Caring for a Brain Illness Patient: Ten Ways to Accept Their “Purple Jellyfish” World

Walking down the beach one day I found a purple jellyfish. Technically, it looked more like a big purple blob, but it wasn’t a man-of-war and wasn’t like anything I’ve ever seen in my years of exploring different beaches. Yet there it was, staining the beach purple. Simply put, just because I’d never seen one before didn’t mean it didn’t exist. So, how can this help the estimated 15 million Americans that are caregivers for dementia patients?

None of us have the ability to read another persons mind. Those of us with fairly normal thinking tend to look at things in black and white. We call it face value. We’ve learned to form expectations. We work within social norms. When someone you love has a brain illness, things are no longer in black and white—or maybe even in gray. If you can turn your focus away from the black and white, there are other colors to focus on. You just have to find the colors, and they may not be as evident as black and white.

I think what made Neysa Peterson (the co-author of my two books on brain illness) so effective with her husband Jim was her ability to step away from the world of normal. For a person without a brain illness, that takes real talent. Neysa would often find Jim talking to himself in the mirror. He thought there was another person in there. Jim wasn’t frightened of his new friend. In fact, he could even reason through the way that the other man got out of the mirror (the back way through the closet). Jim’s actions didn’t surprise Neysa; she merely accepted it as part of his world.

There’s one more thing you need to know about purple jellyfish— they can sting. In the later stages of Alzheimer’s disease, patients may have frequent outbursts. Verbal displays of anger may include screaming, shouting, swearing and making negative comments. Physical outbursts might be as simple as throwing things, or might be much more aggressive. You can’t respond to the anger with anger. It may require a lot of tongue biting or walking away (at least for a few minutes). Being prepared for the anger will make life a little easier. As long as your safety and the safety of others isn’t a factor, finding ways to guard your heart against stinging words and behavior may be sufficient to prevent the pain from being too severe.

Because dementia patients can live up to 20 years with the disease, there is no way of knowing how long and extreme the changes you’re facing will be. They may be a small wave that you will barely feel, or a tidal wave. Changes in personality and behavior may include loss of social inhibition, irritability and anger, memory changes, and so forth. These changes may require that you change, too. Anticipating the change and understanding why it has become part of your life has the potential to make your journey less painful for you, your family, and your care receiver with a brain illness.

As you go through changes and unexpected experiences with your care receiver, allow yourself to be free of social strictures that may very well have ceased to exist in the world of the person you feel that you no longer know. Freeing yourself of the bonds of the past will allow you to expose yourself more freely to the world that your care receiver enters—the land of purple jellyfishes, where we must learn to expect (and in many ways accept) the unexpected.

Here are some suggestions:

  1. Journalize what works and what doesn’t work, so you can develop patterns of effectiveness.
  2. Create a soothing and comfortable environment for your care receiver and for you. Prepare a “safe” room for the patient that is focused on things that they like and feel safe around.
  3. Effective communication includes listening, interpreting, understanding the underlying emotions, identifying the need, and reassuring the patient through validation of their feelings.
  4. Every single day your patient may be different than he or she was the day before. There will be days of clarity, and days of not so much clarity. Expect the unexpected; appreciate the good days, and patiently work through the bad days.
  5. Meet your care receiver in their world. Identify where he or she is today, and try to find joy with them there.
  6. Reasoning usually does not work. This may often lead to frustration for both of you, because he or she may be unable to follow lengthy explanations.
  7. Regroup rather than repeat. If the listener doesn’t receive the message the first time, they’re not likely to understand it exactly the same way the second time.
  8. Never chastise or put down the patient. They’re not children, regardless of their brain issues.
  9. Remind yourself often that you are only human, and therefore imperfect.
  10. Keep loving the patient for their differences—not in spite of them.

More from Joni Aldrich

Excerpts for today’s article came from both of Joni’s books on caregiving for a brain illness patient – available at Basket of Care (www.BasketofCare.com):

Connecting through Compassion: Guidance for Family and Friends of a Brain Cancer Patient: Co-authored by an expert on brain illnesses, this book contains information that every brain cancer caregiver needs.

Understanding with Compassion: Help for Loved Ones and Caregivers of a Brain Illness Patient: Also co-authored by Neysa Peterson, this book contains information that every caregiver for a dementia, Alzheimer’s disease, or stroke patient needs.

Would you like to send something special to someone who’s going through a health-related hardship this holiday season? Instead of a poinsettia or fruitcake, why not send them a Basket of Care (www.BasketofCare.com)? These baskets are lovingly designed by a cancer survivor and chock-full of items that will lend comfort. Or what about a “Day at the Beach” basket for a child who is ill? A Basket of Care is just the right way to show you care over the holidays.

 

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