neck is weak as well. But other than that, his voice works...and it works well! That is not always a good thing.

I appreciate your post Shelly..it has helped me give some advice to my mom in how to gain peace with herself and take care of herself. I think my siblings needs to read this post and get a better understanding that we don't have to jump to every need when he needs it if it involves projects around the house.

Any advice on how to respond to my PALS when he is demanding of projects and is verbally abusive to my mom when she says..later I will get to it? He makes her feel bad when she says that.

Suzanne
 
Suzanne, I don't know of any way to respond, except bluntly. He must be made to understand that Y'ALL understand he has lost a lot and can no longer control how things are done around him and around his home/house. But, your mother is not TWO people, nor is she THREE! You must tell him that he will have to be patient and allow all to chip in and help or your mother will no longer be able to do a thing and he could end up in a respite care facility until she regains her sanity!

Believe me, I know what y'all are talking about! I was in tears the other night, as the day had just gone so horribly. My husband has been working on a computer (hardware) and that requires fine motor skills. I guess he thought since I had sold the components years ago that I should know how to put the thing together (we're talking from scratch!). We've been trying to build this thing for a week. He gets so frustrated because I don't understand what he is talking about...He has Emotional Lability and hasn't been taking his Lexapro, plus coming off Lithium. What a bad situation! But, I lived through it and the next day was better. Now he's upset again, because the people at the store sold him the wrong memory sticks! I just plain told him today, "Please don't be in a bad mood!" His response was, "I'm not!" LOL RIGHT! At least he settled down... I don't like walking on eggshells at all and I'm not going to.

My husband has tried to get me to mow the grass with his monster-pro-lawn-mower. Not gonna happen! He refuses to part with it, so the grass will grow til he can cut it one last time on his baby and then he'll have to part with it and get a manageable mower for me. I can't imagine how that must frustrate him, but that's the way it is!

It is hard for him to live vicariously through me! LMAO!:twisted: So tell your pALS it will be absolutely impossible to live vicariously through cALS! Seriously!
 
Yall quit being mean to your pals!;)
 
Yall quit being mean to your CALS !
 
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