Denial about diagnosis

Traci M

My mother has recently been officially diagnosed with dementia. All she knows she is having some memory problems, but testing reveals that she’s functioning at a very low level, and I concur. She denies there is a problem, as does her husband. How do I talk aboutThis with her in a way that will open her mind to getting some help in the home?

ButterflyWings

Hi Traci M and welcome to this wonderful group that we wish did not have to exist.

Your mom's husband may be in denial. She, however, probably is not. She is likely to have anosognosia, which is very different from denial. If she is like my DH and many others, she literally can't process or grasp that there is anything wrong. It is part of the brain disease when this happens, so she's not refusing to admit, or denying, or delaying facing the truth. With anosognosia, our LOs are completely oblivious to what we can easily see and begin to understand. So, we have to let that expectation go, or we can stress our PWD out so much, unnecessarily (trying to get them to see something they just cannot) , that it makes it harder for everyone. 

6 Ways to Help Someone Who Doesn’t Know They’re Ill: Anosognosia in Dementia – DailyCaring

This other article may help you, her husband, other family and friends. Good luck to you. It is a tough road, but many here are navigating it better than expected, and we come here to share our experiences and what we've learned...so it might help others. It so often does!  http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

harshedbuzz

Traci-

I am sorry you have reason to be here, but happy you knocked on the clubhouse door.

Butterfly is correct; mom likely has anosognosia and can not appreciate that she has declined in any meaningful way. To suggest otherwise is, in her mind, gaslighting. 

It is almost always best to just avoid discussing memory loss in any context. If activities must be stopped because of safety in the context of dementia, you create some palatable narrative aka "fiblet" that ascribes blame elsewhere so you can be her ally and advocate. 

Dad on the other hand could be cruising the Egypt's famous river. My mom did. And for a very long time. Helping a spouse get past denial can be critical for care and safety. 

Denial comes in lots of ways-

For some, the denial is just a time lag in accepting a diagnosis. It's a different experience when the LO is a spouse vs a parent; we sort of expect our parents to get old and sick at some point. Time and progression generally work at correcting this.

It could be denial at the implications of the ways in which the disease also impacts the partner- the loss of their intimate relationship, companionship and of the retirement they'd planned not to mention the expense in terms of isolation, finances and physical and emotional labor.

Sometimes denial comes from a misunderstanding what dementia is- many people think it's "just forgetting things" and they'll take comfort in knowing that while their spouse doesn't recall what they ate for breakfast, they know their childhood street address.

Sometimes there's a unique power balance in the relationship where the alpha is always "right" and if they say this is a normal part of the aging process, the beta goes along. 

And then there's always the special horror of parent-in-denial suffering their own cognitive shift and transitioning into dementia. Because every PWD presents in their own way, sometimes a spouse who is less far along can fly below the radar with behavior written off as stress or depression.

HB