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What would you do? (parents of children with disabilities)

I work with mentally and physically disabled adults. I have a woman who has down's syndrome who is around 50 years old. Her mother is her primary care-taker *not guardian* and she is very active in her care. The woman is pretty active and can do a lot of things independently. But lately we've been noticing that she seems confused a lot. She is forgetting how to do jobs that she has done for 20 years, one day instead of writing her name she wrote a series of numbers down etc. I called her mother last month when we first noticed all of this and the mother just blew it off saying she was getting used to being back at work. (She was off from Dec-Feb due to illness). Well we had a meeting with ehr mom yesterday and the case manager brought up possibly getting her tested to evaluate for early set alzehimers. The mom was pissed! She said she's never thought about, she's not going to think about it, and she does want to hear any more about her daughter being confused. I cannot even imagine what this mother has gone through trying to raise her, and continuing to raise her. But if there was something that you knew you could do to help your child, wouldn't you do it? I know you can't cure alzehimers, but there's things they can do to at least prolong it a little bit. And we would be able to change our care plan for her. Right now we are trying to teach her how to use the computer and she can't even remember how to use the keyboard week to week right now. But we have to keep trying because it's in her plan. and we need to be working on maintaing what she has, not learning new things. I know it's a hard situation, like I said, I can't even imagine what this mother has been through... But I still think that I would do anything I could for my child.

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Asked by Anonymous at 6:47 AM on Jun. 8, 2011 in General Parenting

Answers (7)
  • Give the mother time--she could be in denial for right now. Yes, I know it's hard to sit by and think "you would think she would do something' ,but as you said, this mother has been through a lot and most likely her daughter has over come a lot and now someone is saying something else could be wrong with her. Keep working with her and subtly bring up these forgetful moments, That combined with her seeing somethings might be enough. If not, you might have to take other actions.


    Answer by layh41407 at 6:51 AM on Jun. 8, 2011

  • You also have to remember that back when her daughter was diagnosed she was told to basically put her in home and forget her. She would never amount to anything. Never do anything for herself, she would have to be taken care of like a baby. It's mothers like her that broke through the barrier for these kids. So right now she's probably going back to that time and thinking nobody's going to tell me what my child can and cannot do. Be patient with both.

    Answer by daps at 7:01 AM on Jun. 8, 2011

  • I am my adult son's guardian. It is exhausting at times, trying to live my own life, trying to manage his. I think it is worth seeing if her daughter straightens out after awhile. It could be disruption of services. If it doesn't improve maybe mom will agree to testing.

    Answer by namesjusgrammy at 7:03 AM on Jun. 8, 2011

  • When I worked in hospice I had a patient living with down syndrome who was in her 50's. It is not too comon those individuals live that long from what the family told me. Many are born with significant heart issues and tgey get older their health more fragile. My guess is she is declining and it will become very obvious eventually. It may be that there is nothing to do but wait until either the woman living with down syndrome or the mother are ready to seek medical assistance and further intervention. As long as you think this client is safe and not being neglected in any way....they continue to have the ability to make decisions. Now if tge client wants further medical assistance and mom denies it - then it can be reported and perhaps adult protective services can encorage mom to be more open to an evaluation. Dementia by the way, can be reversable, depending on the cause.

    Answer by frogdawg at 7:06 AM on Jun. 8, 2011

  • Can you volunteer to take the patient for evaluation. I'm not sure what specialist can diagnose Alzheimers. Do you?
    As any other condition and diagnosis is going to take a series of tests for a Dr to be able to diagnosed with the illness/condition.

    Answer by Cafemomoftwo217 at 7:08 AM on Jun. 8, 2011

  • It could be a UTI or other infection. Clear up those and the cognitive functioning can return back to where it was. If it is the onset of dementia then there are medicationsand exercises to do to help keep tge mind more active and sharp longer. While you can't do much now about medication you can suggest some mental activities for your client. You do not have to say these are because we are concerned she is forgetful. It is all in tge approach. Tread carefully is how I would do it. Unless the client is neglected I would chose to walk the journey as their partner instead of trying to grag them down the road of resistance.

    Answer by frogdawg at 7:12 AM on Jun. 8, 2011

  • I have two special needs kids and I believe in my heart God chooses mothers of special needs kids for a reason. Yes we will fight for them, were patient, and we would do anything for them, but we are also realistic. I pushed my son who has autism and it worked for him, my other son has a mental disorder and nothing works for him. We get to know our kids, just like you know your kids. This womans mom has her reasons whatever they might be and you havent been there the entire time to know why she chooses to act how she does. You need to not judge her based on the limited experience with the family itself.

    Answer by gemgem at 7:20 AM on Jun. 8, 2011

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