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JOSIEM02

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Joined
Aug 7, 2009
Messages
134
Reason
CALS
Country
US
State
PA
City
waynesboro
I need to vent and this will tell all. With everything going on at home and family showing their true colors let me just say this. I expected this to happen but my husband didn't and it has truly hurt him. This is my view on FAMILY the way I see it at home and the way I feel about it.

F-- FORGOTTEN
A-- ABANDONED
M-- MALICIOUS
I-- ISOLATED
L-- LONELY
Y-- YELLING
This is how things are going.

This is how I see it should be.

F-- FAITHFUL
A-- ADORABLE
M-- MIGHTY
I-- INVINSIBLE
L-- LOYAL
Y-- YES
This is not how it is in so many FAMILIES and I don't understand and never will.
We feel completly alone, tired, sleepless, stressed and we don't understand.
Thanks for listening, reading.
Josie
 
Oh, Josie there is another thread going on somewhere here with everyone with few exceptions venting the same feeling. It is so hard, we all k now, but you get realistic and find your real friends...........;Sorry you have this problem, too. You are a wonderful family person but you are few and far between
 
I know one thing, I use to wish to hit the lottery to travel, new cars, new clothes(which I could use) a house, stuff like that. I now wish to hit the lottery to buy a HUGH HOUSE--MANSION, to hire many caring, loving people, so I could help each and everyone here. It makes me so mad that soooooooooo many have little or no help. And believe me, they would be caring or loving caregivers or they would meet the wrong side of me. OOOOOOOOOOOOHHHHHHHH HOW I WISH FOR THAT DAY. Irismarie, you once again come to my rescue with your kind words. I wish we lived closer!
 
So do I. My dream is a village for us all with the best doctors and carers and help and love for everybody but plenty of bolt holes one can go an d be alone if wished. No more alone in the middle of the night..............
 
I often say it takes a village to take care of an ALS patient. I am so thankful when our friends visit that our "hands on"...even if it is just a foot rub for my hubby. Anything to give me a break. Josie...so sorry that you are not being supported by your family...like things are not hard enough dealing with ALS. I am thinking of you..
Kelly
 
Josie, I KNOW what you are venting about-we are in such a similar situation. :[ I soul agree with the village idea and wish that we could make it happen somehow, someway...no more isolation, no more exhaustion, no more trying to reinvent the wheel... We could and would take care of one another!
 
Josie,
I hear you. Not only am I virtually estranged from family [father, sister, brother-in-law, nieces and nephew] but my friends have run the other way. I live in a building with 90 apartments. When I sat on my co-op board, I had to sneak in and out of the building because everyone would stop me with their moans, groans, and complaints. And I would always stop and listen to their problems, not only about the building, but about what was going on in their personal lives. Since I ot this affliction 6 years ago [the first 2 years I had no help yet] not one neighbor came by with a meal, not even a damn cookie, and not one person came by to visit or ask me if I needed anything from the grocery store. I have a friend who comes by to help with bills and goes to my support groups with me, and I have a volunteer with Jewish Family Services who comes by about 2-3 times a month to take me out, but that's it. The rest think that being my "friend" on Facebook is enough. And, I have reached the point where I would rather be alone than deal with the discomfort when I do see them. They act like they will catch it from me or something. Any one of them is only a car accident or a cyst away from being in this situation. I read about PALS with friends who run fundraisers for them or for ALS in their honor, and families who rally around a loved one with ALS and I don't know what I did to deserve this. I don't want a bunch of phonies showing up at my funeral [if there even is one] and cry about how much they miss me!
 
Josie, That made me very sad for the both of you. I have a husband and friends and kids that are my life line. but i have a mother that never calls to see how I am doing.. Very sad and hurtful...Her sister does though. she is more like a Mother to me than my own .. I don't understand it? I could never do that to one of my children... ? I don't even try to understand her anymore... Hugs to you, Linda
 
All I can say without screamig like I really want to is I hope those who choose not to help or as I call it ---DO THEIR SHARE--- I hope they never need help. Right now it truly would be hard for me to help them let alone care. I have always been a hard but very caring person and that hard person it taking over the caring person with them. The problem with that is I don't like it. My sister in law doesn't speak to me anymore and she tries to talk to my husband only when I'm not around. She was at the house last night and I took MIL clean laundry over to her side and SIL asked if Tim (husband) was home and I said yes, he was eating. When I went over to our side of the house which is actually through 1 door our livingrooms are only seperated by a door, when she saw I was going back over she didn't come over. This is totally ridicious. My husband told her Sunday to never exclude me again, if he isn't home, I speak for him. She didn't like that at all. I hope you all have a great day. Josie
 
Dear Josie~
Don't let these people change you. You are wonderful and Caring...just take them and their bad attitudes out of your life. You don't need or deserve to be treated that way. Ignore them if you can, and if you cant, say what you need to say~ sure they wont like it but you deserve to be treated better, you have enough to deal with. Some people are hurtful and selfish and only think of themselves~ it is diffucult to see it in your own family. (i have similar issues :( )
Keep your chin up, stay strong.
You are in my thoughts and prayers
In friendship
Jeannie
 
Hi Josie, hang in there... thinking of you and sorry you are going through all this.
Sandra
___________________________________________________
I have MS and my husband has PLS- both of us diagnosed 2007.
 
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