give me wings...

[dmarkland]

I wish I could fly away in this very moment to a magical land. One that did require me to take care of a bwk(big wierd kid). When I originally spewed this out to my partner...that I felt like I was caring raising a bwk...it was funny to both him and me. T was diagnosed in 2010, I let this slip out last year. Now it's not so funny. I'm weary. I'm weary of doing everything...for another adult human being. Blowing his nose, wiping, showering, feeding, peeing, you get it. I didn't sign up for this. I was ready to leave before this amazingly awful diagnosis and then bam...what do I do. I stay because I love this man with all of my heart but I hate, hate this thing that has consumed us, ALS. Yes, there is respite care through ALS, minimal though...so I save that for the time that I feel that I may explode and I can do this no more...but I won't leave for good. I will ride this out to the end. I just pray that I can keep some semblance of me and my spirit that is so strong and that keeps me sane through this ridiculousness of watching the one you love wither away from this insane disease.
Peace and love to all of you living with this...dana

 

[Loverly]

Sending you all my good intentions.
I'm in the middle of this $h** storm too.
I'm sorry.

Jen

 

[Barbie]

Oh Dana, I so get it. I feel the same way so many times. can I tell you the feeling comes and goes, but when I am in the throes of it--it is so terrible so low and sad. I wish I knew how to make it better but I don't...I try to get out with friends and laugh and smile some, when it is bad. I also take anti depressants and that helps as well to take that overwhelming edge off. I hate ALS so much too!

Barbie

 

[affected]

Oh Dana,

I can never work out if caring for rapid progression that was over less than a year after diagnosis was better than having more time with him where we stayed at one basic point of progression for while.

I know that in the first months I was here, I would see posts by Barbie who was 5 years in then and think oh my lordie I can't do that! Now 2 years later she is still here and my biggest hero.

But she feels everything that we all feel as carers, and somehow we all go down to a depth of despair then somehow pull ourselves back up again.

One thing that helped me was that I chose to do what I did. I was not trapped because no matter what we all have choices. You have shown that in what you wrote - you are struggling so hard but you are still making a choice.

We can't fix it, but we can understand and it made a world of difference for me to have others who understood me here.

I'm now 10 months on 'the other side' and it takes time to find your way again, I'm working on it. But in many ways my spirit is still the same, even after the battering the monster ALS gave it.

 

[Loverly]

O

One thing that helped me was that I chose to do what I did. I was not trapped because no matter what we all have choices. You have shown that in what you wrote - you are struggling so hard but you are still making a choice.



Tillie

this was important to me too! my father has a history of demeaning my choices and i had to stand up and tell him that it was time to stop. that my choice was to be here and not doing some other work and I deserved respect for making a decision to stay.

jen

 

[dmarkland]

Thank you Jen...May you find peace on this difficult road.
My daughter lives in SD and I am really wanting to spend time with her. Just to take a break. I feel though that I would be worried the whole time and I wouldn't enjoy myself like I would want. Contemplating a trip sounds great though.

 

[dmarkland]

Thank you Barbie...I do try and get out. Shoot, just a trip to the grocery store by myself is a joyous occasion. I am one that cherishes my solitude, so this is so tough sometimes. Some days are great, some I'm just so sad I can hardly get going, some I'm just mentally exhausted. I find I drink too much wine at times. So...on top of this shit storm...I lost my Dad one year ago today...I lost my Mom, who I miss more than words can say, last April.
So that' my pity party I'm actually a pretty upbeat person for the most part, I think I'm just feeling super down today. This seems like a good place to vent. I'm super outdoorsy and this cold weather we are having now is making me crazy. Thanks for being here all of you...<3 <3<3

 

[Nuts]

Dana, this is a good place to vent...have at it!

You mention that you are saving the respite days for when you really need them. It sounds like that time is now--before it gets any worse. I appreciate your fear that you won't be able to relax while away. My PALS is pretty independent and I already feel that way.

You've had so much loss in such a short time, and ALS on top of it. Yes, Dana, you deserve to vent!

 

[DreamsEnd]

You are the most amazing group of caregivers. I am humbled by your strength. Anyone seriously contemplating respite please get some before you're ready to completely collapse - ask me how I know. Loved the BWK and all the encouragement and support offered on this forum.

Sherry