Please CALS. Help me help my CALS help me!

[Green Queen]

I feel very...betraying...to Wayne to post this. He doesn't read the forum...but it's hard to admit this kind of stuff...
I need help in getting him to help me without me having to nag or ask all the time!
He often says he's not a mind reader, but as an example, I've needed help putting my knickers on for nearly 18months...should I still have to ask for help when he's in the room? Seriously...do I? Am I expecting too much? This isn't a rant...I really don't know!
He's great in the fact he doesn't stress over clean washing all over the lounge, but doesn't think to fold when he's watching the telly.
He works very hard, 12 hour shifts at the port, so am I expecting too much?I don't cook anymore, washing dishes is beyond me now, but I empty/load the dishwasher, the bin, tidy benches...
He will put ONE load of washing on..........I take it out of the machine to wash more. The kids and I hang it out and bring it in. We are trying to fold as we take it off the line, but that's dependent on time of day, weather etc.
I'm not really complaining (too much!) because he really has grown immensely since we got married. Back then he couldn't even cook toast!
He worked on mine sites for a long time. I didn't work so had ample time to do everything so when he came home, it was purely family time.
I don't blame him...I just really need to know how to help him! My hand is getting worse and worse (he doesn't deal well with progression) and I want to keep home life as positive as I can.
Help!
God bless, Janelle x

 

[MaxEidswick]

>I've needed help putting my knickers on for nearly 18months

that wa why I had to quit work :-(

maybe tmie for a heart-to-heart talk hard as that may be ...

 

[BlueandGold]

Janelle,

Max is right. Time for a heart-to-heart. You stated that he doesn't deal with progression well. That probably means he is denying that you are actually getting a little worse. Communication is the key to keeping the partnership going. Once you start talking, he may open up and get some things off his chest that may be bothering him. If you can talk it all out, I'm sure things will get much easier. I can tell you I have times when I try to be very independent and I sometimes get a little irritated when my wife constantly steps in to "help" me, but we always talk through our feelings and that gets us on the same page.

Best of luck to you,

Vince

 

[Atsugi]

Janelle, you're not betraying; we all need someone to talk to, and we're here for you.

I know exactly where Wayne is coming from. He's a man, and there are two things we don't do well.

First, we don't see other people's needs very well. What's obvious to a woman is invisible to most men. He'd help you out if you simply ask quietly. "Honey, help me with my pants." That's not nagging.

You see, we're taught to be self-reliant, so we rarely ask for help. And some of us learned to resent it when others offer help. We don't want help, and so we assume you don't either. You have to ask.

Second, we don't take "clean up" very seriously. Many of us are quite happy waiting for others to clean up, if we care about chores at all. We learned as boys that playing in the dirt is fun, and we hate to clean up. It's practically a punishment!

But we take our duty to support our families very seriously. That's why we pride ourselves on our work. But his long hours are not enough now that you're sick. Ask him, when he's happy, to provide more support now that you're ill.

 

[Nikki J]

Above all true but given the fact that you apparently have a form of PLS not ALS you have a different and longer road than many of us. Can someone work 12 hour days and come home and do more and more housework ? Of course but add to that more and more physical assistance and a diagnosis that is not terminal it is hard and going to get harder

Everyone needs to pace themselves here. You need to not overdo, your kids need to help and not be overwhelmed and your husband needs to work, help you and pitch in around the house. You all have a lot of challenges. Sounds like what you are asking of him is not too much right now, the kids are doing ok and you are taxing yourself. So maybe when you talk you should also explore whether you can get help. I don't know what outside assistance there might be but a couple of hours a few days a week of homemaker services could really take the pressure off. And is it possible to get a clothes dryer? Then maybe the kids could have the job of folding instead of hanging and bringing it in

 

[lgelb]

Janelle,
How long is he going to be able to work 12 hour shifts away from home? How old are your kids, how much can they help and how much do they know?

I suspect he is thinking about these things at work, however hard he tries not to, and stressing out. (The short answer to your question, is no, you should not have to keep asking for help w/ the same things if they are daily tasks.)

I would have a planning meeting with him and then the two of you w/ the kids. Subject: how your lives are changing and the best ways for everyone to pitch in and support each other.

Having been married to the "I'm not a mind reader" type, that's code for "I'm having enough difficulty with what's on my plate, to deal with yours." Yet every PALS has the ability to lighten the load for every CALS, by proactively acknowledging what is most difficult: coming to terms with a moving target (progression changes life unpredictably) and the fact that, unlike every other illness or injury you have had, there is no getting better. Two is much better than one in dealing with those hard truths.

