Just can't keep it together this afternoon

[affected]

Ahhhhh Paulette so true!

If we hold our heads high, and we are efficient and give excellent care - we are hard hearted.

If we break down constantly, can't cope, need help all the time - we are incompetent and our PALS should be put into care.

I agree, I would break down only at times and in ways that I felt were safe or that I could manage. Part of my coping mechanism was to appear confident (hell my husband was terrified, of course I tried to help alleviate that to some degree), and to appear that I could manage it all.

I was accused of being NEGATIVE if I told it like it was when asking one in particular of his children to just spend some time with him whilst they could.

Snowman you are doing a great job, and you are supported here by those who know just how hard this job is and what it takes out of the CALS. I know your mother is constantly grateful for you as well as you father.

I hope all is OK

 

[affected]

Really makes me laugh that so many times I hit submit and wince as I expect the 'your post has gone to mod eration' notice, and no my post just appears all happy.

Then I write something without a thought and, dang it all, there it goes off to mod land. Sorry for all the work Nikki and Beki.

 

[SMP51]

Frosty, hoping things are easier for you today.... I hate hitting a wall, know how you felt!

 

[Snowman78]

Thanks so much for all of the support and caring. It is indeed a hard road to hold, I often think about how hard it is on us to provide the proper care that we all do to the best of our ability. I see the toll it takes on dad as well and as hard as care giving can be I could imagine how it must feel to be the PAL and slowly lose your abilities to do things and go from so independent to so very dependent. He has perked up some for sure but is still very weak. He was peppy enough this morning that we did manage to get a good washing on his head even though I know he didn't care for the process he definitely admitted how much better it felt. Nothing like leaning over a wash tub while someone pours warm water over your head but hey it worked. lol. We try to space his morning out so as to give him rest periods in between activities. We think one thing that had him so low on Friday is he had just been started on a low dose of Ativan and we think it just zapped his energy. We are holding off on it for now but know when he takes it we need to be prepared for him to be a little weaker and maybe give it to him before his nap. It was going to used along side the Morphine but for now we will stick with just the morphine unless it is a bad bad day. There was never any doubt that I had to step up and help handle things, but the extint that I have needed to was a little surprising. I couldn't imagine mom having to handle this alone. He would most definitely would have had to be in a home by now. He didn't want it and I was/am determined to ensure that he never will have to go in one. I got a nice break on Saturday and went to the lake with friends for a day of fun, swimming and boating. Being on the lake/river is defintely my happy place, I am so thankful it is close. I make it a point to never break down in front of him but rather in my room or I leave and ride around in the truck and get it out and then return. I am very excited that I have finally talked mom into taking a trip with her friends to the mountains of NC and taking a break for a few days and let me handle things. Again, thanks so much for the support.

 

[MaxEidswick]

>I am very excited that I have finally talked mom into taking a trip with her friends to the mountains of NC and taking a break for a few days and let me handle things.

.terrific, well done!


-----
Max - Monday, July 14, 2014 1:16:01 PM
-----
onset 9/2010, diagnosed by Dr. Appel 8/29/2013
It Is What It Is!

 

[JimInVA]

Snowman...

So great to hear back from you and so glad that your Dad has rebounded somewhat from Friday. Even more glad to hear that you were able to take some YOU time and that you've also encouraged your Mom to do so. Nothing about this could even remotely be considered fun for any of us... PALS or CALS... but I continually find myself in awe at the courage and determination we all manage to find, for ourselves and for each other. Well done!

Jim

 

[SMP51]

. I couldn't imagine mom having to handle this alone. He would most definitely would have had to be in a home by now. He didn't want it and I was/am determined to ensure that he never will have to go in one................................. I am very excited that I have finally talked mom into taking a trip with her friends to the mountains of NC and taking a break for a few days and let me handle things. ..........

I love this kid!

 

[affected]

go snowman, this is just awesome!

respite for you doing what you get most pleasure from, respite for your mum doing what gives her pleasure and better care for you dad.

wow, I'm smiling like that cat

 

[Barbie]

Good for you! The fact that you encourage your mom to rest--so smart! She and your dad must have been really great parents because they raised a great son.