Miscommunications with the help...

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Okay, so my Mom's health has started to deteriorate. Mostly her left arm can't be used for much.

So she requires the assistance of others, and I am often the help. Of course I have no problems helping.

But here's the problem, and what I can only imagine is a particular AS issue. I often don't understand exactly what she needs. My Mom is very, very particular about how she wants everything. And for every little thing, what I offer is often not exactly how she wants it. Or she tells me where something is, and I don't see it... I don't pick up on some subtle nuance about where she put something. I get confused, and don't get the job done very quickly... which thankfully my Mom isn't getting too upset over.

This never was a problem growing up, since she mostly kept my stuff to me... and whatever things she needed to get done... she was perfectly willing to do it her own way. I only rarely got the specific sense of just how exact every thing needs to be... and how completely arbitrary some of her decisions are.

Some of this is really about things that I don't find any value in, for example frequently she'll need towels. She says some specific type of towel, I have no clue what these things are... I get the wrong one... I have to go get another one. No each time I go get something, I stand there confused wondering if I am getting the right one or not... then I act slower.

Thankfully my Mom has been patient with me, and me with her.

She'll be moving in with me very soon... and I am not sure how my more ahem... Laissez-faire lifestyle is going to mesh with hers. It gets even worse when she is giving me direct instructions... we are just not on the same wave-length here...

This I guess, touches on a larger issue of communication problems I have... which again I suspect is AS. Where I just don't understand the exact meaning of what people say. I remember helping my uncle, working on cars... he would ask for things...and I just didn't get exactly what he was mentioning. It has happened on jobs too...

It's really... annoying... because I know I can figure things out... I'm not stupid... but all the communication barrier... make it so I can't be much help to anyone.

I need to ask family to visit often... because I know my Mom is getting the idea that I just can't be the constant help she needs. Especially for things that she is extremely particular about... I can be there for her... but not for everything.

Any tips... or at least coping strategies?

If it just her left arm, gear her area for ease of use for her right arm. Is it more then just that? I did Nurses Aid work for a good while, geriatrics.

You're so gentle, Pugly.

Why is it that you mind so much when you bring back the wrong towel (or other such things)? Could you simply give yourself permission to be the way you are? Everybody has their difficulties and this is one of yours. Your gifts are worth far more than this teensy shortcoming, which really isn't a shortcoming at all. Few people could approach your situation with the level of bravery and patience you display. You're a great help to your mother and I'd reckon to everybody else around you. There's no need for you to stress over something so small.

Maybe the problem here is that people frequently don't feel the need to explain what they feel is "obvious," and so they get frustrated that you don't get it automatically (I run into this frequently... in many cases the person will NEVER have explained before because they never needed to, and so they don't even think it might be an area of confusion).

This may sound overly simple, but sometimes it helps me to just to explain that I am confused about which item they want, and get everything nailed down clearly once and for all... overkill for them, much simpler for me. For example, bring out all the towels and have her explain which is which or what she uses each one for, and write it down... then you have a clear explanation to refer to. Of course, this relies on her needs being consistent each time (easier to do with tools that have specific purposes).

The biggest fear, I guess, is that I've seen my Mom get really frustrated with hospital staff and other folks... it really sets me off. There is something in the back of my mind that has me thinking that her attitude will get like that with me. It probably wont, and I am just imagining everything. Really, it's not as big of an issue as I am making it... but it is frustrating to me. I have ample patience...but my reserves aren't infinite.

The problem isn't specifically with items either, that's where it's easiest to explain.

Another example, yesterday I was helping her put sheets back on her bed. With my clumsiness it was difficult to get the bed exactly the way she wanted it. I get a bit annoyed at all the particulars that she needs for her bed. The real problem is that is that she really should take it easy... and just let people help her. But when I'm helping... it seems that she gets frustrated explaining things to me... and just ends up doing it mostly herself.

To describe it, it's like the exchange at Rex-Kwan Do, in Napoleon Dynamite.

Grab my arm.
The other arm.
MY other arm.

Imagine this little exchange repeated for all but the most basic tasks...

I should follow your advice Gwen, and just let myself be and not get worked up about what I can't do. I need to tell other family that I will not be able to help my Mom with everything... and they will need to stop by to ease the burden. Which I think they understand... I'll see.

I'm sorry to hear that!

I hope your mom feels better soon!

I still don't see what might be all of the trouble, but I have an idea. It isn't you. You still aren't saying if she has another physical problem other then her arm. If she doesn't, she has issues. Those need to be delt with now, not later. If you have other relitives, they might be able to help here.

