LBDA

Identifying the Enemy

by Pat Snyder

When a catastrophic diagnosis hits your family and you become a caregiver for a close family member, you are likely overwhelmed on a number of fronts—emotional, physical, and financial. This happened to me when my husband, John, was diagnosed in 2007 with Lewy body dementia (LBD), a combination of dementia and Parkinson’s disease and the second most common form of dementia.

Identifying the enemy in your new role as caregiver is vital to handling it well and not being consumed by it. So who or what is your enemy—and who is not?

Many folks run into relationship problems soon after becoming the primary caregiver. This may occur when family members disappoint you by not helping as you had assumed they would. It may also happen with medical professionals who are not up to date with the most effective methods for treating your loved one. Regardless of how it may feel at times, these folks are NOT your enemy.

Your real enemies are the disease itself, stress, and guilt. Let’s look at these one at a time.

The Disease

The disease is easy to identify as an enemy. It is hurting your loved one. Learn everything you can about it, especially the stage of it that you are currently fighting. What are the best available treatments out there? Are they offered where you live? If not, then where? Is it worth it to participate in an experimental program if current treatments are not working? Can you schedule medications in a better way to reduce side effects and negative interactions? Are there triggers which may make the symptoms worse?

Researching these things and connecting with other caregivers are appropriate and proactive steps you can take to help you feel more in control of your life again. Become an expert on this disease. Partner with all the medical professionals as coach of the team for your loved one. The more you know, the more respect you will gain. And move to another doctor if you are not respected and heard by the current one. Good ones are out there; you just have to hunt for them.

Stress

Stress is the subtle, sometimes deadly enemy that many caregivers do not recognize. I have become convinced that controlling stress is a key to managing effective caregiving. Everything works better when stress is minimized. Learn to sense the presence of stress. Then learn how to neutralize it.

My first tip for stress control is one that has worked for me over and over again.

  • Choose the lesser stressor when there is an option for how to do something.
  • Set your internal radar to sense stress in its many forms, such as hurt, fear, worry, or frustration. Use common sense techniques to lessen its power over you, like naming the feeling out loud or taking a couple of long, deep breaths.
  • Get counseling and learn more stress reduction techniques.
  • Pray and connect yourself to praying people who will support you.
  • If you are cramming too much into your day, streamline your schedule. Simplify. Learn to say, “No.”
  • Focus on the here and now. If you can stay in the moment, you will find that your stress level drops significantly.
  • Eliminate people from your daily routine who are negative or draining.
  • Prioritize what you need to do in your day, choosing the important over the urgent when you can. Then work that plan.
  • Laugh every chance you get. Be with those who bring you laughter.
  • Make time for yourself to recharge your batteries.
  • Exercise.
  • Organize your financial matters to simplify when and where you pay your bills.
  • Work with your pharmacist to get all prescriptions filled on the same day of the month.
  • Pay for what you cannot or should not do yourself or find someone who will volunteer to do them for you.
  • Leave guilt behind.

Guilt

Guilt is the other subtle and sometimes deadly enemy for many caregivers. When you are giving all you know how to give, you simply must let yourself off the hook. If you think about it, what is the payoff for feeling guilty? I cannot think of one thing in this context that is positive or productive about guilt. It definitely does not make you a better caregiver! But it surely can make you a worse one. Since it drains you of energy, you will have less to give, which will only make you feel guiltier. So recognize it for what it is—a trap and energy drainer—and then tell yourself that you are not falling for that trap. Period. The only exception to this is if you are doing neglectful or hurtful things that cause unnecessary pain for your loved one.

It may help you to have a trusted person or two in whom you can confide and who will give you feedback about inevitable choices you will be forced to make in your caregiving journey. Listen to them. They will help you to know when you are beating up on yourself and falling into the guilt trap.

If you can master these three enemies, even in part, you will feel more peace and more satisfaction in your caregiving season. And you will be better able to see it as just that—a season that most people will experience at some point in their lives.

Pat Snyder is the author of Treasures in the Darkness: Extending the Early Stage of LBD, Alzheimer’s, and Parkinson’s Disease. You can find her book on Amazon.com.

If you would like to share on your experience with Lewy body dementia, please contact Diedrea White at dwhite@lbda.org.