Encouraging or Nagging?

[LoveMyKids]

Can any PALS give me some opinions on receiving encouragement vs being nagged at? I want to be helpful but not put pressure or stress on my PALS. I know each person is different but I sometimes feel torn because I don't know if I should ask my PALS one time if she wants something and then let it go, or if I should try being more insistent or cajoling. As a caregiver I feel very responsible but I want to respect my PALS decisions.

 

[GregK]

That's going to be pretty much unique to the individual PALS and how they are feeling/responding at the time.

My wife reminds me of my 'evening snack' and that's fine.

You could always ask "should I mention this later...?" and let your PALS weigh in on how often you should bring something up.

 

[affected]

VERY hard call that one!

I wish I could tell you there is a magic formula that will work.

Sometimes PALS will simply refuse things because it gives them some feeling of control, even if it's not a good thing. I often had to weigh up, do I just let it go rather than spend the last months with my husband nagging at him to no good effect? So mostly I just let things go. He wanted the control, he resented me having any control including making calls on what was good for him.

Not easy at all!

 

[Nikki J]

I think it so depends- on the PALS the CALS and the issue. Are you talking about big things? Like do you want a feeding tube?
Or do you want to go sit in the living room now? Or something in between?
If it is an ongoing issue you are right nagging can just be aggravating. But sometimes it is really important. Try not to argue but sometimes you can go back to it. This example is actually my CALS role talking. There was something my sister clearly needed to agree to for her best interest and everyone else. I brought it up saying I need to say this and why I think it is really important. Please listen to everything I want to say. When I am done if you say drop it I will. I t actually worked and she agreed.
Something else that was unplanned but worked. A problem came up. The long term solution was obvious but she had refused it and it had become a major bone of contention. There was someone else there who did not understand the obvious solution who kept offering ideas that would not work. I let my sister keep saying no until the other person said gosh I guess there is nothing to do. And my sister said well I could do x. I let it go but 2 days later she told her husband she wanted x after all. Sometimes it is presenting the situation and backing off. Choices are important and everything that takes away our normalcy is really hard. It might help a bit if you can understand your PALS motivation. I did not understand my sister's until I got ALS too. Hers is that she wants to be normal. Sit in a normal chair, sleep in a normal bed, wear the same clothes as before even if she has to sacrifice some independence to get those things. I am the opposite as I will sacrifice normal sooner for being more independent
I hope this helps a little

 

[gooseberry]

I take a "How important is this issue in the big scheme of things" approach. It has been cold here in Florida the last few days but my husband refused to let me put socks on him. He said he didnt need them. Well, once the cramping started and got pretty painful, he was willing to let me put them on him. For him, its about loss of function and his struggle to ask for help. He gets upset and worries he is asking too much of me. He still wishes he could take care of himself.

For the really big stuff, I took the approach that Nikki talked about....I need to say this, please hear me out and think about it.

Its been 6months since my husband was diagnosed and we are just now able to talk normally again. Its been really hard mentally on all of us....she may need more time to come to terms with her diagnosis.

 

[LoveMyKids]

Thanks you so much. All these posts really give me good insight and things to think about.

Luckily, my PALS and I have an agreement on most everything. My main concern is calories and weight loss. My PALS is very firm on not wanting a PEG and I totally support her in that. However, eating has become more problematic and I just want to make her all these disgustingly fattening drinks and know that at least we got some calories in her. I know it isn't a cure but it would make me feel that we have done our best. I know that eating is one of the big stressors for her, though, and I don't want to nag. I realize I can't fix everything but still feel compelled to try.

 

[gooseberry]

We have a basket of all sorts of things for steve to grab and eat. There is a pen and notepad on the side for any items he would like added. It helps to take the struggle away. I always keep cookies, belvita soft breakfast bars, caveman organic nut bars(they are like a candy bar but good for you and softer for chewing) in the basket. In the freezer there are ice cream sandwiches, fruit juice bars, etc. I take his notes each week before I shop and ask if anything sounds good that might have not made the list. Everything is about 200 calories. Sometimes steve doesnt want such a heavy smoothie so i have been using greek yogurt, the fruit and fruit juice. The protein, fiber, carb mix ix a little carb heavy but not too bad

One other thing to try may be desserts. Does she have some favorites you can include?