Status
Not open for further replies.
Wow, that's much more than "you tried".
 
Jrzygrl - I know that he will remember how much you”tried” even if he will never admit it in a thousand years. I’m glad he got out. I’m sorry it was so rough for you though. What a wonderful CALS you are. Hugs
 
You're amazing, Jrzygrl! I hope you get to rest a bit today.

Sharon
 
Wow, you are an inspiring caregiver. I also hope you find some time to rest.
 
You not only tried... you accomplished it. Way to go!
 
I remember those days well. The thing is, for all that effort and anxiety, you did it. You got him out. He will remember that.. At some point he may even talk about it. He might not realize right now what it took for you to do that, as he's focused on his own needs and disability. But, if even for a short period, he was at a ballgame on a nice day. You did a "normal" activity. You made it possible.

As you say, the pictures freeze a moment in time. They don't show all the effort needed and they don't do the math on time spent getting to that moment and they recovering from it, but they do prove that the moment happened. And you are responsible for making it happen.

Big hugs.
 
Jrzygrl you rock! You got your PALS out of the house and over to an activity you enjoy. Even if it was just for a short time. That is love.

V
 
Situation is pretty steady here.

Still making preparations to go to DD2's college graduation next month. Accessible hotel confirmed, hoyer rented, checked out parking and seating at the stadium. DH is anxious about it, but I know he would not miss it for the world. We're driving down on Saturday (5+ hours) and stay over for the graduation on Sunday afternoon. We're scheduled to stay over again on Sunday and come back on Monday, but told DH that if he is not able to sleep well there, or is otherwise uncomfortable, we will drive back Sunday after the ceremony. I've told DD2 that our goal is to get to the main ceremony. DD1 is driving down early and will attend any other functions with her.

Clinic visit tomorrow. We try to send an email heads-up to the group to let them know of concerns or things we'd like to discuss. Helps us remember too. He was willing to put anti-depressants on the list. I hope they can find something that works for him. I hate that he wakes up and cries almost every day now.

The weather has been nicer, so I've been able to get DH to go out back on the patio when it's warm enough. Last night though, there was a bad storm and a tornado warning - VERY unusual for our area. He slept through it. Got me to thinking - some people were saying they took shelter in their basements. What do I do? Leave him and go to the basement myself. Nope. I'll stay with him. God will decide the rest. (I do have him registered with the county as "special assistance needed" in case of an emergency evacuation situation.)
 
Happy to hear things are looking up a bit for you. You needed that in a big way,

Hugs
 
I've sat down to write this several times, but can't quite get it to sound right, but here goes...

Clinic visit last week went OK. DH's neuro probably spent over an hour with us. He is now on an anti-depressant (Paxil). Other meds were adjusted, and she is sending him for blood tests to try to figure out why he is shaking so much. She said it could just be the cold, could be clonus or could be something else. She also told him that his breathing and diaphragm movement were good, so that he should be around for a while. More wheelchair adjustments, new neck brace and a lead on a possible donation of a better bed. It's such a long and draining day, always with a new to-do list for me. On the way home, his only comment was, "So I guess this is not going to take me out".

I'm spent. More mentally and emotionally than physically - although I seem to be coming down with a nasty cold. I hope the anti-depressant will kick-in soon and help DH. Nothing seems to make him happy. He wants me to sit with him all the time, yet the only time he talks is to ask me to do something or to complain. When I ask him questions, like "What do you want to do today?" or "What can I get from the grocery store for you?" - simple stuff - all I get is "I don't know." or "I don't care." So in addition to being totally physically dependent on me, he is now emotionally dependent on me? I don't know how else to put that. He expects me to somehow be able to figure this all out and make sure he is happy and comfortable.

