Being Flexible

Because their job is so important to them, care partners often get caught in the trap of having much higher expectations for themselves than they do for anyone else. Wallowing in guilt and self-blame, they believe that if they lose patience, or don't do something as it "should be done," then they have failed. Everything that goes wrong must have been their fault. If they'd just done it better, or differently, or more, or.... This is a setup for stress, followed quickly by the behavior and psychological symptoms of dementia (BPSD).

Being flexible helps you to let go of those unrealistic expectations and escape the destructive guilt trap by accepting what is. Being flexible allows you to stop using failures as badges of shame and see them as learning tools, reminders, and yes, warnings. It is a process that involves:

• Recognizing the problem or the failure, 
• Looking for the lesson, 
• Experiencing any guilt involved and making amends, 
• Worrying a little and looking for a better way,
• Taking action 
• Trying again and again
• Moving on.

Last night, George watched his favorite detective story on TV. Then I think he chased those bad guys all night long in his dreams. It was his favorite show...he's been watching it for years. -- Mary

• Recognize the problem. Sometimes that's easy. the PlwD expresses discomfort with BPSD. Often, it's less clear, as when the care partner is feeling overwhelmed. Sometimes it takes something serious such as a fall for awareness to come. More often it is simply a failure of some sort, like George's restlessness.

But I guess it is too exciting for him now. I know should have noticed this sooner. -- Mary

• Feel the guilt and look for the lesson. Guilt's job is to trigger you into expressing your concern to anyone you may have hurt (including yourself!) and to point out the need to try a different way. Then, guilt's job is over.

Oh, well, I guess I'm not perfect! -- Mary

• Forgive yourself. Be as compassionate with yourself as you would be with anyone else. Making a mistake, even a serious one, does not make you a bad care partner. Like Mary, you aren't perfect. You don't have to be! Love yourself anyway. This self-caring will be mirrored by the PlwD as positive feelings towards them as well as yourself.

I remembered that someone in my support group talked about using DVDs instead of TV and I decided to give that a try. -- Mary

• Worry a little and look for a better way. A moderate amount of worry can lead to constructive, thoughtful evaluations of the situation, and motivate a person into taking action. What can I do? Who should I ask? What are my options? Is this the right one? Can I think of anything better? What else can I try? Then worry's job is done.

I ordered some with some old programs for him to watch instead. -- Mary

• Take action. This might mean that you'll set up a plan of what to do later. Or it may mean that you'll do something right away. But there needs to be a feeling of "doing" involved, even if it is only making a decision to do nothing. This helps you to let go of the guilt and worry and move on.

The first one I tried he hated. Then I put in Andy of Mayberry. He likes it and it doesn't make him restless. -- Mary

• Try, try again. If the first thing you try doesn't work, try again. This is a big part of being flexible too.

We are both happy campers!-- Mary

• Move on. Once guilt and worry have done their jobs, it is time to let them go. All too often a person hangs onto these and tries to use them to control the past and future. "If I can't do anything else, at least I can feel guilty or worry about it."

Flexibility may mean lowering your standards. Your house doesn't have to be spic and span. The PlwD may not need a shower every day, and so on.

It's got so I realize that I need 24/7 care for George, but our finances are limited. I checked with the state. They will help if he goes into a residential facility but not if I keep him at home. I did my research and found a wonderful assisted care facility. The problem is that the state will only pay for a two person room. I had so hoped that George could have his own room. -- Mary

Flexibility comes into effect with finances too. Dementia care is expensive. Even with help from the state or other sources, you may not be able to afford what you really want. Don't let this stop you from getting the best help you can afford. You can seldom have it all. Mary may need to accept a two person room in a good facility. She just has to make the best choice she can with the resources she has and then let go of what might have been and move on.

An a different subject, we are exercising our own flexibility by moving to a twice monthly blog for the summer. We will be traveling and researching for blogs becomes more difficult. Expect blogs around the 7th and 21st days of the month.

We love and welcome comments but we will not print any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures.

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For 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

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.