When your parent has dementia

Of course, it could be a sibling or grandparent or spouse, friend... lots of things that can hurt. 

The lens I know is that of a daughter watching it happen with her mother. There was an aunt in Italy, but we only visited once during that, and it's just different. Nonetheless, when I send updates to my cousins, I know her son feels them differently than the others. 

The older ones also remember seeing it with their grandmother, but that's different too, even if there are things that overlap.

Also, while there are different types of dementia with different effects, the diagnoses are not always exact. My mother probably has Alzheimer's combined with some vascular dementia. 

The estimate is that one in three adults will develop dementia. 

That worked out exactly for my mother's family. Of the six who lived to adulthood, two of them got it.

That can raise chilling thoughts of your own susceptibility. I do think about that sometimes, but just dealing with Mom's is kind of all-encompassing.

This can also be an area where having family discussions are important, but perhaps not the whole family. A parent may be in denial, and the children need to talk together.

Denial can work in different ways, though. A common issue among siblings is that some will recognize the change and others will refuse to. It is usually the one who is closer and sees the parent more often who comes to terms with it first, but it's not just a matter of what you notice.

First of all, there are different stages, some of which can be quite subtle. Different people don't necessarily go through them in the same order. In addition those changes can be abrupt.

Some different stages we passed through were intact memories but unable to enter new things into short-term memory, able to stay on track if notes were left and meals were prepped, getting very weepy when left alone (I think because without memory working correctly, absence felt more permanent), constantly trying to get home (from home), and cheerfully telling long stories about things that never happened. 

This year has seen the loss of coherent speech. 

One thing that is important to remember is that it is not just memory. The hippocampus starts failing at processing new information, so it doesn't get forgotten as much as never entered into memory.

Some symptoms are more noticeable than others. That can make the denial easier, but so much of it is emotional. 

It really hurts when your parent no longer recognizes you, or is trying to get away from you so they can go to their children.

You are not going to be able to do what you need to do if you don't face it. It is so common for people to wander off, and they don't always get found.

I can give practical advice, like the importance of respite care when you are caregiving. Breakdowns and burnout are very real. A breakdown can be fixed fairly easily, but should still be avoided. Burnout lingers a long time.

I recently advised someone with some concerns to have her husband take a MOCA test. (Don't let the president give it a bad name.) If the test doesn't show anything it will be a relief, but if it does show something they can plan. There are medications that can slow the progress and that is worth a lot.

However, going along with this week's theme, there is a lot that you can't control. What ends up being the most important preparation is the person that you are.

How do you handle adversity?

How is your patience?

How personally do you take things that aren't really personal?

Those aren't easy questions, but good responses are useful under many different circumstances.