Some of you might remember that my brother Ned is 40 years old and has Downs Syndrome. He still lives with my 80 year old mother, who suffers from an "Alzheimer's type" dementia. We have an angel of a housekeeper who attends to their every need.
In my opinion, Ned hasn't had the chance to find his full potential. Mother has dedicated her life to keeping him close and protecting him fiercely. I'm not faulting her...I'm just saying that given the opportunity, he could have gotten a job and probably flourished in the right group home situation. We've tried for 20 years to make some changes for him, but she will not hear of it. We could force the issue but there's no doubt in my mind that without him by her side, she would lose ground quickly and be overtaken by the memory loss. He is her reason for holding it all together. As it is, he just stays home with her and goes where she wants to go (which is all in a five mile radius) and doesn't often get to make any kind of decision at all other than what he might like to eat or watch on TV.
People who don't know Ned might think that he isn't always aware of what's happening, but he's fooling them, let me tell you. He is Mr. Personality and has never met a stranger. He can tell you who sings what country song on the radio and knows all the words to most of the songs. He can tell you all SORTS of things and has become mother's "memory." It drives me nuts sometimes when she asks me the same question five times in as many minutes and, bless Ned's heart, he never gets a break from it. Hank asked him one time, "Ned...How do you think your mother is doing?" Ned replied, "Well Hank, I try to help her out but sometimes she doesn't remember things and gets aggravated with me." Yep...he knows what's going on...
One afternoon, Hank was over at their house and decided that he was going to bring Ned to our house to spend the night. They'd go over to the farm and ride around in the truck and on the four wheeler. It took some convincing but Mother finally gave in. Since it was about supper time, they went to the Burger King drive-thru. Listen...Ned is NOT going to eat a bite EVER unless he says a blessing over it...not even a snack... so sitting there in the car, they bowed their heads and Ned said, "Thank you Lord for this food. Please bless Mama and our family and Thank You Lord for GETTING ME OUT OF THAT HOUSE! AMEN"
Hank and I have talked about it a lot lately....we don't quite know how we're going to do it, but there's no question that we've got to do whatever it takes to get the poor fellow out of the house more often.
Thursday, November 13, 2008
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Awwww. That is sad. Ned would probably really enjoy a group home where he could make friends.
ReplyDeleteBless Ned's heart. Loved that story.
ReplyDeleteHe is lucky to have a thoughtful sister and brother in law.
Maybe he can have a sleep over at y'alls once a month? Once a week?
Bless Ned's heart. Loved that story.
ReplyDeleteHe is lucky to have a thoughtful sister and brother in law.
Maybe he can have a sleep over at y'alls once a month? Once a week?
LOL - that is priceless! How cute . . .sounds like he needs more time visiting sis! hehe
ReplyDeletethat's a really tough situation, especially since it seems your mother depends on Ned so much. Maybe you could hire Ned to do some work for you or another family member. That way he is making money, making decisions and getting out of the house, if maybe just for a little bit.
ReplyDeleteHehe, that really made me smile!
ReplyDeleteWhat a cute story about your sweet brother! I am still laughing! Take care - Kellan
ReplyDeleteThat is so sweet :) Ned sounds like the sweetest son!! And I loved his prayer!! Just goes to show you everyone needs a break now and then! And I agree with you, given the right opportunity, he could definetly flourish and find fulfillment for himself!! My parents are very close with a family that has a daughter with DS. She is so amazing! I have grown up with her and she is 17 years my elder, but she has taught me SO much about life!
ReplyDeleteThe pastor in the church I grew up in has a son with DS. He is one of the nicest people I know. Whenever I go home he is usually one of the first people to greet me. People with DS have warm fuzzy place in my heart. They are special people. But I guess even they have a limit.
ReplyDeleteSweet Ned!! Love his prayer!!
ReplyDeleteWhat a very spechale and amazeing brother you have. Bless his heart for being so honest.
ReplyDeleteI sure hope there is a way that he can get out more often.
Oh my gosh, I don't know whether to laugh or cry... What a tough for all of you.
ReplyDeleteNed sounds like a lovely man and you are a loving sister. I wish I could take him to Burger King sometime to "get him out of the house"--what fun I know he would be!
ReplyDeleteOh wow. I think Ned sounds like an awesome person! I can't blame you for feeling the way you do, but I agree he needs to get out more. Maybe church events? Or a workshop? I bet he would love being able to get away from Mama for a bit.
ReplyDeleteThat's so hard!! I'm thinking of you!
ReplyDeletewhat a darling blog.. can't wait to read more!
ReplyDeleteThanks for making me smile today! I love this story.
ReplyDeleteAww...that's kinda sad, yet sweet too...good luck to you all...
ReplyDeleteWOW! There must be so much meaning behind that one sentence that Ned uttered in prayer to the Lord. He sounds like he is an EXTREMELY special spirit and has a heart and personality of gold! I hope you guys are able to figure out what needs to be done to help two people that you love so much, in need. Keep us posted. (BTW: love the new blog design. Obviously I haven't been here a few days...)
ReplyDeleteThere is no doubt you will find a way to do it.
ReplyDeleteWhat a precious story! And what an excellent sister you are!
ReplyDeleteBless Ned's little heart! I know exactly how he feels. I need to get OUT pretty soon too. I am about projected out here on the farm.
ReplyDeleteNo fear, a trip to the big city is around the corner to visit all my big city relatives(6 brothers and sisters and Mama) in metro Atlanta.
Love your story.
thanks for the visit and comment.
Have a great day.
Pam
What a wonderful outing. The prayer was sweet and very insightful. There are some great programs out there. I have looked into a few with the parents of some of my students that I have kept in touch with over the years ~ just be careful and asks a lot of questions.
ReplyDeleteGood luck,
Jo
you are a wonderful sis and your husband sounds like a cool guy! i bet if you took Ned out once a month, it would change his life, i mean, listen to his prayer. remember, it's the small things in life that make the most impact..great story!
ReplyDeleteAwwww, I just found your blog and I think I love it. I have a 24 yr old daughter kind of like Ned and I worry that I don't get her out enough either altho she does go to work and such. Ned is so lucky to have you and your family to help him and your mother. The stress can be a killer sometimes.
ReplyDeleteHugs,
Donna