Help with behaviors

MrsG7820

Hello,  very new but trying to figure something out so I thought maybe this would be a good place to start.

My aunt was recently diagnosed with dementia - something we suspected but then it was confirmed.  My aunt has always struggled with mental health, mainly depression and anxiety but it was managed.  Her younger brother is my dad and he has always acted as her caregiver.  She lives alone in an an apartment in a retirement type building.   My dad is the one who makes sure she gets out of the house, has her over for dinner, takes her to the store, etc.  She no longer drives and doesn't get out on her own.  

She has always had a strong, dependent attachment to my dad and I know it's because he is her her "person".  However, in the past month - this attachment is becoming unhealthy for her and as patient as my dad tries to be, it's honestly wearing on him.  She is demonstrating obsessive behaviors where she needs to call him and talk to him so much.  My dad tries establishing parameters or boundaries.  For example, "you can call me tomorrow at 4:30".  What happens instead is she ends up calling at 6:20am because she needed to talk to him.  If my dad explains he will be busy doing something so to call at a different time, she will call anyway because "she couldn't help it". In the event she cannot get ahold of him she calls my mom, me or my brother and then her sisters to ask if we have talked to him.  If we have bad weather, she begins to spiral with her anxiety because she worries she won't be able to get ahold of my dad.  These are all just some examples of what is taking place.

I talked to the chat line today and they recommended support groups and this forum.  So I wanted to start here and ask if anyone has experienced this with their loved ones and how did they help it.  I'm trying to provide supportive suggestions to my dad to encourage him to continue to be patient but I know he is struggling and I don't want him to be driven crazy or resent the situation in the long run.

Any ideas are greatly welcomed, thank you!

M1

Welcome to the forum.  She is probably not good to live alone any longer, and this may be the underlying source of her anxiety:  she's probably not oriented to time at all, so to tell her to call at a certain hour just isn't going to work.  Your dad may need to look at who has power of attorney for her (if no one, he may need to get it), or if there are other family members (does she have kids?), it may be time to talk to them about her living arrangements.  Your dad may just have to block or silence her calls for the time being.

Good luck--read a lot of threads and you'll find similar situations.  But the underlying problem is likely bigger than just the phone calls.

harshedbuzz

Hi and welcome.

IME, it's extra difficult when dementia develops in the context of long-standing mental health issues. Often what is typical dementia behavior- like shadowing- become amplified by something like pre-existing anxiety.

For your dad, who sounds like a real mensch, support and information might help him make choices to establish boundaries that allow him some breathing space while being there for his sister.

If you dad hasn't read Understanding the Dementia Experience, I think it's worth a look as it offers a nuanced description of the impact of dementia beyond the impact on memory considering things like loss of executive function, empathy and inertia. It was life changing for my mom who struggled with this behavior in my dad. 

12 pt Understanding the Dementia Experience (dementiacarestrategies.com)

Shadowing often has it's roots in anxiety and loss of the ability to reliably organize one's life (executive function), entertain oneself (cognitive shift and inertia) along with the losses of social filter and impact of one's behavior on others (empathy). Perhaps she is no longer included in her friend group and/or is spending more time alone because of COVID. Or maybe she no longer enjoys reading or can follow the plot of a movie and suddenly is at loose ends. Along the spectrum of dementia-related behaviors, shadowing is uniquely crazy-making. Your dad isn't alone- this is discussed a lot. 

Some solutions.

A few families have a dedicated burner phone for the PWD to call so that they don't have to take every.single.call. They record a personalized outgoing message to reassure the PWD that they are loved and will touch base with them soon. This allows the family to check messages once or twice a day and return calls when it suits them.

Often a PWD will accept a surrogate if their preferred person is out-of-sight/unavailable. Perhaps you and other family members could offer her a couple of hours of attention on a weekly basis to share some of your dad's burden.

A day program might help keep her engaged and entertained and lessen her need to reach out to your dad if she's still OK at home. But I would also question whether it is still appropriate for her to be living alone. Placement may be needed earlier with the mental health issues. 

HB

MrsG7820

Thank you so much!!

MrsG7820

Thank you so much!!