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Alpha3 Asked September 2014

How to cope with the despair of being wrongly accused and the struggle of getting no cooperation?

My husband is starting to exhibit 'sundowning' behaviour more and more. Looks at me with disdain and accuses me of taking his things and giving them away to others. His mood towards me is often black, he refuses to follow my orders, e.g. "Would you please wash your hands - yes, we have to wash the hands when we come home", "Will you please let me give you the puffer" and then when he finally does it he breathes in through the nose although I plead - "you have to breathe in through your mouth", "Please, sweetheart, take your medicine now", etc etc. He feels bullied and nagged but I have to do this to preserve his health. He asks "why" at every turn and then ignores or cannot understand the explanation. Is there a medication to calm him down, to make him more cooperative?

pamstegma Sep 2014
Ordering a person with dementia to do something is like ordering a toddler not to poop his pants. Both will do everything they can to defy you. You trick them both by convincing them it is THEIR good idea.

Alpha3 Sep 2014
Thank you, MaggieMarshall. The Nurse Ratchett comparison really makes me laugh at myself. Maybe I will remember that next time I get frustrated. You and Eyerishlass are so right. One can't teach an old dog new tricks, especially one with dementia. I guess we all have our days. I will take a deep breath and carry on ...

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MaggieMarshall Sep 2014
You should most certainly discuss his behavior with this doctor. Sounds like if you could find something that would cause him to be more compliant, your personal relationship would improve. If he complied, he wouldn't look at you as being Nurse Ratchett.

In the end, though, Alpha3, ask yourself if it's WORTH your personal relationship at this difficult time for you TO nag him to do certain things.

Wash his hands? I can't even begin to tell you how low that is on MY care giving priority list. If he doesn't touch YOUR food, don't worry so much about it. Or! Have some sanitizing wipes next to him and hand him one of those -- as you use one yourself.

Taking medicine? Dang. I'd call the pharmacist right now and see what of his meds could come in liquid form and what ones could be crushed. Sneak 'em in his coffee or orange juice (that's always a good one), or in applesauce or ice cream or . . .

You said something telling to me: "He refuses to follow my orders," Honestly? These are Freudian-slip kinda things. "Orders" -- know what I mean? How do nursing homes administer medicine? They cajole and otherwise manipulate. Rarely do they give orders. Oh, I get it. I'm not criticizing you. I'm merely pointing out that what you DON'T want to get into with a dementia'd loved one is a power struggle. Let me tell you what's true: You can't win. ;)

It's all too easy to get resentful when caring for a loved one. I love my mom to bits-and-pieces. I'm an only. Been caring for her for a year. I can't tell you what lessons in patience I've learned. And -- how many times I've failed the test.

I do so wish you well. Ours is a long and lonely road. I hope you can find something that works. Being tied up in knots all the time will burn you out faster than a firefly.

Eyerishlass Sep 2014
"He refuses to follow orders". That's because he can't. He isn't rational. We can't expect people with dementia to be rational. It may seem like a very simple request to us but it's not to someone with dementia. Your husband isn't being difficult intentionally, he has a brain disease that affects his behavior and prevents him from understanding the most basic of questions. I'm sure it drives you crazy when he tries to inhale on the puffer with his nose but he doesn't understand anymore how to use it.

Maybe his feelings of being bullied and nagged are valid. We can't expect our loved ones with dementia to change, we are the ones who have to change to suit them and their illness. No one who cares for someone with dementia is patient 100% of the time. We're not perfect and we get upset and irritated. That's human, it's normal.

When he asks "why" and then ignores or doesn't understand the explanation that's dementia. That's not him being difficult on purpose. It's the disease.

There is no medication that will make him more cooperative.

Have you read "The 36-Hour Day?" It's a personal account of how to care for someone with dementia.

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