Caregiver Resentment

[Bujy]

So, I'm getting all these feelings inside me. I am disappointed more of the family isn't helping out. I 'm disappointed with family because I think they're not taking this seriously. I'm disappointed with my FIL because he's not putting his foot down to my MIL. I'm disappointed with my MIL because she is taking acting like the world revolves around her. She may have ALS, but it's no reason to be an ass. I'm disappointed I'm the only one who stands up to her.

I have a great deal of respect for the family and what they're dealing with. It's very hard seeing someone you love go through this. And everybody's family contribution is different as we as individuals are different. My husband takes care of the kids when I'm helping out his mother. That's a big help. I couldn't do it otherwise.

I wish things could be done MY way. I want my MIL to move into a one story house to make it easier on my FIL. She says she wants to go into a home when her husband can't take care of her anymore. Does she realize how much this all costs? Holy Moly! I wish they'd get in more homecare.

I want thigns done my way. HA HA. I'm reading up on this post and am now kind of rolling my eyes at myself. I sound terrible. I was going to delete it, but decided to post anyways.

If I can't whine and be a baby to you guys.. then well, I'm lost. And I know I can so.. for that I thank you.

*giggle*

But in all seriousness, I do get resentful sometimes. And I've learned it's OK. I've learned to ask for help. I've learned it's OK to tell my MIL she's being rude or disrespectful. Regardless of your illness, it doesn't make it right to act and behave poorly. I firmly believe in calling people on it. You know, I think she actually appreciates it. I treat her the same mentally as I ever did.

Hope you all have a good weekend.

 

[joelc]

I sympathize with what you are going through. I have often talked to a PALS and reprimanded them for being hard to get along with. There is a lot we can do as PALS to ease the pressure on the people who take care of us. But please also remember that she is the one with ALS and there will be days she will find it hard to be happy. Having to give up our independence is particularly hard for some.

I never wanted to sell and move either but I initiated it because of my wife and my desire to make her life as easy as possible. I would love to talk to you and/or your MIL with the hope of explaining a few realities about life with ALS. It can be great if we deal with it appropriately. Hang in there and may God Bless you as you strive to help her!

 

[Carolan]

Oh, I am sorry that you are feeling frustrated. It's always hard to get people to do things the way *we* think things should be done, but it's even more difficult when we see others struggling because they want to do things the hard way. Just keep in mind that your father-in-law could speak up if he really wanted to. And I have learned that some family members are just not emotionally/physically capable of helping out with things. Sometimes I feel like my life is a dream, but I tell myself every day that there is a reason my mother and I are going through this. I don't yet know what that reason is, but God will let me know when the time is right.

 

[Bujy]

I just spoke with my MIL about some of my feelings. She LOVED it. She says that everybody shelters her from themselves. She says there's not much she can do for folks these days. But she is a great listener and can offer her input when asked. I never really thought of that. She wants to be helpful and do as much as she can. She can still talk great and listen. It was really nice. We ended up talking about all sorts of things.

And Joel.. while I agree that a PALS may not be happy and cheeful all the time, I still believe that there is no reason to treat others with disrespect. No reason to be ungrateful, etc. I am empathetic of the situation and circumstances and let lots pass. However, doormat I'm not. And I think many people respect that treatment.

 

[joelc]

I think you misunderstood me, I was not reprimanding you at all!

Please re-read what I wrote.

God Bless!

 

[Felicia38]

I can relate. My husband has not officially been diagnosed yet, but he is already taken things out on me. We have always been so close so this is a little confusing. He takes everything I say and do wrong. Example-- If he sees me cry than I am being selfish because he is the one with the als not me and if I act happy he responds that I just don't care because I am so happy. Yesterday I thought maybe I could get him to go watch a movie with me, get him out of the house, because he hasn't left the house in about 5 days. I was not showing any emotion, hoping that would make him happy, but he said to me "why would I want to go to the movies with you when you have hardly spoken to me all day" He had only been up for about 2 hours and during that 2 hours I had made him breakfast, worked out, and took a shower. I looked at him like he had just slapped me across the face. I know he is going through alot but it is frustrating been the caregiver and feeling like nothing you do is right. As close as we are, this has really came out of left field so to speak. I guess he is just so depressed because we go to Emory in the morning and I guess then it will make it more real to him. Anyway I know I have got to find ways to cope if his moods are going to be like this because it is hurtful when they lash out at you. I know he is the one going through it but I also am hurting and I feel like I have to keep all of my emotions bottled up. Thanks for letting me vent.

 

[patricia1]

I feel for all the caretakers you have a big job.but i would trade places anyday with you .you all complain alot,but we are the ones living this nigh tmare. If you feel overwelm ask for help.i dont enjoy seeing my husdand upset everyday with me.but i am the victim .you still can do everyday task.that all has been taken away from me.and i am not allowed to complain because i dont want to upset him or my family,and thats not easy.
So the next time you feel overwelmed remember how lucky your not the one with this horrible disease
pat

 

[hopingforthebest]

caregiver

Dear Pat

I agree, we have no idea what it is like to be the person with ALS but it has broken our heart to see you go through this ordeal and sometimes I think, the caregiver complaint page should be a section that PALS could not view.
The first time I complained about something with my husband, a dear friend said to me, he has ALS, but he is still a man! Wow! That was so true. I was holding everything in and treating him as the "ill person" and not giving any regard to my needs etc.

