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So sorry you all are enduring what we all have or will. All of your feelings are valid. I had everyone of them.

We all give it everything we've got and none of us can come our unscathed.

Feel free to come here and vent... we all get it. Hang in there.

I had to think of the future, it was the only thing that kept me going, knowing that at some point, our PALS will no longer be suffering.

Some day we will be putting the pieces back together, one by one.

Hugs to all the CALS and PALS out there that are giving it their all everyday.
 
When I need something I try to include more information in the request. For example, later, when you have a chance, next time you go there, etc. Unfortunately my wife does not always understand that I don’t mean NOW and am saying multiple things to help. However, I have now come to understand that she is stressed out and has a difficult time processing the information I am providing in the way it is intended. Talk it out!
 
Yesterday was better. I set my mind when I got up that I would not engage in any bickering. 4 or 5 times, it seemed like he wanted to start something, but I said to him "I do not want to fight about this" and moved on. I'm sure that will not work every time, but it was OK yesterday. DD2 is home for Spring Break and he seems to hold off on the anger when someone else is around, so I'm crossing my fingers for a quiet spell.
 
Can you get a bit of respite time for yourself while DD2 is back?

You totally need some down time to recharge, but I know this just isn't as easy as it sounds, but sometimes as CALS we have to make it happen.
 
I have decided to just shut my trap

nothing good comes out of my mouth...apparently

I am trying to complete an addition and I need decisions on things

poor GC with horrible communication

Everyone is in the manana mode

She ended up with a life sentence with the only crime committed ... she married me
I got the Death Penalty ...ALS Slow Mode

Peace
 
Tillie,

Yes and no. DD2 often will sit and talk with DH for hours. She'll help him with moving around, getting things for him and eating/drinking. She also helps with things around the house and errands. But DH will only allow me or his aide to help with any dressing, personal hygiene or stretching/ROM exercises. I also handle all morning and night time routines.

I'm OK with that. She and I are going to go get her car worked on and have lunch out while his aide is here tomorrow afternoon. I miss having solo time with my kids, so I'm looking forward to it.

Night time is still our biggest problem. Last night, he was somewhat crooked in the sling when I put him in bed - my fault. This led to him not being completely centered in the bed - always a sore spot with him. So I got out the slide sheets, and with considerable effort, got him centered. But not without his criticism when things didn't go perfectly. Once centered, we then continued with the rest of the nightly ritual of taking meds, stretching, getting the iPad positioned so he can read, headphones for music and sound blocking, heated corn bags on his feet, trilogy and bed adjustments. I was a sweaty mess by the end of it last night. I said something about needing to simplify the bedtime routine and he scoffed, saying that then he wouldn't get what he needs.

So I will take what I can get for now and just keep putting one foot in front of the other.

Hugs my friends!
 
Ah but time with DD2 is going to be some respite, that's great!

If I hoisted incorrectly, I found it was easier to pick him back up with the hoist. It's frustrating when that routine doesn't work. I so get it.

I remember when I had the broken toe, one night it took over an hour to get Chris just basically set up in bed. My foot was throbbing and so I begged that I just needed to go sit down 5 mins then I would come back and finish the rest of the routine. You can imagine how well that went down.

No wonder we feel at such a total loss when asked - so how are you?
 
Jrzygrl - yes, one on one time with our kids is so very important. They need us as much as our PALS does, however the PALS doesn’t alway see it that way.

Hugs, I know that routine all to well.
 
The ups and downs continue.

The day out with DD on Tuesday went well until I got home. DH wanted to know all the details of the car repair. I had dropped DD off at the shop in order to get home on time for his aide to leave. It didn't go over well when I didn't know everything she had done. Our kids have started "adulting" and handling things on their own as much as possible (they're in their 20s - 2 in college, 1 graduated and working). Car repairs would have been one of the areas DH usually handled. I know the loss of control gets to him. He calmed down a bit later when DD got home and talked to him.

Meanwhile, DS called and said he had a last minute invite to go away on his Spring Break, so he will not be home this week. Again, I'm OK with that. I'll miss him, but have encouraged them to live their lives and try not to be weighed down by our situation.

MIL made plans to come for lunch on Wednesday. That went OK, but DH said he was exhausted afterward, so he was a bit cranky.

Thursday was absolutely beautiful here, so I decided rather than run errands, I'd spend some time outside while his aide was here. I took the dog for a walk in the park, refilled the bird feeders and cleaned up the yard some. Loved the feel of sunshine and fresh air again! DH came out for a bit, and directed a bit more yard cleanup, then decided it was too cold and went in again. End of my day outside, since it was time for his aide to leave. He can be alone for a while, but doesn't like it, so I have decided it's not worth the aftermath.

Yesterday, I convinced him to get outside again and it was good. DD left to go back to school.

Bedtime continues to be my biggest problem. I'm up earlier than he is, because I a little bit of time to myself during the day. Once he gets up, I'm on-call. So, by the end of the day, I'm falling asleep sitting up and he's not ready for bed yet. Once he's ready, we go through the night time routine. It takes between 45 mins and an hour to get him settled - usually with some sort of issue to be solved. Once he's in bed, now I'm wide awake. Sometimes I can unwind and fall asleep. Other nights, like last night, I toss and turn all night.

Wish me luck today!
 
I so hear you on the bit about taking a long time to get your PALS 'right' in bed at night, then it's late, then you are wide awake. I would be so exhausted and yet so wound up I wouldn't get to sleep til late, and then wake tired.

That time outside will have done you good, and even getting your PALS outside for short spurts is something. We often need to grab and be thankful for every one of the little things :)
 
You're so right, Tillie! I know the feel of sun does me good. I'm so ready for some nice weather.
 
Jrzygrl - yes, that nighttime routine can be a killer. Not sure this will work for you, but what I started doing was have my phone go off about 45 min before I hoped to go to bed. I would start his ROM exercises, empty the urinal, fix the food pump those kinds of things and save his actual settling to last. I also would give his meds then and it would help him start to tire. By the time I was done, he would usually be ready. If he questions, just stay you wanted to get some of the stuff out of the way, but you are NOT putting him to be yet.

I need that warm sunshine too.

Hugs
 
So today wasn't great either. DH had another anxiety attack which had us both up most of the night last night. Then at 6AM, when I finally dozed off, he had to go to the bathroom. Sling, hoyer, commode and back again. I gave him a couple lorazepam and he did sleep for a bit. Praying tonight is better.

Sue, I've been trying to figure out how to simplify our night time routine. He's pretty stubborn about how and when he wants things done. He says he's sorry about the way things are going lately, though, so I'm hoping he'll be more open to some changes soon.
 
I don’t know what I did simplified things, it just got those things done a bit earlier so they were not tacked on with all the comfort stuff and pillow parade etc.

I’m so sorry you had another rough night. I pray last night was better.

Hugs
 
I also got the nighttime things started as early as possible to try and do less at the end so I could try and relax more. Didn't always work as you know, but it did help a little when it did.
 
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