Nonstop for my dad. Need suggestions.

jwgl27

My mother has had dementia for 2 years. My father is taking care of her in our own home. Recently, she has been nonstop needing something after helping her just 5 minutes ago. If no one answers right away, she'll throw her cup on the floor, then she will knock her tray down. She also intentionally tries to roll of the couch onto the floor. My father can't sleep at night because of constant care for her. He's in the camp where he has money for retirement and he has just enough to not qualify for help and too little to have someone help him. Any suggestions to help him with her would be greatly appreciated.

terei

Has he seen CELA, an expert in elder law. They may be able to help your father structure his assets to have her placed with Medicaid help, depending on her condition + the state that they are in. It sounds like she needs 24/7 care in a facility. The stress this is putting on your father could be deadly.

SDianeL

sadly it will only get worse. Her brain is broken. She’s not doing it deliberately. Medicare doesn’t help. He should speak with an attorney to know his options in your state. His health will suffer without help.

jwgl27

He is speaking with an attorney to work out the financials. He may be able to get the ball rolling and help us out. I just don't want him having to it all. I appreciate the comments.

harshedbuzz

@jwgl27
Dementia is about so much more than just a lousy memory. Some of this behavior can be ascribed to the other losses that come in the early phase of the disease.

PWD lose empathy. It may be beyond your mom to recognize or care about the impact her demands are making on your dad. She can't see beyond her own wishes in the moment.

PWD lack the ability to entertain themselves. Between their poor memories, apathy, inability to initiate an activity and difficulty with focus, even passive entertainment like TV is unrewarding for them. She needs dad to be her entertainment coordinator.

Many PWD have considerable anxiety which manifests in rigorous attachment to their primary caregiver. Sometimes this results in a behavior called shadowing where they follow their caregiver everywhere. Sometimes the PWD will refuse assistance or interaction from others much as a toddler who only wants mommy might.

Your mom sounds just like my dad. One aspect of this that I observed in my parents was the negative feedback loop they created together. YMMV. Emotional intelligence remains intact well into the end stages of the disease. A PWD might not recall what they had for breakfast, but parsing the mood and emotional state of their caregiver is like a superpower. My mom was angry and frustrated by dad— he'd not been a great husband; he had an alcohol-related dementia in addition to ALZ and he was just difficult— and it showed in everything interaction they had. Her behavior unsettled him. His brand of anxiety manifested as agitation and a worsening of his behaviors.

What helped was having mom read and reread Understanding the Dementia Experience. She was reluctant to take advice from me, so I lined her up with a local IRL support group where the members told her exactly what I did which she tried at home.

One strategy recommended that helped with dad's constant calling for her was for her to "check-in" proactively. Instead of avoiding him, she'd pop into the living room where he spent his days— cheery smile on her face— and would say "hi". This helped a lot. That said, if I visited, he wouldn't leave her alone unless I spent time with him first.

The other thing that helped was getting dad to a geripsych for medication management. The doc prescribed a cocktail of low dose psychoactive meds that helped to dial back some of his anxiety which made him more amenable to strategies like redirection and validation. The antipsychotic helped a lot with the disordered sleep which meant mom was sleeping better, too.

Getting mom out of the house helped as well. Sometimes I'd cover her for appointments and I often took him to his low stakes appointments for her. If you could offer your dad an afternoon or evening weekly to catch a break or offer to switch places for an overnight so he could sleep, that would be helpful I'm sure.

HB

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