Who Get's to Decide?

You want what is best for your parents, and you worry that they need additional help.  Your parents believe that they’re managing just fine on their own.

So, Who decides?


First of all, you need to consider whether your parents are cognitively well and capable of making sound decisions.  A “sound decision” is not necessarily a decision you agree with—two people of sound mind can arrive at different decisions!

 

 

Capacity to make decisions is based upon someone’s ability to understand the choices with which they are faced, and the consequences of their decisions. 

 

For example, as an adult with capacity, you are aware that your chance of winning the lottery is very limited, and yet you choose to spend your hard earned money on a lottery ticket. Someone could say that is an unwise decision because the consequences are not in your favour; however, you understand the risk involved and the likelihood that you will not win.  The reason that minors are not permitted to gamble is that they do not fully understand the consequences of their decisions.  As a capable adult, you are permitted to make decisions that others might judge to be unwise, but it is your prerogative to do so.


Your parents have the same right.  If they have the capacity—meaning they understand their options, and they understand the risk associated with those options—they are entitled to make decisions. 

 

My parents won’t face reality — they won’t decide anything!


While it might appear that your parents aren’t planning because they aren’t changing anything, they might just be sticking with the status quo because they aren’t aware of all possible options.  You feel that your parents require more help—have you suggested various sources or types of assistance?


It is possible that your parents view the decision as a dichotomy—living at home and “getting by” as they always have, versus complete institutionalization in a nursing home.  While these may be two possible options, there is a myriad of other options that fall somewhere in between!

 

Help educate your parents on some of the options for assistance that won’t feel like such extremes.  If your parents are cognitively well, it is their right to choose the type of care that they feel will best meet their current needs. 

 

Engaging your parents in the research and ensuring that they feel in charge of their own decisions will ease the process.  When your parents realize that you’re not just trying to force them out of their beloved home (as so many seniors fear!), they might be more open to alternate care options.

 

To start your research journey, you can learn about some homecare options that emphasize health and wellness.

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Collecting versus Hoarding

Your parents recently moved into a retirement home and you were relieved they’d now have three proper meals per day. With your mother’s progressing dementia, she hadn’t been cooking for quite some time.

 

There's only one problem.

 

Your mom has been bringing her purse to the dining room where she stashes extra food!  She takes it back to their room and hides the food and you’ve been finding it in various states of science-experiment decay!

 

 

What is happening?

In the past, this might have been called “hoarding”.  But “hoarding” has a negative connotation and is quite different than what is happening to your mom.  A more suitable term might be “collecting”.

 

Her new behaviour is not unusual and it makes sense when you consider what is happening in her brain. 

 

The drive or instinct to gather is a hard-wired human instinct.  Humans have been hunters and gatherers for millennia.  We have the instinct to gather food beyond what we immediately need to prepare for future hunger.

 

In modern society, most of us are blessed enough that we don’t have to worry about our next meal. With 24/7 grocery stores, we have access to food at any time.  But for your mother who has dementia, that option is not as viable.

 

First of all, she likely grew up in an era where stores were not open 24/7.  Secondly, she may feel particularly vulnerable that she has no way of accessing food at any given time—she likely cannot drive, she likely wouldn’t know how to get to the closest grocery store, she might not even have access to money to purchase food.  Her instinct to gather food that is available actually makes perfectly good sense.  She is gathering food because she doesn’t know where her next meal is coming from.

 

“But wait!” you say. “She has three full meals daily with access to a coffee bar that has muffins and cookies and fruit—she’s never left hungry. Of course, she knows where her next meal is coming from!”

 

Your response is perfectly logical.  Remember, though, that her brain’s ability to be logical is diminished.  If she has dementia, she may not remember yesterday clearly enough to remember that she did, indeed, receive three full meals.  She can’t use yesterday’s experience to reassure herself that she will likely receive three meals today.

 

From her perspective, she is suddenly in this new place that doesn’t yet feel familiar.

 

There is no kitchen that she can see. She doesn’t recall the delicious dinner she had last night. No wonder she is concerned about where her next meal is coming from!  On top of all that, one of the deeper portions of her brain—the Amygdala—continues to send out hunger-gathering instincts for self-preservation.

 

Instead of considering her behaviour to be "hoarding" and problematic, understand that she is doing her best to provide for herself and meet her most basic human needs. 

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