 

[LifeEnthusiast]

Janelle, you are not betraying Wayne at all. You are a caring and compassionate woman who is trying to get the advice she needs in order to look after both needs; yours and Wayne's.

I honestly can't add anything more valuable than what everyone has said above. But I want you to know I am thinking of you and I am here for you. You have been so wonderful to me and are definitely intuitive. Trust your instincts and take note of what others have posted -- such smart and honest advice. Sorry I can't add more.

Big Hugs. Cee

 

[cheerleader]

So many good thoughts. Mike has hit the nail on the head I think. Men ARE from another planet,and what seems obvious to us isn't to them. Remember,women have been nurturing all their lives, so we ASSUME men know how as well. Sounds like he is doing a gigantic job working long hours and helping. We DO want our men to know without being told but----
Frustrating for both of you. Hugs. Donna

 

[azgirl]

My husband is amazing and would do anything for me, but it makes me crazy that I have to repeat the same requests every day. It's so obvious...but not to him. Mike is right.

We just do the best we can. I try to get others to pitch in to give him breaks and that helps tremendously.

 

[Barbie]

Since you always kept the house and you are there all day, you see the mess more. he doesn't and the clean doesn't mean much to him. you will problably have to lower your standards. but yes, have a sweet talk with him, he will have to do so much more as you progress and this will be hard on him. Some people call it a "come to Jesus meeting"--when you lay out the truth with no holds barred. you have to tell him it makes you crazy to have to ask for the obvious like your knickers.

is there anyway you can have a housekeeper come once a week to clean and do the laundry? then that will not be on him and you will be happier too. (housekeepers always do a better job than husbands anyway)

I am giggling--I can't believe that I wrote "knickers" instead of underwear.

love you!

 

[Gembead]

Hi Janelle, I'm sure you would be eligeble for some home help, is Wayne getting the carers allowance, ok it's only $112 a fortnight but that could be used to pay for some home help. Be upfront and honest with him and tell him lovingly what a great job he has been doing and explain what else you need help with, the kids are also old enough to help around the house too, letting the kids know how much their help around the place makes things so much better and means so much to you. Hug to you Janelle, sometimes thinking about bringing up a conversation is harder than actually doing it.
Love Gem

 

[zoohouse]

Janelle, this post has actually been a help to me. Obviously I am the caregiver, and have no problems with that, but do expect Tim to do the things that he is capable of and that is see and talk. It has been quite irritating to me that I seem to be the only one that notices that his son has some problems. He always tells me that he didn't see what I was talking about, which amazes me because it was right in front of him. For example still in his PJs at 6pm in the evening, hair greasy and all over the place, and doing stuff in the yard.

What Mike said hit home with me. I read a book called men are waffles and women are spaghetti, which covers the differences between us quite well. Men compartmentalize and while in one box be blissfully unaware of anything outside of it, allowing them to have single minded focus. A woman's mind is like spaghetti, everywhere at the same time, that way we can do one thing while being aware of what our kids are doing, and planning what the next thing is that needs to be done.

Do you belong to a church? My church has been a God send and I have actually had to turn away help as there are so many willing to give of their time and energy. I know how hard it is to ask for help, but from what I have seen on this forum you are more than happy to help others and may even consider it an honour, give someone else that opportunity to give.

You will be in my prayers sister, and know that our Father will provide. Blessings.

Paulette

 

[Green Queen]

Thank you so much for the encouragement and support...it means so much to know that what we are going through is quite normal.

So, Wayne has had bronchitis and I have the flu, so to have a heart to heart (max) has been difficult...to be honest it was more me crying and carrying on, but I truly think we are back on the same page (Vince, Cee). We normally are, but sometimes I like to flick to see where we are headed...Wayne doesn't!

Mike, you and Wayne must be kindred spirits...he could have so easily written your post! One of my favourite expressions is 'turn it around ', to try and see things from another's point of view...something (Laurie) that I talked to Wayne about. Yes, I have started saying to him 'help' but there is definitely a time when I want it to be second nature (Donna, azgirl)...baby steps I guess.

Nikki, gem, Paulette, barbie...I have just organised a Christian lady to come and help me do...stuff. You know the stuff blokes don't see, like clean out the pantry, linen cupboard, mending...

Barbie, I totally agree, my standards have to change. When I wasn't working and the kids were at school all day, my favourite expression was 'I have nothing to do and all day to do it in,' and everything was spotless all the time. When I went back to work, it was only a few days a week so I could still manage. The kids are now responsible for their own rooms and help with meals etc. I know we are creating good adults, so all good there.

Thanks again, I actually think admitting 'out loud' that there were issues was 90% of the solution!
God bless you all, Janelle xx

PS Barbie...I'm thrilled you are learning Strayen...I'll convert you yet!