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Old 10-03-2006, 09:04 PM   #1
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dolores129 HB User
43 year old sister with ds

I am new to this site. I have been on the Alzeheimer's /dementia board for the past 2 years. I had to place my mom in a nursing home and have taken my sister in to live with my family (husband and 17 y.o daughter). My sister was the center of my mom's life. My mom retired early from her job so she could care for her full time. As mom got more and more ill, she obsessed about my sister so she got to not letting my sister do anything for herself. I became more and more involved as mom got more ill; I made sure my sister attended the local MHMR day habilitation program 5 x's a week versus the 2-3 days my mom thought she could handle. My sister has done great with the daily schedule.

I am finding some frustration as we all adjust to these new responsibilities. My sister is having to be trained to be more responsible for herself--interestingly she is capable of learning and doing stuff for herself. My mom would feed her a meal and wait for her to finish and refill her plate without my sister even asking for more...my mom then proceeded to pick up her plate, etc. My sister never had to do anything for herself --unless she wanted to...We are teaching her to ask if she wants a second serving; she is now making her own bed; getting herself dressed (although I still need to get her shower started and turn off the water for her) but she has made some progress.

My point is my family always treated her as incapable of doing anything for herself for her 43 years and now we are having to train her to do more for herself. I believe strongly that my mom, despite her love for my sister, did a disservice to my sister. She never planned for the long term ...somehow assuming she would be able to care for her for all her life.

I sometimes feel bad or guilty as the "task master" or as the one trying to teach her or get her to do for herself. but I want her to be able to take care of herself.

I know times are different now...more resources, more educational opportunities...my sister went to school before special ed needed to be integrated in the school...she went to a separate physical building.

I love my sister and as I have raised my daughter to be independent, I want her to be able to take care of herself. We just want the best for our loved ones.

 
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Old 10-04-2006, 07:43 AM   #2
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Karen W. HB User
Re: 43 year old sister with ds

HI,
Well it sounds like your doing a good job, I know a few parents who do everything for there specail needs son or daughter, they do it in love but at the same time, yes they are depriving them of decoming independent. At our house, my son is given easy jobs and inreturd, he get $20.00 every week, he is proud of what he dose, he loves to wash the windows and fill the dish washer. Prasie is the best thing you can do with them, they love it and makes them fell very proud. You have taken a big responsability on and your sister should be thankfull she has someone like you. How is she adjusting to living in a new home??
Karen W.

 
Old 10-05-2006, 05:35 AM   #3
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dolores129 HB User
Re: 43 year old sister with ds

Thanks, she is actuallly doing very well. I think she was ready for a change as my mom worsened and she had to deal with mom's behaviors. She seems to have made the adjustment well. I asked at the hab center how they saw her and they said it seemed like she was reallly growing and demonstrating more independence at the center.

We are now trying to manage the times I or we need to attend out of town things. We have taken her with us for some but my daughter (who is our only child) is a sr in hs and we are scheduling campus visits. We want to make sure we are giving her 100 percent of our attention during this important times. MHMR has a respite house and we are going to visit it next week. I know she will be okay but I also know she is not going to like it at least the first time but I need to have plans in place if we need it. I keep thinking ...when my daughter was 3 or 4 and my husband and I took our first trip without her...she didn't like it, but she learned that we always came back and she would end up having a great time while we were away. I remember feeling guilty but I knew that my husband and I needed our time together. I amtrying to tell myself that....because I am dreading my sister's reaction and feeling guilty.

So much change....but i guess it work itself out.

Thanks,

 
Old 10-30-2006, 05:41 PM   #4
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Carol47 HB User
Re: 43 year old sister with ds

I am 4 years older than my sister with DS. I can empathize with what you are dealing with. I remember when I was about 21 and the difficulty my mom had in accepting help from another source. My sister went to school throughout the area until she was old enough and they wanted to have her go to a training center about 10 miles away. She went from being a shy, hardly speaking gal to advancing into her own supervised apartment with a room mate and a job. She orders for herself, is learning sign language and has advanced more than all of us EVER imagined!! She is proud of her job, enjoys going home on the weekends but has no problems returning to "her" apartment that she has furnished. Please check in your area to see what options are available for HER to advance to her potential. Like I said we had no idea she could/would advance as much as she has. Good luck! ( My sister is now 43 )

Last edited by Carol47; 10-30-2006 at 05:44 PM.

 
Old 12-04-2006, 10:21 AM   #5
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dolores129 HB User
Re: 43 year old sister with ds

I am 2 years older than my sister. Just came by to revisit board and found your message. I agree with you about helping her help herself. We have made progress in the past 2 months. i am also trying to inform myself about supervised apartments or group homes for the future. Although it has been quite a responsibility and I get tired of it, I see her becoming more independent and I think she will do well in a group home. I am unsure as to when this will happen but I moving forward with this as a plan.