He's also starting to really stress about going to DD2's graduation. I've discussed the whole plan with him. From what I'm packing (had to show him my written list), that his aide is coming in the morning to help us get packed and on our way, all the accommodations and that if he is not comfortable staying 2 nights (we're driving down Saturday for the Sunday graduation, with plans to check-out Monday AM), that we'll pack up and leave and I will drive home after the ceremony. He wants to know how he is going to handle the 5 hour drive. "I'll make you as comfortable as possible - we'll stop for a break whenever you need to." If he is going to be able to recline in his chair at the ceremony. "We'll leave our seats and move out to the concourse if there is not enough room. DD1 will make sure that we don't miss DD2 accepting her diploma." Where will we park? "Handicapped parking is available - if a van accessible spot is not, I will drop you and DD1 off at the door and find a spot, then find you when I'm done." I really have tried to figure out where we could possibly have difficulties and found alternatives. Yesterday, after the latest round of questions, I reminded him that he also has the option to stay home and watch the live-stream of the ceremony. I'd get someone to stay with him, drive the 5 hours down for the ceremony, then turn around and drive back to be home the same night. I'd hate to have him miss it, but I feel like the whole trip is becoming more about him rather than celebrating DD2's accomplishments. And I know that sounds really mean.

I'm sorry this has turned into one long, rambling complaint. I'm just at a loss for what to do.
 
Oh, Jersey, it all sounds so very very exhausting. I feel you. Sending lots of strength!
 
Everyone’s situation is different. In our case, my husband made the decision not to attend graduation and watched it on FaceTime, even though, I too had made a bunch of arrangements, He was much happier. I got someone to stay overnight with him, My DD’s graduation was also 5 hours away. My DH is much happier at home where he is familiar with everything and has all the things necessary to make him as comfortable as possible. He tires very easily now and even though we have a top of the line power wheelchair designed with his comfort in mind, he hates it.

Since we stopped going to clinic and he has made the decision to stay put he is much better emotionally, the lack of control in unknown settings was too much for him.
 
Jersey, we can't deny that the knowledge of ALS and the journey to death is an energy-sapping experience for a PALS, and many at some point are less able to connect their emotions to other realities, like graduation. It is a happy life event, but can be mentally overwhelmed by the greater reality.

So instead of asking what to get or do, sometimes presenting alternatives for consideration -- do you want to go to the park/for me to get some more of that pudding you had yesterday -- may shake loose more "wants" in the moment.

On a more practical note, will he be in a better position with the chair than he was at the game, with head/neck support and whatever else was bothering him?

I would talk him through each scenario, live stream and in person, and ask him which one will best address his greatest fear. If he would rather watch from afar, you could add a celebration at your place for the grad and nearby friends/family?

Stress that you are fine with either, as is DD. In other words, is he stressing over the current plan because he wants to do it so much, or because he doesn't? Honestly, ask just that. I think you can get an answer. If he really thinks it can't come off, that can be a self-fulfilling prophecy.

Best,
Laurie
 
Jrzygrl I so hear and acknowledge all you are experiencing there.

Totally try all the strategies you can think of, but I just want to say that you are NOT mean, and it is not because you are not doing all this right that he is still stressing and fussing and all that is going on. When there are cognition and behaviour changes, it won't matter if you follow the perfect pattern of correct approaches. He is likely to be anxious, angry and upset with whatever ends up happening.

You are doing all you can to work this for him and that is commendable.

What did jump out at me is that the fact that this graduation is about your daughters achievement, and that is possibly being lost in all this. Lost for you in particular - I bet you are SO proud of her and so thrilled for what she has done, and so excited that all this is about to happen for her.

I hope you can find the best strategies that sit well with you, and with your family as I know you will do your best. I hope you don't lose the joy in the occasion.

I think you and I both know you are going to blamed for anything that doesn't work out, so try to put that aside and follow your heart.
 
Jrzygrl - please know I’m praying for you. This things are NOT easy. Brian made it to DS’s grad 2 hours north, but didn’t make it to DD’s 1 hour north. They were 7 years apart and he shape was completely different.

I’d say let him decide whether or not he wants to attend. He will be happier if he makes the choice.
 
Status
Not open for further replies.
Back
Top