Caregiver taken for Granted!

[Lorie]

I was planning to take the day off today and Garden and hang out by my pool! Wrong!

First of all, I have helped care for my brother Tim over 2-1/2 years now. I do not direct anything toward him. Its not the ALS persons fault that they have this disease. I love him and you guys know that. Today I was overwhelmed with thoughts and events that made feel angry and taken for granted. Although my husband is supportive of me. I get nothing else. This 2-1/2 years he and my daughter have lived like nothing has changed for them. It hasen't! I was asked last night after getting home from the hospital at 10:45. Have you washed any white clothes? This morning it was did I do this, that and the other! They never take up my slack. No laundry, nothing. I do all our household errands and Tim's. And all I do for Tim. These people don't know what it is like to be helpless.

The hospital called me this afternoon. Tim wanted fried chicken. I told him last night that I was going to take today off. I gave the nurse my mom's phone number, to ask if one of them would bring him the chicken and feed it to him. I get a voicemail fron a friend of the family that lives at my mom's. She said: The hospital called and wanted to know if you would bring him chicken. I said I already talked to the hospital, they were asking yall to do it. Of course I get the usual BS! My brother Ronald, Oh poor me I can't go I am some medication right now. Hell, I take about 12 meds a day. Wants wrong with people. I know I am not the only one going through this. Or is it that I am just too good of a person? I don't know anymore.

Needless to say, I did not do what I wanted to do today. And Tim did not get the chicken. I did household chores and took Xanax! I have had it. I gave my husband and daughter a few words of my wisdom!

No breaks, No nothing!

I have always heard, what comes around, goes around! A whole lot of people better be looking over there shoulder.

I feel a little better, now.

Lorie :x

 

[brooksea]

It is very sad when family will not step in to help and may be in denial. I know what you are talking about.

Do what you need to for yourself and your family. You must!

 

[Lorie]

Cj

You know that is easier said than done! If something happens to me other than what already is. They will have to learn to get by! Right?

Lorie

 

[joelc]

You have every right to feel that way and I am glad you feel like you can unload here.

I am deeply sorry you are going through this!

There are a lot of us praying for you! As has been suggested many times, please take care of yourself! I understand it is not that easy but take some comfort in the fact there are a lot of people here who understand, even if your family does not.

God will bless you for the angel you have been to Tim.

 

[brendapals]

Lorie,

I'm certainly sorry you have all of this on your plate, it's lot to deal with-and sounds like you deserve a break!

I was caregiver to my mom and father-in-law ( 13 yrs and 7 yrs, respectfully ) and it truly is an exhausting time. What's weird for me now is trying to teach my hubby and kids how to do all the "mom" stuff! Yeah, they help quite a bit, but who do they ask about the clean clothes? when is the next ballgame? how much pizza should we order for 8 people? and on and on and on...

So, you guessed it, I'm the one with ALS-and still doing all the "planning" of our family. I have decided this week that I will boycott washing dishes, and lo and behold, both sinks are still full!

Hope you enjoy your weekend,
thanks for letting me vent a bit!
brenda

 

[MtPockets]

Prescription to be taken immediately:

Find a quiet place, hide in bathroom in tub of hot water, no cell phone, go out in yard, go down street, whatever:

Clear your mind of all the garbage of the past days, months, etc.
Focus on These words:

John 14:27
Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.

Add any of your favorite scriptures and mediatate on these, not on the problems. No, it will not make the problems go away, but it will cause your response to those problems to change.

We all need renewing of our minds, wills, and emotions. Take some time for LORIE. Also, know you are not alone in this battle. We each have our battles to fight. But, we are more than able to overcome these battles. Right?

Ephesians 6:12
For we wrestle not against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this world, against spiritual wickedness in high places.

Romans 8:18
18 For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.

 

[imanzcan]

Hi Capt. Al. That was beautiful. You are such a dear man. Aren't you the one with the black dog with wavy hair? If so, how is he? LOL I have not been online lately because I was having computer issues. I believe the last time I was online was whe netty's Freddie passed. I didn't get to post anything about Freddie when he passed, but I went to his wake...I took care of it then.

Again, thanks for sharing these wonderful verses with us1 God bless.

Irma

 

[MtPockets]

My little Cocker Spaniel is named Smokey. She keeps me better comapny than a lot of people I know.

 

[imanzcan]

I agree with you on that one Capt! Nice to hear from you, gotta go and cook for hubby, God bless...be back later!