One day at a time has to be my motto. I know you understand ...growing up with a ds sibling. We are the only two...no other siblings and no other family. Mom is in the nursing home and our father died 5 years ago.

 
Old 03-19-2007, 09:49 PM   #6
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Suzy's Zoo HB User
Re: 43 year old sister with ds

Quote:
Originally Posted by dolores129 View Post
I am new to this site. I have been on the Alzeheimer's /dementia board for the past 2 years. I had to place my mom in a nursing home and have taken my sister in to live with my family (husband and 17 y.o daughter). My sister was the center of my mom's life. My mom retired early from her job so she could care for her full time. As mom got more and more ill, she obsessed about my sister so she got to not letting my sister do anything for herself. I became more and more involved as mom got more ill; I made sure my sister attended the local MHMR day habilitation program 5 x's a week versus the 2-3 days my mom thought she could handle. My sister has done great with the daily schedule.

I am finding some frustration as we all adjust to these new responsibilities. My sister is having to be trained to be more responsible for herself--interestingly she is capable of learning and doing stuff for herself. My mom would feed her a meal and wait for her to finish and refill her plate without my sister even asking for more...my mom then proceeded to pick up her plate, etc. My sister never had to do anything for herself --unless she wanted to...We are teaching her to ask if she wants a second serving; she is now making her own bed; getting herself dressed (although I still need to get her shower started and turn off the water for her) but she has made some progress.

My point is my family always treated her as incapable of doing anything for herself for her 43 years and now we are having to train her to do more for herself. I believe strongly that my mom, despite her love for my sister, did a disservice to my sister. She never planned for the long term ...somehow assuming she would be able to care for her for all her life.

I sometimes feel bad or guilty as the "task master" or as the one trying to teach her or get her to do for herself. but I want her to be able to take care of herself.

I know times are different now...more resources, more educational opportunities...my sister went to school before special ed needed to be integrated in the school...she went to a separate physical building.

I love my sister and as I have raised my daughter to be independent, I want her to be able to take care of herself. We just want the best for our loved ones.

Hello this is my first time here too. I also have a sister that is 43 yrs old that is living with my Husband and I now as of 7 weeks ago. She is also blind and has eating problems where she has lost 60 lbs. A lot of test going on with her, doctor visits and the hospital. She too lived with our Mother (who will be 80 yrs old) who treated her the same way except our Mother was emotionally, mentally and physically abusive to my sister. I take her to the ARC dances and concerts, she loves music. I also try to help her to be more indepentant but it is hard since she is blind but I think it is also very important. I don't know what state you live in? but here they have Acess buses that will pick them up and take them to the dances and day activities that teach them or help them with being more indepentant and it gives you a break at the same time.

Last edited by Suzy's Zoo; 03-19-2007 at 09:55 PM.

 
Old 03-31-2007, 09:16 AM   #7
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dolores129 HB User
Re: 43 year old sister with ds

Good morning! It's been months since I have been on the boards. I revisited the Alzheimer's board as my mom fell last night at the nursing home and I spent the evening at the ER. I came back to check these boards and found this new posting.

It is amazing how many people are similar positions. I can only imagine your challenges with your sister being blind. My sister is generally healthy. It will now be 8 months since she moved in with us and she is doing good. She is served by our local MHMR centers; she receives several services. In Feb we took her to the respite house (she is eligible for 30 days/year) for the first time, she seemed to enjoy it. I scheduled her in March and then cancelled due to a change in our plans and she was actually disappointed. I think she had a good time and she knew we came back for her.

I can't lie but I have definitely had my moments of MAJOR frustrations and tiredness. My daughter is 18 and getting ready to graduate HS and go away to college. I figured I was done getting children (I only have one) up in the morning etc then I got my sister; its like having a young child again....no sleeping in or "taking care of only myself". But such is life.....I have often wondered if God only gave me one child as he knew i would have 2 (my mom and sister) to take care of later in life.

My sister has lost weight but that is due to better diet and more activity. She had a major surgery in December and she did remarkably well. She looks healthy and generally happy. I am adding tasks for her to learn slowly. She now turns her shower off in the morning--she is working on turning on water but its confusing for her. I am thinking I will upgrade our shower to a single handle type--which would be easier for her. I am teaching her how to sign for her meds at the pharmacy (just signs her name on the receip) but she gets down with me rather than sitting in the car. I also take her to the grocery store with me and she pushes the cart and places some items in the basket. When it is a "small" purchase, I am teaching her how to scan the item. Now, this doesnt' happen all the time....I am not alway patient enough...especially if I am tired from work but all I can do is try as I can.

