She has been on Seroquel, and then Olawin to ease psychosis over 12 years, but now these medications don't seem to settle her. Sessions with the psychiatrist leave me more confused than ever? How do I stay positive and keep my sister who is very disruptive to the other minimally intellectually challenged residents of the small group home where she has been for 3 years? I would be so grateful to hear from anyone who is caring for an aging Down's sibling. We live in South Africa.
It's from an organisation called Down Syndrome South Africa, and their website also has links to a range of resources.
I wish I could share ideas for how to help your sister and support her staying with her peers, but as she is already receiving full psychiatric input (and it's not helping) I wonder if it might be time to think about preparing her (and her friends and family) for change? It may be that looking ahead to plan the best options you can for her care as she becomes more disabled is less frightening and frustrating than trying to prop her up in an environment that just can't meet her needs any more.
Do you talk to the other residents' families? I would expect them to be sympathetic and supportive, at least in principle, and not least because they'll know these issues may be their own in future. Talking and listening to one other might help with perspective - just a thought.
I'm so sorry you're all going through this. Is your sister still able to enjoy other aspects of home life, when she isn't experiencing her 'sundowning' sessions?
Sorry you are dealing with this. I have found DS individuals are usually happy and loving. Its a shame they have to deal with challenges all their lives to end up, maybe but likely, Dementia in their later years.
Maybe this would help your sister? Can they give her small tasks at the Care Home? They would have to praise her profusely, but it would give her a sense of purpose.
emedicinehealth.com/alzheimers_disease_in__down_syndrome/article_em.htm#facts_on_alzheimers_disease_in_those_with_down_syndrome
Her loss of interest and her getting so upset must be heartbreaking.
Surely it's for the support workers at the home to explain to the other residents that your sister isn't well, and everyone will need to help her a bit more just for now?
I hope the next assessment brings some clarity and a way forward. Please let us know how you're getting on.