Staff, doesn't have time to do what personal care will do. Take a lesson from them. Your bonds are there with your Mom and that's a good thing. Staff is told not to get personal, it's in their training. Doesn't mean that they don't at times, I couldn't help it at times. But that had more to do with the social issues for care for our older generation. You're giving or attempting to give quaitly care. Here's the lesson you have to learn. You have a life, you have other things to do. Put your foot down, your discribing all ready becoming over whelmed, over time it will take you down and come out in ways harmful for you both. Don't become a co-dependent, people, even Mom's, take advantage for what ever reason. I don't know what might have put her in this mind set, she has to be waited on, one messed up left arm doesn't fit the bill for all you've said.

Now in a lot of cities and areas have outside care that can lend a hand. You don't say how old your mother is. Some of this help is dependent on age. Cost, again depends on the total situation. I helped my Grandmother who became over whelmed with giving care for my Grandfather, who had cancer. Reason, she didn't ask for it, was it was starting to take a heavy toll on her, in many ways. The doctor that would come to the house told me to go pro, I could detach, aspie trait. Lesson here too. In time out side help had to be called in too. They are a different type of care giver and I hope it isn't that kind of situation for you. That's hospice and those people deserve medals every one of them.

What you're attempting to do is comendable. The key is set down some rules, now, not later. Pace yourself, this is for the long haul. You have a life, don't ignore it, nor should she ever ask you to, by her demands, actions. Understand this too, even under the best of settings, no physical problems, no other limiting conditions, your mother moving in wouldn't be easy. You have to figure out your needs, she's lucky to have you, too many don't.

How can anyone tell if there are sockpuppets online?

I'm sorry, I posted in the wrong thread by accident!

Thanks for the advice postpaleo.

For those who don't know, my Mom has stage 4 cancer. And it's unknown exactly how long she has. She's getting treatment, but the biggest issue is as I said... her left arm. She has Lymphedema as a result of the cancer... she can barely move it... and needs help for many things.

Also because of the pain, my Mom is on a morphine pump all the time. It's a little portable unit, not that bad to deal with.

I don't think my Mom is one to take advantage of any of this... she's always very strong and wants to do everything herself. Even now... which is part of the problem... I just need to tell her to relax and let others take care of it.

The issues are mostly back burner issues I have with my Mom, which come to the forefront now that I need to take care of her.

She has requested that someone stay with her, most of the time... and especially at night. Which has been a particular burden on my whole family... I didn't have a job... so it wasn't any deal to stay at her place once and a while. School has started now, and I have a fairly large load of classes...so it's not going to be easy to find time to stay there. This is the primary reason for her to move in with me... so it's not a mad rush of people to look after her. Frankly... I think needing someone there the vast majority of the time... is a little too much to ask of family. But I don't have cancer, and I can't say what someone else needs. The plan is to get her into my apartment this weekend.

She has a visiting nurse that comes a couple of times a week... but I'll look into just general care stuff. She's only 45... so it's kind of a strange age. If she needs help bathing and stuff, I'll definitely need outside help... I am not up to doing that kind of stuff... and she knows this.

Mostly, I think she'll be moving in... not expecting me to do everything for her... just so that she doesn't have to be alone during these dark times. I'm going to talk with other family and say just how much I'm able to help now that school has started.

The biggest issue though, and kind of the reason I made this thread... is just all these subtle communication problems that come up. Not interpreting exactly what someone needs and wants... not being on the same wave-length... wondering how much this is AS related (just want to say... I am not sure if I have it.. .lately I am leaning towards most definitely having it...) I have these sorts of problems all throughout my life... jobs, school, helping family and friends... just little miscommunications that make it difficult to work with people. I start to think that I don't get called on for help... just because I am a little difficult to work with(not difficult in the sense that I have an attitude problem). Even though I am perfectly willing if someone asks me...

Ouch. I know this one all to well.

My guess is, as you get to know what she likes, it will get easier to get it right the first time. Talking this through with family is a good idea. In my family it was, no one else could afford the time to be there. I could, I was in one of my meltdown work stages and my hours have always been night time. So I fit in well. The visiting nurse should know the places you might look for a hand, check her doctor as well, they should know as well. I can make and change a bed with someone in it, it's a skill, up to you if you want to take it that far. Seeing what hospice might have now would be something to do, even though we hate the thoughts of it, it's just being knowledgable for the future. My guess is with school and a family of your own, a private helper might not be a thing to be done, maybe something to discuss with family? If only for a brief time to yourselves? Perhaps just a little money help, for a night out kind of thing? Pacing is important, time out for yourselves is important. You won't be as much of a help if your stressing in what stresses the mosy hardened of us. I'm one of those when it comes to this kind of thing, but over time, it even got to me. You have gotten good advice on the communication to her and I do think as you do it a bit more, it will get easier. You're a good man, the night is a scary place for those in pain and worry. When you're in those night moments and can't find words, just holding the hand is really all you need to do. My heart is with you on this one.