i really need some guidance

[tifferlynn]

I posted a tread on 7-6-10 titled PSP- Please, help us to better understand or to cope and 80 people viewed it but only one person replied, really starting to feel like I must truly be a jerk. Please know that I love my mom so very much and feel so very wrong and awful for even having these thoughts and feelings. I think who am I to feel that way, I’m not the one dying. I can’t even begin to image the level of depression and mental state my mom is going through and how I dare have any self pity. No matter how I feel I know it doesn’t even compare to how she feels. Please just be honest with me, if I’m completely out of line, please tell me. I really am in need to some guidance.

 

[sadiemae]

We are here for you. HUGS Lori

 

[tomby]

tifferlyn- didn't see your other post, but I'm sure you are not a jerk and it is also evident that you do love your mom very much. It is OK to be sad and angry. Feel free to vent here- no one will judge you

 

[brooksea]

go back to that original post...sometimes it takes us time, as we deal with our own issues and think things out. You aren't a jerk.

 

[Miss]

When I read this, I knew I must have been the one to post. YOU ARE NOT A JERK. Don't let anyone try and convince you that you are - not your Mom, not your sister, not a friend. You aren't going to do everything right. You are going to make mistakes. You are going to think bad thoughts. You might even say some of those things out loud. The fact that you worry about being a jerk says everything. You care too deeply to be a jerk!

 

[Katie C]

As caregivers, all we can do is our own personal best. Anybody who judges you for that has never been in your shoes. You are trying to live your own life, care for someone with a VERY difficult illness and beginning the grieving process for your mom as well.. cut yourself some slack, and probably try to get some rest!

 

[Northern Dancer]

Tifferlyn,
Welcome to the forum. Just remember that you are here for support. You should never have to worry about being out of line. No apologies are necessary. You have the right to ask any question you want. There are no silly questions just silly answers. Hoping that you will find comfort here.

Northern Dancer

 

[luvnmm]

Tifferlyn -

No, you are not a jerk. Your human. We're all here for you whenever you feel the need to get something off your chest or if you just need a hug. We don't judge you. If you were a jerk, you wouldn't care if you were being one or not, so that's proof enough for me that you aren't one.

Take care, and love your mom as best you can.

 

[LauraW]

This disease is difficult on everyone involved. We all understand. You are not alone. Ask questions, vent...we are here to listen.

 

[pepsiman]

tifferlynn,

You should search through the forum for some of my old posts. I have bared my soul many times here, it's a very supportive universe. I admit to having many conflicting emotions through the care and support of my wife. This road is excruciatingly difficult, for everyone involved. I still feel some guilt but the bottom line is, we caregivers do the best we can in a no win situation. I'm sure your mom knows you love her. She is likely also very aware of the toll this is taking on her family. I've been soul searching a bit lately and trying to put to words my state of mind now, almost eight months later. When I finish that treatise I will post it here on the forum, in the hope it helps others.

Dick

 

[Miss]

Tifferlynn,
There are no words to describe the struggle I face in caring for my husband. It is so unbelievably hard. I've only been at it for 3 months on a full time basis, but it feels like years. Without these folks, I would probably go crazy! Whoever said raising kids is the hardest job never was a caregiver for an ALS patient. There is absolutely no comparison. I would take newborn quads through adulthood any day over this. It would be so much easier.

 

[tifferlynn]

Miss, when I read your e post I laughed out loud only because it’s true. I have never heard it explained better. I so going to use that the next time I try an explain what being a caregiver of a person with ALS.

Thanks I really needed that laugh!

 

[tifferlynn]

oh, and thank you all so much. And i truly needed to vent and thank god for all you for being there to listen. Before this forum things bad/ with this forum so much better and gives me the strength to get back in there to at least if nothing else be a loving caregiver.

 

[hopeful warrior]

The forum members are always here. Glad you were made to feel better!

 

[Al]

Sometimes people ask questions that there are no easy answers for. We're not ignoring you but just don't know what to say. Especially with the more obscure variants.

AL.