I'm a little jealous!

[shelleynshaggy]

I worked yesterday and as usual mom had Jim and the kids. She took them to a local lake where the kids played and caught crawfish. Mikayla even caught a snake in her net (YUCK! - glad I wasn't there for that!)

Anyhow, mom called me last night telling me what a good time they had and how much fun Jim had. She also said he was very helpful with the kids yesterday - she felt like she had the old Jim back.

I was already thinking how it was past bedtime and Jim hadn't called me all day - something I miss. I felt like I had when Mikayla first walked and I wasn't home (again for my mom!) I am just jealous I missed it!

Strangely (as it seems to be with Jim) we are in an "ALS Cycle" - a term I created - his ALS symptoms are flaring up and FTD is in check - when the FTD seems to "flare up" his ALS symptoms seem to calm. I mean neither go dormant. I kinda hope this cycle sticks around for awhile - I can deal with the loss of strength and tremors when his mind is "peeking through!"

So what are we doing with this increased awareness? - HE is folding laundry - insists on it. Not my 1st choice of spending this time - but he's content! He insists he doesn't want to do anything else since his feet are cramping. LOL - oh well still enjoying his "being here."

 

[brooksea]

Shelley,

Glad things are "positive!" I know what you mean by "ALS Cycle." Hope Jim's plateau with FTD continues (although I would also wish the physical symptoms would plateau, as well!).

 

[kelly]

Shelley,,,,
I totally understand what you are saying about "being jealous". I feel like I am missing out on so many wonderful experiences with my kids due to the fact that Andrew is ill. Gosh...I feel so guilty even saying that. Andrew has been sick since my boys were 2 and 4.....
Now they are 6 and 8. I really try to create so many positive experiences ...they are just so different then what I would be doing with them if I could get away from the house for 2 hours. I am really fortunate that I have an amazing support network that expose the boys to soooo much. Please know..I am not having a pity party for myself. Things are just different then how I imagined they would be. Then I snap into reality...because no matter how tough I have it....it can never even compare to what Andrew is experiencing. ALS just brings on so many branches of emotions....
Life sure is a crazy journey..Just want you to know ...I understand.
Kelly

 

[irismarie]

JUst sending love. Sometimes, too often, it is all I can do

 

[Phil M]

Alright..I'll bite...what mean FTD?

 

[brooksea]

Phil, sorry to say, it's basically dementia that some pALS get.

 

[Phil M]

OK, thanks CJ......Don't think I'm there yet..

 

[shelleynshaggy]

Fronto-temporal dementia - a form of dementia that effects emotions, behavoir as well as all the other stuff that does with dementia.

Makes me think of flower delivery!

 

[Blubear]

Oh Shelly, I hope things continue on the present path for you. I know how it is with dementia. My mom and I take care of my great aunt by visiting her in the nursing home. My mom has put in a lot of time and effort to make sure she is comfortable, and before the nursing home, she always has taken the time to visit with her. She takes care of her bills, makes sure all of her needs are met, and spends a lot of time listening to gibberish. I go in for a visit, and it was like someone was home?! It took me by surprise, as I didnt realize at first she was actually responding correctly to the questions I was asking her. We had the most wonderful visit. Weird thing was that she remembered all the times my mom had gone, and knew where she was, and why she was there.....she is 94. I was kinda sad to tell my mom about it because she had missed it. My mom went in to see her right after that and she went right back into the full blown dementia. It is weird that it comes and goes. But what I find most interesting, is that when you dont think they fully comprehend what is going on, they really sometimes do, they just cannot express it back to you. It gets all jumbled up. I hope my mom gets a good day with her sometime soon. Not fair huh.
Hugs, Kari

 

[Ladyinn]

That frontal lobe dementia is also a piece of Parkinson's thata my mom has and it is emotionally draining on her and me. She knows that she is not in the "real" world and it scares her but she can't stop it. I sometimes luck into a lucid moment with her and cherish it -- but more often than not she is seeing people or talking to people who she sees but who are no longer living. She insists they are disappearing
when I arrive for a visit just to make her look bad. Today she called me crying that she is embarassed to go to the dining room at the assisted living facility where she is living because everyone there knows she is crazy. She wants me to bring her home. I feel so guilty - how can I begin to take care of her` when I can't take care of me? Diane

 

[hjkangel]

Wow. Cherish those good moments, I guess! My Dad has gotten so weak, so quickly w/ the onset of als. He now has huge anxiety when we move him. He's had 3-4 falls prior to the most recent last week. At that point 2 people now have to be here at all times to handle transfers. I'll be alone tomorrow so prob will bring the hoyer out from the garage and use it. When Dad panics, the legs, of course go weaker. Anyway, I know our days are numbered so I am trying to have quality time w/ him. So hard on all, esp him. Took him for a short walk in wheelchair after dinner. It was a beautiful night and we were able to take our minds off our troubles somewhat and enjoy that time together.