Your crap threshhold?

[LornaDoone]

I'm curious for Caregivers, how much abuse will you take from your PALS? Kind of touchy because with FTD and dementia involved, there certainly will be a range. But, extraordinary crap is what I mean..

My Story:

Mine gets super cranky and *****y. However, she has always been this way to a certain point. And I have never taken it. I didn't before the disease and will not now. That being said, there is some leeway given. She can no longer do anything for herself. She likes things super organized around the house, like myself. And things are just not the way she would have them. Frankly, my priority is my own house, and not hers. Her spouse's priority is clearly not the same as hers. And has never been. So, I understand this frustration and do allow for lots of crap. I am a master of communication and am good at approaching these things in a manner that works for us.

I am part of a support group and it's amazing though how nasty some patients can get. It's amazing the tolerance some people have. The mentality is the dying get carte blanche. It's often worded as such in my group.

I think there lies the big difference with MY thinking. You are not dying of the disease, you are living with ALS until you die. Therefore, until you do die, there is no reason why you can not contribute something. So, you can not move your arms, legs, you may not even be able to speak. But, you can help remind me of things when I forget them. You may very well be able to help me keep lists and keep my day on track. There is ALWAYS something you can do in my house.

 

[Jellycat]

Hi there Lorna....sounds like you've reached your own threshold. I sure know what that feels like for me. Bad day? Month? Hope you get another wind soon and that the others with you do what they can. Sounds like you have an aweful lot on with multiple als diagnoses there. I only have one person living with als and that's enough for me. Well actually no, there are two of us here living with als, even if only one of us has the disease. I don't have to cope with the ftd side of it yet so maybe I'm speaking out of turn but in our house I think the cals gets crankier than the pals! My pals cannot move too much and hasn't spoken a word in more than a year. Can't imagine her contributing to lists....how would she get it on there since she can't speak, write or type? But still she follows everything going on in the house and in the world (through the news), not to mention watching me with an eagle eye when I am attaching her sling to the lift. Was that what you meant by participation or had you something else in mind?

 

[LornaDoone]

We have a pals that can't talk. She can however type. She will occasionally send an email with things we are running low on etc. She will often pinch me and use her eyes to communicate. We have a pals that helps fold laundry. Each according to their abilities. Often there are days when it takes all the energy to just get dressed and eat. And that's cool.

I don't think I have it bad at all. I was surprised at a recent support group meeting at how many people have challenges with this. And was curious how much crap you take from your pals before you react.

 

[Jellycat]

My pals can't talk or type but wishes fervently that she could do both. At this stage she could no more send an email than land on the moon. And this is hard for us both because she was always super techy, independent & involved with everything around her. I miss the answers I know she has but can't externalise. Still, that's not your question. I don't see her as giving me crap at all. On the other hand, my limits? Way too many! When I get more demands or stress than I can cope with all at once, that sets me off. Or going endlessly from one end of the day to the other. Or dwelling on the fact I spend most of my days dealing with others needs & very few of my own. Those things get me focused on myself which is my downfall.

 

[Katie C]

I constantly had to remind myself that it was the disease not him. Because with that particular form of dementia, there are inappropriate sexual remarks made to the son's girlfriend. There was in this particular case a boob obsession. We had to lock him in the house so that he didn't wander. We had to be very aware if he was in the bathroom because though he was capable of dressing himself, he found humor in coming out of the bathroom without his britches. Did I lose my temper on occasion.. heck yeah. I am not a saint. There are those who have said I am, to whom I say yeah, come see the hole in my living room wall from losing my temper and throwing something. Carte blanche? Not really... we tried to hold him to as high a standard as he could understand. But expecting him to behave "normally" only caused stress and frustration for all of us.

 

[LizT]

my PALS can get away with alot. and i mean ALOT. And for the most part, I let it slide.
But, when enough is enough, I let him know that I refuse to continue killing myself for his "needs". Of course I would, but he hasnt figured out the difference between want and need. I think alot of times, CALS tend to spoil their PALS. Im guilty big time of this. Then they get it stuck in their heads that its ok to act/do/say whatever they want/whenever they want.
Well sure. Thats all fine and dandy. But not if you expect me to stick around.
Of course im speaking of someone without the FTD.