Please stay and receive support here. We are all stressed, trying to deal with this monster. You have happened along just when something went awry here that hasn't happened in the 6 months or so I've been here, and in fact I've found everyone great. I did sit back a bit at first and try to get the 'feel' of the place and people. Text from all over the world in any forum has a way of getting meanings confused and people can jump to conclusions too quickly. I'm not a moderator here, but I have owned forums since the mid 90's and I know what flame wars can be like and I find this place is great. The software moderates posts yes, but please understand this is to try and stop spammers from posting huge volumes of messages with links to distasteful things, not meant to stop us talking. We all have posts go to moderation, I've learned to just laugh and my posts get approved and appear later. You are in an awful situation, and we offer you friendship and support if you let us. hugs Tillie
You have been in my prayers. I can't imagine how difficult this must be for you. Tim's and my kids are mostly grown, except for Tim's 14 year old, so they have a little better understanding. Actually they were pretty angry initially, but have told us that since we don't seem to be letting this make us bitter, they felt better about getting on with life. Kids are pretty resilient if they are given a healthy outlet, and lots of love. I get pretty tired caring for Tim full time, but you have so much on your plate.
Yes! It is the worse thing in the world! I know! I understand how overwhelmed you feel with paperwork etc. i think from your profile i learned you were in Canada right? If you are in the USA i was going to tell you he is automatically approved for medicare and disability benefits with that diagnosis. Not sure how it works in Ca though. Sorry i cant be more help there. I am working part time now too. I spend my days taking care of his needs and afternoon to evenings at work. Its hard cause i dont get to see my kids as much as id like. But ive got to help provide. Its definatly a juggling act. But im so blessed i have family to babysit and a housekeeper to help lighten the load. Its hard for me to accept help too. But we must. This is too much to handle on our own. Most of all i must rely on God. I dont know where id be without His help! My kids are 4,7,8.
His symptoms are Bulbar. About his symptoms he is still walking and talking, though its getting harder to understand him and he is considering a cane soon. He fell just a few days ago. He just got the Peg tube put in a few weeks ago because chewing and swallowing was so difficult he was loosing weight. We are making his own food for the tube. Because he doesn't want the formula. He is on a plant based organic raw diet.
How am I coping? Honestly i'm holding it all together because i have to be strong for the kids... But its getting really hard doing everything for everyone. But i know that God is not done with him. He is only 30 years old. We have a lot more life to live! We are not giving up!
Tell me more about your family? How are you doing too?