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Our father is in late moderate/early late stage alzheimers. Our mother who is 77 is the primary caregiver. She will allow us to shop for them and setup their medications for easy use. My brother had to be put on their bank accounts to pay their bills but aside from that she refuses any help. The problem is that his illness is worsening. Once he is up of a day she can handle things. But the days are increasing that she calls early afternoon crying and says he won't get up, he has had no medication because she makes him take it at the kitchen table, he has had no food, he scratches into her arms and tells her to leave him alone, he has messed himself and she needs help. We both live an hour away but one of us will go. We know that she needs help but she refuses to let anyone but us into their home. They have lived there 50 years and do not wish to leave. We try to convince her to allow us to get someone in there just twice a day, to get him up of a day, then come back in the evening to help get him into bed. She does great with him through the day, it is just the beginning and end of day that she clearly needs help. We say we will arrange it and she says it is their house, if anyone shows up she will send them away! She is in denial about his disease and claims he will get over this. We have told her otherwise. His dementia doctor has told her otherwise. She refuses to believe anyone. What can we do? It is hard to have jobs and live an hour away and have to run up there over and over, but we can't just not come. What can we do? We have offered them to move in with either of our familys but she says they are not leaving their home. She doesn't drive and he can't. What can we do?

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Cncrnddaughter, many of us here on the forum had to wait for a serious medical issue before we could do anything such as bringing in caregivers to help our parents. My Dad wanted caregivers but my Mom it was no, nope, nada, never. Both my parents were major fall risks... [sigh].

One thing your could try with your Mom is telling her that up to 40% of family caregivers, who have no help, die leaving behind the love one they were caring. Those are NOT good odds..... and what would Dad do if she is no longer there? Maybe Mom never thought of that.
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It may seem harsh, but stop dropping everything and driving an hour to help. As long as you and your brother are willing to disrupt your lives, Mum can keep up the charade of managing independently.

Perhaps a report to APS that she is refusing to give him his medication unless he is at the table will be a wake up call?

Now the softer approach. It is likely your Mum is scared. She and Dad have been married for 50 years or more, They have lived in the same house 50 years. What will happen to her when he is gone? Has she ever lived alone? Are you and your brother thinking she will leave her home and move closer to the two of you? What about her social circle?
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Cncrnddaughter Nov 2020
She has stated that if anything happened to him she would come stay with us because she couldn't stand to live alone without him. She says they are fine for now but I don't agree. I have threatened to call aps but I wouldn't really. They may try to keep her away from him and that would kill him. They have always been so close they are like one person. If she gets out of his sight to use the bathroom he is knocking on the bathroom door calling for her. She tries so hard and does well through the day. Their house is meticulous and she has always been that way. She tries so hard but it is wearing on her. She has lost weight because she never stops. But if we mention help she is very defensive and says it is their home and she says who comes in and who doesn't. She says she has to take care of him, that it is her job. It is sweet but tragic. She needs help. She could have help. She just utterly refuses.
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I'm sorry for what your mom is going through.

When this happens (and sadly, your folks are pretty young to be dealing with this). it's a hard call as to what to do to help, and not make it worse, or offend your folks.

Honestly? Until MOM decides she cannot care for dad the way he needs, you are pretty much hamstrung. We battled with mother to get care for daddy, and it was pointless until SHE decided she couldn't handle him.

DO NOT move them into your homes...wait this out a little longer and then maybe bring up having help come.

Are you and brother going over there all week to help? Stop doing that entirely (I know this sounds so mean) but if she burns out and cannot care for dad, maybe she has to hit rock bottom before she can see what a couple of CG's could do to make her life better. I'd let neighbors know that they are w/o help--don't abandon them entirely.

My MIL DESPERATELY needs daily help. BUT, my SIL goes up to her house daily ( a 45 minute drive) and does whatever MIL needs/wants. She will not allow anyone in her home, so SIL just gives in. She's almost totally burned out & now MIL has told my DH to 'go to H3ll, she has only SIL to help. We're just waiting for her to fall again and wind up, like last year, in the hospital and then rehab. Her stubbornness will be her downfall.

Good Luck.
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She will accept help when you quit running each time she calls. That sounds cruel, but it’s necessary. You’re giving her the illusion that things are working as it is, when that’s far from the truth. When you and your sibling unite in saying you’re not available and can’t come, she will see the need for more help. And a good caregiver can get her to accept and even treasure the help. My dad was very determined not to have anyone in his house. We became less available, stopped making so convenient for him, and he finally relented. And I found a wonderful helper who won him over very quickly
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