Just wondering

[redvettegal]

Says 30 people are viewing this now. Do we all feel the same? Alone, terrified, worried, scared, tired, want a break?

This caregiving thing is the hardest thing I have ever had to do. I feel so alone and liek no one cares.

My Dad has ALS and CHF.

Its hell!

 

[sadiemae]

You ate not alone. It does really suck.

 

[vzandt]

Your definitely not alone. My husbands not even that bad yet but when I do get away all I want to is go home and make sure hes ok.

 

[DeansWife]

I hear ya Red! Being a caregiver is not fun and is a lonely job. Some are fortunate and have lots of family and friends nearby to give some relief, others like me not so lucky. We just moved and I have my son and daughter near but I know no one in this area to call on for any relief. Like vzandt said, when I can get out for a few hours, I spend it worrying about Dean. This disease sucks the life out of him and me!

 

[Arens]

I think we all feel the same way. Some days I feel like I can't take this anymore and want to runaway but I love my husband and would never leave him. I know that one day I will having nothing but free time and I will miss not having him to take care of.

 

[momap53]

Yep, it sucks!

I was sole caregiver for my Mom (CLL, Parkinson's and a few other odds and ends) for 6 years prior to my diagnosis. Now my daughter is my CALS. A good support network, counseling and drugs can help.

Try to keep your funny bone sharp too. Laughter really does help KK and I get through the days.

 

[AlabamaGal]

Yep. It is the hardest thing ever. But you are not alone.

 

[panguinjen]

I agree with everyone! This is hard and one of my friends tries to understand...she and her husband are the only ones that come to see Rog and aren't afraid of being around him....I learned in a hurry who my friends really are. This forum is a lifeline for many of us....

Jen

 

[cubcake]

I was shocked to see how many ran away! And even more so to see who stayed. It is very, very lonely, but this forum keeps me sane. In my wildest dreams, we are no longer in this nightmare, but in reality I feel honored to be able to help him exit so gracefully. I repeat that to myself every day. Sometimes, very loudly.

 

[Miss]

It was the hardest thing I ever did. In fact, I don't know how I did it. Looking back, it seems impossible that I handled a 6'1" man, twice my size, by myself. Amazing what you can do when there is no one else to do it. As hard as it was to take care of my husband, I think it would be much harder if it weren't a child or spouse. Best wishes to you!

 

[Johnnysgal]

You are not alone, it is the hardest thing.

 

[fairfiona]

Reading these caregiver stories is heartbreaking. I hope I will be able to come trough for my friend an help her.

 

[wandabrittle]

I don't now why your friend leave but they do. It happens a lot to people. Since I have been on the Forum I have read a lot and I just don't get it. People with ALS are still the same, inside and out.

 

[JenD1214]

I agree! It sucks so much, and sometimes after awhile, people stop wanting to hear about your pain, thats the problem I am having.