My husband is the best PAL ever, and I mean that. He is appreciative all the time but there are times that my (old life!) needs seem important and I feel "I never signed up for this" kind of attitude but of course his needs are first and I snap myself right back to reality.

It stinks for all of us and every day I pray for a miracle and a cure for ALS.

We love all you PALS and forgive us when we whine!

 

[joelc]

Personally I think it is harder on the caregiver than on us that have ALS. For the caregiver to watch us loose our abilities to be as we were is not easy.

There is also something else for CALS to remember, that this unnatural behavior sometimes is not controllable for PALS, so don't take it personal. I know that is hard but there is nothing some PALS can do to stop it. The order of progression is first our nerves go, then our muscles and then our emotions. We have no control over this. I sometimes really struggle with dealing with things that never use to be an issue and react wrong. I am aware of my new inability to deal with things so try to avoid them as much as possible. But when I can't everyone knows this is not something I can do anymore so they try to remove me from it.

I am also aware of my inability and fight not to lash out! So far I have been successful in not being nasty to those around me but it is hard! Not many PALS can control this or recognize what is happening.

There are also PALS that turn just plain ugly and need a slap across the head!
So, CALS please be aware that your PALS might not have control over this and discuss it with them, don't take it personal as hard as that will be!

God Bless you all, you are all angels in my book!

 

[Danijela]

When you love somebody as much as I love my partner the fact that he has ALS and not me, is just a minor detail in the entire story of how it has impacted on our lives, our hopes and our expectations. For us, this is an adventure we are flying through together.

 

[BarryG]

Hi all, It is hard to be either the carer or the caree. While it's true that the CALS don't always know what is going on in the PALS head the reverse is also true. The same is true in relationships that don't involve ALS. There are many reasons why relationships break down but one of the most important is the breakdown of communication. So if you throw in a disease that by it's very nature makes effective communication difficult things are going to be worse.
My wife and I have talked (sort of, she talked and I mumbled) recently about me having anger episodes and while I know that they help no one especially me they can be hard to control. I have always been a "handy" kind of guy and I keep thinking of the Red Green saying "If the women don't find you handsome they should at least find you handy". So realizing that I'm not even handy any more causes me a lot of frustration because I have to hire someone to do the things that I had fun doing before. And I can't even explain how to do it so it's even worse. Oh well, life's a beach and then you dive as the scuba divers say. Take a deep breath and get on with it.

A little empathy and understanding goes a long way for everyone and no slapping allowed (unless they need it)!

Barry

 

[mndireland]

Is it ok for me to agree with everyone on this! Im my mums main caregiver, and although hard at times, rewarding at other times. I do feel Im getting more than my siblings by spending most of my time with her, but like everyone else, I miss my old life. I used to be out partying Thursday- Monday, holidays 5/6times a year etc. But I wouldnt want to do these things now, as the guilt of an afternoons shopping trip can take days to leave you!
In the beginning mum had a hard shell on her, and her attitude was, well I looked after you for long enough, its pay back time. It was difficult looking after someone with a bad attitude and I felt well why am I doing this at all? But over time, things changed. She is easier now to look after than in the beginning. She does feel guilty waking me in the night for something, and calling me all the time. At the start she called me for everything, i want i want i want, now its me saying, are you ok, do you want anything?

I guess what Im saying is, we all have bad days, PALs and Cals, but we need to hang in there, we are all thinking of our loved ones! Some nights now, I put her into bed, trying for a long time sometimes to make her comfortable, hearing the sounds of her trying to gasp breath and her sad eyes over the face mask, I usually end up running into my room for a cry! It is soo hard watching a loved one suffer infront of our eyes. We are basically wathcing them fight for life and slowly die infront of our eyes. But it must be unimaginable for the pals, how do you come to terms with it!
My god im making myself depressed now. So going to sign off!

 

[liz]

I don't understand why it is OK for CALS to complain in great, gory detail about how horrible it is to be a caregiver and how difficult their PALS are; but, not OK to suggest that CALS are anything less than saints. Maybe some of you CALS would feel better if you lightened up and quit acting like martyrs. If you're giving off negativity towards your PALS, that's surely what you'll get back.

 

[brooksea]

Hey Barry! You are still handsome dude! And you are very handy on this forum too!

Thanks for the post! I liked it!

 

[joelc]

I don't mind, and actually sympathize, if CALS vent about how mean and unappreciative their PALS are. Sometimes PALS can be down right nasty and unreasonable. This is unacceptable behavior for a PALS. But I have read about how some CALS are resentful that their loved one has ALS and I don't find this acceptable either! Yes, it has upset your life but what do you think it has done to your PALS?