Irma

 

[LauraW]

Wow, I can soooo relate to you! We do what we do because we are the people we are. Don't know if that makes sense but from the advise everyone here has given me and by doing some serious thinking, I have realized that I care for my mom because it is who I am and I would have it no other way. Others, well, they just can't and believe me, I totally understand about others being focused on themselves. People just don't get it. And I don't know why but I know that those of us who do choose to do the cargiving are a very special group of people. And the people we care for are very special too. Hang in there. I will be praying for you.
Laura

 

[Lorie]

Brenda, Laura, Capt. Al

Romans 8:18
18 For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.

Capt. Al- I do feel Glorified in what good I do. That is my reward. Its when I have to fight battles that I shouldn't have to. Tim asked me tonight why God did not give the rest of the family brains like I have. I said: I have always been the chosen one. Through every difficult situation in our lives (family).

Brenda- You are the one with ALS and still doing all this. It must tire you out. That will be me ALS? or not.

Laura-You are so right. When people ask me how I dio what I do, I say: It is not what I do, It is what is put through me to do. I could not do it without God!

Lorie

 

[hopingforcure]

Lori,
You know it is so true that certain member's of the family tend to be the one's who are always helping others. My oldest sister is the one who is always helping out everyone in our family, just like you, she put's herself last. I cannot imagine your family without you in it. My doggie is my girl her name is Sophie, and she is my constant companiion. Lori you sure qualify as a helpful member..and a boat load more...

 

[Lorie]

Update on Tim

Hoping- You are right. Some people get it all! I am trying not to complain today. I don't want to get in that habbit. I will be at a level I don't want to be at. You know I care about you, PM me sometimes.


Love,
Lorie

 

[SteveS]

Lorie I feel your pain and I know it is tough. Thankfully you are there to help when no one else will. Imagine what it would be like if you were like the others :/ I am the primary caregiver to my wife. My kids try to help but in the end they are just kids and I can't get mad for their lack of enthusiasm. It is hard on everyone. I find most people just avoid us all together now. For most I think it is just out of fear and they are unable to cope with our situation. I have one aunt that lives close by that said she can't come and visit cause she is a big baby and would just come here and ball her eyes out. I told her to come anyways and she and the wife could have a good cry or the wife would help put her mind at ease as she has most others in our family. She is an incredibly strong woman. We have had lots of people give us the obligatory "just call if you need something" but funny when I do, they are too busy all of a sudden. We have no family close by and the only ones that make an effort to come and see us are my parents. They are 73 and 65 and have their own issues but are determined to help out. They actually get mad when I tell them I don't want them to do anything except to visit and enjoy their company. I work a minimum of 50-60hrs a week and help the wife on top of that. I am quickly burning out and the last few days I feel terrible because I am so stressed out I have gotten pretty snappy with the wife. She is constantly apologizing to me and it gets me angry. I am not angry with her, just so frustrated with what this disease is doing to her and our family. I wake up every morning hoping I am waking from the worst nightmare ever and all will be normal when I open my eyes. My love for her is what keeps me going and I know if the tables were turned she would be there to wipe my bottom etc when I could no longer do it myself. Hopefully I am teaching my kids especially my 17 yr old son that real men don't walk away, they deal with their responsibilities. Please continue to fight the good fight as it is obvious you are the only one that will. I would sit your family down and let them know that you are not going to tolerate their laziness and they can help you best by helping themselves and cut you some slack.

 

[Lorie]

Steve

I will not be like the others. Like you, I am running on empty. And that is also the way I feel emotionally. Isn't it remarkable LOVE for a person can make you realize you can do the things that you never thought you could do. Everything I do for Tim has became second nature. When I am with him, although I do alot working with Tim. I treat him mentally like a normal person. You are also a remarkable person. The weight you carry on your shoulders. I wish I could gives some families a piece of my mind. I hate for Tim to have to back to my Mom's, it is so disfunctional. I am fed up with that bunch to! Tim does not have long to live. I will post about that tomorrrow under my thread for Do I have ALS. If you haven't seen it. I want to make the rest of his life a pleasent as possible. If I have to move in there for a while and still take care of my own family. I don't care who I have to threaten. This is his time. Tell your lovely wife, that she is so very luck to have you. We can vent together anytime. People need to buck up and get with the program. There are some people that just think they can't handle it. If you need any emotional support. I am here for everyone, just like they have for me.

Lorie