Caregiver Insights
Dealing with Challenges
Caregiving Your Parents (Part 2)
Does any of this sound familiar? You care about your parents as they age and want to share precious moments while you can. When dementia arrives, you feel even more compelled. But dementia is something you never planned for, and you are not well prepared. There is more to caregiving than you ever imagined.
As parents become more dependent, you worry about them and are concerned about making mistakes as a caregiver. Their needs keep growing, and you feel mounting stress. With all that is going on in your life, you can never find enough time for yourself. When you go to bed, anxiety goes with you. Then, there are the harder times when your parents object to decisions you feel must be made. And there is no way to reason with them. When they’re in pain, it’s even worse. You feel overwhelmed. Dementia has not just interrupted your life, it seems like it is taking control.
You wish you had more support from other people, but you feel isolated and alone. You are sad and upset, sometimes even angry. This has affected your relationships with your mate, your children, your siblings, and your friends. And when you think about the future you are concerned that dementia may be part of your own life down the road. How will you ever be able to deal with that? There seems to be no escape.
If any of this sounds familiar, know you are not alone. But caregivers who have struggled along this journey have learned that there are ways you can make your life better.
What Experience Tells Us
The more you know, the better off you will be. The best way to gain practical knowledge about daily caregiving is to attend in-person support group meetings. Beyond being informative, they are cathartic. There is no substitute for working through challenges with others who are facing similar issues. Support groups can improve your decision making. If you are unable to go to meetings, this website is our attempt to capture topics often discussed. Three articles, “What You Need to Know,” “Stress,” and “Self-doubt” may be most helpful. But neither support groups nor this website can replace the technical knowledge that is necessary when you need authoritative answers to family medical, financial, and legal issues.
Changing Expectations
As dementia caregivers, we tend to view ourselves as problem solvers. That limited self-image sets us up for stress, frustration and fatigue. Dementia problems never stop and many are insoluble. While these problems cannot be ignored, our most important role is to become care companions and to connect with our loved ones beyond problem solving. What they crave more than anything else is the warmth of personal engagement. We care about our loved ones, and when we channel our energy into really being with them rather than taking care of them, we are providing love and connection. That is our most important role.
The advantages of redirecting our thoughts and energy away from problem solving and toward connection are equally beneficial for us. We want and need the fulfillment of living meaningful and purposeful lives. Nothing is more satisfying than knowing that we are making a positive difference for the people who are closest to us, particularly when they are vulnerable.
Perspective
When your parents are living with dementia, they are living in the moment. Empathy has been reduced or set aside. It will be helpful to you if you reflect back on what your parents’ hopes and dreams for you were years ago. As they looked to the future, did they want you to be worried, concerned, stressed, and anxious about them. Not likely. It will be helpful for you to remember this when you have to make hard decisions that you know are right but are difficult for them now. This is important for you to remember when you need more time with your family, even though it takes away from your time with them. Your parents don’t own your time, you do.
Communication
Some problems that come up must be addressed head on, but many can be sidelined by diversion. Develop a mental file of subjects, memories, and stories that you know make your loved one happy: events from their youth, times you shared together, anything that will put a smile on the faces. These come in handy when you want to divert attention from problems that are troubling them. You want the time you spend with them to be as joyful as possible, and that will often be by recalling good times from the past.
Outlook
Caregiving is difficult, and being a caregiver for parents is especially challenging. Success comes from helping parents feel safe, respected, comfortable, and connected, perhaps best summed up in one word: contented. We cannot fix dementia or change the outcome. But with a clear understanding of our priorities, we can meet their needs and feel good about ourselves along the way.
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