I wish the best with your sister. I am sure she must be very happy with you and your husband but as she expands her world you may find that she will be happy in a group home or such. My sister loves social opportunities and being around other people. I know she loves us but I think she enjoys her social network (the day hab program she attends, the people, and the social activities they provide). My long term plan is to find the right place for her. She has made so much progress in self care; I know we'll be able to work this out for her and us.

God Bless you!

 
Old 05-11-2007, 12:30 AM   #8
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lovemysiswds HB User
Re: 43 year old sister with ds

Hello again, I replied before with the name suzy's Zoo, I lost my password. Anyway .... I am Happy to hear your sister is doing so well. My sister was in day activities until she started vomiting so she can't come back until that is under control. We don't know if it is from the abuse or an eating disorder. I am hoping one day she can go to a group home who will understand her and have the patients it takes to work with her. She is a self talker that repeats things over and over for hours, since she is blind she has her hands in her food, and since she doesn't want to eat many foods, she spits food out and rubs her spoon on her tongue then when she is done eating she vomits liquid up. She has been to a specialist for upper GI disorders. We are still looking for the right help. So I understand fully that it is very hard at times. Some time I just have to go outside and work in my garden to listen to the birds or anything besides repeats for hours. But I love her like you love your sister. I never had children of my own but I raised a few and I raised my sister for some time too. Our mother she was living with has dementia now and I wonder if my sister does too. Your a great sister for helping your sister and God will have a reward for you. Take care.

 
Old 05-15-2007, 01:55 AM   #9
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miyu HB Usermiyu HB User
Re: 43 year old sister with ds

Dear lovemysis

I’m glad I came across your post because I have also seen situations similar to yours and I may not know the best course of action, but I can only give my advice.

I can understand how your mother thought that her way of raising her child was to help her get over "the way she is", sometimes people believe that if you are hard on them, that they will change. Today we know the signs of abuse. I have seen people beat children because they are crying. But it doesn’t work that way right. We know that now from many many years of serious scientific studies about human behaviour. Its is now becoming common knowledge. But I’m very sure the way your mother raised your sister has played a big part of the way she had developed. I have seen it before.

But it is true there are studies that say that a high amount of people with ds by the age of 40 will eventually develop Alzheimer's disease. And since it runs in your family it is also very likely.

I also understand how you just need to get away, how hard it is to hear her repeat over and over again, do you have any training in special needs? If not it may be even more difficult for you, sometimes you just don’t know what to do to stop a certain behaviour. and if you were not related to her, I’m sure you would easily quit your job, but you love her so you won’t.

I personally would think of other options before you consider ever sending her away to “special care.” Because its not so special. The years of damage your mother has done without knowing, could take years for her to improve, and I don’t think a care facility can do that, they will only accept the way she is, and give her food and send her to bed. One thing that I found with people with DS similar to this is that they need someone next to them constantly. My advice is that you hire help to come in to your home full time. Or even part time, that extra help with your sister will do you, your husband, and your sister loads of good. She can then have someone with her all the time, weather it’s you, a social worker/special care, or both of you. but you can't be with her all the time without going crazy O_o

But the benefits of hiring help could do her lots of good, and the benefits of her living with you could also do her lots of good. Together, you can really give your sister all the love she needs so she can return that love to you.

Another thing you might want to consider is learning sign language, and while you talk to your sister sign as well. I have read a lot about the benefits of sign language with people with down syndrome, and with children, it is proven that the brain is a muscle and it needs to be worked all the time. Speaking language might be harder for her then most. Maybe she can hear you, but she just cannot respond. and so she just keeps repeating nonsence... We all work with different parts of our brain, everyone (including myself) are stronger in some areas and really struggle in others, all of our brains have developed differently.

Many older people work their brain everyday to prevent Alzheimer's disease. And I have heard of studies that have shown great results with studding and working that muscle. the brain is a muscle and if you work it it will get stronger. In a sense learning sign language might be something to benefit your sister. And if you do decide to try that, it is great to also teach your children. And see if the help you hire would also be interested it trying that.

I'm jsut giving some options to try and make things not only better for your sister, but also better for you. I really sympathize with how hard this is for you.

Last edited by miyu; 05-15-2007 at 02:01 AM.

 
Old 05-15-2007, 02:04 AM   #10
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Re: 43 year old sister with ds

Ohh sorry, I just read your post again, and I see that she is also blind, so I guess sign language will not be an option for you. ooops sorry...So I guess the only way to stimulate her brain is through touch

Last edited by miyu; 05-15-2007 at 03:03 PM.

 
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