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rocmg

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i've been going through a stage of great anger with my mum recently. whenever she stumbles or chokes on her food or just looks weary, my first reaction is to get angry and blame her for getting worse. i can't handle her progressing, and i feel like i'm losing my compassion. i feel like "why can't you just stop this happening -- try harder and you'll overcome it." of course it's totally horrible and unreasonable, perhaps i need some kind of therapy to help me work out these issues. i don't want to be like this! in my heart, i know she can't help it.

i've found myself saying things like, "you're a danger to yourself, you need a wheelchair" which obviously upsets her a lot since her mobility is something she is glad about.

but i also get angry when she doesn't sleep. she maybe has 5/6 hours sleep a night and then wants up to sit downstairs, looking miserable and tired when she should be in bed resting and getting proper sleep.

argh! i just want so badly for her to be better and it's not happening and i know she's going to die, possibly this year. why can't i cherish this time with her and love her better? i will regret these feelings for the rest of my life after she's dead.
 
Oh, I can relate to what you are saying, although my dad is not as far along as your mom. Don't beat yourself up over having these feelings hun. Its all built up anger, frustration, grief and denial. It's a whole ball of emotions trying to come out in one way or another. Ya need to take a step back if you can. Take a breather hun. A nice break will do wonders if you can pull it off. Can you get someone else to take over for just a day or two? It would do you wonders, let you gather your thoughts, try and gather your emotions and come back refreshed. I know its so hard to live in the "here and now" when we are always worrying about the future. Its more easy said than done. If you need to talk, I am always here for you!
Gentle Hugs,
Kari
 
sigh.. please don't feel bad.

I love my husband, but we have the same issues as you.

It is, of course, different when you tell your spouse off than your mum. But, tough love has to work in this case. (LOL not working in mine!)
 
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Oh CJ is so right, when it is your hubby or significant other, or a child for that matter it would be much easier to rant at them. Having a parent with ALS is completely different in how we can handle it.
 
Hi, rocmg-

I am so sorry for what you are going through with your Mom. It is so terrible for anyone, but particularly hard for a daughter/child to go through this.

The conflict of emotions is something we all share, though. I posted exerpts from an article I read about "compassion fatigue". You can search for compassion fatigue, as it has been discussed; but particularly the thread "burnout and stubbornness", that is where the article is posted.

Are you still doing all of this yourself, or do you have help? You know how important that this, this is not a one person-caregiver disease.
You must reach out and get help so you can take some breaks. Posting your thread here is a good start- just getting yourself to talk about what you are feeling!
Getting some time for yourself won't make your Mom better; but it will help you to cope better, so you can enjoy your time left with her

Please look at all that you ARE doing for your Mom. You are doing a wonderful job- more than anyone should expect. Realize that what you are going through is part of this disease as well as what she is going through.

I wish you peace-
Marianne
 
I can relate. My husband walks around the house with his walker making a lot of exasperated sounds. I know its because he is in pain but I just want to scream at him sometimes. I don't though, I just leave the room or focus on something else. I have the patience of a saint (thankfully).
 
i do the same thing with glen.like when he is eating and swollowing he makes these sound.it drives me crazy.
 
i can understand the anger and such your going through this is tough.i have never heard my wife complain only i see sadness in her eyes watching me deal with als .frustration im sure does come but you need to have more focus on compassion then to get mad at her when you find yourself thinking that way just sit back and be grateful; its not you .thats just me getting straight to the point ,no need to make it sound sweeter
 
I spent a few minutes thinking about this and then ask my wife to read every thing on here. She agreed that there feeling of anger and frustration are natural for someone who may not only be having a difficult time accepting the facts but may also be experiencing burnout. She also agreed with what blubear said about getting away for a few hours. She also reminded me that I have told her frequently to go spend time with her friends and get out of the house. Sorry if I offended anyone i sometimes react before thinkking it through . sorry jeffp
 
Totally relating here! And Glen's FTD makes it worse... so when he's shoving food in his mouth WHILE he's choking.. yeah, I get mad sometimes. Or when I finally get a chance to sit down and catch up with mail or have a cup of coffee and he has an "I want what I want when I want it and I want it NOW" moment. And if I do lose it and yell (there is that Irish/German temper thing) he has taken to laughing. Yeah, THAT's going to calm me down.

Usually, I text my sister or my son or my sis in law to "talk me back from the edge". Sometimes I throw things. The grief counsellor and Glen's neuro both said that's actually a good idea.. so long as I'm not throwing them AT Glen. The situation we've been handed SUCKS. We are ENTITLED to be angry. The trick is to find a way to diffuse the anger so it doesn't consume us.
 
I would never want my husband to think these things about me? I only hope I am long gone before he feels like this. This is the main reason I don't want to go for any invasive machines to keep be alive.. I do not in any way think that you are wrong for feeling this way.. I think it is very normal,but it does just clearify my reasions for not prolonging this beyond my self taking care of myself.... Thanks for your honesty.. L
 
I find it disturbing that PALS are talked out of living because of all the complaining CALS do. I almost pulled the plug as well because of all the disturbing posts. I did not want my spouse to feel I have ruined her life because I am still alive.
 
OK, just to be clear.. at least in our case Glen was never talked OUT of ANYTHING. In fact I tried really hard to talk him INTO getting a peg. Tried to talk him into joining the drug trial he was offered. It was his choice, made early on when he was still lucid. All I am doing now is honoring those wishes made clear while he was still able to communicate clearly. It is better that we as CALS have a safe place like this to vent those feelings of anger and frustration than to internalize them and become ill ourselves!
 
Hey Joel and Jeff!

I think you may be looking at this thread wrong. We are "complaining" out of concern for our pALS! At least, that is what I have gathered from these posts.

For example: My husband has been negligent about wearing his BiPap at night and then wonders why he is tired all the time. Or he tries over and over again to eat a piece of roast or a salad and half chokes to death. This can become very frustrating for cALS when the pALS is stubborn and won't use common sense. I know it is very hard to give up life as it used to be and I want my husband around for as long as I can have him. But, it breaks my heart to see him suffering more than need be. That is when I give him a piece of my mind in a loving way!

I have been the one to research everything regarding ALS for my husband and advised him to get the PEG, the PWC and now the speech device before he absolutely can't do without. Hopefully I haven't given him any bad advice.:smile:
 
Let's not forget too that being a full time caregiver is both physically and emotionally draining. CALS get tired and when a person lacks sleep they become less able to be cheerful about taking care of someone full time. This is nothing against our beloved PALS. Like Katie, I had to really talk my PALS (my dad) into getting a feeding tube. He did not want to prolong his life only to lie motionless in a bed, which is sadly what he is experiencing now. My dad was adamant about not wanting to be kept alive if he was completely incapacitated. That is his right. I doubt that anyone one of our wonderful CALS here on this forum would even dream of "talking their loved ones out of living" for their own convenience.

Also this is the caregiver section of the forum where caregivers come to share with one another the trials and tribulations of being a caregiver. Just like PALS might complain sometimes about their CALS, for example... hm let me think of something, oh yeah I got one: for example if "CALS ask too many questions in a row" that might annoy a PALS wouldn't it?

We are all people dealing with a monster disease. Whether PALS or CALS it ain't no picnic for either side!

Rocmg, you are a young woman in her 20s who has given up a dream job in New York City to be your mom's full time caregiver. I wish someone like Oprah would give you a car and a trip around the world. You definitely earned it. Of course you may feel resentment from time to time. You need help. You shouldn't be handling all of this alone. You got some great advice already but I would like to really really emphasize what an exceptional person you are!

Rosella
 
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