What the hell is going on? (Part 2)

If you haven’t yet read Part One of “What the hell is going on,” see that prior post to learn more about what dementia means.

So you suspect a loved one may have dementia. Here are the three things I would do first.

The most important thing right now is to get your loved-one with dementia (LOWD) to have the important conversations that need to occur, specifically about their care plan and wishes and preferences they may have. This is easier for some than others. You may want to watch the movie, Still Alice, to get a little understanding of what this may be like. These early conversations are important because they give the LOWD the dignity and respect of being a part of major life and care decisions while they still can.

There are many resources that can be helpful for you at this early stage. Here are two examples that we have here in Arizona.

EPIC – Early-stage Partners in Care – (http://www.alz.org/dsw/in_my_community_22265.asp)

CarePRO – Alzheimer’s Association + ASU + others (http://www.alz.org/dsw/in_my_community_19976.asp)

One of the smartest things you can do is encourage a trip to the doctor and get an early diagnosis (or understand what may be going on if it is not dementia). While there is no cure for the diseases leading to dementia, early diagnosis is vital in stacking the cards in your favor for the best possible scenario in care and medical management. It also helps you have the conversations and take the actions mentioned above.

Finally: take a deep breath, and have a come-to-reality moment with yourself and anyone close to the LOWD. Your loved-one is going to say things that don’t make sense, accuse people of doing things they have not done (stealing, trying to trick them…which gets difficult because strangers may actually try to take advantage at some point), argue with you about things that seem ridiculous, perform activities that seem odd, experience hallucinations, and a whole host of other strange things.

Click here for a list of common symptoms.

You MUST remember: this person’s brain is no longer functioning normally. The cells in the brain that allow for “normal” function are dead or dying. Their whole picture is becoming spotty and this can be very confusing or scary. But on the inside, this is still your loved one. They simply need a different kind of care and understanding now.

You must now think of this every single time you speak with them. When they say something to you that makes you want to argue back, be defensive, or react in a less-than-kind way, stop yourself. Do not take this personally – they are not trying to hurt you…they are scared.

There is a powerful book that I wish I had years earlier than I did. I recommend anyone with a LOWD read:

A Dignified Life: The Best Friend’s Guide to Alzheimer’s CareBy Virginia Bell and David Troxell

There are many ways to handle difficult conversations and encounters with this person…and this can be the most empowering thing to learn and exercise early. You’ll be looking at and talking to the father, mother, wife, husband that you know so well, and they will say something to you that is way off base, potentially rude or offensive. Do not react to the father, mother, wife, husband that you know…react to the person whose brain is being taken from them and who needs gentle, loving kindness.

And then…?

This is a process and it will take a lot of strength and courage. You’re starting to do the right thing by learning more. Just keep that up, do what you can, and don’t be so hard on yourself. One breath at a time. Your wellness is just as important as your LOWD. I will have MANY more posts on that.


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