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Kelly, this is a heart breaking decision. Where I live, there used to be really good large institutions that gave the residents quite a lot of freedom. One was on several acres of beach front land. They were all closed when the theories changed (quite incidentally to something cheaper), and parents were left with no freedom themselves. A mother told me bitterly “the only thing that stayed the same was that we didn’t have any choice”. When parents are younger, they usually think in terms of ‘while we are both still alive’. It’s worth planning now for ‘when we can’t cope’ because of ageing or illness. Best wishes and sympathy to the three of you.
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kbrown1912 May 29, 2019
Thank you so much for your caring. It means a lot. God bless.
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I understand your resistance to placing your daughter in an alternative living situation.

But surely you know that one day that decision will need to be made. It is very unlikely that as you age - you’ll be able to care for your daughter in your home until the day one of your passes.

Have you given any thought as to a plan for when that day comes? Even if that day isn’t now - but further in the future?

Is your daughter an only child?
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Ahmijoy May 27, 2019
Absolutely excellent answer, Rainmom! And my thoughts exactly. My in-laws told their oldest daughter and her fiancé they would be responsible for Donna decades before that became a reality. They set up a Trust for her so she could “pay her way”. When my in-laws passed, the transition was as smooth as glass for Donna to live with her sister. Actually, Donna moved in before in-laws passed because both of them lived in a facility for at least 3 years.
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With Dementia it will be harder to try to explain to her why she can't do what she does. Maybe a medication will help. Or like said, it maybe time to find a group home or somewhere she can be cared for. This will only worsen as the desease progresses.
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kbrown1912 May 27, 2019
We go to her psychiatrist who specializes in DD and dementia on Wednesday so will ask. Thanks.
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Does Kelly have a therapist or even a neurologist? If not, you may want to ask her primary physician for a referral to one.

Tendencies toward violence are serious issues. I’ve known DD people who can be very strong and determined. If they are challenged or diverted from what they want to do, they can use physical force to get what they want. When I was a youngster, I almost had my arm broken when I tried to get away from a large, strong girl who had mental challenges. The fact that Kelly now also has dementia has the potential to make her very dangerous, especially as you age and your reaction times slow down.

We want to protect our children and we feel that, when they have special needs, we must be responsible for their care all their lives no matter what. My challenged sister-in-law was lucky her older sister agreed to take her in when their parents passed, but not every family has that option. It’s a devastating and heartbreaking decision to find alternative living arrangements for a loved one. But, sometimes, it’s just the best option. It’s my fear that as Kelly’s dementia progresses, she will be more and more unpredictable. She could cause your husband serious injury.
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kbrown1912 May 27, 2019
Thanks but my husband at this point can handle it. We don't want to put her in a home. That is devastating to us. Thanks. God bless you.
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I know you've probably sacrificed a lot over the years to keep your daughter home with you but unfortunately there comes a time when her needs become greater than you can handle and you need to consider other living arrangements - I don't know whether that time is now because I don't know your ages, health conditions or how capable your husband is of defending himself.
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kbrown1912 May 27, 2019
Thanks. We are still able to take care of her. We are 70 and 67. It is heartbreaking. God bless you.
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