When Nothing Seems to Work, Part 2

Last week started a series on dealing with difficult behaviors. That blog noted that the first line of defense has to be the care partner's own self care. Only then can you expect to a) respond appropriately to your loved ones unwanted behaviors and b) avoid having your loved one react to your underlying and stressful feelings instead of what you are doing and saying overtly.

This week's blog is about how while dementia changes many things for both the person living with the disease and their care partner, not everything changes--or it only partly changes.

A person living with LBD (PlwLBD) is usually just a more difficult version of the person they were before. Likewise, the relationship you had with your loved one will likely be similar to what you had before, only there will probably be more negatives and these will be more extreme. That's because the dementia-riddled brain:

• is one track, going first with the most demanding emotions, which will usually be negative.
• processes in an all or nothing mode, so that any negativity at all will likely be exhibited as extreme.

We know a young couple who have a very stormy relationship. It cycles from angry arguments to passionate make-ups and back again. This works for them--now. Both of them would tell you that they are married to the love of their lives. "It keeps our relationship interesting and fresh," they say. Even so, I dread to think how that couple would fare if Lewy entered their lives!

Another couple we know are just as committed to their spouses. However, their relationship is much less bumpy and exciting. "We enjoy each other. We have our differences but we can usually talk it out," they say. This couple would probably be able to deal with Lewy much better.

Sadly, dementia multiplies the negatives in a relationship and often ignores the positives. It's the way the brain works. Negatives are given crisis status and therefore are the first to be noticed. That's fine as long as a person can think abstractly. Then, we can look past the negatives to the positives and see that they outweigh the bad. "A person with the ability to think abstractly might say, "I don't like the way my life has changed, but I still have many things to enjoy." The dementia-damaged brain can't do that. It stops with the first information it receives -- "I don't like the way my life has changed."

Even with help, the PlwLBD isn't going to be budged. This is their truth, their reality. Loving, patient explanations aren't going to change that. Angry, frustrated responses will only fix it firmer in place. All your efforts will do is cause your loved one to believe that you don't care and aren't even trying to see it their way--the only way.

Successful dementia care requires huge amounts of empathy in care partners. With it you can enter into a PlwLBD's reality and have a chance of useful communication. On the other hand, dementia takes away the PlwLBD's ability to empathize and so this isn't a two-way street. Don't expect a PlwLBD to understand your frustration, your fears, your worries or your hurt feelings. Instead, they will pick up the emotions you broadcast and mirror them back at you as their own anger and frustration--with no recognition of your feelings and no need to help you feel better.

Back to the couples mentioned earlier, the first couple dealt with their differences by fighting about them, with very little empathy for each other. The second couple made an effort to empathize and come to a mutually acceptable solution. If Lewy hits, empathy is going to go a lot sooner for the first couple than it will for the second couple. Again, what we were is what we get with Lewy, only worse!

The moral of this blog might be "Work to have positive, empathetic relationships while you are healthy because that becomes even more important--and more difficult--when illness hits! Of course, most of those who read this will be beyond the ability to prepare...you are already in the midst of dealing with the damage dementia causes! But all is not lost. Although the PlwLBD is beyond change, the dementia care partner still can. You can focus on being positive instead of broadcasting those volatile negative emotions. You can be empathetic and thus able to respond to your loved one's reality rather than your own.

Or you can if you've taken the first step and are making these efforts with a rested mind and body! But even then, nothing works all the time. It may not be because you "didn't do it right" but just because Lewy is being perverse and difficult. You just have step away, and then try something else...ask for help, ask for ideas.

New week, more about dealing the difficult behaviors and staying sane.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.