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MissGrammar Asked April 2018

Caring for down syndrome sibling. Any advice?

My mom has taken on the care of her sister who has down syndrome, after my grandparents passed away. Since then, it seems she has stopped any hobbies or activities. This all happened at right around the time my parents had retired. Actually, my mom had been fired from her job (but was close to retirement at the time after 30+ years at the job) while trying to care for her mother who was disabled from a stroke (when she was still alive) and sister and work full-time. I hope this makes sense, because I'm writing quickly, as I'm at work at the moment. I'm worried that my parents fight a lot because my dad wants to go out (actually, he wants to travel, but that probably wouldn't be possible with the caregiving responsibility), but my mom seems to not want to do anything. My dad always was more social and active than her, but she's much more a homebody now that she's a caregiver. She says it's difficult to get herself and sister ready, and she'd rather not take her with them. Lately, she's been asking me if I can watch her a few hours occasionally while they go out. I get the feeling my dad is very unhappy that she makes no plans and literally wants to do nothing. Yet, I can see her point that it's a lot of work to get her ready to go anywhere. Also, her sister doesn't get around easily and doesn't want to do many things (she'll complain that she wants to go home). I don't mind watching her now and then, but I think even working 40 hours is difficult (maybe I'm lazy...lol). I don't get out a lot myself. Also, her other sister is also retired, so I don't see why she can't help. I don't ask why either, because I feel like I didn't help enough with caring for my grandma (when other sister's daughter did help few hours a day, with pay, but she wasn't working at the time. I've been trying to think of how I can multi-task while watching her (maybe take her room to room and talk with her while I do extensive cleaning in my house?). I would also have to put my one dog up somehow, because she's energetic and hyper and aunt would be scared of her. I feel like I should help, since my mom babysat my kids on occasion (they're now 20 and 16). I feel bad if I don't, and I worry that my dad might leave. What do you all think?

JoAnn29 Apr 2018
I have to say that STRESS can cause a person to become overwhelmed and forgetful.

TNtechie Apr 2018
Your aunt may be happier living in a small group home 'residence" with other down syndrome adults. We have several in our area that are run with at least one caregiver always on site (more during daily activities and outings). The residents do most of the house and yard work and spend 2-7 nights a week in the house. Family frequently visits and also picks up their family members for an outing or a weekend stay. A family friend has a sibling that has lived in a group home for over 20 years. Someone in the family always picks her up for Wednesday night dinner and church service and she spends almost every weekend at her parents' or a siblings' home. The DS adult has her own life and is not as emotionally dependent on any one person so if someone needs to take time out for travel or to attend to their own health, it doesn't cause a big disruption.

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JoAnn29 Apr 2018
Maybe your Aunt would be better in a group home. At her age, DS people start having more health problems and Dementia. They also start being hard to control. I am assuming she gets SSD and Medicaid. Maybe Mom should contact her local County Disability Dept. See if there are group homes near Mom where Aunt can live. I just set my nephew up with DDD (Dept of Human Services Division of Develpmental Disabilities). If she gets Medicaid they may pay for Daycare. Maybe Mom can get respite care. Your parents should be able to enjoy their retirement. There are services out there. Just have to research them.

Shane1124 Apr 2018
Down Syndrome people are affectionate & very loving and enjoy interaction. I would try to find resources in her community where she can participate in group activities. She may qualify for transportation there and back as well.

MissGrammar Apr 2018
Thanks for your answers. I agree with both of you. At one point, I think my mom had said sis gets upset if she has to go to other sis house.

I feel bad because my mom gets so irritable with her (because she doesn't get a break), but it isn't her fault so it's not fair to take it out on her. She cries when my mom acts put out by her.

Not long ago, she had been going to a workshop/day camp. She fell while there, so now my mom doesn't want to send her. I told her she could be a volunteer at the place and go with her. She didn't seem enthused. In fact, she doesn't seem enthused about anything anymore.

Good point about the changed behavior when people won't put up with it. I know her behavior has also improved (but it could be the depression meds she's on). I think she knows she's lucky to have them care for her. I tell my mom she should have her do simple chores. She says she's too uncoordinated and clumsy for most chores. I guess it would make more work for my mom (she would have to redo).

Everything is complicated by the fact that my mom seems to rapidly be getting dementia. It worries me a lot, and is quite annoying. Every couple weeks, she'll mention that my dad is nagging about wanting to go out and do things. She acts irritated about it, but I think she worries that he's unhappy. I know he is unhappy because he has told me that she literally does nothing. I think he said he doesn't want to just live life waiting to die. This sounds like a pretty strong statement, but I guess it makes sense for someone who loves the outdoors.

My mom knew years ago that she would take my aunt when the time came, but I guess nobody is ever prepared for such huge changes. My grandparents were long divorced, yet they died within a couple months of each other.

Ahmijoy Apr 2018
My husband has a mentally-challenged sister who, when their parents died, went to live with her sister and her husband. It was always up to “LaFamilia” to entertain and babysit Sister. At the time, Sister was a spoiled, bratty teenager, who at 16 yrs. old refused to even bathe herself. Sister was coddled and hidden away by Parents-in-Law. They took a bus trip all the way to Northern Maine from Ohio once and had to turn around and come back because Sister was hysterical; she missed the dog.

I always thought that Sister would have been a perfect candidate for a Sheltered Workshop. There is also daycare for challenged adults. Go online and check these places out and share what you find with the family. Also, Brother-in-Law refused to put up with Sister’s lazy helplessness when she moved in with them. He set the ground rules and the transformation of Sister’s behavior was amazing. She now cleans, does laundry and helps cook. She has a purpose.

It’s a major, long-term obligation to care for a challenged adult, but there is help if you look for it.

Eyerishlass Apr 2018
Your mom watching your children, her grandchildren, is a far cry from watching a fully grown adult who is mentally disabled. The two can't be compared.

If you're being asked to step up I see no reason why you can't inquire as to why the other aunt can't step up since she's retired and you work full-time. Why isn't the retired aunt being asked to participate in the care of her sister?

MissGrammar Apr 2018
Does anyone give any of you a break? My mom and her sister are both in their mid to late 60s, and to make matters worse, I think my mom is getting dementia. I suppose it could be depression also though.
My mom had promised her mom (apparently long ago) that she would care for her sister and not put her in a home, after my grandparents passed.

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