seetao Asked July 2012

What can I do if my mid-stage AD sister thinks I am too controlling in her life?

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My sister is mid-stage AD. My daughters (17 and 23) live with her in her house and manage daily life, etc. I work full time, my older daughter stays home with her and goes to an online school, and the younger is still in high school. My niece and nephew help by handling finances and stepping in for respite. Legal arrangements were made with my sister's input and approval when she was first diagnosed 3 years ago. Now, she is becoming delusional and is very angry we won't let her go spend time with her male friend who lives several hundred miles away. I suspect she is complaining to friends and neighbors who know she has AD but may still believe her. I've spoken with those people, but one couple in particular feels we are too controlling in her life and encourages her delusions, as does her male friend. Anyone else have a similar problem? Any advice?

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seetao Jul 2012
Thanks to all for the good and practical advice!
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Jaye Jul 2012
very often people are not aware of what their needs really are. Why dosen't the male friend come visit her? Her traveling is almost a nightmarish scenerio if you ask me. I admire how you are caring for her, and if she could express her gratitude I am sure she would. take care...
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i agree with all of you. I would aknowledge educate and dismiss. Your primary concern is your sister and her safety and care as long as you and your family are doing that then the others around can either help or kick rocks i agree with jb great idea i might use that as a template... As for the friend not sure all the details but he needs to be treated the same as the neighbors if they are not part of the solution they are part of the problem (saying of the day) i wish you luck and keep up the great work i cant say it gets easier esspecially with AD but hopefully we gave you some direction in fixing this issue till next time good luck and god bless
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momhouseme Jul 2012
to add to the hi neighbor scenerio, do a little reasearch on ad and delusions maybe something you can print out and then copy for the people that are butting in; that is educate them in one piece of paper explanation so they realize its the ad. they have alot of nerve making their opinions known when you already have your hands full; your family gets it and you might tell said neighbor that too and you need neighbor to get on board or keep her opinions to herself, said better of course than i said it.

so many people do not understand ad and the things that can take place for a patient. my mother too was delusional but don't think she ever experienced hallucinations. Of all people my podietrist completely understood what i was going through i almost fell off the table. he's a good wise smart man.
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ladee1 Jul 2012
JG had some great suggestions.... this job is hard enough without 'community input'.... continue to do a wonderful job with your sister.... in any other circumstances you probably would not allow the neighbors or family friends express their feelings or suggestion.... each situation is different... and with the family support you have,,,, noneya..... none of ya business, but with kinder words.... let us know if the "Neighborhood Committee on AD" stays out of ya'll business. And awesome to hear about a whole family involved.... Kudo's to you all...
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seetao Jul 2012
Thank you, NancyH and jeannegibbs, for your answers. I am new to this forum and the idea of reaching out to others who are living with similar issues. I do not think of this community as outsiders, but as a resource and sort of like "comrades in arms" LOL! My family is great, but we run out of ideas and those who don't actually live with us can't really understand the drama that arises with these problems. Part of our issue is that we're trying to live a "normal" family life as we provide support for my sister. In some ways, that gives her even more support - more people around, a pattern to the day, etc. But in other ways it makes things difficult. The friends who are not supportive of the way we choose to live are also dealing with AD and are retired social workers (my sister is a retired nurse) and they think their way is best. Unfortunately, my sister agrees with them, because she resents us "controlling" her because she can't see the chaos that ensues when left to her own devices. Anyway, the male friend likes to come get her and take her home with him for a few weeks at a time, but now that her disease has progressed she is unhappy and very thrown off when she returns. We suggested he come to visit instead, and he did once, but there is nowhere for him to stay in our house and he got really angry about that, even though he has close family in the area. Sometimes there are no clear answers, but you just have to deal, and I think this is one of those situations! I really appreciate your support. Hang in there with your own situations!
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jeannegibbs Jul 2012
I agree with Nancy's sentiment. Let's see if we can work on rewording the message a little.

"Thanks for your concern and interest, Neighbor. I'm so glad that Sister still has her old friends in her life. You may have noticed that the AD is progressing. We need to make decisions in her best interests now. I'm sure we won't always make the right decision, and we'll probably never know in some cases what was "right" or "wrong." But I assure you that every decision is made in love and wth Sister's best interests at heart. If you have any insights into Sister's situation, you can call me at any time. Thanks for caring."

If Neighbor wants details and expects you to defend your decisions, "I'm sure you can appreciate the need to respect Sister's privacy. We keep all medical details within the family."

I'd only have these conversations with the people who appear to be encouraging delusional thinking.

Just out of curiosity, why isn't Male Friend coming to visit her, instead of expecting her to travel?
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NancyH Jul 2012
You have almost your whole family pitching in and helping in one way or another with your sister, so you sure don't need outsiders telling you what to do. As long as you and your family are all on the same page, then tell the neighbors to butt the heck out. Well... you might want to word it a little better than that I guess. :)
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